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just-a-tiny-ghost · 4 years

Text

The "tip of the hair” thing from anime characters.

We all know these characters who have funny hair color ranging from bright pink to sparkling white, passing by mysterious purple. It’s almost an unspoken rule not to ponder too much on the color of characters’ hair, because it’s so cool!

Here are some theories/possibilities on the reasons behind the tip of the hair!

(Please do not take any of these seriously)

Warnings: please do not take this seriously, fight scene, 5 scenarios within the theories, last scenario being just plain mean… (~4k words)

Characters: Kita Shinsuke, Kocho Shinobu, Yushiro, Tokito Muichiro, Yashiro Nene, Ishigami Senku, Akugatawa Ryuunosuke, Zenin Naoya

1st part: It’s naturally like this. “The ‘natural’ hair color”

It’s just like childhood blond people.

The people who are born blond, live through their childhood being blond and then, treason. Their roots start to darken, spreading the brown over the blond and they are no longer Primrose but Katniss. And it’s difficult, you know, to explain that they are blond because they are going through a strange phase where they no longer know the color of their own hair (*sniff*, just kidding).

So, it’s just like this, the roots are brown but often the tip of the hair is of a lighter color (blond, even ginger in certain places). You take this, and you reverse it, making so that the roots are lighter, and tips are darker.

Example: Kita Shinsuke, Haikyuu

Here you have baby Shinsuke, with the same natural hair color as when older.

(psst, imagine also if during summer his hair darkened more, just like people have them more blond).

It’s a new kind of molecule. (Part 1)

There was a mutation, the melanin mutated help! Other than the eumelanin (dark/brown) and the pheomelanin (red/yellow), another one appeared giving people crazy (cool) hair color! What’s more is that this one actually moves.

Example : Kocho Shinobu, Demon Slayer

Notice first, this beautiful purple. What do we also notice? The ratio and the defined line, just as if all hair should go from black to purple at the same exact point.

This is NOT a coincidence; this molecule can travel. I will explain that; so, we notice that younger Shinobu’s hair are shorter than when she is 18/19. However, as her hair grow longer there is more purple that is appearing? Shouldn’t there be lesser purple? No and we can thank this new, heroic molecule.

New systems developed inside the follicle, and they can sense, perceive the ratio of the colors. As the hair grow longer, more of this molecule will be created and sent to the extremity of the hair, allowing Shinobu to always have the same black/purple ratio on all the affected hairs, which explain the clear line as they are roughly the same length.

It’s a new kind of follicle. (Part 2)

And a lazy one at that! While working efficiently at the beginning, it soon becomes so lazy that it thought about just letting the regular black/brown/ginger/blond color instead of continuing working hard to color the hair a beautiful shade.

Example: Tokito Muichiro, Demon Slayer

(In his case, the follicle just forgot)

The Marie-Antoinette syndrome

The Marie-Antoinette syndrome is when someone hair suddenly turn white due to an intense stress.

The name came from folklore about the hair of Queen Marie-Antoinette of France (1755-1793), who during the night before her execution by guillotine, had her hair turn white in her cell due to stress.

The Marie-Antoinette syndrome could have had another name as Thomas More in 1535 also had his hair suddenly whitening the night before his execution, there were several cases of the syndrome throughout history, but no research suggests that we can lose hair color overnight. Yet, stress do cause hair to whiten, not overnight, but progressively.

Example: (well, might as well go with the same manga) Yushiro, Demon Slayer

I’m actually pretty sure this is due to stress as before meeting Tamayo he was sick and he may have had a time where all his hair were black, but the stress just came back when he realized how much he loves Tamayo and how many potential rivals he could have (lol). (assuming his hair continue to grow, but we know it’s not *sigh*)

So, this was all for now for the “natural” hair color part. Now, just imagine them just after they cut their hair.

You tilt your head sideways, examining Shinsuke’s hair while sipping your juice from under the shadow of the peach tree.

The sun was scorching, obliging him to wear his hat while gardening but not preventing you from taking sneak glances at his new hairstyle —diligently cut by his grandmother— the missing black color at the tip of his hair still slightly disturbing you.

When you saw him that day, your accustomed-to-seeing-him brain went into a frenzied panic assuming a non-existing threat from the sudden change in the pattern of his hair. You, without having a choice, followed behind this archaic brain of yours, metamorphosing into a stuttering, eyes-avoiding mess when your heart won the fight with your brain and decided that this would fluster you.

The day was spent in his bedroom, playing with his hair sometimes brushing them in the opposite direction, their straightness prickling your palm sometimes just rolling a strand between your fingers, eyes prying for even the tiniest spot of black leading you to conclude that they had all been cut off.

Your view of your boyfriend is suddenly blocked… by the face of said boyfriend. The blank stare on him was too much, as it was all he saw whenever he turned around to check on his resting girlfriend, leading him to come nearer.

“Hey, are you feeling all right?” He approaches his hand to you head, brushing your baby hair out of your face. “Even with a hat and sunscreen, maybe the sun was too strong? We can go inside and rest if you want to.”

You pull him to sit next to you, taking his hat off by the process and raising your head to scan the sky through the branches and leaves protecting you both.

“Nah, I’m okay,” you reach behind you and dive your hand in the cooler, grabbing a cool bottle of water, “you should drink a little though and we have to go back soon granny is going to worry, and I don’t want her to come outside to search for us in this kind of weather.”

You battle a little bit and screw off the cap to hand the bottle to him, which he takes and grace your fingers with a kiss right after.

“I am still not used to not seeing the black tips in your hair. Sorry I was staring,” you apologize.

He laughs it off, internally relieved that you were not mad or rehearsing a prank forged with the twins in your head.

He still had some influence on them and intimidating them was not a problem. He also could retaliate without an ounce of guilt.

But while he could scold you —it is fun to see you being apologetic and trying to be forgiven, your pranks were rather mild too—he could never be mad too long, as your pranks were just, well kind. If the twins are not involved.

“I can understand. Look at me as much as you want, I’m here for this as well after all.” He stands up and pulls you up after closing and putting the strap of the cooler on his shoulder.

“Let’s go home.” And you follow him, carefully placing both of your hat to protect you from the sunrays.

“Wait a little bit and you will see; the roots will grow black at first and it will soon be as usual.”

“Really?!”

Three days later, his hair was green, courtesy of the twins giving you ideas.

2nd part: It is not natural.

Well, we could just say, it’s the power of something that made it like this bla bla bla (well, I mean it’s the author who chooses).

But nah, it’s no fun if we do not make theories! Because the world is… *whisper* conspiracy. Let’s forget the wig too for now.

Well, let’s start with something basic: it’s simply dyed.

Maybe the characters just thought it was cool to have them dyes like that and this could work for a lot of them, even in the less recent times as people started to dye their hair even 1500 BC. 300 BC prostitutes in the Roman Empire already dyed their hair blond too, using ashes of burned plants or nuts and in 2014 artificial-looking hair color became a trend! (https://www.byrdie.com/hair-color-history)

Exemple : Yashiro Nene, Toilet-bound Hanako-kun

Nene-chan obviously is a hopelessly romantic teenager, and I am sure that she wants to follow trends just like she wants a boyfriend for the sake of, well, having a relationship at the beginning of the story.

So, pretty sure that with Aoi’s influence (she has the real power… help) they decided to dye the tip of her hair green in middle school.

(psst, PS: Aoi also tried to dye one strand green but her hairs were too dark, we can only distinguish the color when focusing)

(re psst: Akane directly noticed it).

Okay, a little funnier now. It’s because of an experimental failure, so a new kind of chemicals.

Example: Ishigami Senku, Dr Stone

So, we know that he is a science nerd. And we know that he experiments a lot. Let’s just imagine mini-Senku, seeing his father and wondering why the hell does he resemble a radish?

Then, mini-Senku trying to synthesize a greenish hair dye (because he wants to look like a leek), but failing, not because it doesn’t take the color, but because it stays.

Do you know what’s even funnier? He failed it when he was young, like ridiculously young (he is in first grade here, so 6/7 years old and already a fan).

So just imagine 5/6 years old Senku, just having his hair up and green one day and he understands that they will always be like this.

It’s due to their power <3

Maybe kind of a side-effect of their power, we could think of Todoroki (Shoto) whose fire side have red hair and white in the ice side, so simply a cool consequence of cool powers.

Example: Akugatawa Ryuunosuke, Bungo Stray Dogs

Okay, so this is cannon, I’ve decided so. We all know he was poor, but like slums poor so he could just not afford to buy hair dye also there is no point in doing so.

BUT! During one of his fight, it happened. Rashomon ate the melanin at the tip of his hair. And since then, he decided it was cool and will keep it like this forever.

Scenarios! (･ω<)☆

“A-are you sure it’s like that?”

“Of course, it is, just trust me Nene-chan~”

They were clearly messing things up. The shower curtain laid there, ripped off its place, soppy and stained green at some places.

The sink, crowded with various face products, hair accessories, nail polish and a myriad of different-colored eyeshadows from just as much different pallets. Clothes lingered on the floor, creating little mountains of fabric and you were wise enough to avoid stepping on one in fear of being stabbed by a lost hairpin.

In the middle—rather the left corner—of this mess stood your two friends, the stool having been knocked off by a panicked Nene made you worry about her tripping on it. Facing her was a smiling Aoi hands stuck on too-big plastic gloves and a bottle of hair dye in her hands.

“I thought I told you both to wait for me,” you sighed. “Here Aoi-chan, gimme the bottle and the gloves. Nene-chan, catch this.”

You threw your package to her, which she missed, and the cloth unfolded revealing the cape you borrowed from your father’ barber shop. You hanged the curtain up again and went back to the now wearing the cape Nene— you just named teepee-Nene.

You slipped on the gloves and verified the mixture they prepared. Deeming it good and usable, you began to separate the strands of Nene’s hair, clipping some up and untangling some burdensome ones.

Then, as she already applied the protecting product, you began to spread the dye on her tips, visualizing the lovely ombré she wanted.

From the corner of your eyes, you noticed Aoi growing bored by each new stroke of brush.

“Do you want have a dyed strand too? Though it could not take well because of the color and the washing you just did,” you offered.

“Yes!” she eagerly accepted, immediately pointing at a random point on her head. “Plus, we can trust you at one hundred percent!”

“Of course,” you chuckled, “I am used to do this.”

“You did most of your colors by yourself, yeah?” Nene asked.

“Yup,” you confirmed. “But my parents were okay with it, were almost encouraging me to do so, bleh. Contrary to some middle-schoolers I know.”

You yelped, escaping from Aoi’s traitor finger that just poked your side. Nene grinned, “Well, as miss high-school first year helped us, you are an accomplice. Don’t think you can escape being punished with us, (Y/n).”

Shaking your head, you went back to her, lightly pinching her arm through the cape and focusing on your task with the girls’ chatting serving as your background noise.

_____________________

“We should dye your hair too, (Y/n)!” The girls’ eyes sparkled.

“No do so kids.” You discarded the dye bottle in your hand. “The dye doesn’t work anymore, should have requested this sooner.” Ignoring their complains, you walked out of the bathroom, walking to the kitchen for some snacks.

It was an ordinary day at the Ishigami household. Byakuya had checked his list, little shoes at the entrance, check. Clean living room and table, check. A walking Senku-sized mop, check. Groceries for dinner, check.

Byakuya turned around, checking again. Ah, he forgot the yogurts. Would it be weird to go back to the convenience store? They could skip yogurts for once, it wasn’t essential. What was important, however…

“Senku!! What happened to your head?!” He dashed to his son, grabbing his shoulders. “Did you get hurt? Wait you didn’t actually dive into a suspicious liquid right?” He paused. Then thought. He stared at him. “No, even if you want to test something you can’t just bath in it.”

Senku stared right back at him. And bonked his head.

“No I didn’t, I’m not stupid,” he reassured his father. “It’s hair dye,” he pointed out.

“Aah, I see…” He patted his hair before standing up. And tossed the child on his shoulder while ordering, “We are going to wash it away, immediately.”

_____________________

It wasn’t right. It didn’t go away.

“Why is it still stuck?!”

“I don’t know!! But stop, I’m going bald!! Help! He is trying to age a child! Human experiment!”

“I’m not, it doesn’t want t-oh, it’s disappearing.” Indeed, the water was now tinted a green color after streaming through Senku’s hair.

Byakuya sighed in relief. “Luckily it’s going away,” he started, “though it’s seems the tips already took the color in.”

Head down, Senku wrung out his hair and broke in a smile while confirming by himself Byakuya’s affirmation. “Yeah, I started by dyeing them first. Wanted to look like you.”

Byakuya froze. ‘He wanted to look like me?’ He glanced at his reflection. ‘I do have two hair colors.’ He grabbed a towel and spoke, “But you know, it’s not good to dye your hair this young. Come here, I’m gonna dry them.”

The child’s hairs were still thin, but the long strands would thicken later with no doubts. Byakuya was wary of his own strength too, as a child’s head remained fragile looking, Senku was still five after all. But this wouldn’t prevent him to mess with it a little bit.

Taking the hairdryer and a hair comb, he disentangled some knots here and there, added hair wax at each strand he lifted up until they were all up and with a radish-like form except from a tiny seaweed at the front.

“Tada! Here is my masterpiece. Keep it will you?” He ran away. “I’m going to the convenience store; I forgot the yogurts!” he shouted. “Tidy the bathroom up for now, thanks!"

_____________________

“What they didn’t know though,” the narrator started, “is that the chemicals would keep him looking like that, proudly wearing the same hairstyle 3,700 years later, a unique hairstyle, a relic from the modern era they knew.”

Akugatawa was in a dire situation. A kind of situation he had been in plenty of times but could be the last one he lived through just like all the other ones.

The enemy was strong, not physically exceptional, but having grown enough muscles to defeat three or four kids like Akugatawa attacking him together.

It wouldn’t be a problem, for he was blessed with Rashomon, if only the man he was fighting wasn’t an ability user as well.

The worst, being that he didn’t underestimate him nor was he stupid as he cleverly used all the aspects of his ability, taking each openings Akugatawa dropped by inadvertence, creating numerous opportunities from them and further damaging the child’s body each time.

Akugatawa was certain now, that his enemy couldn’t be taken lightly and though it was pointless to ponder on this now, as he didn’t know if he would survive this fight, he was concerned on why someone this strong would be going after him.

The answer to his questioning could be a threat to his relative safety, as well as his sister’s and the other children’s.

He dodged, the outline of the shadow almost piercing through his head, its razor-sharp edges flaunting death in front of his eyes.

After many failures, he finally began to uncover the trick to resist the unknown ability. The man had been sending his shadow after him for some gruesome minutes now and Akugatawa recognized some patterns, his body learned to dodge and bend to escape even one blow.

But his knowledge stopped there, he couldn’t pinpoint how to stop the enemy, how the ability worked.

All kind of ability had some king of mechanism, he learned. His depended on his clothing as the beast was formed from it. If put naked in front of an enemy, he would be dead meat; separated from any kind of fabric he was just as vulnerable as he was as a newborn.

Yet, even when having Rashomon by his side he was struggling against the stronger, the more experienced ability user.

While the origin of the enemy’s weapon was his obviously shadow, he had no ideas how to make it disappear nor did he know how to stop the connection between the user and his shadow.

He blocked an attack—at least Rashomon could touch it—and the beast’s fangs tore through the black foggy blade making a bee line to the enemy’s neck.

From under him, the man defended himself. This action cost him his life as Akugatawa found his long-awaited solution.

Another attack, not from the ground—he learned that when closer to him, the enemy could raise his shadow as he wanted—but from above him.

He lifted his head; the tip dangerously close to him.

It allowed Rashomon to successfully break the crystal hidden underneath the layers of shadow, the blade shattering apart the moment the crystal was damaged.

Now that he found out the way to get rid of him, Akugatawa could unleash his beast and let it freely destroy the destabilized enemy in front of him.

_____________________

The enemy was gone and Akugatawa staggered to his home, the distance being longer than what he recalled. Having reached the entrance, he collapsed on the ground after seeing his sister quietly waiting for his return.

He woke up some hours later, the night had installed itself in the sky.

Something was strange however, as his sister was staring at him, eyes sparkling. He wondered why until she pointed at a strand of her hair that was framing her face and taking it, pushing him to mirror her actions with his own.

Indeed, where the black melanin was supposed to be, was now hairs devoid of color and white like an old man’s. His gaze trailed up to find out only the tip lost its color, the pattern where the colors met looking like sharp teeth.

“Big brother,” Gin started, “could you do the same for me? I want white tips too! And you must do the same at the other side, it would be prettier if it symmetrical.”

Did his sister just ask him to chomp her with Rashomon?

Bonus: Zenin Naoya <3<3<3, new technique

Hang him head down.

First, you lure him into the garden, being a submissive, obedient and sweet wife, you want your dear husband who is finally at home to relax and you have prepared a surprise for him <3

So, you lead him to the garden, where you prepared a magnificent, grandiose gallows!

Not understanding the reason why it’s here but being arrogant enough for at least a hundred men; he asks his silly wife why something so grotesque was in the garden she adored to take care of

You smile sweetly and lean in to kiss him (him allowing you to do so of course, you couldn’t do this if he was not spoiling you but he was really good with you), wrapping your arms around his neck

Then, you let go of his neck, watching him slowly fall back.

“Oh, dear!” You chuckle after hearing the loud bang his head produced after kissing the ground

You grab the collar of his cloth with one hand, the other one patting the back of his head, fingers finally grazing the little bump, consequence of his fall.

You slam it. (´꒳`)♡

Then you drag him behind you, playing a little bit among the moist grass and zigzagging to admire the pretty flowers you took care of during all the times you had an affair with boredom behind your husband’s back.

1st step. You tightly tie the rope around Naoya’s feet, slipping his sandals in his trouser for him to be able to find them later, how thoughtful you are

2nd step. You get the basin you already prepared and then, you pour the hair dye inside of it

3rd step. You use your delicate arms to lift him up, pulling on the rope with the mechanism you prepared, only do this now or he could die from having too much blood going to his head. Again, you are a model for all wives with your thoughtfulness.

4th step. Let the tip of his hair soak in the hair dye and you can even use it to decorate your husband’s clothes ( ´ ▽ ` )

5th step. Let him dry here, he will take the dye in and have beautiful hair tips. When he wakes up, he won’t be calling the servants because of his pride but then take a little time to come off the gallows. And then, he will be so thankful towards his wife he might want to kill you without ever divorcing! (⁄ ⁄>⁄ ▽ ⁄<⁄ ⁄)

But you leave the garden before he wakes up, you want to surprise him.

You take your luggage, join the man/woman (dear boredom) you are actually having an affair with and get out of the house. You want him to fully experience his marriage after all, you will offer him the experience of being cucked.( ◡‿◡ *)

#theories it's conspiracy lol #scenarios #anime #yashiro nene #akugatawa ryuunosuke #ishigami senku #ishigami byakuya #kocho shinobu #tokito muichiro #yushiro #zenin naoya #kita shinsuke #me write (´・ω・｀)

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ghostxofxartemis · 4 years

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2, 11, 20 for Ashley and John 👍

Hi nonny!

Thank you for your ask! My inbox is always open for asks and prompts!

I'm happy to answer!

From this Otp: ask list.

2. If they could describe each other in one sentence, what would it be?

Ashley on describing John:

"He's a caring, strong, and passionate man, with a great ass!" *smirks*

She stands by this statement.

John on Ashley:

"A strong willed, *roll eyes*, feisty woman" *wolfish grin*

*Ashley wiggles brows knowingly*

Double meaning intended.

John lost count on how many new "battle scars" he's obtained in the bedroom.

*Ashley pointing out a few fresh scratches*: "Oh, those weren't there yesterday. How did you get them?"

*John rolls eyes*: "I really couldn't tell you how they got there"

11. What causes them to fight?

Truthfully, there isn't much that causes them to fight/argue.

There's one conversation that may come up occasionally (post-reaper war), usually by John, and it is his decision to destroy the Reapers at the final battle in London. There's only a few people who know what happened in the Crucible. He told Admiral Hackett, Ashley (they promise never to keep anything hidden from each other), and Garrus. It took him a while to tell Garrus, because John wasn't sure if Garrus would blabber to Tali.

When their daughter joins the Alliance, she seems to encounter similar situations as John has in the past. This causes John to doubt his decision, and makes him wonder if he had chose to control or to synthesize (both situations highly goes against his moral code) the Reapers, if things may have turned out differently for their daughter, Alexandra.

They usually end the conversation quickly and pretend they didn't have it, until they do again.

It's one of the reasons he decided to stick around in the Alliance and remain spectre, he still fights to protect those he loves.

Plus, he really wasn't ready to retire. He learned he can't sit still for too long. He did not enjoy his time at the hospital after he was recovered in London. Luckily, he recovered pretty quickly and went right back to work. Adm. Hackett assigned him to have the Normandy guard the ships that were sent to rebuilt the mass relays, the Normandy did that for about a year before he was fully recovered. They has little encounters, but nothing the savior of the galaxy couldn't handle. Now he does other Alliance-Council joint missions.

Also, John's an adrenaline junkie. This probably goes all the way back from his time in the Reds. He's done all kinds of shady stuff to survive. He's hijacked all kinds of vehicles, during gang raids and stuff. (He's not proud of this), to name one of the things he’s done. (I don’t want to reveal too much since I intend to write his story).

So when their daughter, Alexandra (age eight at the time), said she wanted to learn how to ride a dirt bike, he was more than happy to teach her. Ashley highly disagreed with this. She argued that Alex would get hurt… or worse. (I mean, we all know how he drives the mako - to be fair his driving skills with a Skycar is a lot better, he blames the uncharted worlds and the endless mountains for the bumpy driving in the mako)

When Alex gets a dislocated shoulder while riding with her little brother and her cousins (when they were visiting their Nana Williams on Earth. Alex, age fifteen at the time, she swerved, barely avoiding a tree, and rolled off in time, dislocating her shoulder).Ashley couldn't stop glaring and telling John "I told you so," when they waited for the dr. In the hospital.

They argued a bit. But John somehow convinced Ashley that Alex has to be the one to decide if she wants to stop riding or not.

"Let her be a kid. Now is the time to do stupid shit, not when you're in your 30's.. I never got the chance to be a kid, and do kid stuff. Do you want the same for her?"

He can be pretty persuasive.

This didn't deter Alex from riding. She's an adrenaline junkie like her father. She loves riding.

When it comes to raising their children, they agree on a lot of things (John does not want his kids to end up like he did), there's been a few disagreements on a few things, like the dirt bike for one. Other than that they are pretty much on the same page.

20. What is a promise they have made to each other?

You mean other than their wedding vows and promise to love each other through sickness and health, the bad and the good times? Which they both take seriously…

There's a few, one being to never go to bed angry. I know it sounds cliche. But what can I say, they are very cheesy people.

As mentioned previously, they don't argue very much, so this is something they haven't really needed to put into practice. But they always abide by it, nonetheless.

Ashley has promised to try and not be so quick to come to conclusions like she did on Horizon and Mars… it's something she deeply regrets.

Maybe had she let him explain things on Horizon a bit more, they could have gone back together sooner…

She's still working on that, though she has gotten much better at it. Thank goodness John is a very patient and diplomatic man.

John has promised to try to avoid taking unnecessary risks if the situation doesn't call for it. Try being the key word.

To be fair, it's been easier to keep than he originally thought now that the Reapers have been dealt with.

That promise is not just to Ashley, but his kids too.

He doesn't want Ashley to become a widower.

And he doesn't want his kids to grow up without a father. He knows how much that sucks, since he was orphaned at a very young age.

Anderson is the closest he ever got to having a real father.

And also to try and be the best father he can. Again, having had no parents growing up (and abusive grandparents), he doesn't have any example to go on. (He turns out to be great at it though!)

#ask away #answered ask #from anonymous #ghost writes #ghost answers

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youarejesting · 5 years

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Music is the spark that sets my soul on fire - MYG

[MASTERLIST]

Summary: Yoongi x reader story. Y/n is a 97 liner from Europe, she came to Korea to study Literature but to maintain herself in Seoul she works as a producer and songwriter. BigHit hires her and while working with BTS they become friends and yoongi falls in love. I only got the music making part of this request, because, I am thinking I might make a second part. Where they can practice dancing together once the songs are recorded and progress the relationship a little more.

Request:

Pairing: Yoongi x Reader

Warnings: None that I know of unless you fear job interviews and bad lamb skewers...

Genre: Romance, Comedy, Drama

Words: 2.5k (SO MANY WORDS)

You walked through the busy streets on your way to an interview, you were going to a little almost unknown company. BigHit entertainment, you really hoped this wasn't a scam, you had been warned by friends that some shady companies liked to lure in foreigners. You were dressed rather nicely, if you do say so yourself. Fitted business pants and a button up, you felt confident, stopping out the front of the company. Adding a little perfume, trying to freshen up from your walk.

Heading inside you sat in the waiting area, with about ten other applicants, you were called in. The room was what you would expect to see for a board meeting of CEO’s a big oval table and lots of chairs. However besides you there were only two other people in the room. Above the table you appeared calm and collected, but below you were gripping the arms of the chair firmly.

You gave your skills and explained your work. They played your audition track and wrote some things down, "your work was one of the best we heard for the audition. Why do you think you are a perfect candidate for this job?"

"As BigHit entertainment aims to be a company that provides a challenging workplace, whilst promoting the joy of doing the work the employees love. I can assure you I have a passion for expression through words, music and dance, I have the advantage of knowing Korean Italian and English, I can open a wider market for international listeners. I am autonomous working well not only independently but also creating synergy within group projects. Finally I am someone you can trust, I take my responsibilities and I hold them firmly"

Bang Si-hyuk rubbed his chin and leaned forward, he pondered your words for a minute writing some things down and then dismissed you. You headed home that day concerned that you didn't get the job.

~~~~~~~

Sitting in front of your studio desk you started by uploading your demo's and listening to the very few songs the bangtan boys had already debuted. Getting straight into work the door opened and a thin man slinked in, he moved sluggish but each step was surprisingly agile. And the more you noticed him move across the room you could liken him to a big cat. He was obviously another producer, sitting behind you at the other desk. With your backs to one another, you two worked quietly head phones on.

After doing everything you could electronically you had to play somethings on actual instruments to really start bringing this cursed song to life. Heading into the booth, catching a sideways glance from the other producer. Ignoring the pressure of his watching eyes you took a seat at the keyboard changing the tone and playing a melody. You went around the room piecing the song together, playing each instrument with care. Grinning at the result you decided to head back to the computer to tamper with your recordings.

You had this song in your head, since you heard their first couple of songs and you couldn't shake it. So you were determined to make it come alive. It was a slow process and tiredly you stood back up happy with the back track and headed into the recording booth once more. This time you weren’t going towards any particular instruments but stood before the microphone. Putting headphones on you began singing a few of the lyrics you had scribbled down.

Once it was recorded you, resumed your position at your computer and began messing with the words. A figure appeared over your shoulder. "Let me hear" His voice was low and he spoke in a slow, lazy way with prolonged vowel sounds. Nodding you unplugged the head phones and played it. He did a small freestyle kind of rap over your shoulder and changed a few of your beats layering them, making the track sound more complicated you blinked, "I like it, we could use that"

You turned about to ask if this producer was going to steal your song, the paranoid feeling growing in your chest at the possibilities, when he said "tell me what I am missing?"

He played you his song and you were surprised it sounded way better than yours, his was crisp and experimental and all round made you feel like it was a genuine pop song already. But it was unfinished you could tell, it fit the formula of a pop song but you grew tired quickly it didn’t real you in it didn’t play with your emotions. The chorus came around and every time it was just there it didn’t make you anticipate anything. "There is something missing, it doesn't build like it should everything should build back to the chorus but it just isn't."

"That's your homework little producer go home and find out what it's missing" he grinned saving his work and shutting everything down. You went home and for the life of you couldn't sleep. That song played in your head over and over. You did what you had to, setting up your home computer you recreated the song as best as you could. Once it started to sound exactly how you remembered you started making alterations.

Staying up all night and heading into work tired, you sat at your desk continuing to work on his song. You couldn't get over the missing piece and after trial and error you figured it out you had recorded something with the synthesizer and then layered the track, it wasn’t to space but gave the build up to the chorus well. There were words on your mind and you took to the recording booth to make a vocal track putting it onto your replica of producer Min’s song. Leaving a USB for him on the desk and sitting back in your chair.

You were finishing your song when the exhaustion took over and you fell asleep. Min PD stepped into the room and saw you sleeping. He frowned thinking you were slacking on the job, perhaps he would have to have a word with Bang Si-hyuk. Sitting down his gaze landed on a little lady bug USB on his desk, there was a post it note attached. "I couldn't sleep until I figured out the issue, problem is I had to try to replicate your song, so it doesn’t sound as good” he turned his computer on excited to see what you had made.

He placed it into his computer and pulled on his headphones, listening you were singing but he tried to drown that out as he listened to every piece you added to his song. He was impressed the back track sounded perfect, lost in the beat, the build-up was perfect. Right after the second verse you flipped it and started another verse rapping. He took a sharp breath, you had some lungs and you were rapping in a mix of English and Korean that gave August D a run for his money. He felt his heart racing as you didn't slow down. He laughed silently as he heard you take audible gasps to the beat it was funny, cute and he was all for it. Before rapping the last two lines in a nonchalant way bringing in the bridge which hyped back into the chorus.

When the song had ended he was in awe, he wanted you to fix his back track but this was amazing. He wanted to keep the format you rapped, but he wanted to change a few lines, you were a good rapper. Just a bit too humble in some of your lines. Yoongi turned in his chair looking at your sleeping form, the times stamps on the files said three am. Meaning you had stayed up all night for this song. Excitedly taking it to the dance studio meeting the others.

"We thought you are trying to ditch dance practice again?" Hoseok laughed

"Don't be mistaken I was, but um our new producer, I asked them to fix my song and they made this" he plugged it in and the song filled the room.

They listened to the beat and Hoseok and Jimin were trying to make moves to the song. They prepared for the chorus only to be hit with the rap verse, making them freeze listening to you spit fire couldn’t help the smiles. When you got to the small out of breath gasps Namjoon looked impressed and Hoseok was shouting running around the room jumping on Jin. The bridge came in slow and the chorus hit they danced around and Namjoon grinned "that has got to be the best thing I have heard in weeks"

"My heart is racing" Jhope said looking at the maknaes line who grinned back at him. Yoongi smiled at their reactions and took their feedback and requests before heading back to the studio. You were in the recording room playing the piano and writing down notes when you heard Yoongi Knocking on the door. Blushing heading over, had he liked your song. You stepped out and sat at your desk turning, your chair to face him and he did the same.

"The guys really like your song" he said and your jaw fell open in shock he did not just show a proper group of performers your song.

"Sul serio, you showed it to BTS, I was rapping and everything"

"Oh they loved that they are currently arguing who gets the big rap verse" he smiled as you buried your head in your hands.

~~~~~~~

It had been months of lunches and late nights you exchanged phone numbers and worked on songs together. You jokingly bought him a pair of old man slippers for the office. He seemed to be wearing them every time you turned up. Sometimes you would see him on his chair with knees pulled up to his chest and his little toes wiggling in his slippers. There was also an awkward night when you both ran down thirteen flights of stairs to the only working bathrooms. He ended up grabbing your hand trying to pull you along, after you shared some bad lamb skewers.

The song and many others you had both worked on were approved for the next album. Turning to Yoongi, you felt rather nervous to meet the members of the band, "so what are the BTS guys like?"

"Uh they are all nice" he replied not turning to face you as he worked on some lyrics and timing, finding your question a little odd.

"I am just nervous, how many times have you worked with them?"

"From the beginning" he mumbled restarting the section he was working on and muttering lyrics under his breath to the beat.

"So you have been their producer this whole time?" You said shocked and it clicked you didn't know who he was, turning to face you he threw his head back laughing. You blushed confused why he was laughing at you. Grabbing their latest magazine he slide across the floor on his chair until he landed beside you. He opened the magazine and smiled showing you the picture.

"This is Rap Monster the leader really smart don't let him near your computer he is clumsy, Jin handsome face brings all the fans to the group, don't indulge him for his shitty puns. This is Suga, handsome rapper extraordinaire, he is probably the cooled of the group" he went to turn the page and you slammed your hand down on the page and held it up and looked at him.

"Are you brothers? You look the same, and if you say that you’re a member of BTS I am going to die of embarrassment?" He gave you a sheepish gummy grin and a shrug of his shoulders, you slapped his arm in shock "You are seriously a member of BTS and you never told me"

He laughed as you continued to playfully slap his arm and he grabbed your wrist, to stop you from doing any damage to either your hand or his arm. He smiled unable to control himself. He saw you pouting adorably, but what made him the happiest is that you didn't shy away you still hit him and treated him like your friend. "Come on my best friend can't be mad can she?"

"She can, you never thought in the months we have been working together to say "hey I'm Suga the rapper from BTS, never thought while texting to say ‘Hey Jhope from BTS told me during the BTS dance practice that I am the best looking BTS member of BTS’" You wiggled your hands free to playfully smack his arm a few more times, he was cackling.

"I thought you knew, I really thought you knew, forgive me I will buy dinner" pulling you into a hug so you couldn't try to hit him anymore. Huffing you gave up watching him order your favorite food to the studio, with ease. Sitting on the floor together, picking up from your last deep and meaningful conversation about work, home, money and the incident earlier that week involving the broken elevator and dodgy plumbing.

“I swear if it doesn't get fixed I am moving my office into the lobby, my legs can't take thirteen floors every day and then the fact that half the building is getting plumbing maintenance so we have to use the first floor toilets the first floor Yoongi, I run on tea and coffee and I took the stairs six times yesterday and not both ways six times down and six times back up. That’s nine steps a flight by thirteen flights, that’s just one way, one hundred and seventeen steps to get to our office” You were punching numbers on the calculator on your phone. “I climbed one thousand four hundred and four stairs Yoongi”

Yoongi stopped mid chew you had his face between your hands squishing his cheeks together as you stressed this, he was looking at your face and he swallowed his mouth full of rice looking at you. When had he fallen for you? This was a question that struck him, in this very moment. He looked at your soft features contrasting with your fierce eyes.

Was it your smile? The way you said such strange things that were foreign to him? The way you spoke to your family and how your mother would ask if you were eating enough and if you had found a nice boy yet? The times you would say ‘si’, ‘per favore’ and ‘grazie’ cutely? Maybe it was the way you would, get angry and start arguing with him only to slip into Italian and he would just stare at you amused watching those melodic words and foreign tones move your mouth in was he never usually got to see. Perhaps it was the way you would apologize for having long conversations in the office and for your family being so involved.

He would never know but he felt his throat go dry as he licked his parted lips watching you in slow motion speaking so fast, he didn’t know what you were saying and in what language. But he smiled grabbing the back of your neck and your waist he pulled you forward. With his lips on yours he seemed to devour your words, your arms went slack and he pulled back to see your eyes were wide open you were in shock.

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giogio-gucci-gangstar · 5 years

Text

A Golden Christmas

This started out as a totally different story about Bruno and Abbacchio loving bets on Abbacchios black out adventures, but turned into something way softer. So, here’s my favorite boys being boys but at Christmas

Libeccio’s was empty this Christmas Eve. Well, empty excluding all of the excessive decorations and a group of six Passione men.

The evening had demure beginnings. Bruno had wanted to throw his team a little party to show how thankful he was for each of them, and to give them some time to relax after some stressful weeks. Bruno had arrived early to set up with Giorno, whos Golden Experience had exquisite taste in garlands, flowers, bushes, berries and trees. He also made sure to sprinkle in some mistletoe over precarious areas like doorways, and above a certain seat at their usual table. But that would have to wait for later.

Abbacchio had been in charge of the alcohol, and he did not skimp on anything. There were several bottles of expensive champagne, he didn’t believe in being cheap, and had even brought some of his homemade mulled wine. He set the case down with a huff in front of Bruno before plopping down next to him already sipping on a bottle of his own.

Before Bruno could so much as offer him a proper glass, Narancia and Fugo burst through the door. Bickering as always.

“But Fugooooo karaoke is so much fun!!!”

“Its not part of our traditions. What would we even sing at a christmas party?”

“Uhh because its fun? Plus this year is different, we now have Giorno.”

“And I wish we didn’t.” So this was what finally elicited a response from Leone, Bruno thought to himself.

“That was a brilliant idea Narancia. It will be fun. Here let me help you set it up.” Bruno noticed Leone was already a little flushed as he scooted by him to go help Narancia set up the machine.

Fugo set down a plater of elaborately decorated cookies on the table in front of Abbacchio and helped himself to some mulled wine as he took in the decorations. It made the restaurant look like a secluded glen in some sort of Scandinavian forest. He spared a peek at Narancia using a cooking knife to hack through some bushes in search of an outlet, until bruno finally pulled him aside and gestured to Sticky Fingers making a clean cut through the vines to the wall.

Fugo smirked to himself as he saw Narancia’s face light up and ecstatically throw his arms around Bruno. Fugo looked around the room again and noticed that while he had clearly been here earlier to set up, Giorno was nowhere to be seen.

Then there it was, the tell tale sign of Mista, six little screaming voices sounded from the alley. Mista burst through the door with his usual enthusiasm for food, Giorno close behind unable to contain his laughter at Mista’s new hat. It seemed the boy had traded out his usual cap for a Santa hat, which the pistols had conveniently nestled themselves in.

“Heyyyyy!” Mista greeted his friends with open arms as he stepped into the beautifully decorated restaurant.

“Whoa there’s so many plants!” as he turned around in awe, causing Giorno to beam at his slight victory.

“Ah you like them?” He asked hopefully.

“Yeah but, like what are they?” Mista looked confused at some garlands, poking at some mistletoe strategically hanging from the ceiling and over doorways. Giorno realized this was going to be a lot more difficult than he anticipated.

Quickly distracted by seeing the rest of the gang, Mista called out to Abbacchio, “Oh! I'm your secret santa!” gesturing to his themed hat while pulling out a small red bag.

“Ugh Mista that's not how its supposed to work! It’s called secret for a reason!” Fugo started to fume, upset that his little part of the night had been ruined so quickly.

Abbacchio strolled over to Mista, shaking the bag slightly, scrunching up his face slightly when he heard the clanging of glass.

“Go on open it!” Mista beamed. He was very proud of his gift.

Abbacchio cautiously tore apart the haphazardly stapled paper bag. His frown slowly turned into an approving nod, “Are these dozens of little liquor bottles?”

“Yeah, shots or samples as my Nonna calls them. Come on let’s open some up!”

Abbacchio eagerly obliged, pulling out some little bottles of whisky, vodka, tequila, limoncello, and rum. Mista, grinning like a madman, helped him line them up before taking one for himself and opening one for Abbacchio.

Had he not already been fairly tipsy Abbacchio told himself he would have been more annoyed that Mista assumed he could partake in his gift. But he was also never one to turn down a drink, so the boys linked arms and downed the first small bottle of the night.

Mista’s face flushed and he coughed a bit from the burn, but the real shock was when Abbacchio’s cold demeanor melted as he laughed at the younger boy not being able to keep a straight face. “Come here, let me show you a trick,” and he guided Mista back to the table with a handful of the bottles.

“GUYS!” There was a screech as Narancia ecstatically jumped up and down and pointed to Bruno turning on the karaoke machine. In this moment Narancia would have preferred all attention be turned to him, but Mista and Abbaacchio were still doing shots in rapid succession, Bruno was trying to preemptively calm down Fugo, and Giorno was staring off into the distance with a glazed look on his face. Yes! Narancia thought to himself Giorno is the easiest target!

With the giggle the orange boy leaped across the room and nearly pounced on Giorno, quickly knocking him out of his reverie.

“GIORNO! SING WITH ME!” Giorno’s eyes nearly bulge out of his head as he was snapped out of his little day dream.

“Come on, let's sing a song! I know just the one!!” Narancia slowly climbed off Giorno, who was still trying to come to grips on reality, and started slowly pulling him to the karaoke machine.

Narancia pulled Giorno into a conspiratory huddle in front of the machine. There were lots of absurd hand gestures coming from the boy in orange, a few flew a little too wide and collided with Giorno. This continued for a few minutes until Giorno grabbed Narancia’s hands and said “OKAY im ready lets just do this-”

“BUT THE BIRDS”

“Its all under control. Trust me” Girono gritted his teeth as he made his way to the karaoke machine to turn on Narancia’s selected song. Maybe he could swing this in his favor, it could be an opportunity to show off a little for a special someone…

The first few bars of “Twelve Days of Christmas” start playing and Narancia, the sweet little orange boy, tries his best to read the words of the small screen, but gets bored and ends up dropping his microphone on the floor and walking away.

They hadn't even made it through the first chorus of the song but Giorno was not surprised in the slightest. He had figured Narancia would get bored so from the dropped microphone he made a partridge and then from a fork on the floor, a pear tree.

He looked at his friends sitting at the table across from him but no one was paying him any attention. Well, no one who’s attention he wanted.

“NO ONE WANTS TO SEE THIS” Abbacchio yells at the small blonde boy, nearly spilling his third? Fourth? Bottle of champagne as he stood up in what could only be described as a drunken demand for the microphone.

Giorno tossed him the microphone as he slunk back to his seat next to Mista, a little disappointed and embarrassed that his attempt to show off had been so quickly shot down.

“Narancia, kindly put on some real music” he spits, still managing to glare at Giorno as he made his way to the karaoke machine.

Abbacchio swings the microphone in his hands as the tell tale synthesizer of a Wham! song starts. Slowly, as the bass faded in, Abba started to move his hips to the beat. He swayed for a few seconds with his eyes closed, then his mouth opened and a voice of deep velvet poured out.

Everyone was shocked, even Mista stopped “sampling” his gift to Abbacchio. But Bruno was easily the most entranced.

“Once bitten, twice shy, I keep my distance but you still catch my eye” at those lines he opened his eyes, only allowing them to meet Bruno’s. A deep blush spread across his Capo’s cheeks and down his chest, where Abbacchio’s eyes followed.

“But if you kissed me now, I know you’d fool me again”

With that, Abbacchio strode over to Bruno and pulled him up from his chair to dance with him. Abbacchio didn’t break eye contact the whole time he danced, slowly pulling him closer, grinding his hips on him while he continued his serenade. When Bruno laced his fingers around Abbacchios neck and laid his head on his chest as they swayed, Fugo turned to the rest of the boys who seemed equally distressed.

“It would appear they are… having a moment? Maybe we should…” And he lifted his eyebrows to the door. “God Dammit not again” Narancia pouted when he realized Fugo was suggesting leaving the room with all the cookies and groaned as he followed him out of the room.

Giorno was already out of his chair, eager to give Bruno and Abba their much deserved alone time, which may or may not have been part of Bruno and Giorno’s scheme earlier in the evening. But Mista wasn't moving. His bottom was glued to the chair as he stared slack jawed with horror as he couldn't tear his eyes off his Capo getting more and more into the music, eventually planting a large kiss on Abbachio’s lips.

“Come ON” and with a yank on his sleeve, Mista tumbled out of his chair, shuffling into the other room after Giorno.

This was his chance, Giorno thought to himself. He pulled a stunned Mista to his feet under one of the many boughs of mistletoe he had hung around the restaurant for exactly this purpose.

“Ahem” Giorno shuffled his feet and darted his eyes between Mista and the mistletoe above them.

“Wha?” Mista scrunched his face, still unable to process his surroundings after what he would later describe as a ‘traumatizing experience’.

“Mista… The mistletoe?” Giorno pointed to the artistically draped bough above them.

“Cool?” Mista replied, still not quite grasping the significance of the plant above him.

“Mista,” Girono tried his best not rub the palm of his hand into his eyes, “its tradition that when two people stand under the mistletoe-”

“MISTLETOE???” Giorno’s little speech was cut short by the materialization of the Sex Pistols. Six little voices all chiming in over the other, flew up to the mistletoe above the boys.

“Guys!! This stuff tastes GOOD!” Exclaimed number 2. Immediately all of the pistols were stuffing their faces with the green leaves.

“Mistaaaaa these don't taste so good! They hurt my tongue!!” Cried number 5.

“Uh then don't eat anymore?” Replied the still very confused gunslinger.

“But i'm so hungryyyyy” whined the small pistol.

“I don’t know what to tell ya. All the food is in the other room and its more than a little occupied at the moment. Right?” He looked to his side expecting a response from Giorno but the blond boy just stood there, mistletoe sprouting from his little donut curls

“Whaa-” Mista was flabbergasted just staring at Giorno as a small smile crept across his face. But then, the Pistols noticed.

“GIORNO MADE MORE”

“YUMMY”

“GIVE ME A BITE”

“NUMBER SEVEN STOP AND SHARE”

With a flurry of pushing and shoving the pistols clambered over each other fighting to the best seat in Giorno’s hair to eat the mistletoe.

Girono’s faint smile gave way to honest laughter as he felt the little pistols tickle his head and eat the mistletoe he put there for them. He nearly doubled over laughing at their little reactions, but he didn’t want to disrupt them.

Mista on the other hand, blushed profusely, and was having a difficult time controlling his stand.

“Hey! Guyssss stop messing with Giorno! You’re going to ruin is hair!!” He whined to his Pistols, afraid to physically pull them out and cause more damage.

Giorno grinned, “I don’t mind, they’re rather cute.”

#jjba #golden wind #gangstar #bruno bucciarati #giogio #giorno giovanna #guido mista #leone abbacchio #narancia ghirga #panacotta fugo #christmas #christmas au #bruabba #giomis #my nonsense

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canyouhearthelight · 6 years

Text

The Miys, Ch. 9

Newest chapter is up! We finally encounter other people on the ship, and I have a chance to show that Sophia is not perfect. Also, this is a fluffy chapter, no warnings.

Please feel free to send me any constructive feedback or questions you have regarding any chapters of this story. I love to answer questions. All I ask is, if you identify a problem with something, please also suggest a solution to said problem. I am always willing to correct myself provided I know how.

I spent the next several weeks getting used to the routines on the ship. For the first few days, I was still getting a substantial amount of my mobility back; just because I had been given new body parts in perfect condition did not mean they held the same flexibility and endurance as the muscles I had lost. The Miys had insisted that the muscles should be in correct working order, and struggled to understand that some traits of human motion are not held in genetics, but rather in how we use the muscles to strengthen them and stretch the connective tissues. In the end, I had to demonstrate my lack of range of motion by trying to do yoga with Tyche. The fact that I could barely even do half of the poses hurt my ego more than it hurt my body.

“Enhancer,” the Miys buzzed in a questioning tone. “You and Tyche genetically possess both ligamentous laxity and hypermobile joints, causing a greater base range of motion than the Terran average. Please explain why you wish to be more flexible beyond what you are already capable of?”

I rubbed my stiff spine before answering. “Humans are like that. If there is something unique about us, sometimes it feels good physically to cultivate that. For example, I had a friend growing up who was able to both perceive and vocally produce sounds with perfect accuracy. In English, we call this perfect pitch. Rather than just be happy with that, he learned to play every Terran instrument he possibly could, so that he could make music not just by singing, but by playing instruments. He found it challenging: he could already make perfect music through singing, and had a substantial range. But that did not extend to instruments, so he had to actually teach himself to play these instruments with very high precision.”

“I would have very much liked to find someone with perfect pitch,” it hummed wistfully. “However, of those who survived the condition of your planet, none with perfect pitch were found. I certainly tried. The concept was very exciting, both for me and for my home world. What would they look like?”

Now, I was kind of bummed about it, too. What would Ronnie have looked like to a species who saw through sound? Despite the fact that his face had blurred in my memories after so many years, I do remember how kind he was, and that alone always compelled me to remember him as beautiful and vibrant. Maybe he would have been beautiful and vibrant to the Miys, too, in their equivalent of crystal clarity and surround sound. The idea lifted my heart a bit.

In addition to working on returning to my previous peak physical condition (pre-End, before malnutrition was as common as breathing), I focused on familiarizing myself with the ship. After a rowing argument with my food console when I tried to order Shepherd’s Pie, I stomped to one of the communal eating areas and decided to socialize. I had struggled with the console from the first time I tried it on my own. Most international food worked okay, but comfort food was just not cooperating. The Miys already confirmed that there was no restriction on my console, as I had no dietary restrictions from a medical standpoint. It was unable to explain why the console had difficulty with certain dishes, however, as the consoles were specially installed for the Terran cargo. The Miys just ate its standard rations to sustain its several bodies, and apparently that was all they ate, even on their home planet. I was curious enough to tag that for further interrogation later. Right now, I wanted one thing and one thing only.

As I navigated into more populated areas, I paused to compose myself: Stand tall, head up, shoulders back, smile on my face. After all, the Miys expected me to help lead in some capacity; I knew from previous experience on Earth that humans generally prefer to be led by someone who seem confident, but approachable and somewhat likable. Essentially, this was my public debut to the rest of the ship, so I needed it to be a good impression, whether the rest of the ship knew that or not. Being frustrated and hangry was no excuse.

Once I entered the common area, I immediately saw that it was roughly the size of an Ikea food court: large enough to be left alone, but small enough to be social if you chose to be. Very considerate. A quick scan of the room showed several freshly prepared options to one side, and a bank of food consoles on the other. My brows furrowed at the consoles before I made my way over to scan the freshly prepared food. To my chagrin, the fresh food was rather boring but hearty fare. It looked good, but it wasn’t what I had a craving for. Miys did not understand the concept of cravings, so this was another struggle I would have to explain at a later date.

In defeat, I shuffled over to the food synthesizers, praying to whatever deity would listen that one of the damned things would produce what I wanted. Three synthesized (and subsequently recycled) meals later, I still could not get my meal. While considering defeat, I held my arms at my side, fingers splayed, tipped my head back, and took a deep breath to calm myself so that I would not start screaming like a madwoman in the middle of a crowd. After a slow count of twenty – ten had stopped working at the previous synthesizer – I was about to just order something else when someone walked up behind me. With survival instincts required by someone who survived nearly a decade in an apocalypse, I whirled to confront what my lizard-brain had dubbed ‘attacker’.

A dark-skinned woman backed up at my aggressive stance, hands in the air, showing they were empty. “I just want to assist you. I know the look of someone who is trying to find food from home and cannot obtain it from the console.”

I shriveled on the inside as I relaxed on the outside. “Is it that obvious?”

She chuckled before extending her hand. “Only because we have all experienced it. I am Arantxa. For me, it was bacalao al pil pil. The console continued to give me battered and fried cod! So angering! Finally, the console was reprogrammed when I was able to find someone who knew how to make it.”

I took her hand as I melted in relief. “I will gladly try that tomorrow if you can find me someone who can get this thing to give me Shepherd’s Pie. I love trying new food, but right now….” I trailed off.

She gave me a curious look, “Yes, nothing else will do. I see the problem, however. When you name that dish, I only hear ‘language conflict’ in my translator. Do you know what nation the dish comes from?”

“Wait,” I held up a hand in front of me. “What do you mean ‘language conflict’?”

Arantxa tilted her head before responding, “The implants translate any language you are hearing into your native language. Did they not explain that?”

“Not like that, no,” I confessed. “I thought it just translated their language into English.”

She immediately seemed to understand, because she gave a short nod before continuing. “We have people from many nations here, and we would never be able to establish a colony if we did not understand each other. So, the implant does not just translate their language, it translates any language spoken by a person with such an implant into your native tongue.” Arantxa gestured to herself, “I am Basque. My language is a dying one, so I am particularly glad of this. But I do not speak even a little English, as I was so young when Terra died. So, my implant and your implant are trying to find a common name for the food you are asking for, but there is no exact reference in my language and several references in other languages. This causes a conflict until the database is updated to include your term and its reference.”

I nodded before responding to her previous question. “It’s Irish as far as I know, but anyone from the former UK or Ireland can probably recognize it.”

She looked satisfied as she nodded. She turned and walked over to a particular person before bringing him to me. “Conor,” she said decisively, “this is…?”

“Sophia,” I supplied.

“Sophia,” Arantxa continued. “She is struggling to get the dish she would like, and I think you can help her.” With that, Arantxa waved at us both before returning to her meal.

As I turned to Conor, I held out my hand. “Sophia, from America.”

“Conor, from Ireland,” he shook my hand with a slight smile. “What is it you’re craving?”

I blew out a breath of relief. “Shepherd’s Pie. Please. I’ve tried several different synthesizers, and I....nothing comes out right.”

Conor simply nodded before addressing the console. “Two servings of Shepherd’s Pie, please. And to drink…” he glanced at me.

“Sauvignon Blanc?” I asked hopefully.

He dutifully ordered my drink. Surprisingly, the synthesizer produced two beautiful, mouth-watering portions of my heart’s desire, along with a glass of wine. To my surprise, Conor picked up my tray and gestured with his head for me to follow him back to his table. He had previously been sitting alone, so I was confused as to why he wanted me to join him.

After setting my tray down and chuckling at the groan of satisfaction I made when I took the first bite, the reason became apparent. “The replicators are finicky,” he chuckled. “And they particularly don’t like English. Between the Queen’s English and that hodge-podge you speak, it gets confused a lot.”

“So,” I asked around a forkful before swallowing. “How do I get it to make this for me?”

He grinned and shrugged, “the Miys update the database fairly frequently, so they can simply add ‘Shepherd’s Pie’ to the terms for the dish.”

“And how did you convince the synthesizer to give up the goods?”

“I asked nicely?”

I arched a brow at that, gazing silently.

“I asked in Irish,” he relented with a laugh. Either I was very funny, or Conor was very cheerful.

“So what is the Irish term for this?” I gestured at the serving left after I shoveled the first serving down.

Rather than replying verbally, Conor pulled a tablet out of his pocket and started typing. When he turned the tablet to me, I realized the dilemma.

Pióg an aoire

I nearly choked on my wine. “I don’t think I can pronounce that, honestly,” I admitted. “And I’m willing to bet that you can’t teach me either, can you?”

Conor confirmed my suspicions with a shake of his head. “Nope. It will just translate into American if I try.”

“And how long does it take the database to update.”

“Oh, just a week.”

I could live with a week. However, I thought of another dish that I enjoyed that may need to be added. “Conor, do they already have coney pie in the database?” Despite living on the stuff for several years, I really did enjoy it.

“Rabbit pie is, yes,” he confirmed before leaning forward with furrowed brows. “How likely are you to know the term for something in a different language?”

Slightly confused, I answered, “Well, I really loved to cook and eat before the world went to shit, so there is a lot of food I know the correct term for, or the term in another language. Why?”

He flashed another grin before sitting back and stretching. “You and I,” he ticked an index finger between us, “are going to get along great. I’ve been dying for what Americans call French toast, and all I can get is toasted baguette. None of the French speakers seem to hear the right term for it, all they hear is ‘toast’ apparently. I’ve managed eggie in a basket, but if you can get me that, we are square, and you may be my favorite person.”

I suppressed a chuckle before I asked, “You haven’t happened to have met a much smaller person who looks like me, named Tyche, have you?” I knew for a fact my sister spoke nearly flawless French and could have accomplished this for him before I ever woke up.

Conor simply shook his head. “Only been on board a few weeks. Why?”

“No reason,” I smirked. “When do you want your French toast?”

His eyebrows flew up at that. “Now, preferably. I’ve had a craving ever since I woke up. It’s my favorite breakfast.”

I finished my wine and dropped the glass in a recycler before walking to the console.

“Pain perdu and a glass of sauvignon blanc, please,” I announced triumphantly.

Leading had to start somewhere. Breakfast is a good place, I thought in amusement.

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#humans are weird #humans are space orcs #earth is space australia #my writing #original #writing prompt #the miys #science fiction #scifi #aliens #apocalypse #languages

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iamartemisday · 7 years

Text

Jane Foster Week Day Six

.06 Jane in Ragnarok

“Dr. Foster, over here!”

“Ms. Foster, can you comment on Thor’s absence during the Sokovia Accords?”

“Do you know anything about his current whereabouts!”

“Dr. Foster!”

Jane slammed the door in the reporter’s face. She might have pushed too hard and whacked him in the nose. If she did, she hoped it hurt.

They banged on her door for a few more seconds before giving up and returning to their hiding places in the bushes. Jane’s new lab would be all over the internet by tomorrow accompanied by inane headlines.

‘Former Girlfriend of Thor Living In Lab.’

‘Jane Foster’s Single Life. Does She Miss Her Godly Lover?’

‘Scientist Makes Strides in Interdimensional Travel But Who Cares About That Let’s Talk About Her Dating Life!’

A camera flash went off at the window. Jane rushed over to pull the shades down, then proceeded to do the same for every other window in her lab/temporary living arrangments, plunging the lab into darkness.

“That’s it,” Jane seethed as she slid to the floor beside the kitchen window. “I’m putting in a security system.”

** Two weeks and one very elaborate security installation later, Jane was jolted awake from a peaceful slumber by six alarms going off at once. One from outside warning her an unauthorized person was on her property, one from the front door letting her know they’d picked the lock, and four from various points inside the lab.

Just under the blaring sirens, a rope snapped and a male voice screamed. The seventh and final alarm signaled her tripwire’s successful activation. Jane leaped out of bed to find the would-be invader thrashing in mid-air, suspended by a cord wrapped around his ankle. Deceptively thin, it had been synthesized from some of the strongest material known to man. Unless he was a strong as Thor, he wasn’t getting down until she wanted him to.

Jane grabbed a baseball bat and prepared to swing. The man threw out a hand. “Wait a minute! I’m not an intruder.”

“You broke into my house while I was sleeping,” Jane snapped. “That’s the very definition of intruder.”

“Okay, but I’m not here to hurt you.” He tried to reach the wires, only succeeding in a weird half sit up. “I need your help.”

“Likely story.” Jane readied the bat.

“Captain America needs your help.”

Now there was an interesting story. It was most likely the ramblings of someone not eager to become a human pinata, but she was intrigued enough to hear him out. Dropping the bat, Jane switched on the lights. She tripped over air as his upside down face came into view.

“Holy shit, you’re Hawkeye!” Jane pointed a shaking finger at him. “I’ve been seeing you on the news for weeks!”

“You mean in between all those Thor and Jane expose pieces?”

Jane still had the bat in her hand, which she reminded him of by tapping it against the floorboards.

“Sorry, bad joke,” he said. “I’m usually more tactful than this, but the blood is kind of rushing to my head right now...”

Jane picked up her phone from the nightstand and typed in the abort codes. All alarms fell silent and the wire mechanism released. He plummeted a foot to the ground, landing on his head with a thump.

“Whoops,”Jane said with an apologetic grin. “Yeah, there might be a few bugs I need to work out. Sorry.”

“It’s fine,” Barton said, rubbing his head. “I’ve dealt with way worse… fancy new system you have here.”

“Yeah,” Jane said as she walked to the refrigerator. “I’ve had a lot of paparazzi on my back lately. This was just in case they got too bold.”

Barton nodded. “Were you really going to hit me with a baseball bat?”

“In my defense, you could’ve been an axe murderer for all I knew.”

“Fair enough.”

Jane set them up at one of her empty lab tables. He had graciously accepted her offering of a water bottle but seemed to be wishing it was something stronger as he took small sips.

“So what’s this about Captain America needing me,” Jane said. “Correct me if I’m wrong, but aren’t you guys fugitives?”

“You’re half-wrong,” said Barton. “We’re still guilty in the eyes of the law, but we’ve been working with Stark again for the last few months under the table. There’s something big coming and we don’t know what it is. Only that it’s bad and it’s not from around here. That’s where you come in.”

“You need m to help with an alien threat,” Jane nodded, looking down at her hands. “Okay. So you need my bridge designs or a consult?”

Barton raised an eyebrow. “You’re taking this surprisingly well.”

“I’m the only human in history to travel by bifrost and visit Asgard. Not to mention the two alien battles I’ve witnessed, one of which I helped to thwart. I’m pretty much over being shocked by anything.”

He nodded, crossing his very muscular arms as Jane couldn’t help but drink in the sight. That had to be the effect he was going for with that sleeveless top of his. “Would I be overstepping my boundaries if I said that’s really hot?”

“You overstepped every boundary there is when you broke into my house,” Jane said. “You couldn’t have sent an e-mail?”

“Technically, I’m still wanted,” said Barton. “Plus, Tony’s not on board with bringing you on yet. Something about not wanting to risk another friend’s life.”

“I’ll talk to him, don’t worry.” Jane went around her lab grabbing clothes and notebooks and laptops. She threw them all in a carryon bag until it was bursting at the seams. Throwing it over her shoulder, she started for the door. “Let’s go. We’ve got a lot of ground to cover if we want to reach Manhattan before dawn.”

“Actually, Stark moved everything upstate,” said Barton.

“Even better.” Jane rearmed the security system just in case some magazine writer took her absence as an invitation to snoop. There was a beat up pinto waiting by the curb. Jane ignored it in favor of her pinzgauer and Barton offered no objection. He was equally fine with taking the passenger seat. He read off the base’s address as Jane entered it into her GPS.

“Travel time… seven hours,” he read, clicking his tongue. “Looks like we won’t beat the sun.”

“It’s fine,” Jane said, pulling out of the driveway. “All it means is we have plenty of time to talk. So tell me about yourself. I honestly don’t much about you except that you’re a superhero and you’re wanted by the government.”

Barton thought for a moment. “Well, I’m partially deaf which not a lot of people realize because I can read lips so well. Uh… I was in the circus when I was a kid. I can shot a fly from two hundred miles away and sometimes I pretend my sister-in-law is my wife because my brother’s an idiot.”

Jane blinked at him many times. He never lost that cheerful yet utterly serious expression. “On second thought, seven hours may not be enough.”

#Jane Foster #janefosterweek #Clint Barton #technically more 'what is Jane doing during Ragnarok'#Clint/Jane

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mediabasedlife · 7 years

Text

2017 Year in Review

This past year was, to put it mildly, rather tumultuous. For every high point of the year, there seemed to be low points all around it. But now the year has ended, and hopefully, this next one brings more good and a hell of a lot less bad than its predecessor. However, as said; 2017 wasn't all bad, and this is what I've decided to write about today. Finding myself inspired by the myriad of posts about people's top five or ten games, movies, shows, and so on, I've decided to continue that trend and catalogue the media I found to be exceptional, the media that helped me through the ups and downs of these twelve long months we just experienced. Some I may have written about before, and some will be new, but all of them deserve praise and recognition abound...at least, in my opinion. So without further ado; here are my most enjoyed pieces of media I experienced in 2017.

We'll start this article off by discussing a category I haven't really discussed on this blog before - music. The reason I don't usually write about music is due to how disparate my preferences can be for this particular media medium. Some days, I'm all about hard and the heavy, while others I'll dip into instrumentals, jazz, or video game soundtracks. Hence, the music I'll be listing here won't have much of a comparable flow - I just thought it was all pretty good.

This first album ties into one of my favorite games from 2017, easily a contender for my choice for Game of the Year; the soundtrack to the superb indie game Night in the Woods, as orchestrated by Alec Holowka. The soundtrack is beautifully mellow, pleasantly tuned for ambiance. In the game, the music accentuates and emphasizes all of the game's themes, emotional depth, and down-to-earth feel. Out of the game, the soundtrack is perfect for chilling out, studying, writing, or any such easy-going activity. I frequently found myself playing it in the background whilst reading or doing the few articles I wrote, or using it to relax after a particularly trying moment. Continuing the theme of game soundtracks, another that caught my fancy was the Persona 5 OST, composed by Shoji Meguro. An eclectic mashup of genres, the soundtrack bounces between somber piano, energized guitar, and jazz compositions, with a handful of excellent vocal tracks thrown in for good measure. This album is great for a variety of moods or activities thanks to the numerous tones and tempos the music flows between. And with nearly four hours worth of music to sift through, it stands to reason you'll be able to find something you like.

Moving from video game music, another album I found myself enjoying through the year was Alestorm's No Grave but the Sea. If you're unfamiliar with Alestorm, they fill a rather particular music niche; Pirate Metal, a fusion of piratical slang and heavy metal. Alestorm further accentuates their distinct sound with frequent usage of brass and string instruments, as well as a synthesized accordion. I found myself intrigued by their music several years ago when the band released the album Back through Time, and have followed them since. No grave but the Sea is relatively short, coming in at under an hour across its ten tracks. If you're a fan of niche genres, or just a metal fan looking for something new, I'd recommend you give it a listen. Closing out the music section is Linkin Park's One More Light. OML released only a few weeks after Alestorm's No Grave but the Sea but usurped it in my music library almost instantly for a brief time before the unfortunate suicide of Chester Bennington. In fact, I would call One more Light one of Linkin Park's best albums, despite it being the starkest departure from the band's hard rock sound to date. That isn't to say the album isn't heavy, though. One More Light is heavy in tone, as opposed to sound; If you want an example, listen to the premier single "Heavy" or the titular "One More Light", and you'll get a firm grasp on how the album feels. One more Light clocks in at a short but sweet thirty-five minutes, and I would wholeheartedly recommend taking the time to sit down and listen to it in full.

TV shows take the second slot, though I'll be honest; I definitely don't watch a lot of television. Not live, anyway. Most of what I watch is through streaming services, so a few of these aren't technically from 2017, at least not in full. But since I first watched these shows in 2017 it counts. Without further ado, here are my favorite television shows I started or finished in 2017.

Kicking off the television roster is Twin Peaks. If you're unfamiliar with the show, Twin Peaks was written and directed by David Lynch. It stars Kyle MacLachlan as the charming and amusing Special Agent Dale Cooper, a federal investigator sent to the enigmatic small town of Twin Peaks to solve the murder of local sweetheart Laura Palmer. Not much can be said about the plot of this show without spoiling it or just plain confusing somebody, but suffice it to say that all they appear to be. Everybody has a secret, and the show doesn't take too long to spiral into the surreal in typical Lynchian fashion. Twin Peaks initially debuted in 1990, earning two seasons and a cult following that lasted the 26-year gap until its third season released in 2017. Long story short; the show is great - It has intrigue, comedy, a wide cast of interesting characters, and a story that will keep you guessing until the end and beyond. The show isn't without its faults and can be flat out baffling at times, but despite all of that the show and its story is a fantastic experience to behold.

The next show on my list both compliments and contrasts Twin Peaks; Broadchurch. Broadchurch is a crime serial taking place in the fictional (and titular) town of Broadchurch, starring David Tennant as Detective Inspector Alec Hardy, and Olivia Colman co-stars as Detective Sergeant Ellie Miller. The series kicks off by investigating the murder of local youth Daniel Latimer, before moving on through its three-season run to investigate another murder case and finally a sexual assault, all the while weaving a compelling tale of a small town trying to cope with and move on from these horrible crimes. Broadchurch is a heavy experience, with very little levity to break up the tension of each investigation. That being said, It's still an excellent show with a genuinely compelling narrative backed up by the top-notch acting of the cast.

Setting aside the crime drama, we come to the next show - Voltron: Legendary Defender. Technically, the series' first season debuted in 2016, but 2017 saw the release of the second, third, and fourth seasons, meaning it was a pretty Voltron filled year. Legendary Defender is the latest in the long line of Voltron adaptations, following the Paladins of Voltron as they fight to defend the galaxy from the evil Galra Empire. Now I've never watched any of the other Voltron shows, so I can't speak for their quality (or lack thereof). As far as first impressions to a series go, Legendary Defender couldn't be better. Helmed by DreamWorks and Netflix, and written by the creative minds behind Avatar the last Airbender and its sequel Legend of Korra, Legendary Defender was probably the best-animated show I watched all year. In terms of quality, the show is top notch. Excellent voice acting, great animation, and a fun but serious story that has me eagerly anticipating wherever it goes in 2018.

Wrapping up this section are the many, many Netflix Marvel series. This includes Daredevil, Jessica Jones, Luke Cage, Iron Fist, The Defenders, and finally The Punisher. I had already seen some of these before but went in for a rewatch in preparation for all the new stuff coming out in 2017. If you're not familiar with these shows, however unlikely that is, I'll summarize each show in a sentence or two. Daredevil follows Matthew Murdoch who, after losing his sight but gaining superhuman senses as a child, fights crime in hell's kitchen on two fronts; as a lawyer, and as the vigilante Daredevil. Jessica Jones follows former street hero turned private-eye, Jessica Jones, as she tries to deal with the aftermath of a traumatic incident in her past while an old foe comes back to haunt her. Luke Cage follows Ex-Con and titular character Luke Cage as he tries to clean up the streets of Harlem and free it from corruption. Iron Fist follows Danny Rand, boy billionaire and sworn defender of Kun Lun as he tries to combat a mysterious organization known as The Hand. The Defenders finally unites these four heroes for the first time, as they all come together to battle the aforementioned Hand in an attempt to stop them once and for all. Finally, we come to The Punisher, which follows war veteran turned vigilante Frank Castle as he hunts the people responsible for the murder of his wife and children. I won't go into an extended review here, so to keep it simple; Daredevil is amazing (though its second season has some flaws), Jessica Jones is great, Luke Cage is great, Iron Fist is fine, The Defenders is amazing, and the Punisher is fantastic...to summarize, pretty much all of these shows are worth a watch.

Now, as I said at the beginning of this article, 2017 was a pretty shaky year. A lot of ups, and a lot of downs. Many of these ups, at least for me, are in the next category; 2017 was a pretty great year for movies, in my opinion. It was a busy year for movies, but when isn't it? For every one movie I watched, there were three more I had to wait on, but pretty much every film I watched in 2017 knocked it out of the park. From comic book films to horror flicks, each one of these movies takes the cake.

The premier movie for this article is Get Out, one of the contenders for my favorite movies of the year. Helmed by Jordan Peele, Get Out is a genuinely uncomfortable horror/thriller about a black boyfriend meeting the family of his white girlfriend. It tells a heavy but undeniably compelling story, one that keeps you guessing and inspires a fair amount of thought after the fact. I won't go into too much here, but I will say that if you haven't seen this movie, you absolutely should. Speaking of movies that make you think, Bright is up next, the new racially-conscious Netflix movie starring will smith and....no, not really. Actually, The Lego Batman Movie is up next; a goofy, charming, and stark contrast to all of the gritty DC movies that have been churned out over the past few years. This movie was genuinely funny and felt fun to watch...something that can't be said about some of the more recent DC films. I've written about this movie before, and my thoughts today still echo that review; This was one of the best Batman movies I've seen. Following The Lego Batman Movie, the next film on my list is John Wick: Chapter 2. There's not much to say about this movie other than the fact that it's a top-notch sequel that keeps all of the pros of its predecessor, and in some cases, improves on them. It isn't a terribly different story than its predecessor; Somebody messes with John Wick, so John Wick messes back by going on a vengeance-fueled spree. It's an action-filled thrill ride that doesn't disappoint.

Another action-filled thrill ride takes the form of Logan, and....wow. Logan is another contender for my favorite film of the year. The movie serves as equal parts finale for both Patrick Stewart and Hugh Jackman as Charles Xavier and Wolverine respectively, and it does so perfectly. Logan is a shining example of what Comic Book films should aspire to, with an outstanding script, Oscar-worthy acting, and a top-notch story to close out this era of the X-Men cinematic universe. Finally, we come to one of the last movies released in 2017; Star Wars The Last Jedi. I'm sure if you're reading this, you've probably seen this movie. Maybe you liked it, Maybe not. I, however, thought this movie was pretty damn good. One of the better Star Wars films, I think Rian Johnson did well at what he set out to do. I won't say it's the best movie of the year, but it makes my list of favorites.

Finally, we come to the last section of this year in review: Video Games. I actually got to play a fair few of these this year and liked basically all of them. But, this isn't "Year in Review, things I thought were passable". This is "Year in Review, my favorites", and so what follows are my favorite games of 2017. From AAA titles to simple indie games, each one of these had the right amount of fun, charm, and entertainment to keep me hooked and keep me coming back to them time and again.

We'll kick this list off with a game that embodies charming simplicity; Slime Rancher. This game debuted back in 2016 as an early access title but finally released in an official capacity in August of 2017. I didn't think much of it when it came out, just grabbed it since it was free through Xbox Live's games with gold program. Color me surprised, then, when it turned out to be one of my favorite games of the year. I previously wrote about this so you can see my full review here, but what I'll say here is that Slime Rancher is a surefire recommendation on my part. The next two games are anything but simple, at least in terms of story; Kingdom Hearts 1.5 and 2.5 HD (PS4). I had played these games before, on the PS2 and PS3, but what can I say? Kingdom Hearts is one of my favorite gaming franchises out there, and the ability to play it again on modern consoles was a treat. With the release of Kingdom Hearts III on the horizon (hopefully), going back to experience the franchise in full was a fantastic refresher. If you've never played Kingdom Hearts before, getting the modern gen remasters is your best way to experience these games right now.

Following Kingdom Hearts is Persona 5, one of two games I would strongly consider as Game of the Year. I had never played a persona game before this, at least not in full, and this game almost made me regret that. Persona 5 is near perfect, with a great story, smooth and snappy gameplay, and a top-notch aesthetic balanced between its visuals and its sound design. Atlus has a history of making quality games, and Persona 5 is no exception. Continuing from there, we come to Night in the Woods, the second of my two Game of the Year contenders. In fact, were it not for Persona 5, Night in the woods would be the winner for 2017, at least in my book. This is another game I've written about in full and I would recommend reading that review here because I had a fair amount to say. Night in the Woods saw two releases in 2017, once at the start of the year, and once at the end of it. Because of this, the game both kicked off and closed down my 2017 year, and I couldn't have asked for a better game to do so.

That about wraps up my Year in Review. 2017 was a full year for media, and I have a lot to catch up on, but luckily I was able to experience just about as much as I missed. Not everything I did this year appeared in this review, but these were the things that elevated themselves above the competition and took the titles of favorites for 2017. I extend my thanks to anybody who stuck with this blog, or even read just one of my articles in the last year, and hope that the new year is kind to all of you. This year promises to be just as good, if not better for media purposes, so I eagerly await whatever comes next. Here's to a great 2018, folks.

#Year in Review #Gaming #Film Review #Music #About Me

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connectingals · 5 years

Audio

On this month’s episode we explore three topics of importance for many in the ALS community. First up, we connected with Michelle Trautman of Perham, Minnesota and Daniel Vance from Team Gleason in New Orleans to discuss the process of voice banking. We then welcomed Dr. Ezgi Tiryaki into our studio to talk through the current model of clinical care for ALS. And lastly, we sat down with Donnie Raveling of St. Paul and Jennifer Myhre from The ALS Association to scratch the surface on the topic of home healthcare.

Transcript:

Mike (narration): Hello and welcome to episode two of Connecting ALS. I'm your host Mike Stephenson from the Minnesota, North Dakota, South Dakota Chapter of the ALS Association. On this month's episode we explore three topics of importance for many in the ALS community. First up, we connected with Michelle Trautman of Perham, Minnesota and Daniel Vance from Team Gleason in New Orleans to discuss the process of voice banking. We then welcomed Dr. Ezgi Tiryaki into our studio to talk through the current model of clinical care for ALS. Lastly, we sat down with Donnie Raveling of St. Paul and Jennifer Myhre from the ALS Association to scratch the surface on the topic of home health care.

Shortly after Michelle Trautman of Perham, Minnesota was diagnosed with ALS, one of her clinical specialists identified her as a strong candidate for voice banking.She's currently creating a pair of synthesized voices that she may eventually need as her disease progresses and was gracious enough to share her experience with us.

Mike (in-studio): So on the phone with us today from Perham, Minnesota is Michelle Trautman. Welcome to the show Michele and thanks for being with us.

Michelle (on phone): Well, thanks for having me on Mike.

Mike: And if you don't mind,just for the context of our listeners, can you tell us a little bit about yourself and, if you could, how you arrived at an ALS diagnosis?

Michelle: Sure, well I, um,am 53 yes how old am I now? Last year, about March, I started having some symptoms in my left arm. Thought I had just slept funny. That went on for quite a while and just noticed some more weakness and finally a friend of ours who's a physical therapist said "eh, you got something going on here you need to get checked out".

Mike: Wow and do you remember kind of as you're going through that, what was going through your mind at the time? Were you thinking from an early on point this may be something very serious?

Michelle: You know what, I never really did. I just figured I had tweaked a muscle. A few years back I had some neck issues, thought maybe something had tweaked again in my neck. Never once thought of ALS.

Mike: Right, right.

Michelle: You know, I mean, because most of the research I've done I wasn't one of the prime candidates, but lo and behold here we are.

Mike: Sure, sure. Well, thank you very much Michelle for being willing to share your story and also for being open to discussing the topic I want to get into today, which is voice banking. And, for anyone who is unfamiliar with the concept, voice banking is essentially the recording of one's voice and speech patterns for the creation of a synthesized voice to be used with software and speech generating devices in the event that ALS eventually robs you of your ability to verbally communicate, which does happen unfortunately for many people living with the disease.

There's also message banking, which is a simple recording of specific messages or phrases in your own voice that you can access at any time, we should kind of make that distinction between voice banking and message banking, but Michelle when did you first learn about voice banking as a possibility?

Michelle: Um, last November on my first visit to Mayo when I met with Kristin.

Mike: Oh Kristin from from the ALS Association?

Michelle: Yes, she told me I was kind of in that sweet spot, I had a lot of really good options of people who could help me out with that.

Mike: And, what were your what was your initial reaction to hearing about that? What do you think about the possibility?

Michelle: I thought it was a good one because I wanted something I could take control of. When you're getting this diagnosis you feel very out of control, so it was something I could be in control of for my life.

Mike: And, as you kind of weighed in on that decision about whether or not to do voice banking, what in addition to having that control and being able to do something about it, were there other motivating factors for you?

Michelle: Yeah, I wanted to be able to have something that sounded like me because you hear so many things that sound nothing like what I would think the person was. I didn't really want to sound like a computer, if and when I need it. And I wanted key things, wanted it to be more me where I got to say stuff in my tone and how I would say it.

Mike: That makes a lot of sense. I hear from some people living with ALS that the primary reason that they do look into this sort of technology is because they don't want that voice that sounds robotic. I think many folks associate synthesized voice with the late Dr. Stephen Hawking, who of course didn't have access to voice banking technology at the time he lost his voice but. You, it sounds like you wanted something that was going to be more you, more connected to your identity.

Michelle: Exactly and I wanted I also read a couple story books so I had something to leave behind.

Mike: And where was it that you completed your recordings? Did you go to a nearby clinic or University?

Michelle: I went Minnesota State University Moorhead with Maribeth Plankers, there are an awesome group. She used the Audacity system and yeah we spent about a total of three hours doing, on different days, but yeah it was, it was a really great experience. I would, you know if someone wanted to do that I would highly recommend it.

Mike: And, can you walk us through that process a little bit? You go, and in your case you went to the University, and do you sit down in kind of like a sound booth or a lab of some sort?

Michelle: You're actually in a soundproof booth, which is kind of, oddly very relaxing and calming. You were in there with two of her grad students and they kind of prompt you when to say what and you know you say hello and they pause you and type in hello and then you get to listen to yourself say it back and and so yeah it's kind of an interesting experience, but I was a little overwhelmed at first, but yeah like I said I got very relaxed and we had a good time with it.

Mike: Do you kind of get into a rhythm I suppose as you're reading through those lines you start to anticipate what they'll need in terms of levels and and pronunciation and that kind of thing?

Michelle: Yeah, you do and you know if they noticed that I was getting tired we'd take a little break and get some water and that kind of thing so. Like I said, the first session was only about an hour, the second one was two; that one, and it was a little warmer day so that little closed in box we opened it up a couple times to let in some fresh air. Get three bodies in there, it gets a little cozy, but.

Mike: Yeah, and was it, was it a little bit draining just to, I think about having to speak and recite those kind of lines for more than an hour; did it wear you out a little bit, kind of going through that so much at once?

Michelle: A little bit because not only were we doing that I also had the giant binder on my lap, flipping through it, and as my left arm is weak anyhow so that was kind of a struggle there after awhile just holding the binder, so.

Mike: Sure and so, you wrapped that up. When did you, when was your last session? When did you complete the process?

Michelle: May 3rd.

Mike: oh, ok, so not that long ago.

Michelle: Not that long ago, yeah. The first one I went was in January and then we kind of waited for the weather to get a little nicer.

Mike: So, have you had a chance to hear your synthesized voice? I know it takes a while for them to put that together. Have they sent it back to you yet?

Michelle: I haven't got all of it back, but they did let me listen to a little bit that first day in January after I had read the storybook, and so that was kind of fun. They said, "oh you should hear this"and it was neat. I didn't sound quite as Minnie Mouseish as I thought I would.

Mike: Sure.Yeah, hearing your, even if it's just a straight recording, hearing your own voice back and sometimes be a little bit strange. It's not necessarily how you hear yourself in your head.

Michelle: Right. So that was really different.

Mike: So, when they send you your synth voice back, your full voice back, are you planning to use that? I know ModelTalker and Predictable and some of the other software pieces that we can put on tablets now, have they they told you how you might be able to use it?

Michelle: She did say there was a way to, because they'll send me like a zip drive or whatever and we could put that in. I'm also gonna try the Acapela through the ALS Association. I've been set up for that, so we're gonna give that one a try too just to kind of compare, see which one we think sounds better with my voice.

Mike: Yeah, that's one I want to talk to you about because, like most technology and software, this is an area that's evolving very quickly. It seems like every few months there's a new version or tool that in some way streamlines things just a bit more and some of these programs even make it possible to record at home with a headset mic similar to the one that you're using to speak with us today. And there's that new software you mentioned, Acapela, that I'm told produces really high quality results in less time and I know that the ALS Association and Team Gleason have started to utilize it. What do they tell you about what's different between Acapela and Audacity, what you were using before?

Michelle: I think Acapela is more of my synthesized voice that I will say like three hundred and twenty phrases and then they'll take that to convert into my voice. Where the Audacity I think is just my voice in snippets, if I understand correctly.

Mike: Okay, sure, that makes sense. Michelle,we often talk about ALS being a disease of loss, losing kind of one thing after another, and to lose your voice something that's very much tied to your identity of course that can be, I can't imagine how difficult that is. Thanks to some of these technological advancements some people are utilizing technology like voice banking to get a piece of their vocal identity back. What would you say to others that are in a similar position and are maybe considering going down this path, but are uncertain about it and may have questions, what would you say to them?

Michelle: I would tell them they should give it a try. I mean, I'm not gonna say it's for everybody, but definitely look into it, discuss it with your family. I mean we sat down as a family, all eight of us, and weighed the pros and cons and we just felt it was something worth doing. I mean if you don't want to use it you don't have to, but it's there.

Mike: Sure.

Michelle: You know, do it while you can while your voice is strong, don't wait.

Mike: Right, something that's good to have down the road. Was it something that your family specifically, was it a topic that they wanted to talk about and say, you know, your voice is important to us.

Michelle: They did say that. My son said he wanted me to be able to say, he wanted to hear his Clayton Joshua no matter what when he did something wrong, so you know there was that. So, you know, there was just certain things that we wanted we knew we wanted to record. My kids have had this long-standing joke since they were in high school that there's a word mom won't say. I won't say it now. However, on the end of my last recording I did say it so, when I can't have a voice I can play it for them. They can have it for a later date, so yeah just that kind of stuff you know.

Mike: Yeah, things that are very personal to you, very important to you and your loved ones. Just back to Acapela really quickly, did they tell you when you're gonna be able to record that or is it kind of up to you at this point?

Michelle: It's kind of up to meat this point. They they sent me everything, I just need to get it set upon my laptop. You do a test of like twenty phrases and then they'll get back to me and let me know if the quality is good, if they think my voice is okay, and that kind of thing so you don't spend, you know, three hours recording and then they say "oh, we can't use any of it". So, that's kind of nice. So you do a test first.

Mike: Okay.

Michelle: And then they'll let you know how it's going.

Mike: That makes sense. Well I think this episode will probably air before we have a chance to hear your synthesized voice, but if you wouldn't mind we can reconnect with you after you've gone through that because we can kind of follow up on how that turned out and see what you thought.

Michelle: Yeah, that'd be great!

Mike: Cool. Thank you very much for the time today Michelle. We are so grateful for your perspective and your willingness to share your story.

Michelle: Well thank you for having me, it's been quite an honor. I'm glad Kristin suggested it.

Mike (narration): We wanted to follow up the conversation with Michelle by introducing an expert invoice banking and we found exactly that in Daniel Vance of Team Gleason in New Orleans. Daniel is an Occupational Therapist by trade and as part of Team Gleason is helping families all over the country with their communication needs. We stole a few minutes of his time for a phone call on the subject.

Mike (in studio): So, I'm on the phone today with Daniel Vance of Team Gleason to continue the conversation that Michelle Trautman and I had about voice banking. Welcome to the podcast Daniel, we are excited to chat with you.

Daniel: Thank You.

Mike: Daniel is an Equipment and Technology Coordinator and Specialist with the Team Gleason foundation and rather than have me mess up talking about what y'all do Daniel, can you tell our listeners a little bit about what exactly Team Gleason does for families living with ALS?

Daniel: Sure, I'd be happy to. So, Team Gleason kind of operates with several different initiatives that we provide assistance with and I guess I'll start was saying we tend to try and assist every individual who comes to us in whatever way we can best do so.

Mike: Sure.

Daniel: The general assistance that we provide or the most commonly requested are for power wheelchairs. We provide assistance with the seat elevator portion of the chair since that is typically denied by insurance and we strongly believe that it's a beneficial aspect to the chair for transfers, for social engagement, for ability to reach items on shelves, for just a slew of different reasons. So, that's typically the most generally requested power wheelchair assistance. With speech generating devices we often assist with the copay. Again, insurance will typically cover about eighty percent, which leaves a copay of about twenty percent, so we often work with manufacturers to cover that twenty percent cost. If there's, for whatever reason, an individual either cannot purchase their own, insurance denied it completely, or for the situation it's not necessary for them to have a speech generating device because they still have good vocal quality, but they have lost access to a computer based on just the progression of ALS and they no longer have access with their hands, we can also place long-term loaners of equipment. So, with speech generating devices it's kind of a dual assistance where it's either providing assistance with the copay to by personal device or linking them with a long-term loaner. Then we provide assistance with message banking and voice banking where we will pay the cost of either ModelTalker, Acapela, or both depending on the person's personal preferences and we also provide some technical support and assistance on the backend of making sure they're able to download the program's work through the programs appropriately and just providing that support through throughout the process.

Mike: Sure.

Daniel: We also have a program, which is our Adventures program where we will assist individuals in continuing to live their lives and goon trips or vacations or kind of those meaningful experiences whether that's attending a football game, attending a graduation of a child, attending a wedding, or going on kind of some family trip. So, we provide several of those every year.

Mike: Yeah, which is great!

Daniel: So, those are kind of the big aspects we also have Gleason House here in New Orleans where we have several residents that we provide care for on a daily basis.

Mike: It's pretty amazing Daniel what the organization has been able to do in a relatively short amount of time. I think Steve Gleason's story has inspired millions of people to really get involved with the cause and the foundation of which you're a part has done some incredible work both in terms of providing equipment like you mentioned and services, but also legislatively with the Steve Gleason Act and more recently the Enduring Voices Act, which of course ensures access to communication devices for those in need.

I feel like you and I could spend hours talking about a number of ALS related topics, but what I'm really hoping to tap into today is your expertise about voice banking specifically, which is a process that has evolved quite a bit just in the last few years and more people living with ALS are choosing to have synthesized voices created.

We spoke to Michelle Trautman of Perham, Minnesota about her experience with voice banking, but Daniel what are you hearing from individuals living with ALS about why they want to explore this option?

Daniel: So, typically, I would say a lot of times, the process happens where an individual may not be reaching out to us directly for voice banking, but for something else. And we attempt to call every individual personally and have a conversation with them or the family, depending on the situation, just to get a feeling of the situation and to offer things like voice banking and message banking. So, a lot of times we'll go through and discuss the process for them and kind of mention it to them. And so, I think once whether it's they've reached out to us or we've reached out to them for assistance and another kind of one of our initiatives, the rationale or the reasoning is that there's so much, I guess, emotion and there's so much personalization in a voice that a computerized voice cannot really portray and there is something lost with that if an individual has lost their voice. So, that's part of it. There is often a very emotional part of the conversation where they, an individual, is kind of facing that ultimate kind of way of doing it. So, the way we like to address it is looking at it more as, almost more of an insurance that you have this available to you

Mike: Yes, should you need it down the line.

Daniel: should you need it down the line as opposed to not having it, exactly. As opposed to not having it, if you don't. So, a lot of it is that; wanting to have some sort of personal part of it. The downside I guess with the voice banking itself is it's still ultimately a synthesized voice. So, it still is missing that emotional connotation. It is still missing the different ways for instance that you might say yes; where sometimes it's a sarcastic yes, sometimes it's a serious yes sometimes and so you're going to get one version of yes and not kind of all of those fine minutiae that may come along with a yes or a hmmhmm or

Mike: Sure.

Daniel: whatever that may be. So, again, when I'm when I'm talking about this we we talk about both typically message banking and voice banking. With voice banking being really strong on those novel utterances, those things that I'm not gonna think of needing to say down the line and having that more personal sounding voice that reflects your voice, but being able to say whatever it is that comes up in that moment.

Mike: Yeah and for a number of folks that we've talked to about voice banking specifically they speak about identity and how their voice is very much tied to their identity and since ALS is a disease of loss and they feel like they're losing so much, to lose the sound of their voice and the way that they communicate in that way is so difficult. So, getting that back in some small portion with the synthesized voice that sounds more like their own is really important to them; is that kind of what the feedback you hear is as well?

Daniel: That's definitely a part of it and I feel like those instances where someone has heard their synthesized voice for the first time is always a really amazing experience, especially for I feel like almost more so sometimes for the caretakers or the loved ones where they've now gotten to rehear or get to hear that voice and the connection that they have with that person.

Mike: Absolutely, absolutely. And like many things in this age and the world we live in now, it seems like voice banking software is improving pretty rapidly and changing pretty rapidly; how do you and Team Gleason stay on top of the most recent iterations? Are you conducting a lot of your own research or are these software developers, knowing now what you all do,are they approaching you with solutions? How does that kind of unfold?

Daniel: It's kind of a mix of both. So, I mean we're constantly in talks with and working with ModelTalker and Acappela since they're two of our partners. In addition to them, we've been approached by some different organizations and different companies and we're constantly kind of pushing at finding better ways of doing this; whether it's the utilization of less recordings, the ability to do it in a home environment as opposed to having to go somewhere, the ability to do it quicker. I think kind of a good example of that is about seven years ago when Steve recorded his voice he needed over 3,000 phrases, it was several thousand dollars to complete, it had to be done with professional equipment; so now someone, even just in that seven years is a long time, but I mean it's also a kind of in-development of things, it's a pretty short time.

Mike: Yeah.

Daniel: You can do it in your house, you can do with your personal computer, you can do it with around 350, 250 to 400 is kind of a pretty standard range of phrases, it's not in the thousands of dollars, you can do it with a $40 microphone that you can purchase directly from Amazon; so the requirements on end users' side is far less. So, that's getting better. At this point, it's still you have to talk pretty clearly, if you have signs of dysarthria your recorded, synthesized voice is going to have those same sort of characteristics. So, it's finding ways of allowing it to happen later in the progression, it's finding ways of getting everyday technology to also kind of have this built in. So, working with major manufacturers and how you can get their voice recognition software, their systems to also interpret this as speech.

Mike: Right and

Daniel: So, it's a lot of different avenues of partnering with companies to do research and partnering with companies to push the technology.

Mike: For sure and a lot of it is exciting because it is changing so quickly and improving so quickly. And, you mentioned, now being able to record in home and being able to record with your own, simpler setup; that's meant much, particularly for folks that live in rural areas that may not have access to universities or labs or sound booths where they can go and record these kind of things. I mean, as recently as a few years ago folks would be spending hours, spread out over the course of several days, in a booth, to record these phonemically balanced phrases that would then be turned into their synthesized voice, but now, like you said, with Acapela and even ModelTalker to a degree, they can record that at home and that's a much simpler process.

Daniel: Yes.

Mike: And speaking of Acapela, that seems like that's now the latest and greatest thing and some of the samples that I've heard sound really good, really accurate. Are you, have you been impressed with what Acapela's been able to do?

Daniel: So, I've been happy. So, I made a voice recently with Acapela and I was pretty impressed with it, with their their kind of suggested minimum of 350 recordings. ModelTalker is also pushing towards that side. Their new minimum inventory is 215, with those suggested of 400 voices. So, both companies are really pushing to to make it as easy on the end-user as possible to kind of get the process completed.

Mike: That's great.

Daniel: So, yeah. I've been happy with with Acapela thus far. I think one of the things that stands out to me for them is that they have the opportunity, what John Costello is calling the double dip. So, the ability to record both your message banking and creating a synthesized voice.

Mike: Ok.

Daniel: So, one of the things that they're allowing, that's pretty unique, is the opportunity to upload your message banked messages and then using those messages create a synthesized voice.

Mike: Yeah, that's a, well that's a game-changer.

Daniel: Yeah.

Mike: Because for many people who may have an opportunity to do this once in a short period of time, if you can knock out both of those things in one go that's gonna be much simpler.

Daniel: Yes.

Mike: You've mentioned costs and how they have come down significantly over the past few years and there are of course costs associated with voice banking and the tech involved, but organizations like Team Gleason and various chapters of the ALS Association have been partnering to cover those costs for people living with ALS. Can you talk a little about how that process works? Are folks, once they learn about it, kind of just working with you to figure out the easiest way to do it? Is it, are they applying for grants or is it more of a referral situation in terms of how you're connecting with families?

Daniel: So, with Team Gleason it seems to be mostly referral; either we're referring them to our services based on conversations we've had with them or a speech therapist or ALS Association or a clinic; presenting them with these options and letting them know that Team Gleason will provide funding. Our website has a page that talks about message banking and voice banking and on that page you can sign up for Acapela or ModelTalker and kind of connect that account with Team Gleason so that when the voice is completed we will get the invoice for the cost and pay it as opposed to going directly to the individual.

Mike: Nice.

Daniel: So, and then we will do that whether it's being recorded at home, if it's being recorded in a clinic, if it's being wherever the situation we're happy to help as many people as possible with that.

Mike: That's really great. This has been an enlightening conversation, I knew that it would be. Daniel, thank you for the time today and also for everything that you do at Team Gleason.

Daniel: You're welcome. We're we're happy to help as much as possible.

Mike: And for anyone interested in learning more about the foundation's work, I encourage you to visit TeamGleason.org. We will of course include a link in our show notes.

Mike (narration): Dr. Ezgi Tiryaki has long been recognized for her knowledge of ALS care and research and has been in the field through some significant changes to the way in which ALS care is delivered. So, we thought it'd be a great idea to mine her expertise about the current clinical model as well as where she sees ALS care heading in the future.

Mike (in studio): I'm joined today by neurologist Dr. Ezgi Tiryaki.Dr. Tiryaki is an associate professor of neurology at the University of Minnesota, she's also the medical director of the ALS Center of Excellence at the VA Health Care System in Minneapolis. She's an expert on a number of ALS related topics so we are thrilled to have her in the studio today. Thanks for being here doctor it's always great to see you.

Dr. Tiryaki: Thank you for having me.

Mike: We wanted to have you in to discuss both the current and future models of clinical care for ALS. And, by and large, at least in the US, it seems like over the last decade or so most clinics have adopted the multidisciplinary model of care where individuals and their families can meet with multiple specialists in the same visit in addition to their doctor whereas in the past they would have to schedule eight different appointments at different locations on different days and for someone dealing with the challenges of ALS that makes receiving care exponentially more difficult. In addition to those savings of time and energy, doctor what do you think are the other benefits of this current model of care?

Dr. Tiryaki: There are many benefits to being seen in a place where everybody is in tune with this disease. It is a rare disease. A lot of providers outside of these centers may not have encountered ALS patients or the specific needs that a person with ALS and their family has. And so, having people who are absolutely tuned in, experts in the area, have seen this a lot, have done this a lot, is a tremendous benefit.

I remember vividly when I went to an ALS clinic for the very first time, I was a trainee in Indiana. This was part of my residency training in Neurology. This is almost 20 years ago, I hate to admit that, almost 20 years ago, but it was really palpable how the dynamic changes when there is a healthcare team that comes together around a patient and their family. I really had a sense for this is how healthcare should be delivered and it is a model that could be applicable to many other diseases, but luckily in ALS we have certified centers of excellence and we have funding and support to put teams like that together to serve our patients better.

Mike: Sure.

Dr. Tiryaki: There is research about how these clinics work. Some research, for instance from Ireland, says that being taken care of by a multidisciplinary team allows people to live about 7 months longer compared to people who are not taken care for in a team. There's research that says that people who go to centers of excellence like this, where a multidisciplinary care team is present, have better utilization of the resources that are available, have better adherence to practice guidelines, for instance, they might have access to non-invasive breathing support when they need it. They might have better access to feeding tubes when they need it. So, there is research that indicates that people actually live longer as well as better when going to a multidisciplinary care setting.

Mike: Wow. And, for our listeners, I know that every clinics a little bit different, but typically what group of clinicians are made up in that multidisciplinary team? Who are you seeing if you go to one of those clinics?

Dr. Tiryaki: So, usually the clinics are arranged in away that the patient and their families stay put and a variety of team members come through. We usually joke that we always outnumber our patients. So, part of the team usually is a nurse who coordinates the care. Then there are providers such as Physical Therapy, Occupational Therapy, so people who focus on using the strength you have to the fullest and providing you with the assistive tools that you might need for mobility and for your activities of daily living. A Speech Therapist is part of the team. They help assess speech as well as swallowing and also help connect the patient to technology to enhance their ability to communicate through all phases of the disease.

Mike: Sure.

Dr. Tiryaki: Social Work, a very important part. There is a lot of paperwork to navigate, a lot of decisions to be made in terms of the goals of care, but also financial goals and navigating insurance companies, other community resources; so social workers are essential to the team as well. Dieticians. We know that maintaining weight is a very very strong predictor how people do and so we pay a lot of attention to what people eat and how they're managing their weight. So, the nutritionist or dietitian is a very important part. Who am I forgetting? The neurologist, I guess, is also part of the team.

Mike: I was gonna say, the doctor stuffs in there at some point.

Dr. Tiryaki: There's some doctor stuff. So, the neurologist usually is the person who makes the diagnosis. The neurologist is the person who manages a lot of the symptoms of ALS; even though ALS is not a curable disease, it is a very treatable disease and a lot of the symptoms can be treated with interventions. It might include prescribing medications, but it might also just include teaching; it might include non-pharmacological interventions. So, treating symptoms is a very big part of what the neurologist does. The third thing that neurologists usually do in clinics like this is that they help navigate the disease process.There are certain milestones that are predictable; we know that, for instance,people will have increasing difficulty swallowing.

Mike: Right.

Dr. Tiryaki: And they will have increasing difficulty maintaining their intake of nutrition. So, navigating decisions around feeding tubes are usually also done with a neurologist.Similarly we know that people will gradually have difficulty with breathing; so, again, making decisions about how that issue is best navigated for that particular person, for their particular situation, is something that the neurologist helps with. You might say we help figure out what is most important to the person and try to tailor what we do to achieve those goals. And then, lastly, research. The neurologist is usually the person who helps keep the clinic connected to research. We talk about the latest developments, if there are research studies that would be of interest we share information about them,and keep our eye out for what is happening.

Mike: Doctor you just went through this list of all the clinicians that someone may see in a multidisciplinary setting and there's a lot of things that go into that, what do you think might be missing from that group?

Dr. Tiryaki: So, there's two things that strike me as missing from the group and, again, I had the fortune of working with those specialties directly in the clinic that I used to work at, at Hennepin County Medical Center. I think having somebody with a background in Rehab Medicine, Physical Medicine and Rehabilitation or PM&R; is a real asset. So, it's a physician specifically trained in the rehab aspects of a disease and they have a very unique way of working together with the physical therapists and the occupational therapists in making things possible like adaptive hunting or you know how to travel successfully or be able to do the things that somebody wants to do. They just have a very unique perspective on that including how to maintain intimacy in ALS which is an area I think that's often neglected in clinics. The other type of specialist I think brings absolute value to the table is a Palliative Care Specialist. There are some neurologists like Dr. Sam Maiser who is trained specifically in palliative care, but I think most clinics don't have that benefit of having a palliative care expert as part of the clinic day. And, again, being an expert in symptom management as well as in how to navigate difficult decisions, especially when there is varying opinions in a family, can be very helpful.

Mike: So, on one of these visits if a family or an individual family sees five, six, seven specialists and then talks to their neurologist is that team then, are they kind of huddling up and discussing how the visit went and their findings and figuring out probably the best path to take from there does that happen that same day?

Dr. Tiryaki: I think that's what the magic sauce of these clinics really is, is that there is this level of communication they cannot happen if you have a fragmented care delivery system. Just by virtue of being at the same place at the same time and seeing the same person, we have a built-in clinic huddle, some clinics do it at the beginning of their day, a lot of clinics do it at the end of the day, everybody talks about what they have done or what they have recommended or the issues that they have noticed and because we share it as a group and each of us brings our own expertise to the table we really can make sure that we stay on top of ALS and so that ALS doesn't run the game, but we are helping to navigate this as best as we can.

Mike: So that's where the multidisciplinary model is working, those are some of the benefits, thank you for outlining those. But, nothing's perfect. In your opinion, if we're looking to the future, how can the system be improved? What are some of the remaining challenges do you believe with this model?

Dr. Tiryaki: So, one challenge we have in our health care system is that it's not an easily sustained model in terms of its cost.

Mike: Okay.

Dr. Tiryaki: So, it's always a little bit, I would say, at risk. We have sources, we get funding, a lot of clinics get funding through the ALS Association or through MDA. Some places have private foundations or additional dollars that help support those types of clinics, but they're not sustainable in our current billing system and insurance system. And so, that is something that keeps us up at night. This is something that I think most clinics are aware of and worry about. The other piece is that even though we are much more patient-centric than having patients go to eight different providers,I don't think we have really achieved the level of patient-centeredness and family-centeredness that could be possible.

Mike: More personalized medicine you're talking about.

Dr. Tiryaki: More personalized to the individual. So, one thing that strikes me for instance about the certified centers of excellence is that they are defined by what goes in. We have very clear criteria of who needs to be part of the clinic, that a clinic huddle has to happen, that research access has to be there. So, there's a list of criteria that these clinics adhere to.We don't have a corresponding list to hear the outcomes we want to see. We want every person to be connected to palliative care, we want every person to have a certain level of quality of life, we want sort of measures that define what it looks like, what you get, after you put all these things in. We'redefined by what goes in not so much by what comes out.

Mike: I've heard you speak about that before, standardizing outcomes, and you think if you're able to to kind of turn things on its head and measure those outcomes instead you're going to get better care, is that what I'm hearing?

Dr. Tiryaki: Yeah, so, I happen to be an educator and there's a big shift in how we see, for instance, medical education. We had this fixed time, variable outcome model for a long time. For instance, medical school is four years, everybody goes to medical school for that same period of time, but you might have variable outcome in how much people have learned in those four years. And so, medical education has now switched to saying we want to define the outcome, we want everybody to be a capable doctor coming out of medical school. Somebody might achieve that goal in three years or three and a half years. There's nothing magic about the four year time frame to achieve a certain outcome. I feel the same about the ALS clinic model.

There's nothing magical about saying all these specialties have to be present in a clinic if we don't think about what the outcome is that we want. And so, maybe it is okay to a variable input, not every patient has to see everybody on the team or not everybody needs everybody on the team. For instance, if you think of somebody where ALS starts in the muscles for speaking and swallowing, they might not really need the physical therapist for quite a while. The reverse is true if you have difficulty with a foot drop and you have difficulty getting around, but your voice is perfectly fine for a very long period of time, you might not necessarily have to have the speech therapist be a part of your clinic visit. So, really individualizing and customizing what goes in, but having a certain standard for what you want the outcome to be in terms of the satisfaction of the patient or the health outcomes that you're wanting to achieve I think is a better model. That would require us to think a little bit differently of how we do things.

Mike: I've heard so many individuals living with ALS talk about how helpless they felt after their diagnosis and how helpless their families have felt and having really any sort of control and anything that you can give back in terms of control really means so much to those individuals.

Dr. Tiryaki: Yeah, there's this paradox that when people come to our clinic they are not really looking forward to it, I would say, because it reminds you that you are living with this,and the measurements we do and the assessments we do remind you that things have progressed. We put a number on it. You know, your score went down, your breathing number went down, so I don't think it's an easy thing to come to the clinic and it is definitely exhausting mentally as well as physically. But, the best compliment we also get is that people still think it was a good thing to do when they leave and they feel that they walk away feeling more empowered, having better resources, having the right tools to make the next days and weeks just go smoother.

Mike: That is a very meaningful outcome, absolutely. We had Dr. David Walk on our last episode discussing research and he mentioned the importance of collaboration and sharing findings in that world to help drive progress. How much collaboration is there on the clinical care side? Do doctors and their teams connect with staff at other clinics, in various regions, either state to state or around the world? Do they talk about what's working with them? Is that, does that happen?

Dr. Tiryaki: Again, I think we're very lucky here in Minnesota because we get together on a quarterly basis with all the centers in the region. I don't know of any other areas in the country that have this level of networking and connection between their clinical programs. So we get together and share our best practices, we usually learn together, have an invited speaker and learn about a topic that is relevant for our patients, so we're all on the same page. We inform each other about the research that is going on at each center. So definitely a good thing to do. There's not as much collaboration, I would say, in terms of the actual delivery of care. We are very lucky here in Minnesota. We have certified centers at the Mayo Clinic, at the University of Minnesota, at Hennepin County Medical Center, at the VA, and we have about 500 people in the state living with ALS today.

There are states in the country that have no centers like this so we have a real density of expertise and passion and caring in our area here. I sometimes wonder how we could leverage that to reach areas where patients don't have access to centers like this. Even though it's a patient-centric model, we still rely on the patient coming to us and I have patients who come from the Dakotas, who come from Wisconsin, who have maybe six to eight hour round trips sometimes to come to our clinic and I think we might have opportunities here to get the care to them, where they are.

Mike: That's a perfect segue because I want to ask you about telemedicine, a very kind of hot topic right now, and one that I think many see as the future of medicine for a number of fields. How do you see telehealth visits fitting into ALS care?

Dr. Tiryaki: I think telemedicine is an excellent tool that we could use in the realm of care delivery for ALS patients. There are so many uses of telemedicine, for instance, it can be used to connect a local doctor's office to a center with expertise. So, let's say you're in a rural area perhaps and you're seeing your primary care doctor or local neurologist, that person from their office could link into a center and there could be a consultation or conversation. Telemedicine can happen in people's homes. People can stay in their home and connect to their care team and see the speech therapist or the dietitian and the neurologist by videoconferencing from their home.

Telemedicine can be used to monitor people; there's a lot of diseases, for instance, where telemedicine is used very successfully to monitor a patient proactively in their home setting. A perfect example would be, for instance, congestive heart failure. One thing to watch would be a person's weight, also their vital signs, and so there are telemedicine programs where people have a scale in their home, that scale is connected through Wi-Fi to the phone or a computer that sends the weight on a daily basis to a center, and a nurse at that center looks at the numbers for a lot of different patients, but if she notices or he notices a change in the weight there might be a call back to the patient to say, "Oh what's happening? How are you feeling? Your weight is up." Could this be a sign that your heart is failing? Something like that could be possible with ALS as well. If we could monitor if people are having increasing difficulties with breathing throughout their disease not just when they come to our clinic every three months.

Mike: Yeah because I imagine sometimes every three months is not enough if you have an issue that's arising with your disease and you don't have a clinical visit for another six weeks and trying to schedule something like that and even getting to the clinic,wherever it may be, very very challenging so having access to something like a telehealth is it might be the solution.

Dr. Tiryaki: Yeah it would have incredible opportunities in terms of catching things early, in terms of using less energy and less time to come to the clinic, sometimes even not having to do that extra step of calling if we had ways to connect where we would watch, where we would be in touch, it would take that extra step out of even having to call to make an appointment. We could reach out and say, "Hey, we noticed this is happening. Tell us more. What can we do now?" So, that could be the future of care for ALS and I would love to see us come together in those meetings to really think about how we could change the care model so that we scale it up and scale it down at the same time. Scale it down meaning that we get down to the level of the individual to say what does this person really really need from us, but also scaling it up that we can get it to a population of people who live with that very same disease all across a variety of geographies and areas in the country. So, scaling it down by scaling it up at the same time, I think that is the future of ALS care that we have to think about.

Mike: Another very smooth transition because the next thing that I want to ask you about is that individualized care and I've heard you say before when speaking about ALS care and research that perhaps someday down the road we'll be able to individualize care to the level of specific genes. So, in other words, if you have this particular gene in your DNA, and we know that impacts your disease progression in a certain way, we therefore may be able to tailor your treatment plan accordingly. You think that that's a place we'll reach at somepoint down the line?

Dr. Tiryaki: I absolutely think so. We have over the last I would say five years have seen tremendous progress in terms of understanding the genetic basis of this disease and one of our struggles with ALS has been that we never knew what really causes the disease and if you don't know what causes the problem it's very hard to target that and do something about it.So, knowing genes and knowing what these genes do and having methods now that are able to block those genes, block what they do, is really becoming a reality. We are having studies that are going on right now targeting some of the more common genes in ALS and I absolutely hope that those things can be scaled up to be available to become FDA approved and really show some impact on halting the disease progress.

Mike: It's clear we have along road ahead of us, but I think our listeners will really appreciate hearing your perspective doctor and knowing that you're on their side as we look to the future of ALS care and trying to make better care available to more people.

Dr. Tiryaki: Thank you.

Mike: I knew this would be informative, but I feel like we got even more than we bargained for so thank you very much for taking the time out of your busy schedule Dr. Tiryaki to be with us on the podcast.

Dr. Tiryaki: Yeah, thank you.

Mike (narration): For our final segment, we spoke with Donnie Raveling who is living with ALS here in St. Paul, Minnesota about the need for home care for many people in his situation as well as some of the challenges presented by our current health care system. Here's what Donnie had to say.

Mike: (in studio): We are joined in the studio today by Donnie Raveling of St. Paul, Minnesota who is living with ALS and generously offered his time to speak with us today.Welcome to the show Donnie.

Donnie: Thank you very much. It's good to be here.

Mike: It's great to have you. You're looking excellent in orange. We're gonna take some photos.

Donnie: I want the guy to be known as orange.Mike: That's right. I should tell our audience - orange is very much your color. You've always got a few pops on.Today you've got a really bright, cool shirt on. It's good to see you. Before we get into home care, which is what I wanted to pick your brain about today; could you provide our listeners with a little bit of background about yourself and your ALS diagnosis?

Donnie: Well, I was diagnosed in September of 2017, so not quite two years. I currently am having a little bit of breathing issues, that's how they found the ALS. So, I'm using a BiPAP during the,the BiPAP machine which is called a trilogy, during the day. I'm like to do things, I like to be outside. I'm kind of reworking some of the things I used to do because I can no longer do them. But, I used to walk so instead of walking I stroll now. That's what I call stroll.

Mike: There you go.

Donnie: In the wheelchair. I like to talk to people, so I spend a lot more, I get a lot of my energy from that so, but kind of depending on where I'm at and who I'm with I kind of gauge that, but I should slow down because the more I speak the more I...

Mike: Use your energy.

Donnie: Lose my energy.

Mike: Sure, sure. Has the BiPAP helped with that a little bit?Do you find yourself more energetic as the day goes on

Donnie: Oh, yeah.

Mike: than you were previously?

Donnie: Yep, yep.

Mike: That's good. You're living in St. Paul now and as you mentioned your disease has progressed to the point where you're using a power chair to get around. It sounds like you're gonna be moving soon, what is your,what's your current care situation?Donnie: Well, I'm needing some help in the shower; especially washing, currently washing from the knees down. I don't reach that far down real well. I could use some help washing my hair so, this, that's so that's my goal is to find a place that I can have that. Where it's kind of a, it's not around the clock, but it's a it's a service.

Mike: Help with those personal care needs, yep.

Donnie: And then I also need help daily with shaving, I don't have a long beard, but I like to keep it short.

Mike: Yeah, you look good with that scruff. That's a good length for you. I can't pull that off, mine's too patchy, so, I can't do that. But, having those kind of personal care needs taken care of is what you're after and you're gonna have, for your new residence you're going to have that.

Donnie: Right.

Mike: I think Medicare and Medicaid are probably the two coverages that come to mind immediately and for anyone under 65 that are facing something as serious is ALS, there may be some coverage for home health care available to you, but as anyone who started down this path will tell you and, as I'm sure you've discovered, it's lined with red tape. There are many requirements and restrictions.

They're not going to cover things like round-the-clock care or personal care services that you talked about earlier,things like bathing and dressing or using the toilet. Meal delivery services,what you just mentioned, in most cases those things aren't covered and what is covered is usually only offered either short-term or intermittently. And even if you're someone who happens to meet the majority of their requirements for dual eligibility in Medicare and Medicaid, they're still likely gonna be significant out-of-pocket premiums, deductibles, co-payments. It's one of the reasons you hear about ALS being such a financial burden in addition to the physical and emotional challenges it presents.

Donnie: Yep, correct. Yep. Yeah I find that, so not only food, but grooming, which includes showering, you also need some help with just even getting around and that can be costly. So, we happen to have here in the cities, transportation, which a person can use,but if you're not comfortable with it

Mike: Yeah.

Donnie: it's daunting so you would need someone to go with you, you know, maybe for the first few times or...Now there's all kinds of daily living skills that a person may need help with

Mike: Mm-hmm. We haven't mentioned private insurance and that's an option for some folks that are eligible through an employer's plan, but again the costs are typically going to compound regardless of the coverage you have so, Donnie, in your opinion what is it that needs to happen? Do we have to work harder on the legislative front to increase federal aid? Is it conversations with the insurance providers to, I guess, negotiate more reasonable rates for people living with ALS? How do we move forward?

Donnie: Legislatively we could do, for particular diseases especially, we could do a lot more with not having somany loopholes.

Mike: Mm-hmm.

Donnie: If, I don't know what else to call it except a loophole.

Mike: Yeah.

Donnie: With, especially like with Medicare, there are some loopholes that forcertain diseases that, because they want to they want to do it across the boardfor everything.

Mike: Right

Donnie: And it's not the same for everything.

Mike: No, no.

Donnie: So, that's what I see legislatively, that we need to have less loopholes for certain disorders.

Mike: I think everyone would agree with you on that front Donnie. You mentioned it's different with ALS and ALS is unlike other diseases and, even within the ALS community, everyone's disease progression is different. So, you can't just say having ALS is like having MS or Alzheimers or Parkinsons; they're all different diseases and there needs to be special elections, coverages for specifically those diseases. You can't just group them all together and say everyone needs the same coverage and that's the fight that we've been having legislatively for years and I think we are making progress, but clearly there's so much more that needs to be done and loopholes is the right word and it's probably the polite word to say loopholes. I've heard others kind of use some more colorful language when describing the insurance process and how frustrating it can be, so.

I think part of when you talk to people about home health care and some of the home health care professionals they've worked with, it's really critical that whoever is coming into the home to assist has an understanding of what ALS is and the needs of the person that they're going to be serving because we've said it many times there are differences about living with the disease and people's progressions are unique and if you come in without that sort of education and knowledge it's going to impact the care you're able to provide, so. That's a, it's kind of a sub-topic of the home health care access piece because just having someone come in is one thing, but having someone who's going to help and understand what you're going through and understand what your needs are, that's critical.

Donnie: It's very critical, yep. To be able to kind of drop the preconceived notions of what a person needs

Mike: Mm-hmm.

Donnie: is the big thing.

Mike: Mm-hmm.

Donnie: Especially with ALS because one moment I can feel just, I can feel pretty good with something.

Mike: Mm-hmm.

Donnie: The next moment, nope, I don't feel good at all.

Mike: Yeah.

Donnie: That's because there's some exhaustion that goes on and they can lose some strength, they can lose some feeling in their limbs.

Mike: Yep.

Donnie: They may lose some of their voice. Just help them.

Mike: And all of those things are gonna impact the care that they need.

Donnie: And then to allow them to do it, if they still can, is another issue too. Don't, I would say don't just just don't automatically do something for someone.

Mike: Right.

Donnie: Ask them if they want help with that because it's, it's so important to have that self esteem and sometimes the self esteem is only kept if a person can do it for themselves and encouraging them if they say "yep, I need help with that". Just encourage them because we don't, they don't, maybe they can do it and they want to give up because that happens too.

Mike: Yeah, losing independence must be such a big part, a big challenge, with this disease and not being able to do the things that you have your whole life and seeing those kind of slip away it must be really, really hard.

Donnie: It is, yep.

Mike: Well, Donnie, I want to thank you for spending some time with us today and for providing your thoughts on a really, really important subject. I'm sure our listeners will appreciate hearing from you on this and thanks so much for coming in.

Donnie: Thank you for having me. I appreciate it.

Mike: Hope we see you again soon.

Donnie: Yep, good, I hope to be here.

Mike (narration): After speaking with Donnie we asked Jennifer Myhre of the ALS Association to provide some additional context to our home health care discussion. Jennifer works with families on a daily basis to navigate the complexities of insurance and Medicare and she makes some strong points in our final segment.

Mike (in studio): I'm looking forward to speaking with our next guest for a number of reasons. Her name is Jennifer Myhre and she is a Care Services Coordinator for the ALS Association.She has helped connect individuals and families facing ALS to resources and support for more than a decade and she's the perfect person to introduce to our conversation about home care. But, I'm also excited to have her on the microphone because she has this amazingly soothing voice. Welcome Jennifer, thanks for being here today.

Jennifer: Thanks Mike.

Mike: It's true, I feel like people would listen to you read an encyclopedia. You do all of our voiceovers for our PSAs and our ads and happy to have you on.

Jennifer: Well that's very nice, thank you.

Mike: But, the real reason we wanted to have you on Connecting ALS was to talk about home care and we had Donnie Raveling join us recently to give his perspective, as someone living with the disease, but I'd like your input since you hear from people every day about this issue and let's start there. Where does access to home health care rank in terms of a priority for people, and not just those living with ALS, it's a big question for a huge swath of the population right now, correct?

Jennifer: That's right. It ranks way up to the top. Access to home care for people with ALS and for anybody who is aging, is differently abled, is something that is of key importance.

Mike: And among the roadblocks that people will run into when seeking home health care, biggest one has to be cost right? Because Medicare and Medicaid, which a lot of people are depending on in this instance, that coverage for this situation has a ton of gaps in it.

Jennifer: That's right. There's a small portion of the population who may qualify for Medicaid. A person has to have an income that's low enough and assets that are few enough in order to be able to tap into that program. Once they do they can qualify for quite a bit in the way of care at home, but again, as I said,that's a small portion of the population. And while many people with ALS do eventually qualify for Medicare, as you noted, Medicare has pretty limited coverage when it comes to daily care in the home.

Mike: Mm-hmm. What are some of those limitations?

Jennifer: So, in order to qualify for care in the home, under Medicare, a person has to first be home bound. Meaning that, with the exception of medical appointments and I believe now it's attending church, somebody is unable to leave their home. So that's first and foremost and then they have to have some sort of skilled need according to Medicare and skilled need could be something like education following a hospitalization. So, for example, people with ALS oftentimes opt for a feeding tube, which is a medical procedure that you know may require depending on the situation a stay in the hospital, but certainly some monitoring at home some of the time. A nurse to come out and make sure that it's healing well. Sometimes skilled care involves a Physical Therapist. So, a PT to come out and evaluate the situation at home, provide some teaching on a certain piece of equipment. So, something that Medicare considers a skilled need that would require a nurse and/or a physical therapist is generally what it would be. And, as you talked about earlier,even then this is temporary. This is not an ongoing type of care in the home.

Mike: And there are limitations to those types of care themselves, correct? I mean,things like personal care services aren't covered, why is that? Is that just a cost issue because it's so specialized? What does that relate to?

Jennifer: My understanding is that Medicare would be looking at what is absolutely necessary to the situation that they're providing coverage for. Now sometimes if somebody has a skilled nursing need, let's say it's a wound that needs monitoring and managing, then Medicare might also cover a home health aide to come out once or twice a week to assist this person in the bath, for example. That can often happen during an episode, so during that limited amount of time they would cover what they think is medically necessary given the skilled need.

Mike: Sure.

Jennifer: And that's not always going to be a home health aid.

Mike: Right and in most cases, what they deem medically necessary isn't going to cover just routine bathing or hygiene things, using the toilet, getting dressed, those things typically aren't covered.

Jennifer: That's right. You know, those are what Medicare would call "custodial care". And custodial care is that, you know, day in and day out types of care that somebody might need. You know, activities...We consider ADL's or activities of daily living, those things that we all have to do every day when we get out of bed in the morning; so we get up, we use the restroom, we take a shower,we brush our hair, brush our teeth. Medicare considers those kinds of things custodial things that we all do every day versus some sort of skilled need in the home.

Mike: Right.

Jennifer: It would make sense that if somebody needed help with those things that there would be a way to pay for them.

Mike: Yeah, absolutely. So, let's say that I'm someone that's living with ALS or I have a loved one that's living with ALS. I call the ALS Association to talk to you about what my options are. Where do we even begin? I mean, do you have to just go down this list and ask a bunch of questions before you even know where to start?

Jennifer: Sometimes. You know, I often, this is a common question that I do get.It's a common phone call and it's it's one of the harder phone calls take and to have to talk to people about. I really start with the landscape of health care. Or, I should say, I start with a landscape of home care. And we do run through a list.We talk about what Medicare is and how it's different than Medicaid because people often confuse those two things. We talk about how to qualify for those things and what the limitations of those things can be.I always ask people if they're a veteran or not and if they're a veteran then it's a different situation. Fortunately for our veterans they have access to more benefits, more things like care in the home, and so then it becomes a slightly easier conversation. Often the conversation will turn to ways that people can bring together the informal supports that they have in their lives to see if that's a way to help manage some of the needs that they have in the home. And people don't often expect the conversation to turn to that, but it is important to talk about those things because they generally are the things that do fill in the gaps of care.

Mike: Right, right. If someone checks all these boxes and meets all these qualifications to receive essentially the maximum amount of home care they can and they're not a veteran, let's say they don't have access to those veteran's services, but they check all the other boxes; but they're someone who is in need of 24-hour care, let's say they are in later stage of the disease and perhaps they're using some kind of ventilator, something like that,and they need longer term care. They meet all those qualifications, they're still going to end up paying quite a bit out-of-pocket even if they're hitting all those marks, right?

Jennifer: Oh, that's absolutely true. And one of the things that, you know, regardless of where somebody is in their disease progression, we do talk about the option of privately paying for care and for most people, who are earlier on in the progression, it is assistance with those activities of daily living and that it requires typically a home health aide, a PCA or personal care attendant, or depending on the state that they live in it could be a CNA and the average cost of something like that is going to be $35 an hour, give or take. And for people who just are looking for a couple of hours of help a day that adds up.

Mike: Yeah.

Jennifer: And is cost prohibitive for many. And so then if you're talking about, you know, the disease progressing to the point of needing 24-hour care, it really becomes an impossibility for most people to pay out-of-pocket because you're looking at something between thirty and forty thousand dollars a month.

Mike: Wow.

Jennifer: So more than some people make in a year.

Mike: Yeah.

Jennifer: So, what tends to happen in those situations quite frankly is people pay for as long as they can out-of-pocket and then eventually may qualify for Medicaid because they've spent down the resources that they do have and now do you have a low enough amount of money where they can qualify for Medicaid.

Mike: That's really unfortunate.

Jennifer: Yeah, it's sort of an, it feels like an all-or-nothing kind of situation. It is unfortunate. I do think that we as a society need to figure out howto get better at supporting one another and receiving support more informally because there is that type of potential help around us, some more than others. It just depends on a person's situation, but the more that we can tap into that alongside with any progress that is being made around home health care I think is going to be crucial.

Mike: Right.

Jennifer: The ALS Association does have a program that we talk about, it's a model called Care Connection and it does instruct families essentially on how to tap into potential networks that may exist around us that we may not even think about. So, for example, if I belong to a faith community are there people in that community who may be able to assist me at home. Neighbors, former co-workers, these kinds of things.And then, you know, how do we ask for that help because from doing this as long as I have one of the things that I do see consistently across the board is that the people around us do want to help.

Mike: They have to be asked.

Jennifer: They have to be asked and they just don't, yeah, they don't know how necessarily. So, how do we,how do we direct that good intention to making that work for people in the home?

Mike: Mm-hmm, mm-hmm, that makes sense. On the agency side of things, the organizations that are providing home care for individuals and their families; you deal with those folks quite a bit. Are there challenges there in terms of how those organizations are structured or how they staff their employees or how they manage other organizations that create issues down the line for people who need this care?

Jennifer: Yeah, so we've seen somebody, for example, qualify for Medicaid and be granted a certain amount of hours per day of home care; sometimes it's difficult to find an agency who can actually staff that many hours.

So, you know, we've seen some families divide the time between two agencies in order to make that happen. The truth of the matter is in home care at this point in time, and it's been this way for a while, it's not always easy to find staff to work for a home care agency. I think one of the other issues that is important to look at is how much are these folks getting paid and how can we draw more people into the the business of home care so that they want to stick around and they want to be able to work with these families. So, unfortunately there can be a fair amount of turnover in the home care world So, that's one issue.

And then, you know, another issue that's a reality is for people who live in areas that are more rural, whether that's rural Minnesota, North Dakota,South Dakota we may have a difficult time finding a home care agency that just even covers that area. So, yes, there are a number of additional circumstances that can become limitations.

Mike: The more we're talking about it, the more complex it sounds and I can't imagine if you're living with this disease and dealing with the emotional and physical challenges that presents, having to add this on top of that and think about navigating the healthcare system and insurance and it's it's a burden that no one needs.

Jennifer: I couldn't agree more. I think it's incredibly unfortunate. It would be great to see some changes over time.

Mike: Jennifer, what's it gonna take in your mind to get us there? To make access easier, to make this kind of care more affordable, is that all happening at the federal level? Are there things we can do to get through to legislators? Should we be working directly with insurance providers on solutions? What can we do?

Jennifer: I do think it's probably all of the above. I wish I felt more certain about how to go about it. I do think that absolutely getting in front of our legislators is gonna make a difference. Helping them to see how much of a struggle it is for families dealing with ALS. I think there is potential for working with insurance companies as well because you know they can make their own decisions. but they do tend to follow the model of Medicare. We have seen some folks advocate very heavily for themselves with their insurers and have some luck with getting their insurer to provide more coverage than frankly I ever thought we'd see that insurer provide. And, while I do feel it's more of an exception to the rule, I think it's important I think these family members would want me to share with the ALS community that it has happened. It's taken some folks a lot of time and effort to do it, but there has been that occasional success story of "hey, I got my insurance company to pay for X amount of care for me per day".

Mike: Yep, that's encouraging and we want folks to be able to be their own advocates and for family members to be advocates for their loved ones. Truth is we all need to be louder about it, we all need to be advocates on this front, but that's it's encouraging to hear that. Jennifer Myhre thanks so much for your time and expertise today. This is a huge topic, that I'm sure we will touch on again down the road.

Jennifer: Thank you, I'm happy to be here and thank you.

Mike (narration): That's going to wrap up episode 2 of Connecting ALS and I want to thank all of you for tuning in.

Be sure to subscribe at ConnectingALS.org. You can follow us on Facebook and Twitter and you can email us at [email protected]. We'd love to hear your feedback and answer your questions so feel free to shoot us a message.

Thanks as well to all of our guests for their time. We'll be back next month with new content.

Connecting ALS is produced by Garrett Tiedemann from the headquarters of the ALS Association's Minnesota, North Dakota, South Dakota Chapter in Saint Paul, Minnesota.

#ALS Association #endals #TalkALStome #home health care #Voice Banking #Team Gleason #VA #healthcare

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supere1113 · 6 years

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The Artist In Me - Track 5: Same Song

The sonic idea for Same Song was originally called 'Parade', and I think that still captures the energy and persona of this song.

This song as an idea was around for awhile; came about early on like Ambitious. Mid to late 2016, I think. I wanted to write a song about how most people make songs that don't really have that much range or variety in general. "Not enough venturing out and trying something new," I thought.

This whole album is kind of an introduction to me, my values, how I grew up, and what influences I had when I was younger. Just something to tell anyone who listens what I'm all about. That being said, I wanted to communicate to my listeners that I am here to give something that hasn't been given before. I thought, "I'm making my own path, and taking my audience along for the ride."

As I wrote it, it also became about doing things on your own with what you have and about being authentic with the art and stories you share with the world. You won't get the same thing twice from me (listen my first mixtape Fire for instance. I was joking with a friend of mine that while I was making it, I couldn't go one song without changing the genre up! There's a reggae song on there, a protest boom-bap odyssey, trap beats, metal, singer-songwriter Americana, everything's on that tape, bro. Ha ha ha!)

"Parade" came very early on in the album process, just sitting in my mind for months on end, waiting to be recorded. The lines 'My vocab and learning styles are diverse/I'd curse, but I got too many other words' came first like, 2 years before the album was finished! I fleshed out the lyrics about a year ago, early 2018, and worked on recording "Parade" finally in September or so. Maybe late August. This. Song.... was the hardest to produce on the whole album. It came together a lot faster than Ambitious, but it felt like it took forever to get it just right. Real stuff.

Originally, Same Song was going to be a "big band" song, more Frank Sinatra/Dean Martin Ain't That A Kick In The Head type of song, much like Out of the Cobalt Blue and Extroverted Introvert. I own a trumpet (his name is Prince, and he was my first instrument), but I'm not as good as I would've needed to be for this song. That, and digital instruments can be very expensive. The digital horns I wanted just weren't in the budget this time. So, since I was already exploring 1980s synthpop in this part of the album, I just decided to make all the brass horn parts I wanted... into synthesizer parts. It still gave me the result I wanted, and I was happy it did.

Perhaps the hardest part of the recording was the synth bassline. I didn't know how to make what's known as a triplet beat in my software, so I basically just used my musicality and recorded it manually. It turned out pretty good, I think.

Anyways, Same Song is one of the more original melodies that I came up with for this album. I could say if so-and-so and such-and-such made a song together... yadda yadda yaddah, but this one is just here as it is, its influences so well incorporated, you can't even tell they're there.

You can listen to Same Song here if you want. This link will take you to wherever you listen to music. YouTube included. ❤

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fieldsofplay · 7 years

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Top Albums of 2017

20. Protomartyr – Relatives in Descent

I put this album 20 for several reasons. One, it’s a great album. Two, they release these records every year and their inclusion is thus a little rote at this point, so it might as well just kick off the list as the official start to another year. Three, we can get politics out of the way at the outset. 2017. Woof. And we thought 2016 was bad. If any band is going to soundtrack the hellscape that is Amerikkka in 2017, it’s hard to do better than Detroit’s Protomartyr. No one is better at channeling our collective disillusionment with the political climate into raw power.

19. Lorde – Melodrama

I don’t know if I’m surprised by my embrace of this record or not. I’ll admit part of me found the idea of Lorde not all that interesting, and I never really bothered to listen to her first record. But as high culture and pop continue to draw ever closer to each other it would be foolish to ignore one of the true pop perfectionists while embracing the Beyonces and Kanyes with open arms. This album bangs. The beats are oddly reminiscent of late night Junior Boys vibes, with perfect pop sing-along’s about a night on the town laid infectiously over the top of those hypnotic beats. Whenever I hear “Homemade Dynamite” it takes days to get it out of my head (dy-dy-dy-dynomite).

18. Tyler, the Creator – Flower Boy

While many old acts dusted off their A-games and a few young guns broke on through, no artist this year was more surprising than Tyler. Long written off as a homophobic infantile flash in the pan, the least interesting member of a crew (Wolf Gang) that he single handedly launched, Tyler did a lot of growing up in 2017. Flower Boy is a testament to that growth. The hip-hop equivalent to former fellow crew member Frank Ocean’s Blond, Flower Boy is a kaleidoscopic trip through acid rap tinged with a hint of g-funk. While I never find personal politics compelling when it comes to artistic statements, the fact that the former gay-basher came out himself is important not for who he professes to sleep with, but for the giant emotional leap such an ideational 180 requires. Having come so far as an artist, I cannot wait to see where Tyler goes next.

17. TOPS – Sugar at the Gate

TOPS are perhaps the most precise band on this list. When left to my own devices I tend to gravitate to loose punk and dance music, and I am an avowed enemy of soft rock, but there is just something irresistible about this band. The whole thing never drifts out of a narrowly restrained emotional range, and yet at the same time remains impeccably locked-in, like a krautrock metronome played on a chintzy synthesizer. There’s a song on this record called “Dayglow Bimbo”; that’s all you really need to know.

16. Sza – Ctrl

With the exception of Kendrick I’m not sure who cast a wider cultural net this year, Lorde or Sza? Ctrl is one of those albums that seemed to cross all scene boundaries, if it were still the 1990s it’d be one of those cd’s that was in everyone’s car (like Californication or Sublime). Ctrl is an R&B record that is simultaneously chill and bumping. Sza sings, not to the audience, but as if she’s alone in her apartment, letting her emotions out to the music playing on the radio in the background.

15. Run the Jewels – RTJ3

Run the Jewels appear to be the victims of their own success. After two universally revered albums of mic passing mc showdowns that also managed to be locked-into their historical moment, album three was enjoyed and largely forgotten as more of the same. Perhaps this is my contrarian nature shining through, but I honestly like RTJ3 more than RTJ2, an album many embraced as the most important album the year it came out. Killer Mike and EL-P remain in top form, and the group is probably more relevant than they’ve ever been. “Call Ticketron” is still my go-to Friday afternoon ducking out of work early jam.

14. Kevin Morby – City Music

Like Protomartyr, Kevin Morby just puts out incredible record after incredible record, literally every year. For my tastes Singing Saw remains his finest work, but City Music has really grown on me over the course of the year. I caught him at the Turf Club and these songs really come alive in person. This album is more restrained than his previous output, but there is a certain beauty in its restraint. This album reminds me of another exquisite work of countrified city music, Bright Eyes’ I’m Wide Awake its Morning. The perfect album for wandering around city streets at night, wondering what it all means.

13. Brockhampton – Saturation II

I first learned about Brockhampton while waiting for my to-go order sitting at the counter at World Street Kitchen. Some of the local youths were talking about the new Jay-Z record so I decided to wade into the fray, throwing my hat squarely in the ‘I don’t really care about Jay-Z anymore’ ring. One of the youths responded he was too busy listening to this new collective of kids out in LA that were like a westcoast Wu-Tang Clan to bother with Jay-Z. Well, my interest was certainly peaked, and Saturation II did not disappoint. The album bristles with energy as the mic moves from mc to mc, all of whose individual styles vary but still manage to cohere into a definitive whole (is it clear I still haven’t figured out who is who in this crew?). While none of the sounds are new, Saturation II is definitely the sound of the future of hip-hop.

12. Vagabon – Infinite Worlds

This album checks all my boxes. Loud guitars. Thudding drums with liberal use of the cymbals. Quirky narrative lyrics. Sounds like it was recorded live to tape in someone’s backroom. (And its even got a super hazy synth song with a French title.) The chorus of the first track is “You’re a shark that hates everything.” A more aggressive Pavement. A less sad Bedhead. Bonus points for being vaguely from Brooklyn and having a great song called “Minneapolis.”

11. Kamasi Washington – Harmony of Difference

Following the three-disc sprawl of the aptly titled The Epic with a 6 song E.P. (clocking in at a very economical 32 minutes) felt slightly underwhelming at first. We are used to having so much Kamasi, it was something you could get lost in, like a Russian novel. However, while Kamasi certainly excels on the astral plane, this set benefits from concision. It’s one thing to write a novel and another to pen a short story. Kamasi is able to use his saxophone to portray both, sometimes within the same song –the opener “Desire” is both a mellow group cut and clarion solo, all within just 4 and a ½ minutes.

10. John Maus – Screen Memories

Of all the people on this list, John Maus is definitely the weirdest. In all honesty, his music sounds like it was made by Ross Geller, with one notable exception, it’s really fucking good. Often linked with Ariel Pink, I’ve honestly never really found them comparable. I find Pink’s music vapid and uninteresting, whereas Maus’ synth tracks are full of such life and oddness, all while remaining compellingly melodic. His baritone singing is less a vocal performance and more another layer of tone piled into the composition. Maus does more with stark base, futuristic (i.e. 1980s) synths, and rudimentary drum machines than others do with entire symphonies.

9. The War on Drugs – A Deeper Understanding

I honestly didn’t think 2017 was as good a year for music as some of its recent predecessors, but then I realized this album is number 9 on my list and I had to come to terms with the fact that the peaks of this year are incredibly high. A few years back Lost in the Dream was my number one album of the year, and I like A Deeper Understanding just as much. Over the years Adam Granduciel has come to perfect a sound obviously indebted to a few key influences, and yet a sound somehow entirely his own. Even though he’s a Philadelphia musician, Granduciel has somehow come to encapsulate the ennui of the late capitalist American middle west. These songs are haunting, filled with the charged emptiness of ambient music. But they are also filled with giant guitar solos that would put Jeff Tweedy to shame. I’ve seen this band several times dating all the way back to 2008. When I saw them this fall they were bonafide rock stars. I imagine this is what it must have been like to see Neil Young circa On the Beach. It was a treat.

8. Wolf Parade – Cry Cry Cry

Dear America, what gives? How come no one seems to love this record? Everyone seems to like it, but no one seems to love it. This album is great, and I won’t accept anything less. A band cursed by a universally revered debut and multiple equally successful sideprojects that split the votes of the true believers, Wolf Parade have somehow managed to be critical darlings, popular, and yet somehow are also underrated. Cry Cry Cry is to my ear arguably their second best album, which isn’t to say I was disheartened with Mt. Zoomer or Expo ’86. The new record has something for every member of the Wolf Parade expanded universe, the propulsive Dan fist-pumper (“Artificial Life” “You’re Dreaming”), the moody opener (“Lazarus Online”), and most importantly, the sprawling Spencer epic (“Baby Blue”). Wolf Parade were another bygone band I was fortunate enough to see in 2017. It was arguably the best show of the entire lot, and somehow it wasn’t a sellout. What gives, America?

7. Strange Ranger – Daymoon

Daymoon is my cause célèbre of 2017. Largely overlooked by the press, this is the most perfect fall album I’ve heard in years. It creaks. It echoes. It’s full of odd flourishes. “Haunting” is an adjective I feel is mostly misapplied but fits this album like a glove. I don’t know if there is actually a theremin on this record (or a singing saw) but it always feels like one is humming softly in the background. If you loved the Microphones’ The Glow, Pt II, early Modest Mouse, or Neutral Milk Hotel give this album a spin when you feel like taking a long walk in a golden post-harvest field, or at least feel like doing so in your mind.

6. Slowdive– Slowdive

This album has no business being anywhere near as amazing as it is. While Souvlaki remains one of my all time favorite records, it was always the exception, not the rule. As I learned from the great Pitchfork documentary, one of the reasons Souvlaki was so distinct, besides the inclusion of personal hero Brian Eno of course, is that the two front people in the band were in the process of breaking up while making that record. 1995’s Pygmalion was essentially an (uninteresting) solo affair, and that was it, Slowdive faded along with the shoegaze movement of which they were a central figure. Suddenly here we are in 2017, the band is inexplicably back, and almost more amazing is just how great a record Slowdive is. It’s like the follow up to Souvlaki was frozen in carbonite (timely reference!) and perfectly preserved so it could be unveiled 25 years in the future. If “Slomo” isn’t 2017’s best song, it’s certainly its most beautiful.

5. Daniele Luppi & Parquet Courts – Milano

To loosely paraphrase Ferris Bueller, I’ve never been to Milan, I’m not Milanese, what do I care about an album devoted to the city put together by an Italian composer I don’t know? Well, collaborating with Parquet Courts and Karen O is certainly an irresistible start. On paper the whole thing sounds like a mess, and yet the finished product is a taught 9 tracks that breezes by in 30 minutes like an alfa romeo. While I might not know anything about Milan, especially Milan in the 80s, somehow this album manages to evoke that place, or at least an idea of that place. A large part of this has to do with the arty coolness Parquet Courts have always exuded. They can emblematize any hip scene, be it Ridgewood in the 2010s or Milan in the 1980s. They just have that wiry sound and jittery energy that calls to mind fashionable afterparties and mountains of cocaine. While I love both of Parquet Courts singers, I never would have imagined that Karen O is actually the perfect frontwoman for this band, sorta like Nico and the Velvet Underground. Here’s hoping the Courts enjoyed working with her more than Lou Reed did with the German chanteuse. Give “Flush” a listen, I guarantee you start strutting.

4. Vince Staples – Big Fish Theory

Every now and then there is an artist whose debut is an instant classic, and then somehow manages to grow even further on each subsequent release. For this current generation, besides Kanye, that person is Vince Staples. Summertime ’06 was a double disc perfect rendition of classic LA hip-hop that was also a sneaky great album to dance to. Big Fish Theory is possibly the most formally experimental hip-hop album I’ve ever heard. If you cut out the vocals, it’d be an avante guarde electronic dance album. Throw Vince’s perfect flow over the top, and you have a Frankenstein monster of hip-hop and dance music that somehow manages to be a seamless union of the two. I’m still mad at my friend Evelyn for skipping this at Shrizz’ wedding this past summer. The nerve of some people.

3. White Reaper – The World’s Best American Band

I sincerely hope you like Cheap Trick. And not ironically. Like, you actually really like Cheap Trick. If so, I’ll be goddamned if this isn’t a perfect album of fist-pumping arena rock made by a bunch of basement punks from Louisville. If you don’t like Cheap Trick, well then, you just might not get why this is so great. Every track is a perfect nugget of 70s style power pop with just enough of a hint of punk to make it somehow sound fresh. In a year when I saw most of my favorite bands make triumphant returns from the grave, seeing these guys blow the roof off the tiny 7th Street Entry was probably the most fun I’ve had straight up rocking out in some time. I’ve never owned a jean jacket in my life, but this album makes me want to buy one.

2. LCD Soundsystem – American Dream

Now I know I’m a hyperbolic person. Every bar is my “favorite,” every track is the “best,” but I’m being legit when I say LCD Soundsytem are the most important band of my lifetime. I bought the self-titled album at a CD store on State Street in Madison shortly before leaving town and moving to New York. Sound of Silver was the soundtrack of my 20s. By the time they broke up my 20s were over and all my friends started moving out of New York. If I came of age in the 70s this band would probably be Bowie or in the 80s it would have been New Order, but as someone who gradually became an adult during the late 00’s, this was the most important band, not only to me, but to most everyone I know. It was of course also crucial that they were the official band of Brooklyn. They were there, as the song goes, and so were we. I honestly never understood the overwrought handwringing that accompanied their return. Are you really going to be mad at having more LCD in your life just because they once told you “that’s it, it’s all over”? American Dream is just as good as anything they’ve ever put out. I’d put “Other Voices,” “Change Yr Mind,” and “Tonite” up there with the best songs they’ve ever penned. Getting to see them tour once again, with both old New York friends and new Minnesotans, in a new town, in a new phase of existence, was the cherry on top of the electro funk sundae.

1. Kendrick Lamar – Damn.

People call him King, and it is a worthy title. Throughout music history the truly all-time greats always had someone who was their dialectical opposite spur them on to greater accomplishments—Beatles and Stones, Michael and Prince, Pumpkins and Pavement (not that either would acknowledge the other)—and now we have two titans of hip-hop pushing each other in radically different directions. Kanye is the pop perfectionist, the Michael Jackson, the Paul McCartney, everything he touches turns to gold. Kendrick is the flawless technical savant, he is literally the best, no one is better. Pick your favorite MC from throughout hip-hop history, they all have their idiosyncrasies and particular strengths (Rahim has technical prowess, Andre has speed, Q-tip has an inimitably odd flow) somehow Kendrick is better at all of all those things than all of those legends. No one’s voice is more varied, no one is a better rhymer, and no one has ever matched rhyme to rhythm this side of Shakespeare (that’s not hyperbole, well maybe Frank O’Hara). Just listen to the subtle variations in “Lust” that somehow tell a person’s entire day, an entire lifestyle, in a sentence or two. It’s not just he’s the best at spitting lines, he also has the ability to intertwine those rhymes into infectious pop structures. Kendrick has released 3 albums that people are aware of (and 4 overall), and those three are all amongst the top albums of the decade. Each one overbrims with classic tunes. “Humble” was the song of the year before Damn. even dropped, and the rest of the album lived up to the hype of that single. I’m still not exactly sure what “If I gotta slap a pussy-ass ni***, I'ma make it look sexy” means, but goddamn if I don’t love it and still perfectly understand it. This record is so good it somehow makes U2 cool. In a year where everything seemed to go wrong, Damn. was there to remind us that there will always be beauty in the chaos, so long as you don’t forget to keep searching it out.

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