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biomedgrid · 4 years ago

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Biomed Grid | A Parkinson’s Disease Journey from Patient side view

Abstract

There are a lot of research papers about Parkinson’s disease from the medical point of view, this research paper is from the heart’s patient side view, there are aspects of Parkinson’s that only those living with it truly understand. This paper is based on a treasure from a personal experience into a Parkinson’s disease journey of Gordon Johns. Each degenerative neurological disease patient are real heroes, that fight every day with the evolution of their symptoms that struggle their life 24/7. We, as Biomedical researchers on degenerative neurological disease believe that observing the evolution from the symptoms and emotions progressions, and how they are handling by patients will help: researchers, doctors, others patients, caregivers and all people with human kindness to understand this terrible progressive disease that still doesn’t have cure. Testimonies like this, will point a more human way to find and develop new treatments that will help to deal with the disease for a better quality of life of Parkinson’s patients and find a way to slow down or stop the disease progression or find a cure in the near future for it. I add my sections for: analysis of this case from a Biomedical researcher perspective, Parkinson’s disease general acknowledges and conclusions to find ways to deal with this cruel disease.

Keywords: Parkinson’s Disease; Tremors, Movement Disorders; Postural Instability; Parkinsonism; Idiopathic Parkinson’s; Atypical Parkinsonism; Multiple System Atrophy

My Journey into an Obscure Neurological Disorder by Gordon Johns*

“I have no technical background in these diseases - no clinical training of any kind - but I’ve been told that detailed accounts of patient experiences can be helpful to the professionals in their study of these terrible diseases. I hope something about my case will be helpful to them”

Gordon Johns died on April 26, 2019.

Special thanks to Helena Keeley for send me this testimony treasure.

Figure 1

Introduction (By: Gordons Johns, February 20,2019)

My name is Gordon Johns. I am 83 years old and retired. I’ve been happily married to my wife, Carole, for 19 yrs. In February of 2013, I consulted a neurologist because of slowly increasing body weakness, nocturnal leg cramps, and episodes of forgetfulness. After performing a few tests, he gave me a diagnosis of Parkinson’s Disease. That diagnosis came into question with my second neurologist, when my symptoms, which had not matched any of the classic symptoms of Parkinson’s Disease to begin with, diverged even further from those classic symptoms. From then until now (2019), I consulted three more neurologists. They performed many tests and tried many medicines, but none of them led to a solid diagnosis.

Last October, my current neurologist concluded that I have “Multiple System Atrophy,” or MSA. There are two kinds of that disease; both are terminal. My kind is “MSA of the Parkinson’s type,” or “MSA-P” for short.

I would have preferred a disease that had fewer words in its name. . . and one that wasn’t terminal. Some of my symptoms have been very unusual over these years, especially the ones that got better and get worse independently of my medicine.

I’ve always been interested in the subtleties of my own thoughts and feelings, and I wanted to share the strange experiences I was having. At first, I planned to write the blog only for our friends and relatives, but after giving a few sample pages to therapists, technicians, and doctors, I became persuaded to make my blog known to professionals as well.

I have no technical background in these diseases - no clinical training of any kind - but I’ve been told that detailed accounts of patient experiences can be helpful to the professionals in their study of these terrible diseases. I hope something about my case will be helpful to them. If you find something in this blog that seems useful to you in a clinical sense, make sure that it is consistent with current scientific knowledge.

Thirty Seconds of Dementia

One afternoon in August 2017, I was home alone, thinking about something or other, and at some point, I wanted to know the numerical difference between eight and five. I don’t remember now why I needed that—maybe it was eight o’clock then and I was checking to see how many hours had passed since I took some medicine at five o’clock. It stunned me that the difference between eight and five wasn’t immediately obvious! How could I not know it? I was frightened. I’d had episodes of memory loss that my neurologist said were attributable partly to my disease and partly to the normal aging processes in an 82-year old brain—but nothing had been as extreme as this!

I was determined to get the answer to this trivial problem. I closed my eyes and closed my hand to make a fist. I counted up from five to eight, extending one finger for each advance. I thought I had made three counts, but, oddly, I wasn’t sure. I looked down at my hand. Yes, three fingers—so the answer to my problem was three!

But now, what was the problem? My memory of it had vanished! All I could recall was that I had two single-digit numbers to start with, and I needed to subtract one from the other to get the answer to. . . some question I had wanted the answer to.

Now, what were those two numbers again? I had forgotten them too. In just seconds!

I realized that this succession of memory failures was very bizarre, and I thought it would be important to recall it later if I could. In passing, I noted that I was reasoning very well, but my memory was faulty. I decided to review, mentally, all I could recall happening, and I did that several times, in hope of burning it into my enfeebled memory.

While doing that, I suddenly remembered the numbers eight and five! Good! I found a piece of paper and wrote a note to my future self:

8 – 5 = 3 what is this about?

I found that piece of paper later, and it helped me remember enough to tell you the little story above-a tale about the time my malfunctioning brain solved a forgotten problem to produce a useless answer.

Notes:

I don’t exactly have “dementia” and I don’t exactly have “Parkinson’s Disease” either—although the latter was my initial diagnosis five years ago. My episodes of extreme forgetfulness and confusion were exactly that: episodes. After each one, my mind returned to its previous state. The word dementia refers to a condition that is constantly worsening. Dementia doesn’t go off and on.

There is another factor, however. Brain images over the years have shown increasing vascular disease consistent with my age. Whatever the contribution of this to my behavior, it is constant, not intermittent.

Regarding the title of this post, “Thirty Seconds of Dementia,” thirty seconds is just a wild guess. I can’t know how long that episode really lasted, because other thoughts could have occupied my consciousness, and then never called to mind after that.

Learning to Walk in a New Way

Four years ago, a year after I’d been diagnosed with Parkinson’s, something strange happened with my legs—something I’d never experienced before.

I was standing by the table in our kitchen nook, looking down at my array of medicines. I turned to walk to my recliner in the family room, about 15 steps away. But something went wrong. I stopped walking. I don’t mean I decided to stop walking; rather I found myself standing still.

It was weird and definitely scary. What could have stopped me? I glanced down at my legs and feet. I had felt no resistance. What the hell is going on?

Quickly then, I stumbled the rest of the way to the recliner and flopped into it. I took a deep breath and tried to relax, but my mind was racing. Oh, God! Am I having a stroke? Am I getting some kind of paralysis in my legs?

Then it occurred to me: This might be a new symptom of my Parkinson’s. I’d never had any bradykinesia (resistance to body movements, also called “stiffness”) but I needed to check it out. I was able to lift each leg up off the chair easily, so my hip joints were fine. With each one I also flexed all the other joints—knees, ankles, toes. No stiffness, no discomfort of any kind. Stiffness is one of the cardinal symptoms of Parkinson’s disease, but here: all good!

I wanted to talk to Carole, my wife, but she was away on an errand. I could call her, but I decided to wait. No need to frighten her now. I had to try walking again. Gathering my courage, I stood up, intending to retrace my path from the chair back to the nook table. I took slow steps. Along the way I heard birds chirping. Carole had a clock in her office that makes bird sounds. . . and then I stumbled!

I had been watching my feet while I was walking, but when the chirping sounds distracted my thoughts, my walking stopped. Apparently, I had to pay continuous attention to my walking in order to keep it going...whereas it had been automatic all my life. I turned around and made my way back to the recliner, watching my feet all the way.

After I calmed down, I reflected on the whole walking thing. I thought about how, when we were children learning to walk, we first had to learn to take a single step, probably while mommy’s hand held us up. After that, to execute one step after the other, we had to think about every step we took. Our conscious intention caused special signals to be sent to our brain, which would then direct our muscles to lift one leg and move it forward, and then put that leg down again. We had to will every step we took.

I’m no expert in this area, but I was willing to make a few suppositions. As we pre-toddlers practiced doing this, our brain was building a set of detailed “motor commands” (muscle commands) to direct the muscles of one leg to execute one step. As we moved along, holding onto a couch or table, our brain refined its motor commands to make taking a step easier and faster. As we got more practice in single-stepping, that set of commands in our child’s brain finally combined to make an automatic system that enabled us to walk without conscious effort, except for the simple intention to begin walking. Perhaps because of my Parkinson’s, the automatic walking commands that my brain developed when I was little, are damaged.

Now as adults our automatic walking system probably follows these steps: take a step with one foot, take a step with the other foot, and then repeat. It’s like those shampoo instructions, “Lather, Rinse, Repeat,” except that in my motor commands, the repeat step was missing or damaged. My brain will execute each forward step, but I had to trigger each “repeat” myself.

Days went by, and I discovered that I didn’t have to watch my feet with each step, but I had at least to think about each step. It’s like thinking, “left… right… left… right…” but you don’t have to think the actual words.

had read nothing about this kind of experience in my Parkinson’s disease books. I thought that maybe all PD patients with walking problems had a similar transitional experience. Later similar limitations occurred with my hand movements and fine motor movement of the fingers. I was sure that for the rest of my life I would need to “monitor” these everyday motions this way.

It’s not as burdensome as it may sound. Suppose that you and I are walking along, chatting about something that requires some light concentration. If my walking required, say, 10% of my conscious attention (I have no idea what the real number would be), then I would still have 90% of my attention to devote to our discussion. That’s not a major loss. I don’t think either you or I would notice it affecting my thoughts or remarks.

Afterwards, walking took less and less attention as the weeks slipped by. Now it’s mostly liked the old normal. Occasionally I have to pay attention, but I notice this only a few times a day. I must attend to some arm and hand movements too. Overall, the whole thing turned out to be inconsequential. And, of course, I wasn’t frightened of it anymore.

Standing Still Without Falling

Many months after I found that I couldn’t walk right, I acquired another disability—I couldn’t stand right either.

When we stand still, and if our hands or body aren’t in contact with something secure, our body will occasionally tip slightly, at random, forward or backward from the vertical. This is natural. Our brain detects the problem and flexes our feet at the ankles as needed to bring us upright. Normally we’re not aware of this process. It happens unconsciously.

I am going to take a break here to describe something interesting. If you already know what “proprioception” is, you can skip the next couple of paragraphs. If you would close your eyes right now, you would still know the spatial configuration of your body. For example, you’d know where your arms and legs are. How would you know? You might think it’s because you remember the last place you put them. But this isn’t how you know—you know because you have a sense of “proprioception.”

All moving parts of your body send signals to the brain with information about their position and their motion. These signals, augmented by equilibrium information from your ears, enable your brain to maintain a “proprioceptive model” of your body. In the case where your body is standing but starting to tilt away from the vertical, your brain’s proprioceptive model detects that. When this is detected in the model, your brain activates a motor control sequence (I’m guessing about that term) and sends the appropriate motor control signals to your legs and feet to bring you upright.

As we stand, we’re not aware that our body tips forward and backward a little bit at various times, and the problem is corrected automatically.

It’s a great feature.

But it no longer works for me.

The change came many months after I found I could no longer walk without attending to each step. Standing at my bathroom basin, I suddenly felt myself falling backward. A quick backward step stopped my fall. We are all familiar with that when it happens because of a sudden gust of wind or a slight contact with someone in a crowd. But I was worried about a serious fall.

I went to the kitchen floor for good contact, barefoot, and gripped a counter for stability, and experimented. Sitting for a while, standing again, standing while reading a book aloud, standing while thinking about this file, or trying to think of nothing. It was all the same. The slight imbalance of my body when it occurred was either using a broken motor control sequence or not using any at all. My balance mechanisms in my brain and ears tell me inform me that I’m tipping, so I correct that by pressing toes down or pressing heels down.

And from that day until now, this has been the only way I can stand without support. It’s not a serious drain on energy but the repeated interruptions of my conscious thought process are annoying.

For long-term activities like brushing teeth or shaving I find it helpful to lean forward with my stomach against the edge of the counter. This contact holds me up without any action at the ankles, but then I get a pain in my lower back. Why? Because those muscles are the ones holding my body in the slightly bent position needed to stay in contact with the counter.

My Hand Forgets How to Brush My Teeth

One morning I discovered that I couldn’t brush my teeth. I had put a blob of toothpaste on the brush and put the brush in my mouth. And nothing happened!

I wanted to begin brushing but it just wasn’t happening. I felt surprise and fear. There was another feeling that was uncomfortable, but I didn’t identify it until days later: it was a sense of helplessness.

So, I was standing at the bathroom mirror looking at myself holding the brush that was against my teeth but not brushing any teeth. I reasoned—guess what? — that the motor control sequence in my brain for brushing teeth was no longer functioning. My conscious mind had transmitted the order to “do the tooth-brushing thing” to my brain, but the appropriate series of motor commands to my arm and hand were not being transmitted-as they had been all my life. Those motor command sequences had been damaged or eliminated by my disease.

I did finish brushing my teeth, but I had to think about (again, to will) each separate movement of the brush. I noticed that the standard back-and-forth wiggle was just one thing I had to do. I also had to decide when to stop and transfer the brush to the inside of the teeth, and switch between left, center, and right, to ensure that I had brushed every surface. Plus, pushing the bristles against my teeth was a lot of work, per my all-body weakness.

Since that day I’ve been consciously responsible for every brushing motion of my toothbrush. I hoped my brain might relearn and create a new motor control sequence from all the repetitions. I think this is what happens when a veteran with brain damage, or a stroke victim, is able to relearn to walk. But it didn’t work with my tooth brushing.

I suspected that my disease might not enable this relearning because I had seen a similar failure before, in the kitchen. One day I found that Carole had rearranged the flatware in the kitchen drawer. The knives, forks, and all the rest had been in the same compartments, with each tool oriented the left-or-right, up-ordown same way for many years. On that day I realized that I was in the habit of yanking the door open and seizing the tool I wanted, by the handle, without looking.

Now I had to look down and govern my hand in the “seizing,” just as I had had to govern each step in my new way of walking. Carole offered to put the flatware back to its former arrangement for me, but I wanted to see if my brain would create some new motor controls. And it did, or something equivalent, because now I pretty much know where my hand is going when I reach for a utensil. My eyes don’t have to track my hand. I recovered from that particular “disability.”

But the brushing of my teeth remained as effortful as it was the very first time I did it myself. I wasn’t going to relearn that.

So, I bought an electric toothbrush.

Not Yet Parkinson’s (by: Gordon Johns Last blog story)

This short post goes way back to the summer of 2002. I consulted a neurologist with complaints of body weakness, leg cramps, and occasional forgetfulness and confusion. He ordered lab tests, and a brain MRI, and a nerve conduction study. He said that those were normal for a man 67 years old. Neuropsychological tests showed a slight memory impairment.

The reason I am telling you this is what the doctor said just as I was going out the door:

“Gordon, there’s nothing in your test results or in your symptoms that give even the least suggestion of Parkinson’s Disease. Nothing at all.”

I looked at him in puzzlement.

“Nevertheless, there’s something that I sense about you-as though it were a smell, but it’s not actually a smell”. He smiled briefly. “I think you’re going to be coming back to us in ten years with Parkinson’s Disease. Now I see the grin of pride.

I don’t remember any further discussion but driving home I was angry. This doctor had predicted something potentially devastating for my future health with no clinical evidence for it! And it was a disease that no one can prevent or prepare for!

How could this neurologist not know that a comment like this might infect the patient’s attitude or feelings toward his or her future death for a long time-say the next ten years? How many thousands of times might he or she have little twinges of fear when contemplating their future demise?

What if the patient had thought, mistakenly, that Parkinson’s disease is terminal? Or if the patient misremembered and thought the neurologist had said Huntington’s Disease, which is terminal? What if the patient was suffering from depression, and this remembered “bad news” contributed to a suicide?

Doctors know they have the power to hurt patients accidentally with their words, but the careless use of this power, to my mind, is unconscionable.

During that span of ten years, I didn’t have much reaction to what that neurologist said that day, but it irked me profoundly ten years later when I realized that this careless SOB had been right about me! I was pleased to learn that he was no longer practicing in my area.

“If you find something in this blog that seems useful to you in a clinical sense, make sure that it is consistent with current scientific knowledge”.

About the Author: Gordon Johns

Education:

BS Physics, Florida State University, 1957.

Graduate studies, Advanced Nuclear Physics and Reactor design, 1957-58, Rensselaer

Polytechnic Institute.

Employment:

Associate Reactor Physics Designer, Knolls Atomic Power Laboratory, Schenectady, NY.

Aerospace Engineer, Leader, Scientific Software Group, Honeywell Aerospace, Orlando, FL.

Senior Software Engineer, Space Station Program, Link Flight Simulation, Houston, TX.

Member of the Technical Staff, Artificial Intelligence & Robotics Section, Space Data Systems Department, MITRE Corporation, Johnson Space Center, Houston, TX.

Publications and Honors:

“The FICS System,” United States Atomic Energy Commission, Naval Reactor Physics Handbook, Volume One, 1964.

“Dynamic Display of Electronic Crew Procedures for Space Station,” The Journal of Spacecraft and Rockets, Jan. 1989.

“The Steps Methodology,” Award of Excellence, state-wide winner, FL Technical Communication Competition, 1996.

National Physics Honor Society.

Co-Inventor, U. S. Patent 4,033,336, System for Sensing and Recording Medical Information, July 5, 1977.

Former member: Mensa, Intertel, Triple Nine Society.

Invited Speaker, American Institute of Aeronautics and Astronautics, Reno NV, 1988.

Analysis from a Biomedical Researcher Perspective (by Jorge Garza-Ulloa)

In every real story there are many opinions from different points of views, the real challenge for a degenerative neurological researches and professionals in this field is to: listen, collect and analyze the real facts to learn from them and increase the probability to find appropriate solution that will help in the life affected by this terrible degenerative neurology disease.

Parkinson’s Disease General Acknowledges (by Jorge Garza-Ulloa)

It is very import to remain that symptoms are different for each patient in intensity, duration and combination of them. Only your doctor trained in nervous system conditions (neurologist) can diagnose Parkinson’s disease. He will decide, if your symptoms are from Parkinson disease, specify Parkinson’s disease stage, and the Parkinson disease type. The diagnose will take time and it must be based facts on your medical history (lab tests results, MRI’s), review of your signs and symptoms, and a neurological and physical examination.

As a patient and caregiver, it is very important to have a general acknowledge of Parkinson’s disease: on frequently symptoms, disease stages and Parkinson’s disease types. These are explained in the next three sections:

Parkinson’s disease symptoms

The most main symptoms are of three kinds: primary motors (directly related to movement), secondary motors (consequence of movement disorders) and non-motors (no related to movement disorders) [1].

1. Motors (directly related to movement) as: Tremors in limbs, Rigidity (muscle stiffness), Bradykinesia (slowness of movements), and Postural instability (impaired balance or difficulty standing or walking.

2. Secondary motor (consequence of movement disorders) as: loss of facial expressions, temporary gait hesitation or dragging of the feet, unwanted accelerations when walking, speech difficulty or changes in speech, stooped posture, prolonged muscle contractions, impaired fine motor dexterity, poverty of movement, restless movements, difficulty swallowing, muscles may stay in a contracted position and cause pain, sexual dysfunction, muscle weakness, and others.

3. Non-motors (no related to movement disorders) as: fatigue, digestive issues, urinary problems, sleep problems, low blood pressure that occurs when rising to a standing position, increased sweating, increased drooling, pain, muscle rigidity, reduced sense of smell, mood changes, psychotic symptoms (hallucinations, paranoia, and agitation), cognitive changes including memory difficulties, slowed thinking, confusion, impaired visual-spatial skills (such as getting lost in familiar locations), dementia and others.

Parkinson’s disease stages

To understand the state of this disease, we have to know the Parkinson’s disease stages, these are typical patterns of progression in Parkinson’s disease that are defined in five stages [2], These are: 1) Mild symptoms (Do not interfere with daily activities), 2) Getting worse (Difficult and lengthy in daily activities), 3) Mid-stage (Impair in daily activities such as dressing and eating), 4) Severe and Limiting (Person needs help with activities of daily activities) and 5) Most advanced and debilitating stage (person requires a wheelchair or is bedridden. Around-the-clock nursing care is required for all activities). The main problem is that not everyone will experience all the symptoms of Parkinson’s, and if they do, they won’t necessarily experience them in quite the same order or at the same intensity, this is why the actual stage(s) and the evolution must be deducted only for the neurologist.

Parkinson’s disease types

Parkinsonism is a constellation of signs and symptoms that are characteristically observed in Parkinson’s disease (PD), but that are not necessarily due to PD. Parkinsonism is the primary type of hypokinetic movement disorder. Parkinsonism describe the collection of signs and symptoms found in Parkinson’s disease (PD).

Parkinson’s disease types, these are two general types [3]:

1. Idiopathic Parkinson’s (Tremor predominant disorder that involves shaking and trembling, affect about 85% of Parkinson’s patients), and

2. Atypical Parkinsonism (Instability and gait disorder that present more trouble with walking and balance, affect about 15% of Parkinson’s patients). Atypical parkinsonism is less common, it is an instability and gait disorder that present more trouble with walking and balance, these are rarer conditions and more difficult to treat. This type of Parkinson’s disease happens at an older age but tends to progress quickly. Although people may experience fewer tremors or no tremors at all, they have a higher risk of cognitive decline. Atypical parkinsonism includes the following variations: Multiple System Atrophy Progressive Supranuclear Palsy, Corticobasal Syndrome, Dementia with Lewy bodies, Drug-induced Parkinsonism, and Vascular Parkinsonism.

In this case, the patient was confirmed by his neurologist: Atypical Parkinsonism of subtype: Multiple System Atrophy (MSA), these types include several neurodegenerative disorders in which one or more systems in the body deteriorates as: incoordination (ataxia), dysfunction in the autonomic nervous system that automatically controls things such as blood pressure and bladder function. These are in addition to variable degrees of parkinsonism including symptoms such as slowness, stiffness and imbalance.

Conclusions (by Jorge Garza-Ulloa)

Parkinson’s disease (PD) is a progressive nervous system disorder that affect movement and present symptoms, that can be different for everyone and the exact cause of this damage is still unknown [1]. All medication and procedures available today only help to improve the quality of life of the patients. There is a big necessity to focus in more ways to accelerate the research for stop the evolution of Parkinson’s disease, and if it is possible find a way to slow down, stop or cure in a near future. Some ideal way on my opinion could be:

The creation of a cloud database with information and feedback from: patients, caregivers, researches, radiologists, doctors and other persons involved in the disease. With the goal to develop mathematical models using Artificial intelligence that allow analyze, classify, and forecast progression, that can be useful to measure and track the disease, allowing an evaluation on new medicines, new surgeries and new methods. These will help in the definition of new criteria’s involving multidiscipline research to analyze the disease form combined perspectives, and find ways for early detection, stop the disease progression and many other goals.

it is very Important to access more information of degenerative neurological disease, that could help to understand the diseases from the patient’s point of view. If you have more cases/ information about the evolution of Parkinson’s disease or any other neurologic disease in patients please send them to the email: HYPERLINK “mailto:jorge@ garzaulloa.org” [email protected] will collect them, analyze, classify, publish and share all the information to everyone interested.

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The Bucketlist

Mini-Series of Short Stories

St. Valentines Day [EN]: Chapter 4

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Two months has passed as they continued to work together until they finish the movie and gained so much awards and credit.

"Woohoo!!! Guys! Let's party! We all deserve it for all the hard work!" Director said.

"I think you guys need to talk about something. I don't know but while working with the both of you, we all feel sexual tension in the air." The celebrity Catherine said to Gisela when she noticed that Dorian is eyeing her from afar.

"H-he thinks he's so hot that he can get everyone. Though he told me he had indecent proposals in the past, 3 SMS, 4 Calls, 6 DMs, and 2 missed calls... He's not that hot." Gisela told the actress.

"Woah, so updated, are we?" Catherine gave Gisela a knowing look and a knowing smile.

"Can we talk?" After the Dorian's invitation, he and Gisela went to the nearest park.

"Whenever, I see that sand box, I remember Plage Solitaire. The most peaceful beach on the planet." Gisela just nodded to what Dorian said.

"I-im sorry." They both said in unison.

Then, they laughed a bit with embarrassment.

"L-listen-..." They said again in chorus.

"You go first." Dorian said.

"No. You should go first." Gisela said.

"Uhm, here you go... C-can we be together?" Dorian asked Gisela who shed tears immediately with the question.

"You don't understand. You don't wanna be with someone so-called 'Damaged Good'. I don't want you to regret it. You don't wanna be with me. You don't need to due to pity. You don't-..." Gisela's anxiety is overwhelmingly obvious.

"We do not know those things yet. Those are 'What ifs', you're far from a 'Damaged Good'. For me, you're a beautiful 'Work-in-progress' and hell, despite the controversies I had, I'm still in good condition, whatever you're going through, I will go through it with you. Whatever you're thinking, I'll help you overcome it. If there's someone who can try and understand you, that's me. For me, this isn't the time to waste time and fool around, this is not like the roles I play, this is real. You are real. I don't care how hard it is but no matter what, I wanna be a part of something so beautiful... A part of your plans in the future. Please. For old times' sake, let me be with you all the way." Gisela, lost for words nodded crying as Dorian also shed tears.

"Gisela, thank you. I love you..." Dorian whispered to Gisela as he caress the woman's hair, embracing her long and tight enough to make her feel safe.

"Let me drive you home." Dorian told Gisela.

They both started living under one roof at Dorian's condominium unit.

One morning, as they're lying on the bed, Dorian hesitantly asked about Gisela's list...

"Dear Piggy... A-are you still gonna continue with that list?" She showed him the list seeing number '6' crossed out.

"Back in the beach, I haven't really finished the list yet. Now, it's done. I actually skipped on number '6' and went straight to number 7, 8, 9 and 10. 'Cause you're not just any random guy... Technically you're my little Dino, but... You're the one." Dorian checked the list out due to his curiosity.

1. Earn a lot for the future. ✓

2. Quit the medical industry. ✓

3. Spend more time with the only family - Merian. ✓

4. Finish writing my novels and posting it to my writing/social platforms. ✓

5. Buy a house in Plage Solitaire at a chosen paradise to 'live and die' for. ✓

6. Have virginity taken by a random guy and leave him clueless afterwards. *Skip this part.* ✗✗

7. Get a writing job. ✔

8. Take care and fully pay insurance. ✅

9. Have the one closest to my heart, help me choose a casket and designs for the tomb.

Plus, choose a church for the blessing and perfect spot in the graveyard/cemetery.

10. Chose a great necrological service speaker. I want a great Eulogy.

Dorian just looked carefully at Gisela's face and embraced her tightly.

Then, she spoke...

"I know. I'm a weirdo." Gisela told Dorian.

"Piggy... You're kinda like scaring me with these things but if this is the way I can be with you, I'll understand, process and digest every single bit of it. I'm not even gonna ask you why you made this list in the first place but if you're ready to not give up on life, I'm gonna go with you if you decided to get yourself checked." Dorian said.

"I'll tell you when the time comes..." Gisela said.

The couple decided to go shopping.

No ordinary shopping but he's only doing it for Gisela even if he doesn't wanna consider the thought.

"You know what? I think this one will be okay. Ah! I know! Maybe I can also have a reservation my own. Same color as I've chosen for you. So when the time comes... We're still gonna go as a couple. Even if it's the after-life." Dorian joked a bit.

"Don't. Even though, couple shirts, couple rings and other couple stuff might be cute, I don't want you to think about a couple casket. You're a born villain. And villains don't die unless it's passed hundreds of years already. Plus, they don't even age. Time flies for them gracefully like a bloodline of a vampire." Gisela joked him back.

The next stop is to the cemetery.

They're choosing tomb designs.

"This is perfect, 'In loving memories of...-" Gisela was cut of.

"We can choose the designs Piggy but it's good to personalize those messages." Dorian said as he wrote things down on a paper.

You have lived a life full of love.

Soon, we'll meet and love again up above.

To the place where there is never-ending peace.

Love,

Your Dorian

Gisela smiled at Dorian and they went to the cemetery.

Gisela insisted to choose a spot.

"This spot is nice. The one near the tree." She said.

"I would already reserve those two spots next to each other. So that I can lie down with you forever when the time comes..." Dorian said Gisela shed tears and hugged Dorian.

"I don't wanna take you in this journey with me. You're not welcome this early to where I'm heading. Sorry for being so difficult but thank you for having number 9 checked off my list." Gisela said as she embraces her boyfriend.

A day after Dorian's shoot, he went home to Gisela and the house was empty.

Their things are scattered all over the floor.

The entire house was messy.

But...

There are no traces of Gisela everywhere.

She's missing.

"My dearest, why end up dodging the bullet once more? Running away and hiding again on me like that." Dorian whispered.

He searched everywhere for her and in a place he thought Gisela would go to.

"She's not here. She went through a deep trauma after she saw her parents died in the car accident. I know my cousin can be a handful, but please, don't give up on her." Merian said.

Dorian just nodded and headed off.

Dorian did not bring his car along to find Gisela in the hardest and most hidden places in the city.

As he was walking along the subway...

He found a cying woman.

With hands on her head and her hair covering her face.

Her hairs are tangled and all over the place.

Her skin's full of dirt.

When Dorian tried to look at the woman's face, he was shocked.

It was Gisela.

He brought the woman home and cleaned her up.

She fell asleep crying.

As soon as the woman woke up, she said she's gonna use the toilet.

"You sure you can stand?" Dorian asked. The woman just mindlessly nodded.

Dorian thought to check on Gisela when she's taking too long.

He did not lose hope until this sight.

He found Gisela lying unconsciously on the bathroom floor.

"Gisela!!!" He lifted the woman and brought her to the nearest hospital.

Dorian waited for hours for a doctor to come up to him and say that Gisela's okay.

"A-are you with her?" Dorian nodded as the doctor approached him.

"I'm doctor Ariel James Devant, Psychologist." The doctor introduced himself.

"We did not ask for a Psychologist, we need a Physician to have Gisela checked!!!" Dorian almost lost it.

"She's not physically sick. Not until now. We have pulled up a few counselling records of Gisela. In fact, I was her batchmate in Med-school, she quit and did not finish Med-school. So she just continued being a nurse. Because of her parent's car crash, her parents died in front of her in a car accident. She then became my first patient. I have checked on Gisela a few times and she never went back to the clinic afterwards. She's so indenial that something's physically wrong with her and insistent that she's nearing death, that she shuts down people who wanna have her checked by a professional or by any doctor. She has been diagnosed with constant fear of death that it lead to a severe case of anxiety." Doctor James said.

Dorian was not able to process what's happening and could not speak.

"People who has Thanatophobia, would not like to talk about death for it has caused them depression. On her case, it's different. For that's the only thing she wanna focus and talk about out of fear. Like her whole entire world revolves on the thought that she might, oh sorry, that she 'WILL' die. She already decided that for herself. Anxiety took a toll on her that her brain was mentally pausing because of too much stress, overwhelming worry, overthinking and unshown worry, sometimes this can cause nausea and problems with balancing." The same doctor continued talking.

"Maybe this is the reason why she 'slipped' in the bathroom. She lost consciouness in the bathroom because she might have hit her head on the floor. Now, there's internal bleeding, we need to have an operation ASAP to prevent brain mass. You have to prepare because the operation is risky, after that, she may go under a few days, weeks or even months in coma. Worst case is never to wake up." Another doctor spoke.

"My apologies, I forgot to introduce myself. My name is doctor Jessie Ulysis Voltaire. Neurologist and Physicist." He introduced.

After that, they all worked on Gisela's operation.

They spent hours to finish it and what they said was true...

Gisela fell into a coma for weeks now and counting.

Dorian held the woman's hand in his...

He got a Pig and a Dinosaur stuffed-toy that he put on the hospital bed beside her.

"Do you remember this Dear Piggy? You're Dinosaur's here to wake you up. You're my nurse. You shouldn't be lying there for a long time, at that bed. You're supposed to be the one who's taking care of me." Dorian said.

The woman was just unresponsive.

She was still deep asleep.

"You should have told me what you're going through. I should have understand. A-are you punishing me for loving you so much?" He said, sheding tears as he kissed the back of Gisela's hand.

#Youtube

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dellardragon · 4 years ago

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First Essay

I was born in Bloomington, Indiana in 1974, to a middle class couple. They were well meaning. But they weren't a particularly happy one. They would split up when I was 5. My father would ask me if I was happy he was leaving. I answered honestly. I said yes, because I knew the shouting matches that they would get into every few nights would stop...

My early years, at least according my mother, and some dim memories that I still hold from those times, apart from the friction between my parents, were reasonably happy. My mother has recounted that I was relatively easy going as a hatchling. Never complained unless there was something truly wrong. I was apparently very outgoing. Very focused on people. I seemed to be always trying to get them to smile. When we prepared to move to Alexandria, Virginia a year later, many of our neighbors, some who had acted as my sitters when my parents were working, made a point of saying goodbye to me specifically. I was apparently rather popular as hatchlings go...

My experiences at kindergarten were mostly positive. It was run by the Episcopal church my mother went to, after we moved into the DC area. I was diagnosed early with learning disabilities. Therapists that worked with the kindergarten, worked with me, explaining to me as best they could how I was different, and taught me ways to cope. They started physical therapy to help my brain learn to control the body it had a scrambled connection to. They taught me to make sense of the wall of noise, presented to me by my senses. My brain, having to do the hard work of processing the data that normally would have been handled by my malfunctioning brain-stem, became quite burley, as a neurologist would explain to me decades later.

I had an inquisitive mind. I was curious about everything, wanting to know how they worked. I was able to grasp complex concepts that often one needed to be much older to understand. At three years old, as my mother once recounted, I would exclaim the revelation that numbers could go on forever, without end. When I was in second grade, after my mother, at my insistence, read me a high school level book about how nuclear reactors worked, as a bedtime story, would start drawing up and then refining, schematics for a nuclear powered rocket, complete with two reactor cores, radiation shield, and RCS thrusters to spin the vessel to simulate gravity for it's occupants. My IQ would later be measured around 150.

I was understood in kindergarten. I had teachers well versed in learning disabilities, and patient and kind. And I had a mother who had once been an educator herself, who advocated for me passionately. I was happy.

My school career would be less happy.

I was still quite awkward. I would be receiving physical therapy for a further 5 years. When my mother took me to see what would be my first elementary school, I went running across the playground, and before she could catch me, would run straight into a metal link chain that would catch me at neck level, and throw me to the ground. I was unable to stop myself in time.

My first grade teacher would be a Ms. Stein who was every bit as unwilling to understand about my condition as the kindergarten teachers were kind to me. She would help make my first year of schooling an absolute hell.

This was the early years of understanding about learning disabilities. Many teachers, too set in their ways, were unwilling to make accommodation. The Americans With Disabilities Act, that would reserve the right of the federal government, to deny funding to a school that didn't make proper accommodations for disabled students, was still a decade away. Learning disabled students were picked up by smaller buses, on special routes. Some schools housed them in homerooms with students with a variety of disabilities, keeping them out of the general populations as much as possible.

I would have a spelling teacher in fourth grade, who would keep me after class every day, because I couldn't finish my work in time, largely due to the motor coordination issues I had with writing. While my classmates got to watch a mid day movie during the break before lunch, I would be forced to struggle through the rest of it, with the teacher breathing down my neck. I still remember her scowl. Her telling me that learning disabilities didn't exist. That I was just slacking.

The stigma was heavy, and the students noticed. For years I would spend nights cuddled up next to my mother wailing about how I had no friends. How everyone was mean to me. And I didn't understand why...

I began to withdraw. To dread school. To me it was all struggle. All judgment. All punishment for me being different.

It would not be the only horrible thing to happen to me.

When I was 7 I was sexually abused by a neighbor down the road. A mentally challenged teenager. He was 14 but with the mind of a 6 year old, and had no idea what he was doing. But the damage lives with me to this day.

My father had mental problems. He was violent towards me, when he had problems controlling his anger. While I would say that later on we got along well enough, he never really held the place a father would in my life. He tried, but he was too haunted by his own abusive past.

I developed severe OCD when I was 13. My early teen years was spent seeing psychologists, psychiatrists, and neurologists. I was put on a veritable cornucopia of various SSRIs and other medications, searching for the right medication or combination, to turn down the volume on the screaming thoughts in my head. The ones about how I was dirty, and needed to clean myself endlessly. It would get bad enough that, I would eventually spend 13 hours a day in the bathroom, doing horrible things to myself, trying to get clean. My hair turn blond, from all the hydrogen peroxide I was spraying everywhere, trying to sanitize my home around me. My mother would threaten to get me hospitalized, if I didn't seek help. Thankfully, I was eventually able to find a medication that turns that scream down to a dull roar.

When I was 17, I came to understand that I was Gay. My mother was extremely understanding. While she feared that I would experience further prejudice, she made clear that the only issue she had with it (and she made it clear this was HER issue, and NOT mine),was that she probably could expect no biological grandchildren. She was right about that, alas.

I also developed clinical depression. At one point I was sleeping 14 hours a day, and eating myself into oblivion, because I felt like I had no real future that wasn't filled with just more suffering.

Throughout my life, I would struggle. Find myself the strange one. The one looking in from the outside, not allowed to have a normal life. To be subjected to horrors that my mother could not completely shield me from. And worse, I was smart. I became increasingly aware of how dysfunctional the world was. How arbitrary.

Things have thankfully changed for the better, for me, lately.

I have friends that I have made over the years since I left school. I now have a bit of a social network. After two extremely dysfunctional relationships (after taking a break from such things), I found a partner that I am truly compatible with. Our interests compliment each other wonderfully. He is my best friend, my partner, and my collaborator in geeky projects aplenty. Even with the world ironically seeming to fall off a cliff, just as I'm finally finding my own equilibrium, I have new friends that helped me grow a community, that we found ourselves inheriting. It's a social circle that we all can lean on, for which I am very grateful. It took nearly 4 decades of life, but I feel like I finally have a future. Something to do. Something to look forward to.

I found that I am very unusual combination.

I am a nerd, with interests that until very recently, were considered fringe, and were generally derided in most cases. Not considered dangerous, but definitely childish and unmanly. Videogames, science fiction, fantasy, and being a science and tech geek, were all things that would get you looked at oddly, or dismissed as a dreamer, as if being a dreamer was a bad thing. My experiences have formed what I believe is probably either a unique or at least uncommon viewpoint on the world. I'm not a part of the rat race. I have no career due to my conditions. I have no children, and no plans to have any. I feel that I am too unstable. It would not be good for me to be having to take care of another life, that was entirely dependent on me, when I am not able to really look after myself on more than a very basic level physically. But I'm incredibly bright, which is both a blessing and a curse. I'm good with technology and science, and can grasp the concepts, if not consciously the math. I can make inferences that have proven to be reasonably accurate. And I have time to think. Time to wonder, and to learn. And I have what I hope is a decent writing ability.

And I've stumbled. Alot. I've made some doozies of mistakes in my life, that have humbled me, and hopefully given me some measure of understanding, if only simply "Okay, better not to do THAT again..."

So here I am. I may not be female, or a person of color, but I am still a minority in my own way. I'm gay, an abuse survivor both sexual and physical, a sufferer of mental illness, a person with disabilities, and a person with interests that for the majority of my life were looked down upon, and to this day still carry some stigma. A minority, of a minority, of a minority, of a minority, of a minority.

And I'm getting older. I'm thinking about mortality. About what I will leave behind when I pass off this mortal coil. There will be friends to remember me, but no children to carry on in my stead. Robin Williams once said the wonderful thing about having children is that they are both you, and not you. But that in some way, it's a ticket towards, if not immortality, towards having something of you live on, after you for at least a time. I don't have that...

I want to leave something behind. Something that hopefully can endure after I am gone.

As I said before, I have some decent writing ability, or at least I'm told that I do. It's not the first time I've considered doing this, but lately, with everything that's going on, I figured, what the hell. Best to just get on with it...

They say that nothing really ever disappears on the Internet. That it may become harder to find, but it's always still out there somewhere...

So, after much procrastination, I have decided to start writing. To create essays that give my point of view on what hopefully will be a variety of topics. Some will be on politics, some on philosophy, some on science and physics, some on more geeky topics like fandom and science fiction, videogames, etc.

I will try to post at least 1 thing a week on Facebook, Tumblr, and Furaffinity (yeah, I'm also one of them furries). Hopefully someone will read these and take away something of value. That maybe it will change an opinion, or give an insight or inspiration. Something that can survive me, even if my name and who I was is forgotten. Here's hoping.

And here goes nothing...

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unnamedjournals · 6 years ago

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Let’s Try This Again.

For the very few people who actually used to follow this page and the one or two that have followed since I dropped off the map, I’m not dead yet. Keeping a journal only when I wasn’t doing well wasn’t the plan, for the record. I could explain but to be honest I don’t remember all that clearly why I stopped except that I know it was probably a lot of reasons. I didn’t feel like it was helping, I couldn’t make time or energy, forgot over and over and over and fuck it, whatever.

It’s been almost two years? Over two? I don’t know, I didn’t do the math before I started writing and now I can’t scroll to check the date and time on the last entry. Doesn’t matter.

Good hell a lot’s happened and changed since then.

Let’s see... uh.

A lot of this happened concurrently and intermingled but I’ll do my best to make heads and tails of it.

Broke up with the guy I was dating in previous entries. Found out a whole lot about him recently. I was upset when he ended it but now I see I dodged a bullet.

Briefly (like a week) dated another guy, things happened, we tried to be friends for about a year and change after it but more things happened and long story short he’s not allowed to be around me at game anymore. A story for a different time. It’s a doozy.

I quit the delivery job. I didn’t feel safe driving under that much stress with the zoning out thing. Still do that by the way, it’s actually gotten worse. As it happens there was a panic attack about that just two hours ago, fancy that. I’ll come back to that though.

Started LARPing a hell of a lot more, kinda took over my weekends for a while there and I had to cut back some. I’ve played some really awesome roles though.

Turns out I’m bi? Happy Pride Month everyone. Yeah figured that out mid 2017, dated a fantastic woman for three months. Didn’t work out by no ones fault, but the only thing I regret is how poorly I handled the end of it. She was the first time I’d fallen in love, and it ended way too quickly for me, and I made a right mess of it. I’ve been meaning to apologize for the last year, but again, that’s a story for a different time.

Oh right, on the zoning out bullshit. I went to a neurologist. Two actually because the first was a sexist sociopath. So the first sent me to get a 15 minute EEG (brain wave scan) that came back saying I had Partial Complex Seizures. He then made some very sexist comments and I left. The second neurologist said he agreed with seizures but based on all my symptoms it sounded more like Absence Seizures. Buuuuuut he wanted to do another EEG to be sure, this time for 24 hours. I had to wear a shit ton of wires taped onto my head all attached to a box that I brought home and carried with me everything. Kinda cool, kinda sucky. But I did it, and even had two episodes during it that I marked down the time and what I was doing. Test came back totally clean. No sign of seizures at all. Doc said he was at a loss because I made a perfect story for Absence Seizures but completely lack the neurology so there wasn’t really anything he could do. I did just last month get diagnosed with ADHD though so that’s probably a good portion of where it started.

I finally let go of a person in my life who was doing more harm than good. She got married yesterday. I wasn’t there. Eventually I will stop being bitter about the things that went wrong, and eventually I will stop thinking about how she is or how things might have been different if I could have stood up for myself better. Not today apparently, but eventually maybe.

I began paying attention to politics. Gonna stop there on that one, but long story short there is a part of me that now hates my father for the words that come out of his mouth.

I dropped the community college classes I was taking because I was too depressed to manage. And then started again the next semester because I thought I found a career option. Switched that career path twice before deciding to just get my associates and work from there. I only went for two semesters, but at least I didn’t drop half way through this time. I stopped going for a year, absolutely positive that I would never go back. I was just going to start working full time and build a career on experience. Didn’t really work. I’m now signed up for fall classes in apparel construction to eventually lead into a career in costume design with specialties in historical fashion and LGBTQ+ fashion needs. But there’s some emotional shit in the way, because of course there is. More on that soon, probably its own entry.

Started a new relationship after I had time to heal from the previous. We were both nervous about dating again after the hurt from our lasts and we thought we would take it slow. Slow didn’t really happen. It’s been a year and seven months yesterday, and in that time we’ve said I love you more times than I can count, we’ve fought for each other, we’ve fought with each other, we’ve cried together, we’ve laughed for hours, they moved in with me and my parents, we’ve made big plans, we’ve made small plans, we’ve lost and changed plans, they moved out of my parents house, we’ve put our relationship on the line, and we’ve nearly broken. The last few months especially have been messy. Even a summary would need it’s own entry.

A little over a year ago I started having persistent and ever worsening pain all over my body. Every part of it. Even there, wherever you just thought of. My primary care doc sent me to a rheumatologist, and last June I was diagnosed with fibromyalgia. And again by second opinion in November. For the unfamiliar, fibro is hard to pin down as a diagnosis because for so long it wasn’t really a “real” condition. It was doctors going, “Well it’s not arthritis and it’s not lupus, so I don’t know what to do but I have to tell the patient something.” And a lot of times, it still is that. But it is actually a condition with characteristics. Think of it as the whole nervous system is in fucking overdrive. Some days are better or worse than others, and where on your body can shift around, but I don’t know that I’ve had a single day in the last year and change that I wasn’t in pain somewhere to some degree. I’ve been to more doctor appointments in the last year than I think I’ve had in my life leading up to this. It’s terrible and comes with a million other symptoms. Like migraines. I get migraines now. Mostly from auditory overload, but bright light can add to it. And guess what else comes with it. It’s commonly called Fibro Fog, which is problems with concentration and memory loss. Remember how I said the zoning out thing was getting worse? Yeah. Fucking great. So I’ve got ADHD, depression, anxiety, and now fucking chronic pain all doing the strong arm clasped hand meme of making me forget shit left and right. And my shoulder and fingers have been hurting from typing but I can’t stop or I won’t have the nerve to finish and post this.

I turned 21 the other week. Great. Finally. Moving on.

The Crash finally hit.

I spent the first year constantly worried it would, but somewhere along the way things actually started looking good. Like not 100% of the time, but like even when outside things were bad I didn’t want to die because of it. I was handling the curve balls and enjoying life and taking a step forward every day. I didn’t always know where that step was going but I was taking one and I was damn proud of myself. And then last week. Yike. Trigger warning imminent, skip to the next paragraph if you don’t want to read about thoughts of suicide. Last week was the first time in so long, so, so long, that I imagined my own death in detail. That I came up with a plan. That I imagined carrying it out. How far down this spiral I would have to go before I killed myself. How I would feel if I got there and made that decision. And I’ve thought on it multiple times since then. I won’t describe it now, but I will say that it’s a new plan than I had before. I’ve always picked my plans on the likelihood of them working and what damage would be left with my body if I failed, but also clean up for whoever would find me. The current idea is a trade off. Worse in the way of clean up but better success chance I think and the same in the way of damage in the case of failure. (I wonder if it’s weird that I’m so clinical about this.) I haven’t said these words out loud yet to anyone.

My mom and partner know I’m more depressed than I’ve been in a long time, so much so that I’ve considered looking at anti-depressants, but not the full extent. I want to talk to my therapist first but getting a hold of her for the phone check in last week didn’t work. Turned into phone tag. My next in person appointment is Thursday but I’m going to leave a message for her tomorrow asking if we can scoot it up because I don’t know that I can make it that long.

Uhh. Yeah. I think that covers the recap. Fucking hell, it’s been a wild ride.

1:44AM Sunday, June 16, 2019

#anonymous journal #unnamedjournals #depression #tw: depression #tw: suicide #chronic pain #fibromyalgia #tw: suicidal thoughts

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fitnesswomenshealth-blog · 6 years ago

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The UK Is Getting a Much Needed 'Medical Cannabis Society'

New Post has been published on https://cialiscom.org/the-uk-is-getting-a-much-needed-medical-cannabis-society.html

The UK Is Getting a Much Needed 'Medical Cannabis Society'

A protest exterior Parliament contacting for access to professional medical cannabis. Photograph: Mark Kerrison / Alamy Reside News

The UK’s main clinical cannabis specialist is establishing a society to increase doctors’ being familiar with of cannabis medications, right after it emerged that only two chronically unwell young children have been granted access to medical hashish below an interim panel set up by the federal government, VICE can expose.

The unwillingness of doctors and hospitals to propose patients be dealt with with health care cannabis follows a letter by an influential doctors’ organisation which proposed that “cannabis-linked products and solutions” could trigger mind hurt.

Mike Barnes, the neurologist who supported six-year-outdated epileptic Alfie Dingley’s profitable software for health care cannabis, criticised the basis of the assert from the British Paediatric Neurology Affiliation (BPNA), which represents doctors who care for small children with challenging epilepsies in the Uk.

“They have mentioned that THC is dangerous to the creating brain, which I have to say is a complete misinterpretation,” he claimed. “They are erroneous to say that. The evidence that health-related hashish can be practical to deal with agony, spasticity, nausea, vomiting, chemotherapy and epilepsy is very strong.”

The BPNA’s intervention came months right after the governing administration issued a license for a severely epileptic boy, Billy Caldwell, to be treated with hashish oil, implicitly recognising the therapeutic benefit of hashish medications. The governing administration later declared that hashish-derived medicinal merchandise will be lawfully prescribed to sufferers with “an exceptional clinical will need”, and released a panel to regulate purposes till a new extensive-ranging procedure arrives into spot at some position throughout autumn.

On the other hand, several are not able to get the prerequisite assist from health care industry experts to make an software. All-around 20,000 little ones in the United kingdom have epileptic ailments that do not answer to standard medications, although tens of thousands extra are living with illnesses that could be treated with hashish medicines.

A billboard telling Alfie Dingley’s story. Picture: Amer Ghazzal / Alamy Reside Information

At the moment, 15 people are in contact with Finish Our Pain, a primary marketing campaign to legalise professional medical cannabis, immediately after they ended up not able to get backing from their regional NHS trusts or their medical doctor. Some families have been in a position to make programs, but were turned down soon after 5 months of nervous waiting.

“When the authorities declared that an professional professional medical panel would be set up to take into consideration urgent apps for authorization to utilize for a licence to use medicinal hashish, it looked like a beneficial result for families like ours,” says Ilmarie Braun, whose 3-12 months-aged son, Eddie, has a rare type of intractable epilepsy that cannabis oil gives reduction from. “But the federal government unsuccessful to issue any guidance to NHS trusts throughout the state about the reason of the panel, or the software procedure, so it fell to specific families to try to teach their medical practitioners.”

In get to be granted entry to sure hashish-dependent medications, individuals ought to reveal that “extraordinary medical will need” in their individual situations – a clause some medical practitioners have understood to mean sufferers ought to show that just about every single other anti-epileptic drug hasn’t worked.

“Some doctors are interpreting the regulations to mean you need to have tried out all 21 anticonvulsant prescription drugs before you can try out hashish, which just isn’t correct at all,” claims Barnes.

An onus is also placed on families to demonstrate that the possible medication is efficient, which means they must have previously absent abroad to lawfully purchase and check it at their very own cost – some thing which lots of both do not have the assets to do, or simply cannot do since they are much too unwell to journey.

Braun thinks her son’s application – a single of the handful gained by the panel – was refused on this basis, considering the fact that the only licenses granted so significantly have been to individuals who have been capable to depart the British isles.

Other folks, these as Emma Matthews, would like to utilize, but seemingly simply cannot because her family has not fatigued all other achievable alternatives. Her 15-year-aged son, Louis, has a intricate strain of epilepsy which is however to be properly diagnosed, and his clinical workforce are insisting he to start with tries each individual possible treatment method, like a pacemaker-like generator.

“He’s been presented seven unique anti-epileptic prescription drugs, which have all brought about horrible aspect results and manufactured his seizures even worse,” she tells me. “His electricity stages are virtually non-existent, and his cognition and memory have been significantly afflicted. Louis’ professionals are not able to implement for a specific license simply because they have to indicator a thing which says all other regular possibilities have been attempted. This signifies about 5 extra medicines and an implant which electrically stimulates nerves, a vagus nerve stimulator (VNS).

“Each individual new medicine normally takes months to titrate and weeks to wean off, in the course of which Louis will endure rebound seizures, serious clusters and a intense sort of seizure named standing epilepticus, which wants crisis health care remedy. Final thirty day period he was in healthcare facility 2 times, at the time with position epilepticus. The hazards of unexpected unexplained loss of life in epilepsy and mind harm from these seizures is very substantial. Not allowing him the only medicine that may well support him just will make no sense.”

Barnes recognises that doctors, several of whom understandably do not have any experience in cannabis medicine, might be unwilling to propose it. Nonetheless, he is discouraged that some have picked to overlook the rising system of proof – as properly as a prosperity of anecdotal studies.

“There is sizeable proof that use of THC in the producing mind can induce destruction to IQ, mental health and brain composition,” the BPNA letter examine. “These modifications may perhaps be lasting,” they concluded, even with recognising that cannabis oils may perhaps have anti-epileptic consequences.

Barnes questioned regardless of whether the BPNA realised that alternatively of currently being superior-THC and reduced-CBD, like a great deal avenue hashish, professional medical cannabis items commonly involve really tiny quantities of THC.

“There is some evidence that large-THC, lower-CBD avenue hashish does bring about extended phrase cognitive damage between heavy leisure, mainly male, buyers commencing in adolescence, nonetheless there are other reports that have refuted that,” he clarifies. “CBD counteracts the impact of THC, so there is correctly no hazard of these children finding cognitive problems from the small bit of THC we are suggesting. It really is absolutely illogical to say, ‘You are not able to have THC because it causes brain problems, but you can have this drug that results in mind hurt, and you can continue on to have seizures which also cause mind injury.'”

Barnes is to launch the British Medical Cannabis Society in November. It is establishing the “Anslinger schooling programme”, the only these scheme of its kind in the United kingdom, which will be free of charge to all doctors, and which he hopes will be accredited by the Royal University of GPs.

Anslinger was, according to Barnes, mostly dependable for demonising hashish in the early 1920s and 30s, so the name represents a thinly veiled barb toward him.

Hannah Deacon, mother of Alfie Dingley and spokesperson for Conclude Our Pain, thinks that the technique should really be significantly simpler for people to access recommended healthcare cannabis – a complaint that Barnes’ new culture seeks to redress.

“Men and women are struggling sufficient without more hurdles in their way,” she suggests. “This medication could assist so several and help save the NHS so a great deal money. I hope the authorities do the ideal issue and assistance patients to get far a lot easier access and teach medical practitioners urgently.”

She points out that her son, Alfie, experienced clusters of seizures for decades and was taken care of with IV steroids, which she states “can destroy you, set you into organ failure or give you psychosis”. Soon after Alfie commenced making use of total extract cannabis oil he has been seizure-free of charge, with his dad and mom looking at a phenomenal advancement in his affliction – a single that has permitted him to return to university and dwell a rather typical everyday living.

Past 7 days, the Labour MP Tonia Antoniazzi accused Home Secretary Sajid Javid of only shelling out “lip provider to two significant-profile scenarios”, and urged Theresa May to “present authentic management”. This adopted a report on BuzzFeed that said the Residence Business office established a swift reaction system to solve immigration situations that were being generating poor publicity.

A House Office environment spokesperson claimed: “We absolutely sympathise with the family members who have been dealing with determined conditions as they check out to come across remedy. The panel will be seeking for the expert clinician to display that there are extraordinary scientific instances.”

@matthabusby

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yes-dal456 · 8 years ago

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If Only The Rest Of America Got Concussion Care Like NFL Players

Dr. Geoffrey Manley, a California neurosurgeon, is no football fan. He isn’t planning to attend a Super Bowl party this Sunday, and he doubts he’ll even turn on the TV at home as he works on other projects.

But for the past four years, Manley been intimately involved in trying to prevent one of the NFL’s most dire problems: permanent brain damage as a result of untreated concussions.

In addition to his job as chief of neurosurgery at Zuckerberg San Francisco General Hospital and vice chairman of neurological surgery at the University of California, San Francisco, Manley also moonlights as an unaffiliated neurotrauma consultant, or UNC, for the Oakland Raiders. That means he has a sideline view of every home game, and is part of a medical team that evaluates players who have taken hard hits and could be at risk for concussion.

The NFL established the UNC program four years ago, as part of the league’s multi-pronged effort to prevent concussions from happening in the first place, and to prevent athletes from playing through a traumatic brain injury. Continuing to play with a concussion can make the injury worse and prolong recovery time. In advocating for the UNCs ― independent experts who are not part of the team or the team’s medical staff ― the NFL players’ union hoped that objective parties could help relieve the competitive pressure athletes and coaches often feel to play through the pain.

The stakes for the players are high, both during their careers and afterward. In a small but illuminating MRI study of 40 retired NFL players, researchers found that 43 percent of them showed signs of brain injury. The longer athletes had played for the league, the more damage they showed. These injured players had a mix of cognitive problems and struggled with learning, memory, attention, concentration and spatial and perceptual function.

The UNC program is by no means perfect, and as with any policy, it all comes down to how well teams implement it. In 2015, one of the independent neurologists resigned after abruptly reversing a decision he’d made about a Washington player’s ability to return to the field. The NFL is also investigating whether the Miami Dolphins and medical experts followed the proper concussion protocols after player Matt Moore sustained a major hit yet returned to the game after missing just a single play last January. Other controversial calls included Carolina Panther Cam Newton’s return to the game last September without a concussion evaluation, even though he was slow to stand up after a hit.

Football, like other contact sports, is inherently dangerous, and preventing athletes from playing while concussed is just a small part of the league’s efforts to protect against future brain damage. But league-wide concussion statistics suggest the program is working as intended. During the 2015 season, the NFL saw diagnosed concussions rise by 58 percent ― the highest number in four years. Although this statistic is alarming, it could be a sign that more players and coaches are coming forward about symptoms, and that medical experts are becoming more vigilant about injuries.

Overall, Manley’s experience has been positive. He views this program as a state-of-the-art response to head injuries, and considers himself lucky to be able to observe and care for traumatic brain injury in real time.

His main concern? The rest of America isn’t getting this kind of care.

“It is shocking how little follow-up and care people are getting after their non-sport, civilian-related traumatic brain injury, like falling off a bicycle,” Manley said. “Traumatic brain injury out in the community is a major public health issue, and I think the community would do well to adopt some of the things the NFL is doing now.”

While Manley has committed to at least one more season as a UNC for the Raiders, he hopes to take what he’s seen and try to help hospitals across the country implement similar standards of care for traumatic brain injury.

Concussions take a major toll on American health

Traumatic brain injuries can have extremely serious consequences. A 2003 analysis found that among some 290,000 people hospitalized for a TBI, 43 percent had a TBI-related disability one year later. TBI is also a factor in 30 percent of all injury-related deaths in the U.S.

The average American, however, is by no means assured of proper care for a head injury. The most common causes of TBI among the general public include falls, blunt trauma and car collisions. Approximately 2.2 million visits to the emergency room and 280,000 hospitalizations a year end in a diagnosis of traumatic brain injury, which the U.S. Centers for Disease Control and Prevention define as a “bump, blow or jolt to the head or a penetrating head injury” that results in a loss of normal brain function.

But research shows that getting a concussion properly diagnosed can be hit-or-miss. A 2008 study of the emergency departments in a Level I trauma center and an academic hospital showed that 56 percent of patients who showed signs of a mild TBI did not end up with a TBI diagnosis, according to hospital medical records. Misdiagnosis can interfere with concussion management and rehabilitation.

TBIs can range from mild (concussions) to severe (memory loss or unconsciousness), and they are linked to an increased risk of degenerative brain diseases like Parkinson’s disease, Alzheimer’s disease and chronic traumatic encephalopathy, which has been diagnosed in the brains of dozens of former professional football players after death. CTE was also at the heart of a lawsuit filed by more than 5,000 former NFL players who alleged that the league hid knowledge of the link between concussion, brain damage and suicide. The suit was settled in December, awarding players or their families up to $5 million each depending on the severity of their injuries.

How the NFL spots possible concussions on the field

If athletic spotters up in the booth see signs that a player may be concussed (balance problems, disorientation, clutching the head or loss of consciousness), they can radio down to UNCs like Manley and call for a medical timeout, so the player can go through a neurological examination.

UNCs screen athletes for confusion and disorientation on the sidelines, asking them questions about, for example, today’s date or the current U.S. president. Depending on this sideline examination, the UNC may choose to bring the athlete back to the locker room for more a comprehensive examination. If a player shows signs of a concussion, he doesn’t return to the game; instead, he’s observed daily over the next few days or weeks to make sure he returns to his normal cognitive health. Both the team doctor and the UNC have to sign off before the athlete can return to the field. To give the protocols even more teeth, as of 2016, teams can now be fined or lose draft picks for failing to remove injured athletes from the field.

By contrast, there is no typical experience for the average American who falls and hits their head, or takes a spill during a pickup basketball game. A 2016 survey of emergency departments in New England found that 35 percent of them didn’t have guidelines for concussion management and 57 percent said their guidelines were used inconsistently. Doctors who did give patients written follow-up instructions (94 percent) recommended inconsistent schedules for more care, referral specialists and returning to normal activities.

An analysis of U.S. pediatric emergency department data from 2009 to 2012 found that concussion diagnoses had the greatest variation in hospital admission rates (5 percent to 72 percent), even after adjusting for severity of the injury.

And general awareness of concussion care is spotty. A 2015 survey of 328 athletes across seven college sports found that more than 25 percent of them had felt pressure from a coach, teammate, parent or fan to keep playing after a head impact. Athletes who felt pressure from all four of these groups were indeed more likely to keep playing.

There’s no consensus on what a concussion is

The NFL has a leg up on the rest of the nation’s emergency departments in that it uses an agreed-upon definition of concussion and tries to apply it across all 32 teams, said Dr. Jamshid Ghajar, a clinical professor of neurosurgery and the director of the Concussion and Brain Performance Center at Stanford.

But for the millions of Americans who will suffer a blow to the head this year, doctors are left to rely on symptoms like headache, nausea, vomiting, fatigue and confusion ― things that, among the general population, can be caused by a host of other reasons. Complicating matters is that by the time most people make it to an emergency room or a primary care doctor, many of the most immediate symptoms will already be gone. This isn’t the case with concussions that UNCs witness at NFL games in real time.

“I think the public thinks that concussion is well-defined and people are just ignoring it,” said Ghajar, who is not affiliated with the NFL concussion protocol. “But in actual fact, it’s not defined, and there are about 40 different definitions for concussion.”

Ghajar is currently working on research to standardize the way that we define, diagnose and treat concussions in the U.S. To help standardize care that American concussion patients receive, Ghajar is working on a definition of concussion that incorporates the possibility of different concussion profiles, depending on the symptoms that follow. Some people may have balance or attention problems, some experience headaches and others have depression.

It is shocking how little follow-up and care people are getting after their non-sport, civilian-related traumatic brain injury. Dr. Geoffrey Manley, chief of neurosurgery at Zuckerberg San Francisco General Hospital

Until researchers understand more about the biology of concussion, there won’t be much U.S. hospitals can do except follow the NFL’s lead to establish a uniform system for evaluation, diagnosis, treatment and aftercare.

“This is as good as it gets, given the current science,” said Ghajar of the NFL’s current system for spotting and treating concussions. “And it’ll improve as time goes on.”

Sean Sansiveri, vice president of business and legal affairs of the NFL Players Association, hopes that this Sunday’s Super Bowl will be injury-free, with little for the UNCs to do.

“But if that doesn’t happen, I suspect [viewers] would see a collaborative concussion evaluation process between a number of medical experts on the sidelines, including the independent concussion specialists, relieving some of the competitive pressures on health care decisions,” Sansiveri said.

Whether or not Americans will encounter the same level of care is another question entirely.

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imreviewblog · 8 years ago

Text

If Only The Rest Of America Got Concussion Care Like NFL Players

But for the past four years, Manley been intimately involved in trying to prevent one of the NFL’s most dire problems: permanent brain damage as a result of untreated concussions.

His main concern? The rest of America isn’t getting this kind of care.

Concussions take a major toll on American health

How the NFL spots possible concussions on the field

There’s no consensus on what a concussion is

“This is as good as it gets, given the current science,” said Ghajar of the NFL’s current system for spotting and treating concussions. “And it’ll improve as time goes on.”

Sean Sansiveri, vice president of business and legal affairs of the NFL Players Association, hopes that this Sunday’s Super Bowl will be injury-free, with little for the UNCs to do.

Whether or not Americans will encounter the same level of care is another question entirely.

-- This feed and its contents are the property of The Huffington Post, and use is subject to our terms. It may be used for personal consumption, but may not be distributed on a website.

from Healthy Living - The Huffington Post http://huff.to/2ky4Vuv

#Healthy Living - The Huffington Post

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