#motor neuron diseases

[dangerdust2]

Previous studies have suggested an increased risk of amyotrophic lateral sclerosis (ALS) and other motor neuron diseases for persons in occupations commonly involving exposure to diesel exhaust (DE).

[cbphysiotherapy]

Motor neuron lesions can greatly impact an individual's mobility and daily function, but with proper physiotherapy treatment, there is hope for improvement and recovery.

[tuptastic]

Disability, especially with a rare condition, is so difficult in so many small ways.

It's the stares you get when you walk around and they see your gait, unusual and unstable and a clear sign something is wrong.

It's being ignored in favor of your companions because the person in a wheelchair obviously can't speak for themselves, right?

It's being followed in stores because of your service animal, and being photographed and touched without your consent and having medical episodes expanded on because strangers approach you when you're down to ask questions and refuse to allow her to work.

It's having to plan trips carefully because you know there are areas you can't access and things you can't do anymore, and seeing your friends faces flicker with emotions you can't describe even though they try so hard for you.

It's having to work twice as hard as your classmates to achieve the same results, because you physically can't handle the same effort they put in.

It's seeing the shocked looks when you remind people that accessibility is done to the bare minimum, and that there are places I can't access because it's deemed a financial burden to change.

It's knowing the look on a doctors face when they have once again found no answers, and when you're going home again with nothing despite everyone telling you something is wrong. And that's at best - at worst, you go through another period of mistreatment and neglect, or you end up back on a treatment that almost kills you.

It's never having a community because there is no one else out there like you. You can get close, but you will never find your people.

It's painful. It's terrifying. And it's so hard.

[scotianostra]

Scottish Rugby Player Doddie Weir was born on July 4th in Edinburgh.

Born George Wilson Weir, Doddie was educated at Daniel Stewart’s and Melville College and given the school’s heritage with the sport, and Doddie’s size, it was only natural he would take up the rugby.

After his education finished he played for Stewart’s Melville FP, the FP stands for former pupil, he then went on to play for Melrose in the Scottish Borders, and was part of the team that won six Scottish club championships.

He was brought uup on Cortleferry Farm, near the village of Stow in the Scottish Borders. horses were a big part of his early life and he competed at local gymkhanas along with his sister Kirsty. Later he went on to represent Scotland at national equestrian events. Once, at the Scottish Horse Trials, he competed against Princess Anne.

As his rugby career progressed he moved to England in 1995 to join the Newcastle Falcons, helping them win the Premiership in 1998.

Lock Weir was capped 61 times by Scotland, and was part of the victorious Lions tour to South Africa in 1997.

He moved back to Scotland to join the newly reformed Borders team in 2002 where he remained until his retirement from professional rugby. He finished his playing career together with Gary Armstrong at Borders Reivers in 2004.

In 2016 Doddie was diagnosed with Motor Neurone Disease (MND) in 2016 and made his diagnosis public the following summer. Although the average life expectancy is between one and three years, he has defied the odds to keep battling and his charity, the My Name'5 Doddie Foundation, has raised more than £4million for research into a cure. Doddie was also told that a year later he would not be able to walk, he defied what the doctors said still walked in up to the final months of his life a testament to the determination and fighting spirit of this remarkable man.

A big favourite with the Murrayfield crowd, the 6ft 6in lock was famously described by the late commentator Bill McLaren as as being “on the charge like a mad giraffe”.

Doddie spoke of his MND

“As a bloke you just think ‘I’m fine’, but with this that’s not quite the case. Basically it’s a muscle wasting disease and that’s how in the later life of MND it’s horrific because you need help everywhere.

"Basically your muscles in your legs disappear so you can’t walk; you can’t really eat, and then your muscles within your speech disappear so you can’t speak; you can’t swallow and can’t breath so it’s horrific what happens.

”….“But it’s such a debilitating condition and there’s nothing out there that can help any patient with MND.

He has signed a “Do not resuscitate” (DNR) IN 2020.

In February 2020 Doddie said his decision to refuse potentially lifesaving CPR came after a tough chat with his sons Hamish, Angus, and Ben, "I’ve had to talk to them about DNR. We’ve just signed a document for that at the moment, which isn’t easy.”

He added: “You just have to be honest and open and they took it really well.”

Weir set up a charity called My Name's Doddie Foundation to help fund treatments for motor neurone disease.

In 2018 The Doddie Weir Cup was inaugurated, a perputual Rugby Union trophy to be played between Scotland and Wales, the first match in Cardiff in November that year was won by Wales, Scotland are the current holders.

Neither the Welsh Rugby Union nor the Scottish Rugby Union originally intended to contribute any of the gate receipts from the inaugural match to the charity, but pressure from fans and in the media resulted in them eventually donating a six-figure sum

On the evening of 26 November 2022, his family announced that he had died of motor neuron disease, aged 52. A memorial service was held at Melrose Parish Church on 19 December, with audio from the service relayed to Melrose RFC's ground The Greenyards.

Clinical trials into motor neurone disease (MND) have received a £500,000 boost from the My Name's Doddie Foundation to mark what would have been his 54th birthday.

[thepastisalreadywritten]

[bpod-bpod]

Neurotoxic Relationship

Lab-grown neural network model bearing dysregulated TDP-43 protein – a feature of neurons in certain neurodegenerative diseases – reveals accumulated NPTX2 protein, that is confirmed in the brains of patients with amyotrophic lateral sclerosis and frontotemporal lobar degeneration. NPTX2 could thus represent a novel therapeutic target

Read the published research article here

Image from work by Marian Hruska-Plochan and colleagues

Department of Quantitative Biomedicine, University of Zurich, Zurich, Switzerland

Image originally published with a Creative Commons Attribution 4.0 International (CC BY 4.0)

Published in Nature, February 2024

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[tattoos4mnd]

[bespokeredmayne]

How to make Eddie’s birthday a happy one

Fans’ annual fund drive for Eddie Redmayne’s Jan. 6 birthday, is on! It’s your annual chance to support Eddie +a cause dear to him for more than a decade now, since his Oscar-winning portrayal of Stephen Hawking in The Theory of Everything.

Even if you can’t donate, please share our posts to help create awareness of this deserving organization + those affected by this devastating disease. The JustGiving link +QR code are in the graphic + below.

[eddieredmayneargentinablog]

More than ever...Thank you! > New video of Eddie for MND Association thanking all the support in 2023 💙

🎥 Full video MNDA on YouTube

[esmesmesme]

Yep, it's MND. This is the most able bodied I will ever be again. I will need a gastric tube, wheelchair, artificial voice, ventilation and then I will die. If I'm very lucky it will take me more than 5 years to do those things. I will not see my children finish primary school, I will not play with them in the playground, I will not support them as young adults.

My partner will have to care for both me and the children, and work to support us before becoming a grieving single parent to grieving children. I hope things will get better for them after that but that feels like wishing for my own death.

I'm not okay with it. I don't see how I can possibly be okay with this. But I need to work that out because it's happening anyway. Me crying about it all the time only makes things harder for me and everyone else.

[goodvibesatpeace]

Rob Burrow

Oh, valiant heart, whose spirit burns so bright,

Rob Burrow, a beacon in the darkest night.

Amidst the turmoil of relentless strife,

You found your solace on the field of life.

With every tackle, ruck, and try you made,

You etched your name upon the canvas frayed.

A master sorcerer with an oval ball,

Your moves enchanted all who watched your call.

But fate had other plans, a cruel decree,

A diagnosis that would set your spirit free.

Motor neuron disease, a torturous foe,

Yet you refused to let it break your flow.

With courage that would make a lion cower,

You faced the darkness with unwavering power.

Your voice became a beacon of resilience,

A testament to hope and perseverance.

Through every trial, you stood tall and bold,

A symbol of defiance, a story to be told.

The rugby world united in your plight,

Bound together by your unwavering light.

Your spirit soared above the pain and doubt,

An inspiration to all who saw you out.

You taught us that adversity can be a guide,

To find strength within and never hide.

And now, dear Rob, as your journey nears its end,

Your legacy will forever transcend.

A legend on the field, a fighter off,

Your spirit will forever shine, a living scoff.

So let us raise a glass in your honour today,

To Rob Burrow, whose courage knows no sway.

May your memory live on forever bright,

A testament to hope, a beacon in the night.

[larchwood]

Aussie Hollywood royalty ‘steals the show’ at Fight MND Big Freeze slide

[alswarriorsa]

Out of Control

I’m spiralling. It feels like I’m free falling without a parachute, about to collide with Mother Earth with a zero chance of survival, and in a way, that’s what MND is.

It robs you of your independence, it robs you of your dignity and eventually it takes your life.

I find myself feeling so angry, sad and frustrated all at once. I can’t express myself properly, I hate the impact this has on me and also the people around me.

I realise that I need therapy, and soon. I’m not coping with this at all, and perhaps it’s just that I’m processing what this all means for my immediate future.

It’s so hard to stay positive when the debt calls keep coming and the universe never lets up. When your family aren’t prepared to help. When people you know that can afford to help, just scroll past your pleas for assistance.

And I know I’m both right and wrong on many of these things, but my emotions are a mess and I can’t adequately deal with anything at the moment.

I want to be held and reassured, but that one thing I want I’m not getting because I’m lashing out.

Today I’ve been jealous of a kitten. Because I too want to be held and adored, but my reality is undignified loo visits, mobility assistance, work and work admin - not the light and fluffy stuff.

Who would adore an angry person who’s a pain in the ass? Pass the kitten.

My conversations don’t get to be fun. They are always about what needs to be done or happen next. What PMBs cover, or don’t, the wheelchair quotes and the next invoice.

And in the middle of all this I free fall.

Finding joy would be great, but I don’t know where to start. It’s practically evading me.

I want to feel like a normal person, for just one day, where I’m me, and not the disabled patient.

I just want my life back.

[brahmhomeo]

Guillain Barre syndrome treatment

[scotianostra]

Very sad news  tonight, Scotland Rugby star and all round good guy Doddie Weir has passed away after a six year fight with Motor neurone disease.  Rest in Peace Big Man.

[bpod-bpod]

Problems with Excitability

Details of the structure and functional changes that underlie neurons' impaired excitability characteristic of the neurodegenerative disease amyotrophic lateral sclerosis (motor neuron disease)

Read the published research article here

Image from work by Peter Harley and colleagues

Centre for Developmental Neurobiology, Kings College London, London, UK

Image originally published with a Creative Commons Attribution 4.0 International (CC BY 4.0)

Published in Cell Reports, November 2023

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