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Amyotrophic lateral sclerosis (ALS)

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On 21/01/2018 at 09:18, msc said:

 

Then she'll want to see the World Cup, and so on...

You’re not wrong on that one. Yesterday she posted on her Facebook about how proud she is of the Belgium team making it this far...

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The latest on Marieke Vervoort suggests that she’s planning on getting a brand new passport, which probably means one of two things: a) she’s traveling the world one last time before her euthanasia happens or b) most of us fell for a Ryan Buell/Scott Thorson type pick. I’m leaning towards b...

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9 minutes ago, Joey Russ said:

The latest on Marieke Vervoort suggests that she’s planning on getting a brand new passport, which probably means one of two things: a) she’s traveling the world one last time before her euthanasia happens or b) most of us fell for a Ryan Buell/Scott Thorson type pick. I’m leaning towards b...

 

The irony though if she died in a plane crash!

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Ah, but I’ve also realized that no one except the randomized team picked her in the inverse pool, and that might’ve been the smart choice actually...

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The latest on Vervoort’s Facebook page suggests that she’s having an operation. Probably not anything that’ll have impact on the DDP, but I thought I’d bring that up...

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I doubt it's a head transplant so she should be fine or even better - unleeeess they have to remove a tumour.

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Update and lengthy article on O.J. Brigance, former NFL player who will 'celebrate' (hmmm well what other fucking word would you use?) 12 years with ALS this month.
SC

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Bernie Dalton, the aspiring songwriter from Santa Cruz who lost his ability to speak, move and sing due to complications from bulbar-onset ALS, but still found a way to push his music out into the world, died on May 2. He was 49.

Essence Goldman, who was Dalton’s vocal coach before becoming his friend and musical collaborator, confirmed his death.

Essence, what a fine name.  Put in 'Names I Like' thread!
SC

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Jaci Hermstad, 25, "thriving horseback rider", diagnosed with a particularly aggressive form of ALS that could kill her ability to speak and breathe within a month:

https://www.dailymail.co.uk/health/article-7010927/Woman-25-diagnosed-ALS-eight-years-disease-killed-twin-sister-6-weeks.html

 

She asked for fast-track access to a new drug and Nancy Pelosi and Rep. Steve King worked together (!) to do that:

https://eu.desmoinesregister.com/story/opinion/columnists/rekha-basu/2019/05/28/steve-king-moves-bill-help-als-twin-jaci-hermstad-fda-compassionate-use/1258515001/

 

So maybe she can become the Laura Barry of 2020.

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Some Marieke Vervoort News from July 1,  2019:

 

Marieke Vervoort shares heartbreaking video: "I can't do it anymore"
https://nl.metrotime.be/2019/07/01/must-read/marieke-vervoort-deelt-hartverscheurende-video-ik-kan-niet-meer/

 

Google translation:

The former wheelchair athlete Marieke Vervoort has shared a gripping video in which she is in despair. Vervoort has been fighting for years against terrible pains caused by progressive tetraplegia, a paralyzing disease.

Marieke "Wielemie" Vervoort is going through hell. The 40-year-old former wheelchair athlete, who won a gold and silver medal at the Paralympic Games, suffers from progressive tetraplegia, a disease in which her arms and legs are paralyzed. As a result, she often lives in hellish pain, just like last weekend.

Vervoort shared a video in which she moans with pain and indicates that she cannot continue like this. “My pain is not fair. They can't do this to anyone. Since Saturday afternoon I have started to give up enormously. I can not handle it any longer. I can't even get a drink. I can't do anything. It doesn't work anymore. It must stop. When is everything finally okay? When will it finally stop? All promises, all beautiful words, until you ask the real truth, but then you get no answer, "it sounds.

Wielemie recently filmed a documentary about her life. It will premiere in New York in December. "I am really looking forward to that, but I just don't know if I will last that long," she said earlier in Dag Allemaal.

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45 minutes ago, Book said:

Some Marieke Vervoort News from July 1,  2019:

 

Marieke Vervoort shares heartbreaking video: "I can't do it anymore"
https://nl.metrotime.be/2019/07/01/must-read/marieke-vervoort-deelt-hartverscheurende-video-ik-kan-niet-meer/

 

Google translation:

The former wheelchair athlete Marieke Vervoort has shared a gripping video in which she is in despair. Vervoort has been fighting for years against terrible pains caused by progressive tetraplegia, a paralyzing disease.

Marieke "Wielemie" Vervoort is going through hell. The 40-year-old former wheelchair athlete, who won a gold and silver medal at the Paralympic Games, suffers from progressive tetraplegia, a disease in which her arms and legs are paralyzed. As a result, she often lives in hellish pain, just like last weekend.

Vervoort shared a video in which she moans with pain and indicates that she cannot continue like this. “My pain is not fair. They can't do this to anyone. Since Saturday afternoon I have started to give up enormously. I can not handle it any longer. I can't even get a drink. I can't do anything. It doesn't work anymore. It must stop. When is everything finally okay? When will it finally stop? All promises, all beautiful words, until you ask the real truth, but then you get no answer, "it sounds.

Wielemie recently filmed a documentary about her life. It will premiere in New York in December. "I am really looking forward to that, but I just don't know if I will last that long," she said earlier in Dag Allemaal.

 

After all this time suffering no way is she going out before her film premiere.

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2 hours ago, Book said:

 The 40-year-old former wheelchair athlete, who won a gold and silver medal at the Paralympic Games, suffers from progressive tetraplegia, a disease in which her arms and legs are paralyzed.

 

So why do people persist in posting about her in a thread about a completely different disease?

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18 minutes ago, Toast said:

 

So why do people persist in posting about her in a thread about a completely different disease?

 

A former member of the forum was insistent on posting about her in this thread. Sole reason why.

 

 

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42 minutes ago, msc said:

 

A former member of the forum was insistent on posting about her in this thread. Sole reason why.

 

 

Former member?

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3 hours ago, Toast said:

 

So why do people persist in posting about her in a thread about a completely different disease?

 

Yea why didn’t you post this is the Paralympian thread?

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25 minutes ago, Banana said:

Yea why didn’t you post this is the Paralympian thread?

 

Why doesn't a mod just merge all posts concerning her into a thread? I mean, she's been on Drop Forty for 2 years now.

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Rahul Desikan, American neuroscientist who researched the effects of ALS while he himself was suffering from it, dead at 41. DDP pick. He was also an ambient musician in his spare time:

 

 

 

It's not for me, tbh.

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51 minutes ago, Spade_Cooley said:

Rahul Desikan, American neuroscientist who researched the effects of ALS while he himself was suffering from it, dead at 41. DDP pick. He was also an ambient musician in his spare time:


I just wanted you to know how much I admired this.  It's the little things, the tiny efforts that always go unrewarded.  
 

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