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Type: Posts; User: Tokahfang

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    Can I suggest Dasher for they typing? It is fast...

    Can I suggest Dasher for they typing? It is fast and easy for prose, and much better than typing one handed certainly. I find it harder to use for chat rooms and the like, but for real writing, it's...
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    Sorry, I should have said OTHER specialists. He's...

    Sorry, I should have said OTHER specialists. He's a specialist in neurology, but he isn't in charge of treating breathing problems, bowel, etc even though they are neurological in origin. He tells me...
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    I wait it out for six weeks. If a new symptom...

    I wait it out for six weeks. If a new symptom doesn't get manageable by then, I go to my neuro and see if there's something we can do. Usually the answer is no, but it is so exciting when it is a...
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    Oli mentioned not being diagnosed. I ended up in...

    Oli mentioned not being diagnosed. I ended up in a wheelchair 4 years before my diagnosis myself, it is definetely an awkward transition! And no one is willing to help without a diagnosis.

    I say...
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    Think of it this way... from the time you took...

    Think of it this way... from the time you took your first steps as a baby until the first time your toddler self ran full speed down a hallway without falling probably took a year or so. You had to...
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    How long have you been at it? I would say it took...

    How long have you been at it? I would say it took six months between getting my first wheelchair and being able to do a full normal day in an inaccessible world with panache.

    Since you're on this...
  7. I have a progressive neuro disease, so I spent...

    I have a progressive neuro disease, so I spent years as a para, and am now a quad.

    I really loved my manual chair. I kept mine for a year and a half after I could use it in vague hopes of some...
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    Heh, the doctor doing my lumbar puncture said it...

    Heh, the doctor doing my lumbar puncture said it was like going through a brick wall, spastic as my back gets. It did hurt, but it ruled out PPMS, so I think it was worth it. I didn't get any bad...
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    You should be checked out for gastroparesis. I...

    You should be checked out for gastroparesis. I was on liquid food mostly, as I have moderate dyspagia, and eventually I couldn't keep my smoothies and purees down. I had a gastric emptying test, and...
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    I am a spastic quadriplegic (hereditary) and I...

    I am a spastic quadriplegic (hereditary) and I haven't had that result either. I wanted to make sure though - you've been checked for Lyme's, right? It causes a gamut of neurological damage, and...
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    You guys aren't alone. Especially after that...

    You guys aren't alone. Especially after that first decade, I would have done almost anything to know what was wrong. I stared at MRI machines and dared them to show me a brain tumor.

    It took me 14...
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    Poll: PLS or HSP/Q... the jury's still out on which! I...

    PLS or HSP/Q... the jury's still out on which! I have the progresion of a PLSer, but the extra HSP fun with bowels and such.
  13. TiLite ZR 16"x16", all I want is shipping

    It's taken.
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    http://helyn.com/ That is where I got mine. It...

    http://helyn.com/

    That is where I got mine. It was as expensive as you mentioned, $225 total, I think, but completely customized! It wasn't some standard off the shelf, she sculpted US, as we...
  15. Wow, that's a hard question! I am losing my...

    Wow, that's a hard question!

    I am losing my sight to hereditary optic atrophy, and that is tough to take. But I'm not sure it would be so hard if I wasn't also this far along into upper motor...
  16. On the HSP/PLS support group I'm part of, we run...

    On the HSP/PLS support group I'm part of, we run about 50/50. Half of us get high amounts of pain from spasticity, and the others get none. There doesn't seem to be a lot of middle ground.

    Plus,...
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    I can't argue with you there! Even proving...

    I can't argue with you there! Even proving something happened recently (like a crime was committed by a defendant) is very difficult. You can be a christian, believe in Jesus in a rational context,...
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    I've got one, but my finger bounces constantly...

    I've got one, but my finger bounces constantly trying to use it (combination of ataxia and spasticity). My condition is a degenerative one, so you can get to points where less strength and ability is...
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    I don't type easily anymore, and am having...

    I don't type easily anymore, and am having trouble using a trackball in mid-quad clawing. It'll get better once my hands get through this progression. I'm sorry it took so long.

    I don't decide...
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    If Jesus didn't really live, say the things...

    If Jesus didn't really live, say the things attributed to him, and raise from the dead, then christianity is just a powerless philosophy. In the first century, the apostles didn't tell people to take...
  21. It absolutely does!

    It absolutely does!
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    Poll: Giving up my minimalist Tilite for good was a...

    Giving up my minimalist Tilite for good was a bitter feeling. Powerchairs just aren't the same.
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    Poll: I am 29. It started in my legs in my teens and...

    I am 29. It started in my legs in my teens and stayed there until 4 years ago, when I started having hand trouble. In the last year it has rapidly eaten through my trunk, back, neck, swallow, and...
  24. I am also in the HSQ/PLS category. In my case, I...

    I am also in the HSQ/PLS category. In my case, I have a mutation of SPG7, but not the one that causes HSP. Functionally, I am impaired from my feet up to my neck, including dysphagia and dysarthria.
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    The motor neuron clinic at Columbia Presbyterian...

    The motor neuron clinic at Columbia Presbyterian is supposed to be good for HSP. My doctor is a subspecialist in neuromuscular and still wants me to consult with them. They are trying to decide if I...
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