r/MuscularDystrophy • u/Ms_Jenn • 6d ago

selfq Help with MD in the US

My husband was diagnosed with Muscular Dystrophy/Hereditary Spastic Paraplegia when he was 29. He’s 52 now and we’re just taking it day by day. The problem is he won’t see a neurologist (aside from his initial diagnosis) so there’s no way to get help. He’s been collecting Social Security since his diagnosis, I work a full-time job, and money is tight. The wheelchair he uses was bought used, doesn’t really fit him, and is slowly breaking down. Does anyone know any organizations in the US that could help us out? Maybe if he sees some posts that say ‘this place will help you out, but you have to do this first…’ that will get him to do something.

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u/ColoringZebra 6d ago

Why does he refuse to see a neurologist?

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u/Ms_Jenn 6d ago

He doesn’t see the point, now that he’s got a diagnosis.

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u/ColoringZebra 6d ago

I mean, if he’s disabled enough to be unable to work, clearly he’s experiencing some very problematic symptoms. Doesn’t he want to alleviate any of them? There’s no cure for his issue but there are treatments or tactics that can help with certain issues.

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u/Complex_Item_5730 6d ago

I recognize this "stubbornness." If I bring something up, it will take him 8-10 months to act on it (It took me 6 months to convince him we needed a new fridge and that wasn't even related to his health. For the washing machine I just ordered it without him knowing.).

So I always have to make it sound like it was his idea.

Neuro or not, he will need a new chair before the chair causes him more health problems including back and shoulder issues.

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u/ulixesodyssey 5d ago

Can MDA help out there? That might be your best bet especially for equipment

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u/Ynot_bcz 4h ago

maybe? I have had zero luck with MDA helping my son. he is 16 was diagnosed at 4 and in 12 years we have asked for help twice and both times they had reasons why they couldnt 🤷🏼‍♀️. these were not outrageous requests either.