- Tue Aug 20, 2019 7:08 pm
I went through you-know-what to get a Handicap Permit for parking in Massachusetts. The neurologist was kind enough to send it back twice more. What can we do to make our rare condition known? I mean that question. I tell anyone who will listen about it. (See my comment above about trying to get a rollator, with the NP putting down "Orthostatic Hypotension". I'm an RN (with various national certifications) and I get embarrassed with the foibles of NPs.) Again, I feel that there is no money in it for the pharmaceutical companies.
I have asked on this website a few questions at various times and no on has responded. E.g., is anyone affected by overhead lighting in stores? There are certain retail stores that I have to avoid because when I enter them my tremors become twice as bad.
I have asked if anyone has tried swimming as therapy, and if so, did it help?
If we don't support each other as members of this support group, there is no point in having it.