 |
 |
Hilary - Janet was "right on" in her advice, as usual. We followed the same advice (kindly given to us by several "someones" on the list) about going in without meds when Dick had to go for an SSI disability review. If not for that advice, I think Dick would have gone in fully medicated and then tried in vain to explain how debilitated he is when he's "off." The doctor we saw was apparently a rehab specialist - probably an orthopedist - but fortunately was reasonably knowledgeable about PD. The questions the SSDI people ask - to complete a form meant to apply to any conceivable disability - usually have nothing whatsoever to do with PD. They're meant to determine when your "back problem" or whatever is going to be better so you can go back to work! They're interested in whether you can bend or stoop or lift weights. That means you have to be prepared to tell the doctor exactly what you can't do, what you can do only with help, what you can do but with difficulty, or slowly, etc. He probably won't ask, so you'll have to work it in. I can say that if we'd seen only the new young doctor, who saw us first before the older doc came in, she may very well have assumed Dick was perfectly capable of working. Thank goodness for the older doc, who not only knew what to look for, but made a point of writing down the PD-related difficulties, even though none of them were asked about on the questionnaire. He ended up apologizing to us for "having to go through this," and promising that he'd do his best to see that we were never bothered again! He even had plenty of unkind words to say about those SSDI "bureaucrats." At one point in the interview when we'd had to respond "yes" to a whole series of questions about can he do this, can he do that, I commented, "Yes, he can do all those things, in a fashion - it would be nice if he could just put them all together!" The doc loved that comment, and repeated it several times, explaining to the new young doc that that was one of the problems with PD - "they can't put them all together." I hope this rather lengthy story helps. I thought it may have helped, too, that I asked to accompany Dick into the exam, explaining that it was sometimes hard to understand him, and there were times he might not understand the question. I knew Dick would have been so intimidated by the experience he wouldn't have been able to say anything on his own behalf, and probably would have experienced the "mental freezing" he gets when stressed sometimes. In addition, my asking to accompany him helped paint a picture of someone who can't function without a caretaker in constant attendance - not a bad idea. I don't know if you have someone who can accompany you as your "caretaker," but it's something to consider. Best of luck. Do let us know how it goes. Warmly, Margie cg for Dick, 54/17