I am currently reading “ A Soft Voice in a Noisy World “ by Karl Robb. He recounts a story where he was asked to prove he had Parkinson’s. Has anyone else ever been asked to prove they had Parkinson’s, and if so what was your “proof “?
I one ever asked me for proof. I didn’t even want to acknowledge it myself. 12 years later there isn’t any way to deny it.
I would deny it myself for many many years. In fact, People would tell me that’s what I had and I was like there’s no way I’m not old enough joke was on me.
If I was on my medication, this will be very difficult for me to prove.
I mean, seriously. Whip out a print of your DaTScan. Or show your list of meds. Or show your neurologist/MDS on speed dial. Or show the two horn buds from DBS. I can’t imagine anyone asking that question. Other than when you apply for SSDI.
Is this a useful read? I find it hard when people say ‘you look fine’ even though this disease is ever present in my life
I have had three Doctors tell me they think I was diagnosed wrong. One was an MDS in milwaukee wisconsin when I was looking for a MDS and he thought 2nd opinion. He told me I smiled too much, was too fat and too young to have PD. He also wanted me to redo all the tests and lab work I did before. I didnt see him again.
The other two were wound care/ER doctors in Appleton, Wisconsin. One asked what did I do to get parkinsonism? I said what do you mean do? He said drugs or whatever? I said none, I guess God has a messed up sense of humor. He was going to start saying something else but his nurse redirected him. The other one would ask me to do the thumb and finger tap thing everytime I saw him and ask what I thought I had. And put in his notes that patient claims she has Parkinson’s. But my PCP says that is normal for doctor to phrase it that way and he wasnt saying anything by it.