(7 years ago) My husband noticed my shaking right hand at the end of the day, asked how long it had been happening. I said a couple years, but only when I used my hands a lot during that particular day. Being a retired GP physician, he watched me for a week without me knowing and after a week said we should go see a neurologist since he noticed the shake in my right hand, less swinging of my right arm while walking, a bit of a gait issue on my right side, and my face having a mask-like appearance. Two months later I had completed a sleep study, where they found I had REM sleep disorder and I had a DatScan… X -rays of my brain after being injected with some radio active stuff that is supposed to light up the part of my brain that controls my movement. There it was-my scan showed deterioration of mostly the left side of that area. I was 54 years old at the time. We started Azlect/Regasiline to slow the progress. I feel like I had a honeymoon period for 6 years when the symptoms were mild and I didn’t hide it from anyone, but things changed a year ago with increased tremors…now on both sides/arms and now legs. Also my handwriting turned into chicken scratch, and I began having to search for words while telling a story. I went through the ‘Big & Loud’ physical therapy, but eventually would quit the excercises at home over time. I even started Rock Steady Boxing which was great! A year ago So with all these issues of deteriorating my mobility, mood, and balance, I worried about the stress it was putting on my marriage. I have a wonderful husband, but I can’t help but feel guilty for putting us through this. I have increasingly become unbalanced and lately have begun to fall. He is older (75 yo) and these burdens have contributed to my worsening depression and I have been hospitalized 4x in the past 6 years now for depression and suicidal ideations. I started Sinamet(Carbadova/
Levodopa a little over a year ago, first was 5x a day which was every 3&half hours, and I got my handwriting back, but a few weeks ago I switched to RyTary slow release Rx and spread it out to 4x over 24 hours (once every 6 hours so I set my alarm for 1am, 7am,1pm,7pm.). I also take meds for depression, anxiety and still take the Azelict/Resagaline daily. I now have digestive issues with cramping, constipation lasting 6-7 days followed by severe Diarrhea when I take a laxative, leading to dehydration. Then it starts over again… It is called GastroParesis and I was miserable! The cramping pain turns out to be food not digesting in my stomach (not emptying and still being 59% full 4 hours after eating). I also had C.Diff in February, so I have been working on getting the right gut bacteria in my large intestine and have started the FodMap diet which should help with the GastroParesis. I was just discharged from a week in a psych unit, after more suicidal ideations.
I do not want Parkinson’s, but writing this has helped clarify my situation by getting it all written down. I included a image of my DatScan and an image of a healthy Scan.
Good Luck, pam