i am stuck
Age 50
Symptoms since 2020
Diagnosed 2022
Started on C/L 100/25x3
Worked well for 6 months
Started mild dyskinesia after 9 months, now it is wearing off fast,Ii get severe fatigue so changed it to half pill every 3 hours, dyskinesia is less but fatigue, wearing off dyspnea is killing me. I started amantadine twice a day month ago but no change.
appreciate your help
Get reevaluated by a different neurologist. A significant number of people with a parkinson's diagnosis get a different dx later in the neurodegenerative process. There's a lot of overlap in symptoms.
I spent the first several years after diagnosis crashing and sleeping on my couch. I went on a pretty severe diet for a year that eliminated gluten, sugar and dairy (Dr Wahl’s diet). Everything improved for a while particularly the crashing/sleeping on my couch all day. The sleeping during the day caused night time sleeping issues.
Anyway, I lost too much weight on the severe diet and then had to adjust for this. I believe the flush I got from the diet was good. I believe the change in eating habits have been life changing. I now believe my sugar intake was causing a lot of my crashing during the day. I still have mostly no sugar in my diet unless it comes from my 10 vegetables, I eat at dinner.
I still intermittent fast to lessen my protein interference with my PD meds. I eat some gluten to stop the loss of weight but I still eat very little dairy. I sleep at night, now. I have found I need a late night dose of my 200/50 mg extended release.
Honestly, my life has improved in a lot of ways. I am 10 years past diagnosis. I have found I had to do all this trial and error on my own with no help from my neurologist except he prescribes the drugs. The other huge thing I now know is that I need to drink a lot water/gatorade during the day and that I thrive with vitamin D, preferably real sunshine. I have really tried to listen to my body. We are all so unique.I hope you find relief.
Thanks a lot
Have you tried walking as fast as you can for a few minutes?
If you have and you have got up to one hour every second day, then you would not have any PD Symptoms. I was diagnosed in 1992 and walked every second day for up to one hour and have had no PD symptoms since 1996
Amantadine reduces the Diskinsia , maybe what you need is a Agonist to lengthen the effect of the CD/LD . see a Neurologist. Or you could drag your old , tired aching body off the couch and go fast walking like John does.
B1 trial
Shortness of breath
Fatigue
