I was diagnosed with PD in 2018 at the age of 52 and started on Sinemet 25/100mg x3 a day. This has recently been increased to x4 a day due to a reduction in ‘ON’ time.
I have noticed that whilst my overall PD symptoms have continued to get worse (or new symptoms developed) over the course of the last 5 years I have also noticed that some symptoms that I had in the early years have improved! Has anyone else experienced this?
For example, during the first couple of years I used to occasionally drool or trip over my words or have very faint speech. I don’t appear to suffer with these symptoms these days. Has a different part of my brain trained itself to control these functions?
Similarly I used to try wiggling the toes on my left foot. If the toes moved I knew that I was ‘ON’ and if they didn’t move I was ‘OFF’. These days I find that I can still wiggle my toes even when switched ‘OFF’.
Don’t get me wrong, I’d love to go back to only 2 years in as since then I’ve become less stable on my feet, started to shuffle, developed a tremor, etc. etc. However, I’m eager to understand why some symptoms have improved.
Any thoughts folks? Have others experienced anything similar?
Thanks.
Hello MarkP4 … I am 69. I had a positive Datscan about 8 months ago. I was diagnosed with Atypical Parkinson’s. I also have Peripheral Neuropathy & I was in hospital for 48 hours three weeks ago with New atrial Fibrillation. I also have Arthritis. I do feel I have had Parkinson’s symptoms for some time.
I have briefly been on Madopar & Ropinirole. My Neurologist has left the NHS & my Parkinson’s nurse has just put me on Sinemet, starting at 1 pill a day for a week rising to 6 pills a day. My Neurologist thought medication would be a waist of time & my Parkinson’s nurse has the opposite opinion.
My Parkinson’s symptoms are fairly mild other than my mobility. I have reasonable days & very bad days when I can’t walk at all. My right ankle will for no reason be unable to take any weight at all, then a few minutes later is 100% ok. I have had this happen twice today. My leg muscles are tight all the time. I have a very slight tremor which makes eating take longer & I can’t carry plates with food on or cups of tea or coffee. My legs & body feels fatigued all the time.
It will be interesting to see if Sinemet helps my mobility. I don’t drool & don’t slur my words or have faint speech & I can wiggle my toes.
Hello MarkP4
Sorry for slow reply, I am just catching up with some posts. Your experience is interesting and Parkinson’s is such a contrary condition and the brain such an incredible part of the body that it wouldn’t surprise me if your brain had trained itself - it is possible to develop new pathways in some cases, after a stroke for example, so why not accept the possibility that your brain has retrained itself, but I have no idea if there is any truth in that. I did wonder though if you have started doing more exercise or changed what you routinely did because physical activity can bring all sorts of unexpected benefits. It would be nice to have an explanation for the improvement in your symptoms, but in the absence of this, just enjoy this change for the better which is quite rare in Parkinson’s.
Tot
