Hi All,
My mum has been recently diagnosed with Parkinson’s. She is against taking the medication prescribed. I wanted to ask if anyone in this forum is living with Parkinson’s without taking meds for it? And if so how are you managing it?
Another thing that I wanted to ask is has anyone felt pain in the neck area that leads to head pressure so much so you have to lay down until it wears off?
Thank you all in advance
Good evening Bdep … I was diagnosed with Atypical Parkinson’s 15 months ago following a positive datscan. My neurologist said that this form of Parkinson’s does not react well with medication & that he was happy for me to take no medication. Initially I took nothing but my parkinson’s nurse said I should take my medication.
I tried 2 different drugs which did not work so I stopped taking them. I now take Sinemet which works for me.
I do have a pain in my neck & lower back for which I take Amitriptyline which works.
I have been told that my medication slows the progression of Parkinson’s. Whether it does I do not know.
I do feel better now I take medication so I am in favour of it.
If the symptoms of Parkinson’s do not bother her then just keep a check on things & see how it goes. If the symptoms get worse then she might be more keen to try something.
It is always an idea to do exercise, eat healthily & cut out fags & booze.
Best of luck
Steve2
Hi Bdep,
Yes, I held off for about 18 months before finally taking meds, and I did start off on the lowest dosage I could.
I do realize that the body builds a tolerance so you have to start increasing the dosage over time.
So yes, if she still feels she is ok, let her hold off on the for meds the time being.
(I have had seizures for twenty years or so, so I do know the procedure.)
As regards the pain in the neck and head pressure, it seems to me as if that is as a result of either a pinched nerve in her upper spine/ neck which radiates to her head, or of course it may be the beginnings of migraine.
I hope that helps?
Most people are hesitant to take the PD meds, some are on meds 10 to 20 years.
The equation is the quality of life the improvement the meds give if they work for you , very much a try it and see. Bear in mind you can come off the meds under supervision.
I had pain in my neck which I cured by buying a adjustable stand for my online devices which meant I could sit and look at my device with my head up 
