Hi everyone, I’ve been recently diagnosed with young onset PD. Although I was devastated with the diagnosis, I’ve come to terms with it and now trying to take everyday as it comes. However, my two biggest worries are getting the right drugs and dosage and dyskinesia. My preference is to keep the drugs to the lowest dosage I can, and compliment it with as much physical therapy as possible. it would be good to hear what others have done.
Hi JAM, and welcome to the forums. I think you’ll be pleased at the quality of information and shared life experiences our community can provide. Please feel welcome to take advantage of our website at Parkinsons.org.UK. Here is a link to some info on dyskinesia: https://medium.com/parkinsons-uk/tagged/dyskinesia and you can use the search bar to find loads of answers to questions from people with Parkinson’s and their families. And you can find even more answers and advice here, thanks to our lovely forum contributors.
Best wishes,
Jason
Moderation Team
Hi JAM
I was 53 when diagnosed last year. I am along the same thinking as you in that I want to keep meds low as possible. I first took Madopar when first diagnosed but have switched to Sinemet. I don’t really know what works yet in terms of PD symptoms, but Madopar made my muscles stiff. I have joined the local gym and bought a bike. I don’t try and brake any records, but try and get 30 minutes a day doing something. I also try and push myself to be active in the house too so that I am not sitting around too much (a Fitbit is good for activity monitoring).
Hi jam23
Can only speak from my experience but was dx 2 days before my 42nd birthday (nice👎🏻)
Was given too much meds by the neurologist to start with and ended up with some rubbish side effects . I did a bit of research and found out my neurologist specialised in epilepsy. So I found one who specialised in PD at the same hospital , who then got me on a better dosage
I am 50 now and still not using the dosage I was initially given. (Still working bty)
The main thing I found was to try to relax and let the meds work, which I know is hard but it does get better.
Good luck
L
your assumption that it is best to keep the dosage to the lowest needed and combine that with exercise is a conservative approach that my neurologist has used with me since I started with him about 4 years ago - a solid approach in my opinion.
may I ask what is being recommended to you to start?
Hi Everyone,
Thanks for all the advice.
I’m on 350mcg of Pramipexole 3 times a day. I’ve noticed it is making me tired and feel like it’s negatively impacting my cognitive function. I actually feel better off it and don’t really see the difference in my motor functions. Exercise easy my symptoms more than the meds. However, I’ve noticed my symptoms are worsening and getting myoclonus symptoms when I’m going to sleep.
I’m not sure I’m in the right dose or the right meds.
I’m looking at alternatives to meds such as duet, supplement and exercise. My biggest fear are the side effects such as dyskinesia and cognitive impairment as I want continue to work.
Has anyone got any experience in alternative to meds?
Cheers
Jam
from a cognitive perspective, or to say it differently to keep the brain fog at bay, I use Ambroxol, 300 mg twice daily (sometimes 900 mg), which absolutely works for me, have been on it for a year now, you can find other posts on this subject here including research links if you search on it.