I was diagnosed with PD 18 months ago and although my consultant recommended Levodopa, I have been too scared to go down that route. The movement in my right hand has got worse and I’m starting to struggle at work, I work full time in a demanding role. I know I need to take some form of action soon, but it would be nice to hear what has worked for other people.
Kindest regards.
Hi JSB,
This is a great question. Before our Forum community adds their responses, we saw this was your first post and wanted to make sure we welcomed you. Welcome! Please have a look around. There’s good advice and helpful shared experiences abounding, along with art, poetry, music, and even laughs. Also we wanted to make sure you’re aware of our website, where you can find loads of research, instruction, and links to just about everything else. Here is a starting point with a bit of info about Levodopa. Also know that you can call us directly for a private one-on-one chat with a trained associate at 0808 800 0303.
Welcome, and best wishes,
Jason
Moderation Team
Hi JSB, it is not a case of what works for anyone else it is what works for you yourself. The problems is that we are all different in our Parkinson, and no two people are alike. There is so many different variations on how Parkinsons effects us. The Parkinsons drugs do not suit everyone, they suit some and not others. When I was diagnosed I did not actually believe what the GP had told me, and I put off taking any drugs for the first twelve months, by the end of the twelve months I was asking for medication because I really needed it!
I started on Ropinirole XL slow release , I was fine on these, but again they do not work on everyone due to side effects, as with most of the parkinsons meds. but I was ok with these.
Now eleven years later I m on Ropinirole 18mg, Sinimet 3 times a day, and half Sinimet at night along with Rasagaline.
Sheila ( sheffy)
Hi jsb i take sinemet 25/100 3 times a day this doesn’t really help me but i have it in my head it helps in other ways but my symptoms haven’t really changed ive been diagnosed for 13months i suppose ime lucky than some like people say parkinsons is different for everyone
Hi Sheffy and Calv,
Thank you for your replies, it is good to hear other people’s experiences. I have tried diet, exercise, Tai Chi and massage, while these have all helped, particularly in easing the pain, I now feel I need additional help. I have decided to try the medication.
Best wishes to you both.
In addition to Carbidopa/Levodopa, I take Amantadine for tremor in my left hand, and Ambroxol (1st link below) to me keep my brain clear of PD brain fog (& for me slow my progression - started 3 years after my diagnosis about a year ago), as well as a wide variety of supplements (if you want to know more about these, just let me know). As for Ropinirole for movement, I discontinued that after about 2 years even though it was working, as it had some very bad side effects for me (2nd link below - like you I had a very demanding role), and instead depend on Levodopa & Ambroxol + exercise to do the heavy lifting for me on movement. Speaking of exercise, have you tried a boxing bag? a major help for many with PD.
https://jamanetwork.com/journals/jamaneurology/fullarticle/2758317
https://www.ehealthme.com/ds/ropinirole-hydrochloride/hallucinations/
Sheffy that is a great first line. So many seem to go round and round the houses searching for the definitive way forward when in truth there isn’t one. Seek advice, information as you will but ultimately I think you have to trust your instincts, bite the bullet and do what feels right for you. Just because one med doesn’t suit doesn’t mean none will. It’s no different really to some getting benefit from tai chi others running. Horses for courses but if you don’t have a go, how do you know. Great post.