How quick can things move on?

April 2020 aged 48 I was informally diagnosed by a neurologist that worked at my Drs 1 day a week. Sept 2020 I was formally diagnosed at the hospital.

I was told that it’s slow to progress and shouldn’t need medication for long time. End of 2020 I was put on Sinemet.

18 months later I am now on

Sinemet+ 25/100mg (1 x 4 a day)

Co Careldopa 25/100mg (1 a day)

Entacapone 200mg (1 x 4 a day)

Safinamide 100mg (1 a day)

I have had falls, some quite bad ones. I can hardly lift my right leg, I move slow and take small steps. I struggle to bend to pick up stuff up low down and if I manage to kneel down it’s a task and half to get up.

This is my first week fully on entacapone so hopefully they are going to help with my movement.

Do I sound about normal for time frame? I feel like it’s all happening a bit quick… I am a positive person most the time and it’s not all doom and gloom I have okay days and even on less good days I will still attempt to do stuff.

And I still do work, although I’m having lots of time off nowadays, I went down to 3 days and I’m just about to ask to go down to 2. If I manage a days work I am then out of action for at least the next day.

Hi Strumjough,

Have you been able to tell your consultant or Parkinsons nurse about your symptoms? I am completely new to all this my husband was diagnosed in Nov 21. However he was out straight on to ropinrole (not sure if the spelling is correct) no word of a lie his tremor was so much worse within an hour of taking his first dose. As time went on it got worse each day. He was taken off that and out into patches. Same thing happened again so about to try another drug now. It makes me wonder if some of the drugs can make symptoms worse so might be worth having a chat with your parkinsons nurse if you can. Like I said I am no expert at all so just my take on it.

Hello strumjough
Unfortunately medication and Parkinson’s is a bit of a minefield and it’s a question of finding what suits which can take some time. As an example lizzieg has posted a reply describing what happened when her husband was put on ropinirole and clearly it didn’t suit him. I on the other hand went on to ropinirole when diagnosed and have now been on it for 12 years with no major problems. My advice is don’t put up with something that seems to be making your symptoms worse or creating new ones, get it checked out. Just a point to mention it’s not always the drug that’s wrong but the dose or even the brand. It is true that Parkinson’s is slow moving in most people. Good luck hope you get it sorted quickly.
Best wishes

Madopar was great for me until it wasnt - tried everything else & then had Dbs last september - good luck :rainbow:

Hi @strumjough

I don’t know what “normal” is for PD, I don’t think there is one. But I thought I would post my experience as we are a similar age and it might help you. I am male.

Diagnosed in 2019 at age 49. Hardly noticeable symptoms at time of diagnosis. I am now on 10mg Requip which is a dopamine agonist (don’t aske me to explain that). My symptoms have increased, I have an occasional tremor, I shuffle when walking unless I concentrate, my handwriting is dreadful, swallowing problems, excess saliva, bouts of anxiety and some short term memory issues.

I have never fallen and physically I am reasonably fit for my age. It has been drummed into me since day 1 to do loads of exercise and I do so 2-3 times a week at the moment. I am planning to up that to every day like I used to until I got out of the habit last summer.

Hope you are having a better time now.

Hello Pcyc,
I’m diagnosed 4 years ago, now I’m 43. I also on Requip 12 mg for the last two weeks. Before that I was on 8 mg. So since I take 12 mg, I noticed that I have pain in my arms and neck. I don’t know is it progression or side effects . My biggest problem is tremor in my hands, not so noticable, but when I’m nervous its terrible. And I’m nervous for any reason and situation when people can notice my tremor. So now i take 0,5 diazepam pills every morning before go to work. This is very helpful for me, but only if everything calm and “normal” on the job. I started to avoid some people and situations…I think its called “social anxiety”
I hope I can talk with someone here, as I see, forums are not so frekvent. And I desperatly need some support, In my country there are not manny people with YOPD.
P.S. Sorry for my not so great english