Diagnosed 12 months ago

Hello and good morning :grin:
Im Ant, 43 and live in Cheshire.
I was diagnosed in March last year.My symptoms were walking with a limp, slow movement on left side, no arm swing and my left arm would stick at a right angle and pull into my belly. Also loss of balance and loss of smell. Confirmed with a datscan.
Started on co careldopa, low dose then it was increased to 25/100, 3x a day.
Initially it helped a bit. I didn’t really feel it " kicking in " it just helped. Fast forward to now and the co careldopa isn’t really doing a great deal. When im “on” it helps with movement in an erratic way, jerky, dyskinesia type thing. That lasts exactly 2 hours then i stiffen up and can’t keep my balance.During this time Ive noticed i seem to walk with my knees bent and which ever way my weight leans will be the way i stumble.
I half think my dose is too high. I did try my original, starting dose but after a couple of days I couldn’t function so reverted back.
I was offered the 24hr patches, 4mg, but the side effects sounded terrible so I politely declined.
Apologies if this sounds like a jumbled rant. Im typing on my phone.
I thought this early on id have a better quality of life with medication but they just seem to make most of my symptoms worse. Plus im only getting 2 hours from each dose, from taking it to my symptoms returning. Literally, you can set your watch by it.Again, sorry for the essay. Any advice would be appreciated

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Hi Ant,
We understand getting medication right can be a challenge. Please don’t hesitate to reach out to our helpline team, as they have a wealth of resources and can likely point you in the right direction. Our number is 0808 800 0303.
Best wishes,
Jason
Moderation Team

Hi MAB54, or Ant your symptoms are exactly the same as mine except on the opposite side of the body. I am 61 so a good deal older but everything you say resonates with me.
I quite often think my dose I’m on is inappropriate and that I would be better on nothing but that is not the case. Balance is an issue but what I find best is to exercise regularly throughout the day and not to rest for too long and this keeps me in a good frame of mind. Yes after I rest for a while I find my balance is terrible and it all seems to go wrong but then at least I have got through the day and I am ready to sleep. The next day I just start again.
I guess what I’m trying to say is that I would rather have a totally off period having been ok for most of the time than worrying about dosages etc in the belief that the drugs should keep pd at bay all the time. Concentrate on exercise and the good hours and don’t worry about having ‘off’ spells as they happen to all of us.
Sorry I haven’t made myself very clear but all the best and keep positive

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