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I’m 8 years in. Started on 300mg a day, now at 800mg. Dyskinesia more of a problem now.

Just seen someone’s post that they are on 2175mg daily…wow! My doctors have all refused to offer a number for what the daily maximum should be, but I have seen 800 mentioned in several places. Seeing such a high figure gives me hope.

As to when to start…the REAL question that I asked was “What else could happen to me in the next ten years?”. At 48 when I was diagnosed, I could already feel the impact of the symptoms…the decision therefore was…do I “put up with” a lower quality of life now, hoping for a better one later, or have the best life I have now, and “put up with” a lower quality of life later?

I realised that between “now” and “later” there were quite a few pit traps that would make L-Dopa’s effect almost irrelevant. Arthritis. Dementia. Heart disease. Prostate disease. Cancer. And that’s just the “old guy” disease options…I could be hit by a bus or otherwise injured seriously injured.

So I chose the early start. Even though symptom management now I’m 56 is challenging, I still believe I made the right decision. For me. Your decision is personal, and whilst it is wise to inform your decision making process by asking others for their opinion, no one else can (or, I suspect, ever would) tell you your decision is wrong.

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I started on Azilect alone in 2015. My neurologist told me about L-dopa and that some preferred to wait until the last minute before taking it.

I was 48, and already feeling the rigidity. I decided to take it early, because you never know what else might happen to you and I didn’t want to spend my life “getting by” without L-dopa, only for fate to deny me the “better future” I’d promised myself.

Most info says that L-dopa lasts 5-10 years. I’m 8 years in now and just about to hit the suggested 800mg per day maximum mark (that’s measured in just L-dopa amount, the carbidopa doesn’t “count”. It’s also a figure that it’s been almost impossible to get any of my medical professionals to admit to.)

I started on three pills a day (300mg L-dopa). I’m now at 5 doses, and playing with the mix of controlled and standard release for best effect. Standard release seems to give me more dyskinesia, and I definitely need the controlled release at bedtime.

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Dystopia. Whilst it sounds like the latest album from “Muse”, it’s a lot less fun.

I get more rigidity than tremor, particularly in my right calf muscle and left foot. I wish I’d never seen the DeNiro/Williams movie “Awakenings”; whilst it’s a beautiful and heartwrenching movie, it’s also a true story and therefore I fear somewhat prophetic.

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My Parkinsons nurse has just made it part of my drugs. Its supposed to make your night time dose of L-dopa be more effective (longer lasting).

I only took the first tablet of it last night. It didn’t appear to work at all so I had a very rough night. I actually got 111 to send an ambulance out to me. They couldn’t find anything wrong from their resting, but I have other issues which could be the cause.

I’ll let you know how I get on in a week or so.