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I've been struggling with longer off time for nearly three years. Healthcare team have steadfastly denied my request for larger or more frequent L-dopa, saying I was at the max they could give (800 mg per day).
For three years - then yesterday at an appointment, with the same specialist I have made this request to multiple times, she suggested putting it up to 1200mg (200mg every four hours) as if it was the most normal thing in the world.
Seething!
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Members rallied around a fellow community member's frustration after their specialist suddenly increased their L-dopa dosage to 1200mg after... Read more
Michael 848, There is something about your responses that seem so calming when I read them. I am sorry that you are going through so much with your Parkinson’s disease. I am one of those people who have not been on this journey long (4 years) and the medication still controls most of the symptoms. Your strength gives me strength to continue to battle and to stay positive ✨️
At first I needed higher & higher doses. However, I did notice that others with PD eventually needed smaller doses. After 16 years of PD, I am at the point now that I am gradually reducing my doses. It feels good.
We should not take the time to be annoyed just enjoy our wins and look forward to the next.
I envy you your faith. If God exists he has decided I don't need to believe in him yet; I've yet to have my epiphany on the road to Damascus (well, in my case, road to Derby).
@A MyParkinsonsTeam Member both of which give me the creeps unfortunately. Wires in the brain is bad enough, but having to have a battery implanted under the skin...*shudders*
Same with the pump. It's basically a permanently open wound, with a tube going through it. Apart from, again, *shudders*, I'd be terrified of catching it on something and ripping the whole thing out.
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