[Rant ON]

Addicted to levidopa. Wow it seems that bullshit message is prevalent on both sides of the pond. They may as well tell you you're addicted to oxygen.

But don't get angry about it, because that's a symptom of addiction. It's also a symptom of sitting opposite some poefaced total nobjockey who I know is denying me a medicine that could help.

I wish there was some sort of simulator where I could download my symptoms, then upload them to every health professional who deals with Parkinson's. Feel like that for two hours out of every six, every day for a week then come back and tell me it's an addiction you flocking emotionless procks. I've known wasps with more empathy.

And if we are addicted...so chuffing what? Let us die drugged off our tits in a happy pink cloud of LDopa induced ecstasy. Oh, if only! Because the truth is all the ldopa does for most of us is make us feel a little less terrible.

And I STILL think the restriction of it is based ass-covering by said health professionals. They'll happily prescribe you any number if drugs that will kill you, or make you fulfill that order for a Chop Suey Side (pick the bones out of that one, AI), but should you get a bit risky down the casino, on eBay, or show your bum to the wrong person...well they're terrified - not of you, but if your lawyers.

Let's face it, a lot of us are old and so it's hard for a lawyer to prove with certainty what ch prescription pushed us over the age..."Oh Nigel is dead, but he was quite old".

But if granny takes the up with a 25 year old Latin stud, spends all her pension on bingo and starts her own business selling erotic toys ...well, that is not "normal" old person behaviour and the lawyers will lap it up...so the doctors don't prescribe.

Oh yeah...another feature of the addiction is "believing ideas or concepts that are untrue"...so they've really just taken a list of valid concerns that people may have when a life improving drug is restricted, and labelled them "symptoms of addiction".

If bullshit was medicine, the health service could keep us all alive forever.

[Rant OFF]

@A MyParkinsonsTeam Member - one reason Jim often waits to take the last pill is to make sure it lasts. Otherwise, he is fine with the time between doses. He sleeps 7-8 hours on average aside from bathroom visits. However, he doesn't have a bad tremor or dystonia. His issues are mostly gait related and overall slowness. He has pain, but it isn't clear how much of that is PD and how much other causes like compressed discs and arthritis. Advil and gabapentin help that overnight.

Mentioned Users

A MyParki...

I’ve not been diagnosed with PD yet. I see a new Neurologist on TUESDAY. My biggest symptom is stiffness and my body feels like I can’t go another step. Does this sound like the symptoms y’all have?

My doctor just put me on 1 50/200 CR 3 times a day, 8 hours apart.
1 25/100 immediate release 6 times a day, 3 hours apart.
I start on Monday.

Almost exactly my situation @A MyParkinsonsTeam Member. I've had to compress my daytime periods though, as I can't go six hours any more, so my times are 8am, 1pm, 6pm and 11pm.

Yes that means I am NINE hours at night , so I take the long release for that, rather than my 50:50 mix.

This is because the ass-hat professionals are working to maximum dosage level of 800mg that was suggested back in the 70s when C/L was still "new".

Also because same ass-hat professionals do NOT make allowances for the 30% reduction in bioavailability of the slow release version, and seem to ridicule me when I say the slow release version has always worked better for me (they seem to have a real hard-on for the normal release version, but if I take two of those, I get the jitters. A cousin of mine had her DNA tested and found she had a gene that made her blood/brain barrier more porous than normal. I think I have this too, so the fast release version goes into my brain too quick and "swamps" it...but also gets used up far quicker than the slow release...and since I am experiencing shortening on-time I would very much like to go to all slow release.

Have I told them (my specialist , my Parkinson's Nursing team) all this? Yes, several times.

Do they listen? Do they flock.

And you make a great point about them not being able to comprehend just how much an "off" period represents a Very Bad Thing. Of course they rarely see one, because we have to book our appointments to coincide with our ON time, or we can't actually get to the mummyfollicking appointment intent in the first place!

Aaaarghh! You know sometimes I think the real cause of my rigid muscles, cramp and dystonia is just my barely-contained titanic rage at the idiots I have to speak to that for some reason that is beyond me have been put in charge of my care, when obviously they DON'T care. 😡😤🤬