I recently received a letter from my consultant informing me that i have Parkinsons Syndrome, as my appointment is not for a couple of weeks and i have no one to ask i wondered if anyone knew if this is the same as Parkinsons Disease.
I think if he said Parkinsons, that is the important word. Disease has always seemed (to me) to mean something caused by a bacteria or virus and probably infectious. I think Parkinsons is better described as a syndrome or simply condition. You could try calling the helpline number at top left of the page.
I AGREE...I WAS TOLD I HAD PARKINSONS AT 44YRS OLD WHICH FREAKED ME OUT AND EVERY OTHER WORD PEOPLE SEEMED TO SAY TO ME INCLUDED THE WORD DISEASE,WHICH WHEN UR TRYING TO GET YOU HEAD AROUND THE FACT UVE GOT IT ANYWAY DOES NOT HELP...
There are a number of conditions, "Parkinson's (Disease)" being one of them, which display very similar symptoms. Often the consultant won't know which of these you have until he's done numerous tests, including sending you off for scans.
Until he's sure he'll often hedge his bets by referring to it as Parkinson's Syndrome, or Parkinsonism. Sometimes, if he's still not sure, he'll stick with his chosen "undecided" diagnosis for quite a while (in my case 3 years) before committing himself.
But just to confuse things even more, some consultants, especially the younger ones, are now switching hook, line and sinker to a complete name change, with "Parkinson's Syndrome" or - more usually - just plain "Parkinson's" ALWAYS being used where previously "Parkinson's Disease" would have been used.
This is due to the aforementioned stigma attached to the word "Disease", and doubts as to whether Parkinson's actually fits the definition of a disease, a syndrome or whatever. It also aligns with this organisation's name change from "Parkinson's Disease Society" to "Parkinson's UK".
I'm sure your consultant won't mind you asking him to clarify your position at your next visit.
I prefer idiopathic parkinsonism. That means its Parkinson's, don't know why you have it, not in any great rush to find out why, there are some tabs to manage it 'til we find out how to sort it properly.
Unless I'm in the middle of getting a parking ticket, then it's Parkinson's DISEASE, or if I'm a bit shaky, but would like to be treated as an equal it's Parkinson's Syndrome - which is a movement disorder. If I don't much feel like talking about it its Idiopathic parkinsonism which comes about as a result of losing 80% of my dopamine neurons, which reside in the substantia nigra area of the brain about the size of a pea ...causes unknown but it is suspected that it may be environmental factors ... progressive, no cure yet ... most curable neurological condition ... Micheal J Fox, Mohamed Ali, Pope John Paul II, you might have it - it can be working on you 15 years until symptoms appear, needs more funding, and yes I am very young to have it, yes it did come as a bit of a blow, please don't let the next thing you say be 'Well, it could be worse!" cos I will have to take some Sinimet and strike you across the jaw at which people take great offence ... (when you see their face glaze over you can stop talking).
Thanks for your comments its a great help.
ive just been diagnosed at 52 but friends are nnow saying that i had signs 15 year ago so if it starts 15 year before that.then that means it first started in 1981 when i was 22.
now that is really worrying,its not looking good for the future if ive had it 30 year already
I'm not sure about this twins. If you have had it for so long without getting a diagnosis, then it is progressing very slowly and you still have years of active life ahead of you.
Hope this isn't too pollyanna so early in the morning.
Mine is progressing at far too quick a rate than i would like !!.a year ago the only symptom i had was dizziness , now, despite the drugs I am in pain all down my right side,, I feel stiff and i trip over anything bigger than a grain of sand, I am forever knocking things over and still feel a bit dizzy.
perhaps they haven't found the right drug for me yet.
Sorry you're having troubles Caroline. The only thing I can't deal with is my silly curly uppy toes.
Marathon runners talk about hitting a wall, I will be going along fairly happily and then ping.