Hiya my name is sue. I have been diagnosed with parkinsons and I am now seeing a parkinsons nurse i am on anti parkinsons medication .but i am so confused because my letters mention parkinsonism so do i have parkinsons or no .

“Parkinsonism” is the umbrella term which includes several conditions which share similar symptoms. “Parkinson’s Disease” (aka Idiopathic Parkinson’s Disease) is the most common type but can only be confirmed at postmortem. So a person may or may not have Parkinson’s, but can be confirmed to have some form of parkinsonism.

Hi Sue,

Wow, that is a really difficult scenario to try to help.
Is there anything else you can tell us, that might help us help you?

Hi Sue, My name is Sharon and may be able to help a bit. I have had Parkinson’s for about 17/18 years and as you say the title on my letter would sometime say Parkinson’s, Parkinsonism or even probable Parkinson’s, Anyway I decided a couple of years ago to ask why sometimes this and sometimes that, My Consultant straight away sent me for a blood test and made an appointment for another DAT scan. Then I had an appointment with another Consultant who gave me a comprehensive check up. The upshot was I have Parkinson’s. Having said that I have noticed on a letter later than that second opinion it says Parkinsonism. So as far as I am concerned I have Parkinson’s. Hope it helps a little. Best wishes Sharon

Hi Sue,

I agree with Sharon.
I think the problem is no two people have the exact same “types/symptoms” of PD and as a result, doctors and consultants and others have their own, for lack of a better term, ‘ways of deciding’ whether you have it or not.
And of course in a large percentage of cases their particular diagnosis is correct and everyone else is wrong.
Whether they call it Parkinsons or Parkinsonism, and I have heard other terms as well basically it is the same however you slice it.
Please don’t stop on this forum, it really is great having differing people all with PD just talking to each other and giving help when they can.
The moderators are really great and their knowledge really helps.