What does this all mean for me and my family

I’ve recently been diagnosed with Parkinsonism Syndrome. Ive had the DatScan and awaiting MRI. I’m 42yr old man with a young family, youngest is coming up on 1 and the eldest is nearly 3. And to be honest I’m a bit lost and unsure of what this all means or how it plays out.

Hello Andy,

Welcome to our forum community. You’re sure to hear from the group soon, and in the meantime we wanted to make sure you’re aware of the resources we can provide, and perhaps some answers to your questions.

Our website is kept up to date with news, research, and it’s where we store our archived forum threads, so if you don’t see a topic you’re interested in here, give it a search on the site. This link might be a good place to start with basic questions about Parkinsonism: Types of Parkinson's | Parkinson's UK.

Added to this, we have a free and confidential helpline on 0808 800 0303. These advisors are really the stars of the show, as they can help with everything from financial aid to psychological support for people with Parkinson’s and their carers to finding groups and activities in your immediate area. Do reach out to them, even if you just need someone to listen.

We hope you’ll enjoy getting to know the community, and we wish you our very warmest welcome.

Jason
Forum Moderator

Good morning Andy … I am 70 years old & was diagnosed with Atypical Parkinson’s in June last year following a positive Datscan & a normal brain Mri scan.

My symptoms are a slight tremor & the more worrisome “gait freezing” plus a few miscellaneous add ons.

In hindsight I have had Parkinson’s symptoms for about 5 years.

I am on co-careldopa [sinemet] for my Parkinson;s symptoms. I have other health issues that cloud my treatment.

You haven’t told us anything about the symptoms the have & why your medical team think you have Parkinson’s.

Having a datscan is a good start for your diagnosis. Although a positive datscan does not prove 100% that you have Parkinson’s much as a negative datscan does not prove that you don’t have Parkinson’s.

The Mri brain scan is to rule out more sinister reasons for the symptoms you have.
It doesn’t prove or disprove Parkinson’s.

As I say do give us more details if you wish to.

Any questions please ask.
Best wishes
Steve2