I have recently been diagnosed with Early Onset Parkinson’s. I’m 42.
I’d had symptoms that physios and doctors weren’t able to diagnose for several years and I’d felt very fobbed off by professionals who had repeatedly assured me that, “nothing was wrong”.
After insisting I saw a different GP I finally got a referral to a neurologist. Nine months after my first neurology appointment I got a diagnosis of Early Onset Parkinson’s.
My initial feeling was (genuinely) one of relief, to the point where I was almost “happy”. To have an explanation for the way I was feeling and confirmation that I wasn’t imagining it made me feel a bit lighter.
My memory of the consultation with my neurologist is quite blurry post the diagnosis moment, but I do remember immediately asking, “will my life now be shorter?”, and she replied, “not automatically, no”.
Since then I have researched lots online and been in equal measure reassured and frightened by what I’ve found. I’ve signed up to the Parkinson’s UK webinar series for newly diagnosed people but I’m looking forward to also using these forums to speak with people in a similar position to me (and others on the Parkinson’s journey).
I’ve found that since I’ve been diagnosed I’ve had a sort of perpetual cloud of worry over my head. I worry about the length of my life and how it will look. I am sure others have felt this way too though so any advice would be gratefully received.
I’m looking forward to getting to know the Parkinson’s UK community and share experiences with you all.
Hi @SteveD, thank you for your post and welcome to the Forum! We hope you enjoy being part of the community here.
We are sorry to hear of your diagnosis and understand how worrying a time this must be for you. We have information on our website for people newly diagnosed, including a checklist of things to do and links to support that is available to you. You can find it here: Newly diagnosed with Parkinson's | Parkinson's UK
We also have a free, confidential helpline on 0808 800 0303 where our specialists can answer your questions and offer you the advice and guidance you need.
Please take care and let us know if there is anything we can do.
Steve and Dookie, you guys really put my shock at diagnosis 3 wks ago in persepective:
I am a healthy active 55. I can’t imagine dealing with it younger as this already feels plenty young enough frankly. Be good to keep in contact as that is what feels is missing with YOPD - new friends who get the 1million daily emotions and thoughts in these early days Mike, West Mids.
Hi @Mpcorb, thank you for sharing your diagnosis with us. It’s completely understandable to feel overwhelmed in those early weeks because there’s a lot to take in.
Hearing from others who’ve been living with young onset Parkinson’s can make a huge difference, so hopefully some members of the group can share some of their experiences with you. We also have this resource which might make for useful reading for you: Young onset Parkinson's | Parkinson's UK .
If you ever want to talk things through, our free, confidential helpline is here on 0808 800 0303
Hi Steve, welcome to the community — and thank you for sharing so openly. That feeling of relief mixed with worry is something many people here will recognise.
The good news is: you’re young, you’re diagnosed early, and the treatment options today are far beyond what they were even a decade ago. Medications can manage symptoms well for years, and when they start to fall short, there are surgical options like Deep Brain Stimulation (DBS) that can restore a huge amount of quality of life. Many patients with early onset Parkinson’s continue to work, travel, and live fully for decades.
That “cloud of worry” you describe — it does lift as you gain more understanding and control. You’re already doing the right thing by connecting with others and educating yourself. You’re not alone in this.
Mike, West Mids.