I’m 51. Just been told that I probably have “Early onset Parkinson’s”!
I am an Electronics Engineer who has spent most of my working life behind a desk. I have done exercise over those years, so not been a complete desk potato!
I enjoy cycling and walking and playing the guitar.
I noticed a small tremor in my right-hand index finger last year and difficulties in writing M’s, n’s, u’s and w’s in my writing. Also there are now some songs I can play that I could play last year (been playing since I was 11).
To be honest, I’m s**t scared of what I now face and how long I have left to live and in what quality! I have told my Wife to divorce me and move on so I don’t ruin her life and I’ve considered suicide!
Has anyone else, my age, reacted as badly as I have?
Thank you for trusting the group with how things feel right now.
Many people live for decades with Early onset Parkinson’s with a good quality of life. Symptoms often respond well to medication, and things like cycling, walking, and playing guitar are activities lots of people continue for years.
I can relate to everything you are feeling right now because having PD is very scary because we look at people with advanced PD and automatically think that’s how we will be. But the truth is that everyone has it different and we can live a pretty normal life for many years.
I personally was diagnosed Feb 2025 but had suspicions for a few years before that.
I decided that I wanted to reach out to other people with it and attended a ‘first steps with PD’ course with my husband and found it really helpful. So from there I decided to attend weekly exercise classes and a PD singing group. Well done to you for reaching out too.
My husband is now my carer and I am on lots of meds and involving him in my new life as it is now has given him a very important role which he is learning to adapt to and he feels included and knows how valuable he is to me.
Everyone with PD has different requirements and routines but we try to live our lives making adaptations here and there so we can still try to make the best of things.
There’s a lot of help out there so keep reaching out and keep in touch on this Forum
Hi read your post, I was diagnosed in Nov 24 at 45 years old I had symptoms a year or 2 before that.
I too took it badly and thought the worst but there are lots of examples of people who live well years after diagnosis. I found it useful speaking with other young onset people - would recommend 2 Parkies in a pod - podcast both young onset people host the show - there is also the Michael J Fox website where you can meet and have teams calls with other people in the same boat. - exercise really helps too.
Forgot to say in my earlier post think it’s also worth trying to remain hopeful that medical science improves and they find a cure or better medication soon -all the advances in AI must help find a solution soon!!
Morning early diagnosed how scary but it comes to all the good ones. I’ve been diagnosed 15 years to be honest can’t say much from the shaking slowness.
And taking medication Still working still enjoy my grandkids so
Don’t let this take over your life every time you go down you say no get back up and enjoy your life. Enjoy what you have. You never know when you wanna go it could be Parkinson could be anything. I’ll probably be one of the lucky one who has not been affected badly? because I forget to take my tablets or can’t be able to move to take them but it’s not the end of the world might see it is but don’t let it win. You let it when you get down quicker, it’s not over because you have Parkinson go through this part of your change in light not on your own, but with your wife, my my husband is my soulmate. I love it he knows when I’m not completely there with it like it was in when I was sitting in there getting stressed and the shakeing comes he just says let it shake wear hear together don’t be a shamed you got Parkinson’s. 2026 is your year don’t let this take over enjoy your year let me no this date 2027 how your yeas v been
Morning early diagnosed how scary but it comes to all the good ones. I’ve been diagnosed 15 years to be honest can’t say much from the shaking slowness.
And taking medication Still working still enjoy my grandkids so
Don’t let this take over your life every time you go down you say no get back up and enjoy your life. Enjoy what you have. You never know when you wanna go it could be Parkinson could be anything. I’ll probably be one of the lucky one who has not been affected badly? because I forget to take my tablets or can’t be able to move to take them but it’s not the end of the world might see it is but don’t let it win. You let it when you get down quicker, it’s not over because you have Parkinson go through this part of your change in light not on your own, but with your wife, my my husband is my soulmate. I love it he knows when I’m not completely there with it like it was in when I was sitting in there getting stressed and the shakeing comes he just says let it shake wear hear together don’t be a shamed you got Parkinson’s. 2026 is your year don’t let this take over enjoy your year let me no this date 2027 how your yeas v been
Sorry to hear of your recent ‘Probably have’ young onset PD and the impact this is having on you.
Firstly please reach out to the Helpline that the moderator posted in your other post, they are very helpful with loads of experience, talk to them or others about your fears. Check out via Parkinson’s UK if you have a local support group near you.
As My Mum used to say to me - ‘Don’t run before you can walk ! Or using more modern terminology don’t go down that rabbit hole of what if.
Sounds like you haven’t been formally diagnosed for sure especially as you mention fear of motor neurone disease. So I guess the real first is find out for sure.
One of the most important thing my husband did (he was diagnosed 13 years ago) was research hospitals and doctors who specialise in Parkinson’s. We asked our GP to refer him to a London Hospital for care. Yes it us a pain to travel there, takes 2 hours but is totally worth the dedication of experience the neurological team give my husband.
I had suspected for 4-5 years that my husband had Parkinson’s disease and indeed it took 2 visits over a 3 years period to finally have this clarified by a DATscan.
My husband presented with left hand/arm tremour and left side weakness. Over the 13 years this has not changed and with medication is mostly controlled. He too liked to cycle snd was a gym buddy going most days if he could. Parkinson’s has not stopped him doing those things. Sadly Sepsis and some intricate orthopeadic leg operations related to his knee have put him in a wheelchair - totally unrelated to Parkinson’s. It is this that stopped his cycling and gym/exercise regimes.
Parkinsons related he suffers bowel issues again with medication doesn’t impact him unless he forgets the medication. His fine motor co-ordination is slower than he’d like, drops alot of things but picks them up and continues. He was an Electrical Design Consultant, similarly spending alot of his latter working life at a desk and computer. Sadly (must to his trying) he never mastered playing the guitar, he does do some archery. He worked commuting to London till he was 74, really only stopping then because he felt he was slowing down in being able to articulate, particularly in meetings.
As a previous poster replied - non of us know what is round the corner with our name on it, so please don’t despair. Use your fear to explore what’s out there for you, and keep doing so, but be careful of the promised offers of cures/help online.
My husband and I have participated in a number of research projects for Parkinson’s and Kings College Hospital/London Imperial hospitals over the years and found that hugely rewarding.
Good luck, once you’ve formally diagnosed there is help available, exercise classes, meet up groups, online communities such as this forum - use them all. Very Best Wishes.
Hi Shalfbeast, sorry to hear you’re struggling with the diagnosis and potential outlook. As some replies have noted, PD has a very individual progression so you might not experience the worst that Google has to offer (I stay well away from Googling on PD!) I was diagnosed last year, having had symptoms for about a year previous to that. I try to stay positive, not let it interfere too much with “normal” life and I try not to project into the future. Yes, Parkinson’s is a degenerative condition with no cure (as yet) but then so is old age. Two blokes at my golf club, younger than me, didn’t see Christmas this year due to cancer, so I count my blessings. I’d recommend staying as active and fit as possible as a good daily distraction - a bike ride, a good walk, a stretching class at the gym, swimming, whatever you enjoy. Learning how to relax properly is also a bit of an antidote when stress builds up. Anyway, keep posting and let us know how you’re doing. All the best.
