I’m looking to make connections with other people with Parkinson’s. Happy to hear from anyone, but
especially any folks with young onset who are no longer working. We seem a rare breed !
Bit about me- I am a single guy, I live alone, 42 years old. I was diagnosed back in 2013 at the age of 37. Shortly after diagnosis I could no longer work as my symptoms include problems around walking, balance, rigidity and fatigue. Since then it’s been quite a journey. Starting medication…increases and changes to meds…side effects etc.
One of the biggest struggles I face is isolation and loneliness. I live in mid Devon and don’t know many other people with Parkinson’s.
If anything here resonates for you then get in touch.
I hope that today is a good day for you !
Hello and welcome on board, I was diagnosed in 2009 at the age of 52 and was continually being told I was young to get PD. I didn’t personally perceive myself as being young onset although did know I was at the youger end of the spectrum. Work was beginning to become difficult when I got an unexpected opportunity to take voluntary redundancy, which I did leaving work in Jan 2012 so not far off 7 years now. It did feel a bit like I was in no man’s land to begin with. I got called retired, unemployed, or not working depending on who was asking not working due to disability was rare and not working due to voluntary redundancy unheard of. I now draw an occupational pension so just stick with retired! Anniversary of my diagnosis is in December and just to make life complete I was diagnosed with normal pressure hydrocephalus and had a shunt fitted almost 2 years ago. However still standing although a bit wobbly at times and cognitively a little slower but not doing badly all things considered. I too, live alone very happily and intend to continue to do so for as long as I can. Not as young as you when I left work but I am conscious it was sooner than many and it is a bit of a strange experience in the early days, I am used to it now.
I live alone and was diagnosed at 48. Couldn’t work out where I fit in in terms of PD and still can’t. I was too old to be early onset and too young not to get a shocked reaction from people when I mentioned the diagnosis, though it’s a rubbish condition however old you are I guess.
Living alone with this is tricky and worrying about where the money comes from and how to pay the bills and the mortgage when I can no longer work keeps me awake most nights. And I’ve been hanging on by my fingernails at work for so long that I’ll almost be grateful when they finally decided I’m going - my fingernails really won’t take much more!
I really do think you’re right, isolation and loneliness are real issues that then impact on everything else. I don’t have friends with Parkinson’s. I have tried but we tend to be a flaky lot so sustaining a friendship with somebody else with Parkinson’s is pretty tricky in my experience. I would like a bit more face to face contact with people in a similar situation to me but I can’t find many however I do find this forum a good place to make contact [when I’m not throwing my toys out of my pram because I’ve deleted my post 6 times and opened up who knows what instead, that is].
Is it very rural where you live? I live in the city and cafes are my go to when I get fed up with myself. I’ve always aimed to live within crawling distance of a pub a cafe and a GP - though I love the idea of being nearer to the sea so I guess it’s swings and roundabouts.
It’s hard and I don’t know the answers but this forum is a good way of making contacts and having a moan to people who can relate to at least some of your experiences.
I know it’s not the same as face to face contact but have you joined any of the online younger persons with Parkinson’s groups such as ‘spotlightyopd?’ I don’t know much about it but something like this might be a good place to make contact with people who can really relate to the situation you are in.
Hi mate, don’t worry you’re not alone, do you have support from family & friends? Have you a Parkinsons support coordinator in your area? They are really good & can help you with benefits you may be able to claim for. I had the DBS (deep brain stimulation) op last year & it has really helped me with rigidity, movement and confidence. Have you got a Parkinsons nurse to have a chat to? I know mine is a real help.