Cumbria ? Anyone there?


#1

Hi everyone , its been a while since ive been on here… i need your help.
I cant help feeling that i am one of only 3 people iknow of who were duagnosed under 50yrs old ! It feels this way. I have tried to find others but theyre not replying.
I dont go to my local griup any more - its full of "older"people !! I have nothing in common with them ! Please contact me if a) you live in Cumbria b)you have , or are affected by ,Parkinsons c) you are sick of being treated by “elderly care specialists” when you clearly are far from elderly and d) you just want to be treated as a normal person …
There must be someone else out there !!


#2

Hi dw12412,
I read your posting with interest but did not respond sooner as I do not fulfil all of your criteria. However, seeing today that you have had no response I thought I would throw my hat in so that you would know your posting has been noted by someone. I do meet some of your wishes. I also live in Cumbria. I too have Parkinsons - have done since 2011, I am also a normal person. Regretably I do not meet your third criteria as I am not far from elderly having reached my 80’s. Despite that, I can assure you I used to be young. Just to prove it and remind myself I have been looking through some old photographs. One in particular stands out as I am in shorts, standing on the top of Loughrigg Fell. I used to run on the Fells and did so until I was in my mid 60’s. How I used to love those days when I thought of myself as one of the fittest men around. I had to give up running when I developed a Hip Problem. Little did I imagine then that I would also finish up with Parkinsons Disease. But to be fair, Parkinsons hasn’t treated me too badly, at least not as yet!
Apart from Tremors and Shaking I haven suffered from any of the other problems about which I read on this Forum. I am slowing down now and walk with a stick but I put that down to my age, Just recently my sleeping has become disruptive. I put that down to increased medication. I have also decided to give up driving after being involved in an accident in the Yorkshire Dales. I do miss the car as I am also carer for my wife who has suffered from M.S. for 25 years, We both have our own Mobility Scooter and are frequently seen driving though town together, Well that’s my story dw12412, at least part of it. I just wanted to assure you that there is someone else out here. If you are treated in Furness General Hospital and you happen to see an elderly chap leaning on a stick and shaking whilst waiting impatiently for his appointment - it may be me.
Best Wishes, Gerrard


#3

Thanks Gerrard, I’m actually glad someone has responded. I was diagnosed in 2005 - when I was only 39yrs old. I only hope that by the time I reach your age I have such a positive view on life.
I live in Carlisle so don’t get much chance to visit Furness Hospital - I have to go to Cockermouth (and sometimes the Cumberland Infirmary)…
If you want to stay in touch send me a message on here?


#4

Hi again dw12412,
I am disappointed for you that you haven’t had more response. I have often wondered myself if there is anyone from Cumbria contributing to this Forum but it doesn’t appear to be so. You were certainly very young to be diagnosed with Parkinsons at 39. The good news is that - so I understand - the disease progresses much slower for those who are diagnosed when young. I had diagnosed myself at the age of 77 before seeing the G.P. Both an older brother and sister, now deceased had P.D. so when I started having tremors down my left side, coupled with constipation, I knew exactly what it was. My G.P. was initially sceptical as the symptoms weren’t apparent at that stage. However I insisted on seeing the Neurologist who confirmed the diagnosis within minutes after observing me walk across the room. I am at a loss to understand what he could see in my walk as I thought it was still perfectly normal at that time. Like yourself, I did initially attend the local group meeting but soon gave it up as I gained nothing from it. My symptoms were not then restricting me and, for someone who was quite fit, I found the exercises we were asked to perform undemanding. Well, I hope my response may alert some “Youngsters” to reply to you. Take Care, Gerrard


#5

Hi wife was dx 2008 aged 46, Penrith group as like the Carlisle group full of older people. Some of them more interested in getting their hands on the “Chips and Sarnies. Tried getting a Parkinson’s cafe going in Penrith, Appleby and Shap with zero take up. But in Keswick the Cafe is very popular.

As an organisation Parkinson’s UK seam to have given up on young onset. Went to a converance in Stattford Apon Avon in 2011 which was very good. But since then they seam to have had a change of direction and you here nothing of young onset anymore


#6

I think we know each other Gentech.
I was Chair of the Carlisle Branch but resigned this month at the AGM because I felt that they didn’t really want me as a Chair due to me being approx 15-20yrs younger than the rest of them.
I’m on the Local Development Team with another couple of younger Parkinsons people from West and a lady from Eden.
If you’re interested we could have yet another go at setting up a young onset group?