Parkinsons in me


#1

My name is Colin and I have Parkinsons for 10 years now and it was less than 2 months ago that there was help for people with Parkinsons as a small advert in the local paper not seen by me but my wife so we went along to see what it was all about I was amazed it was run by a guy that has Parkinsons for 20 years


#2

Hi Colinr - some people are diagnosed with PD at a young age, then others at various ages. Some cope quite well with controlled medication without problems, but we are not all same, it all depends on how your body reacts to PD. Glad you found some one to talk to and perhaps give or get advice from in return. I was DX when I was 57 and I’ve had it for 8 years now.

Hope you are coping well - Sheila


#3

Hi Sheila what I was trying to say was that for 10 years I have been DX with Parkinson’s, I have had it longer.
I didn’t know there was group’s out there that dealt with Parkinson’s sufferers and their carers until 2 months ago …I was so inspired by this that I decided to set up a Parkinson’s Cafe in Hullbridge where I live the response has been fantastic but I feel that I am on my own as to any help in this project but I shall carry on as I feel that it is helping.
Keep smiling regards Colin


#4

Hi Colinr - that is a brilliant thing you have done there. it’s good that PWP can get together and feel at ease amongst others with the same disabilities and understanding. I belong to a local Parkinsons group in Hinckley near to where I live, I have been with them now for a number of years and I am on the committee. We have lots going on each month and help people get out by organising outings. I was quite nervous when I first went but soon settled, glad I made the effort.

Hope your ‘cafe’ does well and gives you a lot of satisfaction in what you have achieved!

Well done! Sheila:hugs::hugs:


#5

Hi Sheila thank you for those kind words of encouragement, the first time we opened (Parkinson’s Cafe PC for short) I was very nervous and wondered if anyone would turn up.
But to my amazement I had quite a few and there Carers and we had two hours of chat and teas and Coffee, Near the end I asked for a show of hands for having PC monthly and had a unanimous feed back.
Maybe you could give me a few hint on how I can keep them coming and keep them there I would be grateful
Keep smiling. Colin


#6

Hello Colinr - perhaps you could do a few easy quizzes, or perhaps get them playing some card games, you could suss them out, because some folk just like the chat and drink coffee. Or organise a few chair seated excercise if there is enough room that is! perhaps get some info leaflets from Parkinsons Uk to read, picnics in the park? walks in park?

Hope this helps - Sheila


#7

Hi Sheila
I have now opened 2 Parkinson’s Cafe’s in Hullbridge now and it’s going really well I took some of the ideas like quizzes and activities with your advice.
We(pc) went to have Afternoon Tea at the The Rayleigh Club Hullbridge on Wednesday and everyone enjoyed it they would like it to be on a regular basis.
I have had various speakers come one on Tai-chi and another on reflexology they were both excellent.
Please tell me how you are getting on.
Regards colinr