I am aged 67 and have had pd since 2004. I am reasonably fit, walk regularly, just reaching the stage where I move a little too much but I'm reasonably ok.
My local pd branch seems very unappealing with me being one of the younger, least affected members. In fact, over the last 8 years I have only attended when the branch has featured talks by local/visiting specialists. As the disease progresses I would love to talk to others about treatments, sleeping, exercise etc but find my local programme very off-putting. It features such items as people talking about their holidays, their record collections, even matinee visits to the panto (surely very depressing or at least irrelevant? Do we need a formal programme - would it not be better to just meet regularly for an informal chat?
I'd love to hear others opinions on these matters as I very much feel thed need for other people to help maintain perspective regarding my own disease.
hi john3419. i have been a member of my local branch for 12months but i was diagnosed in 2003, it was the best thing i have ever done i have met some lovely people who are now good friends and like you i am one of the youngest members at 52 but that does,nt seem to matter i have also just been asked to join the committee which i accepted, we have monthly meetings where we have a guest speaker and trips off are also arranged, recently we had a visit from a member of the team from head office in london who said we were one of the best local groups she had seen, i suppose it depends on the people who run the group and what they want out of it my group does tai chai once a week and hydrotharapy once a week and there are other classes available such as art classes and the gym is also available we all get on really well so i dont know what to suggest to improve your local group unless you could get a place on your committee and then you would have your say good luck sue.
Hi ,I have had pd 40 years, mine is the inherited type and it took doctors a while to diagnose it. lived in a different area then, but i attended the pdg because it wasn't far from where I lived at the time. But they usually had some person or other giving a talk about a holiday they had been on or whatever, and the chap who ran the group always made a point of telling people I was the youngest member. Then we moved house, but I haven't been to the one here because it is held over sort of a lunch time and is too far for me to travel to as I don' drive. So I guess my own experiences of PD groups has not been very good. That is one reason why I joined the forum because if I need any answers I know I can get them here. also, it's fun and I enjoy it. There are other groups in the village I can go to if I so wish.So I am perfectly happy either way.Having said that I know some areas do have really good pd groups, so I think it depends on what an individual is looking for from a PD group.
Hi, I am in the same position as Blue Angel and although on paper it looks as if Liverpool has 2 groups, but for pwpd living in and around my area they might as well not be there. They are inaccessible by public transport due to either distance or time and money, as the cost of travel is around £4-5 for a round trip.
I spoke about it to my GP who said that she had a at least 8 people registered with her one surgery who would love to access local support. Times that by ten at least and that makes for a number of people that are not getting local support.
I believe that I could rectify this by starting a group which covered a quite large area of Liverpool and on this basis I e mailed my 'local' support officer as advised by Puk, to ask for support and guidance about how to go about setting up a group. By way of reply I received the most off putting e mail which informed me that Puk would not wish to endorse any more support groups in Liverpool and she directed me to the very two I had told her where inaccessible to pwpd in the Knowlsey area.
So much for help and assistance,it is on this basis that I and many others in the Knowsley area are without support, on behalf of those people, thanks Puk!
Hi John 3419
I was diagnosed with PD in November 2003 and after getting over the shock of it the first thing I did was find out what there was for me in the local area. I discovered my local PD group and that was a life saver.
Everybody is so friendly, we have an exercise class every Thursday afternoon. We have Yoga classes Singing classes. We have a monthly meeting with either a person to talk about PD or just an ordinary speaker. Some of these have been very interesting. We have outings in the summer. We have a coffee morning once a month in the local pub . All in all we do a lot and the branch is very good.
For the last 3 or 4 years I have been on the committee and I am the stand in Minute taker.
My PD has responded well to medication, but recently I have been suffering from a bad back which may be sciatica but have not got to the bottom of that yet. It is very painful and at times makes me feel quite miserable.
I was diagnosed in April 2012 aged 51 and it came as a bit of a shock to say the least. My husband found out about the local group and we have gone along, although we are probably the youngest there, we have found the group very enlightening and have let us both see first hand how others cope with this condition. Everybody in the group is very friendly. Our local group meets 2nd Wednesday of the month in the evening except January, February, July and August. On the occasions we have attended there has been a speaker, one very beneficial one was from a solicitor talking about power of attorney and this created a very lively discussion. Meetings always end with a cup of tea and a chat, so on the whole very worthwhile, it is not an easy task for the organisers to pitch the meetings to suit everyone but it looks to me as if a lot of thought goes into it.
As I work full time I have not been able to attend the hydrotherapy on a Monday evening or the physio on a Thursday morning. However perhaps in the future I will benefit from both of these therapies.
I've passed your comments on to the branch network team.
If you do have suggestions that you would like to send directly to them, you can contact your local Branch and Volunteer Support Officer. You can locate this person by clicking to the 'Local to you' link above.
Glenchass, I'm sorry that you've had problems with talking to your local team. I've brought this to their attention. If you send me your telephone number by email, I can pass this along to them. They would be happy to have a chat.
I hope it helps,