Hi - a quick intro from me then there is something I really need to share with you....
My husband was diagnosed with Parkinson's 12 years ago at the age of 31. We have two girls aged 7 and 10. I'm one of the facilitators for the Parkinson's UK Self-Management Programme - a path through Parkinson's.
This week I started a new Self-Management group, what an amazing bunch, people from all walks of life in one room, people with Parkinson's and their carers and partners. In the very first session people have opened up, really begun to talk about what matters and are starting to bravely look ahead. Already I can see the group starting to support and encourage each other. Many of the participants commented at the end that its such a relief to talk to people who understand.
Great that your group has had a positive start. Like you I am a facilitator of a self management programme, I was 51 when I was diagnosed April 2012. I still work full time as a Senior Charge Nurse.
Hope all available places get filled, I know there are still places in my group.
I have been invited to attend a course at the PD Unit at Edgware - the programme looks really interesting and I'm looking forward to it getting underway as anything like that can only be good for those of us with PD
Good morning Bethankit - I just typed a great long response to you and promptly lost it!
This coming Monday sees the last day of my four week self-management course at the PD Unit at Edgware Hospital. We have covered everything from medication to physiotherapy to occupational therapy to speech to exercise to you-name-it! It has been first-class and the expertise and support available to we patients at that unit are magnificent. Yes of course there are some frightening bits purely on the basis that it is a progressive illness, but it has certainly made me aware of how much I can manage my own life whilst being aware of what help is available to me - and making full use of that help!
Anybody who is offered this course should take it - apart from the discussions, talks etc, there is the contact with fellow sufferers and it's surprising how much you learn from other people and not just the experts.
I hope your own programme went well and your feedback has been positive.
Doglover and Lizzy65
I am delighted you have both had such a positive experience. Looking at the feedback I think everyone here in Aberdeen would be saying the same. I am a person with parkinsons so no more of an expert than anyone else. For me it is really beneficial to make contact with others in the same boat and share experiences. Do either of your facilitators have Parkinsons?
Keep in touch
No, as far as I am aware, nobody other than the delegates had PD. All talks, discussions etc were managed by the various specialists in the PD unit at Edgware.
Well done you for taking this on - I am sure that, whilst enjoyable, there was some stress involved and we all know what stress does to our Parkinson's!
Don't know about you but I am dreading this heat wave!
Stress levels at times were increased, but they were such a nice group of folk, and as we were mainly all PWP allowances were made! The group on occasions commnted that we facilitators were like a married couple,presume that meant we were working well together.
ive been reading the forum tonight and I feel quite concerned. I thought the best area to post under was 'self management'. I've been dx for four years now, had symptoms for probably 10 years, and yes, I know we are all different. What shocks me is the amount of medication some are taking. The long term effects of medication is well documented as are experiences and tragedies. I am very, very lucky to have a neuro who does not write a prescription without questioning. Yes, I have bad days, but I have learned that usually there is a reason ....what I've ate, stress, worry, lack of sleep, timing.... I just really worry that drugs are being issued without question and although giving immediate relief, are not dealing with what may be a simple issue.
i currently take 4 x sinemet plus 100/25 and 1 azilect 1mg daily. As I say, some days are harder than others, but there's normally a reason,,and exploring that is part of my self management.
i hope my post doesn't offend it is not intended to do so.
Thanks for that Bethankit, that was really interesting. Hope they do one of these in the Midlands
Just wanted to say we were up in your neck of the woods a couple of weeks ago on a coach tour, probably not as close to you.We went to Dunoon, Isle of Bute and cultural part of Glasgow. Weather wasn't brilliant but we had a really good time. We were stopping at Fort William on a coach tour last year as well, thoroughly enjoyed it!
The courses sound good - I'm definitely convinced but haven't seen many in the Midlands. Also, just wondering if they run during the day time or evening (just thinking about work) and I'd worry about turning up on my own - I know it's a slightly dozy question but I'm guessing people go on their own? I'll look out for any that head this way. J
You should definitely look out for this coming your way, very worthwhile. I think the courses all run during the day, but understand the dilemma of getting time off work.
Yes you can attend on your own, and fully understand apprehension about coming on your own, but my experience has been that everyone i supportive of each other and therefore barriers are quickly broken.
