Hello to the group. I am a man and will be
69 this September but I am not old. I am not a group sort of person, preferring to figure things out myself. I have always been very fit and healthy and studied practised martial arts. I was diagnosed with Parkinson’s a year ago with a right wrist tremor and I had slowed up a bit. I am pretty much the same currently. I am ready to start finding out others like me manage, as there are other peripheral things which are going on. I do not have experience of using forums so need some guidance.
Hello to the group. I am a man and will be
Welcome to the forum There is a lot of support available to you here from the Parkinson’s community if you need it.
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Emily - moderation team
Thank you Emily.
Hi Fil, if you can follow the ‘Exhasted Carer’ post, you will learn an awful lot regarding what it is like for carers and people with parkinsons and pretty well what to expect. I have just posted a comment from ‘Jackson’ on there ‘sheffy’ is my name. Personally I feel you would benefit from joining a Parkinsons group in your local area, when you feel that are ready to take the step forward
It would be worthwhile looking at what your local branch offer in the way of classes or social events. You can pick and choose what to get involved with and, as you appear to be interested in exercise, you might find that a class introduces you to a similar age group who are at the same stage as you, or just beyond, and I’ll bet you’ll learn a great deal about how to deal with symptoms, your local medical team and tips to make your life easier. You can worry alone but sharing seems to more than halve that and you won’t feel so isolated. You can ask questions of the forum but somehow I find getting personal stories is more useful for managing your day to day issues. Good luck.
I believe in joining a local group as you can pick up mountains of information and meet others in a similar position. When I was diagnosed with Parkinson’s at the age of 60 I was still working at my job of accounting software consultancy. My wife found out about the local group and was welcomed with open arms, she managed to get lots of help and advice from the members on what to expect or not!
I managed to keep on working but retired at 63 after the company who acquired my division of the firm I was working for at the time, didn’t play the game ethically and I was forced to take them to court. Fortunately my son’s best man at his wedding was an employment lawyer and he took on my case with some success.
In the meantime I started going to the monthly local group meeting and soon found it had lots of contacts with Parkinson’s local regional advisers. They regularly attended our group meetings. They were a great source of help in obtaining Employment Support Allowance, disability benefits(now PIP), Blue badge etc and driving licence.
I very soon was involved and got approached to be treasurer of the group., which I did for 4 or 5 years. I have reverted to being just a committee member (general interferes with stupid ideas).
The group is very proud to be recipients of the Queens Award for Voluntary service in 2017.
I get a lot of pleasure by involving myself in the activities… unfortunately now I’ve had PD for 11 years and I’m not as well as I used to be, but find that there are always some positives every day.
Anyway I would think positively and join your local group, especially as you will get exercise classes or even play bowls like our group does.
Good Luck IanR (Albert)
Hello all, I have been reading these posts with interest as I think there is potentially an interesting discussion to be had around support groups. I have a lot of time for support groups, i consider them to be an important or even vital part of many people’s lives in a myriad of ways. I did go to a local support group for a bit. Everyone was very nice, welcoming and all that and as you said Fizzy, lots of useful info and activities to share and I make absolutely no criticism of anyone who gains anything from this. I found however it wasn’t for me. It doesn’t suit my way of managing my PD. Granted that may change as time goes on but that is a maybe for the future not for today. At the moment I am content to use the forum and website as I need and hope contribute to with thoughts and experiences that may help others. I accept however that I can at least in part do this because of my background i know my way round the systems and how to search and about the condition which helped a lot. We each have to do what’s right for us as individuals and that needs a variety of support systems and flexibility; whether or not they are formally Parkinson’s focused is an important factor but not necessarily the only way.
Wecome to the group Fil you don’t say if you are married or have a partner, I was dianosed with PD 2010 I do Tai Chi which helps a lot. I did try a PD group but it was not for me, maybe later, I have a wonderfull husband who is my carer and just take each day as it come’s you will have good days and bad days, but don’t let it get you down. Make sure you visit your nurse she will have lots of advice. The thing that I find is a problem are the jo-public as all they think PD is having a tremor and there is a lot more to PD,than a tremor I carry leaflets about the condition around with me and then when they ask what is PD i just give them the leaflet, I get my leaflet from Parkinson’s UK I don’t force them on to people, only if they ask. We do need more education on PD but the longer I have it I myself find out that there is a lot more to know about it.
Thank you Sheffield.
Sorry about the delay. I’ve been completely off Sinamet for 6 weeks and am just about to restart to see if the wrist tremors reduce. My wife says they have got worse. I know they have as my writing goes microscopic now.
I haven’t been to a group yet as I seem to always be so busy which is crazy I know.
I am going to an acupuncturist tomorrow but maybe should cancel as I should really wait for Sinamet effects?
Hiya Fil, been a while since I was on, it’s funny but I’m having problems with Sinimet at the moment. Anyway just to let you know my log in name is’nt Sheffield it is Sheffy this is part of my first name and surname. Hope you get some satisfation with your Sinimet, the group is the last thing on your mind, got to get your meds right and get back on track. Good luck and hope you find a meeting near to you