Support groups


#1

I was thinking about joining my local support group but I have hesitated because I have been trying to keep a positive attitude since being diagnosed in February and I am worried that it may be more distressing to see others in more advanced stages of the disease.  I am usually a big supporter of support groups but have not even tried to find out in this instance anything about them. Has anyone got any experiences they want to share, either positive or negative.


#2

Hi Camargue,

you have a good point. I have yet to visit a support group, even though I can see the benefits, and like you I am unsure about seeing my future in front of me is a bit worrying. As it stands I am very well and finding just a single Azilect tab. Holds me in check no problem. If it wasn't for a slight slur and occasional  stammer, most wouldn't know I have pd.

kee happy,

Horace


#3

Why are most of the support groups / treatments during the day, I would love to access a group in my area that provides therapies for people with neurological conditions but it is on a Tuesday afternoon. Hydrotherapy , physio / OT etc are all in the day.

Not all people with PD are at home in the day. I work full time from 7.30 ish till 3 on Mon Tues and Wed after which I look after my grandchildren till 6.00pm.  Thursday and Fridays I work 7.30 till gone 4.00 so how can I access these groups.

There is a young onset group in the evening  but it means a 24 mile journey and even their therapies happen during the day.

 

Caroline.


#4

Fear of what I might discover if I met up with other Parkinson's people caused me to hide for years. It was almost 5 years after dx before I met another PwP. Since then I've met loads of people affected by Parkinson's and displaying many different symptoms. The overwhelming impression has been very positive. There is life after a dx of Parkinson's and lots of it. There are challenges and set backs but there is laughter too.

Caroline's point about daytime activities is a good one. It can be hard to find things that are available during the day. I work for a big company and we have a small Parkinson's support group attached to the employee disability network. Its still very small but we try to meet up monthly. Every second meeting is run by audio conference to avoid the need for travel.

EF

 


#5

I agree with wild fowl: meeting other people with PD is a good thing, nothing negative, depressing about it. I am impressed and full of admiration to see how well people cope. It is inspiring. You generally see very few really advanced cases, however, as they will have difficulty travelling. Give it a try!


#6

I was reluctant to join a support group when I was diagnosed three years ago, being afraid of seeing myself in five or ten years time. I eventually decided to give it a try and I'm  so glad I did, rather than being distressing I was pleasantly surprised, everybody is very positive and upbeat, and I've met some lovely people. It soon made me realise that there is life after diagnosis. 

 


#7

Hi Camargue,

I understand just where you are coming from. I was DX on 7th March 2012 and my world just fell apart. However I am a practical person and looked up Parkinson's UK website as recommended by my consultant where I discovered that there was a local group and that they were meeting the following Sunday. Over the next couple of days I waived over whether to go or not; I imagined in my mind lots of people in wheelchair's shaking uncontrollably and was not sure that I would be able to cope with this. On the day of the meeting I recalled an old saying 'better the devil you know than the devil you don't' and decided to take the bull by the horns. How wrong my imagination had been, within a couple of minutes of arriving I had been introduced to 3 people all of whom had been DX up to 16 years previously and all of whom were walking normally, talking normally and not shaking. Yes there were 2 people in wheelchair's but I left that meeting feeling that there was a possibility of many years remaining active.

The group runs a weekly excecise class for PwP that is well attended and taken  by a Physiotherapist and afterwards enjoy a cup of tea and chat. Being a mixture of people that have only recently been DX to people who have lived with the condition for many years there is no shortage of support and good advice.

It is a fount of knowledge and I have found that there is always someone in the group that can help. We all have bad day's and good day's, and it is the best tonic to be able to chat with someone who has been through what you are going through and offer advice.

My experience of the group has been nothing but positive. For your information my group is the Eden Valley Support Group.

I hope that you find this helpful.

Best wishes

Topsy


#8

I think we all have the same dilemma. And I believe it depends on your age ie retired or working etc

I personally hope to carry on working as long as I can

but I had no choice when I was at the hospital for a cat scan 

must have been bogof for pwp that day every one waiting was a pwp most in their 60s

some of them in poor shape  in fact they were asking-me why was I there 

no stick  or aids. Etc 

honestly it scared the life out of me

 

 


#9

Thanks to everyone for their comments.  I think my problem is that my mum had PD and I know only too well what the future might hold. I guess I didn't want to be reminded of that.  At present, having only been diagnosed since Feb and still able to do everything i want apart from a few aches and pains my way of staying positive has been to try and ignore the future.  However on balance i do think it would be good to go along to my local group if only to see what is on offer.  It would also be good to talk to people about their experiences of treatment etc.  I am retired but seem to be perpetually busy with visitors and other activities not to mention travelling in our campervan.  I was warned this would happen in retirement but I am amazed at how hard it is to fit in extra activities.  However I think that making contact with the group would be good as no one can predict what the future holds and it is good to have as many support networks as possible.