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View Full Version : mnda branch get together - should I go?!



mellonius
3rd July 2012, 11:56
This is is a dilemna I have alluded to before in relation to the Forum itself, and I KNOW IT'S MY DECISION. Although diagnosed in March and become quite a bit worse since,.I am thinking of going with my wife to an informal get together of MND patients and carers in my area this week. [I have 'missed' several previous opportunities]
Two medics who look after MND patients, and whose opinions I trust have given me firm contradictory advice.
One says DON'T GO.
Seeing people further down the track will be depressing, and demotivating. It will make you concentrate on what is come, and distract you from making the most of every day. It will be distressing for your wife, and frighten her as to her burden of care in the future. And, in social terms, all anyone has in common at these functions is their illness - their gender,and range of ages and interests etc would not normally have brought these people together.
The other says GO
Meeting others coping with the illness will be inspirational and you will get comfort from realising that you are not alone,and that others are facing and meeting the same challenges as you are. You will get an idea of the support that is around and your wife will get some idea of to whom she might turn to get help and support. Further, you might get involved in fund raising or something that might sometimes take the focus off yourself on to others.

As all those reading this thread are forum members, I suspect all will be in the GO camp - but the views and/or experiences of others would be welcome. Even a GO or DON'T GO reply would be good.
And I don't think this is just about me - I suspect all new patients must have these issues in mind, and would appreciate some guidance.
I KNOW IT IS AN INDIVIDUAL DECISION IN THE END.

G60dubber
3rd July 2012, 13:30
go, you will both find it helpful and you'll probably be surprised that you enjoy it and have a laugh ! You don't have to talk about mnd if you don't want to, everyone is usually quite happy talking bout anything but to be honest :-)

wheelchairking
3rd July 2012, 15:02
I would advise to go. I had the same doubts about attending my first branch meeting but the doubts were unfounded. Everybody was so friendly and supportive. Yes I did see somebody at more advanced than myself but it made me realise that you can remain positive and make as much of your life as your condition allows.

miranda
3rd July 2012, 15:37
I am sure that not all branch meetings are the same, Initially I was reluctant to attend and wanted to avoid becoming MND focussed. But as other social events become more difficult (and less frequent!!) I decided that as some doors were closing I should open a new one. Now I am a regular, and we have made new friends. Unfortunately not many people with MND attend the meetings which is a real shame because everyone is supportive and friendly.

Kiran
3rd July 2012, 16:56
Go, Go... Go... we went and have met some great people and gone to some good events that are organised. It gives carers a chance to talk to other cares about things that make life easier.. we learnt a lot about things that we needed to get the ball rolling on, practical help to aid day to day living and where to go for help. Adie gets a chance to talk to other MND patients and doesn't feel so isolated. We went because there was an ice cream demonstration on with free tasters at the meeting and have been going since... Adie says it was just for the ice-cream... :D It was!!! but we have got a lot more out of the meetings than we expected..

Kiran
xx

Terry
3rd July 2012, 21:25
It depends what type of person you are. If you are open minded and quite realistic I would go. What have you got to loose, if you should find it not to your taste you can leave.
The meetings are usually made up of people that have been affected by Mnd in the past and perhaps five to eight people with Mnd.
Most of the people with Mnd at the meetings have a good sense of humour, good hearing and a good brain.
So Goooooo-- Terry

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