SCA3

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Permalink Reply by Jess on February 8, 2012 at 10:36am

Hey Patsy
I would dearly love to take the wife ...but I don't think she is ready just yet ...but I still have time till the meeting ,hopefully she will gain the confidence with my help . I know support groups are so beneficial not just to have chat and find new friends but to get help with other matters x

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Permalink Reply by Patsy on February 8, 2012 at 10:58am

Dont forget that the Ataxia UK helpline are also there for you but... yes do encourage Jess .. assure her that you doint have to stay for long if you dont want to.  There's no pressure and it's always worth a try.  I have 50+ members in my group but rarely get more than 10 attend a meeting and most of those are a different combination each time.

Some are persuaded to come by parent, sibling, spouse or friend - some just turn upon their own.

They virtually all tell me that, even if they only come very occasionally, they appreciate the monthly newsletter and are pleased they came along.

Patsy :)

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Permalink Reply by Jess on February 8, 2012 at 11:07am

Patsy I will keep trying won't give up hope ...I know she needs the help n reassurance that's available out there .. x

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Permalink Reply by Jess on February 8, 2012 at 10:39pm

I am sat here thinking why good people are afflicted by any form of illness ... I just don't understand... it saddens me no end ... My wife such a wonderful person her quality of life slowly leaving her grasp ...must be so demoralising...how does one ever cope or deal with it ...and me as i look on the feeling of not being to help ...the useless feeling hits home ...and sinks in to a heart that heavy already.

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Permalink Reply by Patsy on February 9, 2012 at 10:01am

Bit out of my depth here Reg - one copes because one has to I 'spose.  There are so many worse off than ourselves and many of them much younger.  

You have the right idea of getting together with others - especially 'carers' - I have had people come to my group who have loved one's with ataxia but cant persuade them to come too.  

I think if you concentrate on exercises that is therapeutic in more ways than one.  Have you considered getting a Wii fit console?

I am glad you are on here and expressing your feelings - that helps a lot.

Take care, love to Jess, Patsy :)

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Permalink Reply by Marie Turner on February 9, 2012 at 1:02pm

I would echo Patsy's comments. I belong to a support group and it an opprtunty for carers to get together. It is also a chance to pass on tips and have a good chat. I had to work on acceptance for four years. It dosn't seem a very fair world does it but we must do what we can.I think whathelps me is looking forward not back as my daughter pointed out. The quality of our lives are affected. But it is more frustration rather than sadness. I find what helps is Not leaving things lying around for me to fall over and handing me things so that I don't have to bend.Just being a companion is a huge help . I also like to do things within my capabilities and not get too upset at the things I cannot do.We have man jobs which involve co-ordination but I am the moral support so still feel needed.

Marie

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