Dear Marie & Patsy
I am so sorry… I have been so consumed by finding out everything I possibly can about my wife illness and wanting absorb scintilla of information within the shortest time available, I forgot to ask you about your life and how you and your family cope… I am very much an unselfish caring and loving person , for the first time I forgot …very selfish . I am very sorry.
haha - no worries - quite understandable - we have all been there - wanting to know more - it's only by 'sharing' thoughts that we learn anything.
That's we do at support groups too - hope you take Jess to meeting - is she keen to discuss things?
My brother's wife has MS and wont go to any group meetings - she just wants to get on with her life without thinking about it - it is very difficult for my brother.
Take care, and love to Jess, Patsy :)
Dear Patsy
Jess is very anxious and scared to go to the meeting. I would dearly love her to go, I want us to build friendship and chat and enjoy the company of new friends. I will not push her to go …so patience for me and wait till she is ready .
Will defo advise him to join up because he defo needs the support. I am up in Manchester an in contact with Sue my local ataxia support group leader. I missed last months meeting but hope to attend next month x
Jess said:
Hey Nicolee
Like your husband I was scared, but we both forget who is actually suffering . There are great friends here who will help you and hubby discuss and give you wonderful support Marie & Patsy my guidance and support , how wonderful they are ... Then John Micahel & Jason ... Without them I would have been struggling.. Nicolee it might be an idea for hubby to
follow the discussion from when I started it ... The ladies have been a rock to me . I have found a support group based in in Cricklewood London ...My wife & I if possible will attend, i have no idea what to expect and the wife very anxious about and scared ... Its also our first one . I have no idea where you live if you need detail will post them here.
Support groups are not just about meetings - although it is nice to attend when possible so you can put names to faces - support groups and indeed branches, send out newsletters which keep you in touch.
Ataxia UK have a helpline which will give you all the support you need in a very caring and professional way.
Take care, Patsy x
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
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 :)
Patsy I will keep trying won’t give up hope …I know she needs the help n reassurance that’s available out there … x
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.
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 :)
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