My wife Jenny, (she does not want to hide behind the title - the wife) has been lookingh at my blog site ataxiafightback.wordpress.com and said she would like to see a page or posts for those who live with an ataxia sufferer.
How are they supposed to cope? Do they have a sense of loss, of anger, of helplessness?
What should they do to help / not do to interfere?
How do we want them to be around us, how do we want them to talk to us?
Have you had this conversation or are you assuming like I did that this is my problem so doesn't affect Jenny. Yet I expect her to remember my little problem and cut me some slack when I'm wobbly or tired or slur my speech. Is this fair?
One of the great strengths of our relationship has been the long conversations we have about all sorts of subjects. This was threatened when I found my speech slurring, and it beacame an effort to talk. I kept my thoughts to myself and reduced conversation to a bare minimum. Jenny felt bereft. Then I came out of my sadness and introspection and realised my future would be bleak and many of the goals and ambitions I had could still be achieved if I made a bit more effort.
Since then I have talked as much as possible, found exercises to do to keep my jaw from tightening and trained a new part of my brain to take over speech from the bit that has gone wobbly. When people ask me to repeat what I've just said this helps me engage that part and I no longer respond in a slightly angry voice, and generally participate more fully in life. Jenny has noticed the difference, but still worries I may suddenly find it all too hard and go silent on her again.
For me going silent was no big deal. I'm an internal thinker and talk to myself in my head all the time, so for me it was no quieter than usual! Jenny is an outside thinker and needs feedback and conversation to process her thoughts. This is one of the many differences we have as a couple. None of them are wrong, wer are just different! If you want to know more about how you communicate, and why your partner / friend / sibling or relative is so difficult to understand have a look at our website for couples.
We were marriage guidance coaches working with couples until we retired in March 2015. This website is a download of our experience and contains many stories, articles and useful resources, mostly free. The section I have pointed you to is all about communication and the impact different styles have on relationships.
So ask your partner / carer, "How is it for you?" "What can I do or say to help you deal with your side of my ataxia?" "Is there something I've stopped doing you would like me to restart?"
Let me know how you get on. Maybe this needs to be a page on the blog site, your input will help with this.