I feel like there is definitely a learning curve and necessity for a certain level of observational skills to be fully supportive of someone with ataxia. I know my boyfriend gets frustrated with his friends and family a lot, and even me sometimes, because we don't always think about or remember things.
For example:
He's trying the gluten-free diet to see if that helps his symptoms at all and his friends always choose places he can no longer eat at. Or they chose walking routes that are really difficult for him to navigate (hilly, uneven, etc.).
Sometimes I forget to pick up my legs so he can pass me to sit on the couch (I'm getting better about it, but I do forget). Or, like last weekend, I forgot and turned off the lights before he was ready (he caught himself on the wall, thankfully, but I still feel terrible).
What kind of common pitfalls do you guys run into with people? What sort of things do you wish people without ataxia would do or not do to make spending time with you easier and help support you (both emotionally and physically)?
I can relate to all of that Leowyn,.. I have slow progression CA and my husband often forgets all about.
If I mention it, he says it is either because he doesnt think of me as being permanently disabled or, he thinks I should manage myself rather than 'give in'.
I sometimes feel that he is insensitive but I know in my heart that he does care and life is far from easy for him.
Hi Leowyn
I’ve been slowly progressive for many years and often felt my family and friends
didn’t fully understand the enormity of the condition.
A couple of weeks ago I passed out and my husband found me unconscious with my
head bleeding. Since then attitudes seem to have changed towards Ataxia. Like
Patsy, I used to be convinced that my husband was oblivious to my many challenges.
I’ve finally got a rollator for use outside, I realised a walking stick actually
made my gait worse and putting my weight on one leg wasn’t helpful.
Personally, I think half the trouble is that those of us with Ataxia strive so
hard to appear ‘normal’, that other people are often fooled into thinking we’re
capable of managing more than we actually can. I know this sounds strange but
even after many years of poor balance etc, I can still stand up and expect to
walk normally!
! i find the same issues that your BF experiences still and I've been sick 10 years. I've made the decision that patience, kindness, tolerance is great for education so that's what I choose to do even though at times I'm exasperated. I also made the decision that I don't want to be treated like I'm disabled at all, so I look at myself as an able bodied would. I open my mouth: Please move your feet. I can't walk there...etc. And guilt is for mirrors (get it? Guilt, gilt) . Sounds like you and your boyfriend are using guilt as a coping/controlling tool. Hmmm.
I find that even though my friends know I have Ataxia, they 1) have never heard of it so it can’t be that bad 2) pretend my walk & balance are normal 3) think if I walk and/or exercise enough, it will go away. It’s so frustrating that it has become as much an emotional problem for me as a physical condition.
I am most grateful for all the little and big things my partner does for me. To me its normal for my partner to do things that a person who does not have Ataxia would do without a conscious thought.
I want my partner to enjoy life, do things without having to consider me in all things.
As an Ataxian my life's scope is smaller -- I don't want my partner's life to suffer in scope. Although it does impose limits.
I try not to ask for those things that I am able to do for myself. I feel going down a path of you do not understand what I am going through is setting up myself for disappointment and self pity. For me I simply think now how destructive is that?
I do not want in all areas of life for my Ataxia to dominate everyone's thoughts. I have learned to ask for help if I need it even from strangers and so far I have not been turned down.
Personally, I think half the trouble is that those of us with Ataxia strive so hard to appear 'normal', that other people are often fooled into thinking we're capable of managing more than we actually can. I know this sounds strange but even after many years of poor balance etc, I can still stand up and expect to walk normally!
