I am new to the Support Network and would definitely like to hear from people, but the main reason I’m writing this is because I think my experience was one that a lot of people should keep in mind.
I’ll try and make it fairly quick, because it’s a long & complicated story.
I live in rural Canada. I ended up in ICU for 18 days and then I stayed longer on top of that in the general ward of the hospital for another week or so. I think it’s really important for all of us “with ataxia” that when you’re in a hospital or facility of any kind, then it’s imperative to remember that very few people have heard about the disease (doctors and nurses included). And with all the cutbacks and everything they have little time to try in any way to understand it. All that can be understood…
My biggest trouble with that is that I couldn’t talk and I couldn’t eat without help. Because I couldn’t talk, then I was at a real disadvantage. Just imagine it - so anyway I wanted as many people as possible to keep in mind how difficult it can be when you can’t speak clearly. Even the kindest people lose their patience with you. That’s the way it is …
BI’m so sorry, I really can’t imagine how much stress this must have caused you.
I’ve endured being a in-patient myself, and a friend had a very sad experience. The trouble is, we only come to recognise the problems that can occur after the event. It’s not likely that awareness re ataxia is going to happen overnight, so because we ourselves are now aware of possible difficulties, in future it might be in our own best interests to have our family doctor etc forewarn a hospital, if at all possible. Otherwise, take necessary printed info to ensure medical staff are aware of any specific difficulties. xB
I certainly understand even though my experiences are somewhat different up until now. Many people with Multiple sclerosis have ataxia anc that is my situation. I am in sort of rural Canada because I am inNew Brunswick and the healthcare here is very very poor. I am glad you wrote and this is my first time to write snything on this site! I have a nurse/neurologist who always tries to push psychiatric medications and not meds that help physically because I MUST BE CRAZY with my suffering. And it is hard to get any doctor here - a person doesn’t dare change them. I can talk but it doesn’t suit them anyway is what I am saying. If you have certain illnesses they treat you worse.
Take one day at a time. Wish I had a dollar for every time I heard that. Unfortunately, that’s pretty much that we all can do at the present time. It’s bad enough that we have been blessed with this illness but what makes it worse for me is the lack of other folks understanding. And yes, I’m referring to the medical community. They don’t seem to understand how we’re feeling inside. I can go on but to what end!
JenC: All I can say is to cope the best that you can do. However, also do yourself some good and keep coming back here.
My neurologist gave me her card asking me to carry it in my wallet. If I need medical care in a rural area Ataxia will not be understood and they should call. It is in my wallet
and I hope I never use it. You seem a very strong soul and I wish you the best.
I know that members of our local ataxia support group have had your experience due to slurred speech. One had fallen in entrance to cinema and they insisted it could be a stroke and was taken by ambulance to same hospital [UK] as he attended for neurological appointments. However, they could not access his records and he had to endure MRA scan, CT scan and all the other tests to rule out a stroke. He ended up staying overnight and missed our group xmas lunch
This doesnt help you unfortunately but hey just saying and do empathise. x
xB