Hi,
I’ve looked around & I’ve done some reading on here, but the real reason I’m here is to gain some support / connect with others. I could use more community (the person who has Ataxia), as could my husband (the spouse of the person who has Ataxia). But many/all of the posts are months, if not years, old. I’m also aware of NAF resources.
Thanks.
Everyone on this site has some sort of connection with Ataxia. They are either suffering with Ataxia or caretakers of someone with Ataxia. Information on this site is shared with you and all from all members and what makes their lives easier to cope. Unfortunately, there is no cure at the moment but that doesn’t mean that research isn’t going on every day. I am proud to be a member here and I learn from the posts that are made.
I look forward to learn from you and the information you post.
1 Like
Yes, @Chas521 - thank you. What I think I’m craving more than information, though, is understanding. I’m fortunate to already be connected to lots of solid sources of information.
I’m imagining a relationship like a person in recovery has with their sponsor. When someone feels close to behaving in a way they don’t want to, they call their sponsor. Most of the time, I try to handle having Ataxia with courage, grace, and humor. But sometimes it backs up on me, and it’s in those moments that I would appreciate having a larger community to reach out to.
I’m 51, and although Ataxia has changed the way I do EVERYTHING, I can still function largely independently, I recently experienced some significant losses, though, and have had a big uptick in my symptoms. The scary part of Ataxia is the uncertainty - the not knowing how bad it’s going to get.
Thanks, all, for “listening”.
My heart goes out to you as well as everyone who reads your posts. I’m 79 and have had Ataxia since I was 21, It is one of the most insidious illnesses that a person might have. Remember please, all of us here didn’t come here on the same ship but we’re all in the same boat. Most importantly, you can come here to read and vent anytime. You will soon learn that you’re part of the family!
1 Like
Hi 
Re ‘Is this site current’………
This site likely has reduced ‘traffic’ because of the increase of Facebook Ataxia Support Groups..there are general groups and also some for specific types of ataxia.
As is here..these groups cover an International Community, but with thousands of members and numerous groups…this means there is almost always someone on line somewhere.
Possibly the best way of getting ‘one to one support’..would be to join a local/regional Ataxia Support Group. Meeting with people face-to-face can lead to having a good rapport with someone in the group, and be a reliable source of support at any time. I’m in the UK…I’ve made longterm friends by doing this.
I’m diagnosed with Idiopathic Cerebellar Ataxia, and despite exhaustive testing (including Whole Genome Sequencing) no link has been found. Some of my symptoms can be traced back to childhood…but most of them took decades to emerge, accumulate. My GP ignored my concerns……I started to have falls before it was finally decided to refer me for investigation in 2011..I was 61.
Cerebellar Atrophy is visible on my MRI, because my symptoms have been present since childhood my Neurologist suspects the cause could be genetic, and as you have mentioned..Recessive.
If you aren’t already a member of a U.S. Ataxia Support Group..have a look at this link. On the Interactive Map click on Florida..
On Facebook…there is an Ataxia Caregiver Support Group.
1 Like
@Beryl_Park thank you for your response!
1 Like
I’m new to this site, but I already have learned a lot. I’m like you (still independent) but have concerns where this might go. I have slurred speech that I work (sometimes unsuccessfully) hard to lessen. I’ve been through two rounds of speech therapy, and plan to do more. I also worked with a trainer at the gym on exercises to help with stability. I have trouble swallowing but taking the first sip very slowly has helped. As I told my husband, there’s not one step, sip or word that isn’t prefaced without thinking about “saving” myself by using these strategies. I’m not happy about any of this but I do appreciate the control the strategies give me. I believe that as long as I can have some impact on my symptoms I want to keep trying. So, when you say “courage, grace and humor” I totally understand!
Thanks, @Maddie, for your kind words. I live in FL and I have several appts at the Mayo Clinic here in June, which is great but it makes it kind of difficult to cope by viewing having Ataxia as “no big deal”. I mean, while I’m fortunate to go there, no one WANTS to have doctors at the Mayo Clinic. Anyway, one of the appointments is with Physical Medicine and Rehab and I expect that they’ll order a few things including Speech Therapy. It’s funny that it changes; sometimes I sound fine, but at other times I speak very unclearly. Hopefully, the speech therapy will help.