My Ataxia was an issue before I knew what it was
I made lifestyle changes and did try alternative ways but it continued to get worse
It was a scary time and I couldn’t explain it , I could not do my job as I needed but pushed myself and got injured
I now do take care not to overdo it but I try to keep as fit as I can and get a Dr checkup every 3 months
Socially I’m not comfortable and my Ataxia makes people around me uncomfortable, I understand it and try not to do that
I try everyday to continue being independent , I need that, someday I might not be able but I’m still trying
Don’t ever take health for granted, maintain it as best you can
Have High Hopes!
John “JC” Colyer
"We are all in this Together"
Thanks for sharing John.
I do the same although my dear husband, Ken, is a great help. We are both in our seventies and Ken has diabetes so we support each other. However we also strive to maintain independence.
We take nothing for granted.
Yes, thanks too John. And you do a great job right here!! I found your comments about avoiding social events to be illuminating . I also find myself avoiding people because I find conversing with them rather taxing. Have you or anyone been to the Ataxia Center at Johns Hopkin's U Hospital in Baltimore?????
Hi John as Neta says you do a great job here. Wish I knew you better coz I think you and I could have been good friends
I am in a weird way relieved to have a name for what is going on with my body. I think I have always known something was different but it was not pronounced enough for my family, friends, or doctors to believe and just thought I was a complainer. Now…when they see me walk…I dont think they question my illness anymore. I see the look in their face of shock, and think…yes that is what I have been trying to tell you all these years, something is wrong I dont feel well.
Thank you John for the job you do on our behalf. I find social situations
challenging, it’s following conversations when in a group that I find difficult.
You’re right, being independent as much as possible is important, it’s good
for morale. xB
You do a great job, JC! In terms of social situations, I know how you feel, as I have slurred speech. I've become a very good listener, as you can't learn anything if you're the only one talking...,ha! I do manage to get my two cents worth in...,slowly, but surely! Thanks for your words of wisdom! ;o)
I agree with everyone here, John. You are a great guy, and your work is very much appreciated.
Although ataxia has not affected my speech, I prefer to be with one or two friends at a time rather than a larger group as turning my head from one side to the other to address different people makes me feel so dizzy.
You are a very strong man and I admire your courage and also your concern for others.
Hi John, You do a marvelous job on here and I do so understand about social anxieties with ataxia. Mine has become more difficult over the last 2 years or so and I do find myself being more of a hermit than I used to. But as you've said I do try to remain independent.
It does definelty ring true about not taking health for granted aswell.
I’ve been bouncing around in some pretty different environments; and, no matter what state, political-viewpoint, etc. that I’m submerged in, there’s the constant that people like to know - or worse, assume - what’s “wrong” with me and/or what’s not different with me.
For example, because I have an issue with balance and walking, of course that means that I can do nothing at all, obviously. Weird.
Anyway, in each place, the “cycle” starts over. Over and over, and it takes nothing short of a novel to explain every detail…AVM…coma…Ataxia…etc., then breaking down each of those things, as long as the other person has a spare hour. There is no cliff-note version that I’ve found; I still leave out things, unintentionally.
I’m very familiar with others not being comfortable and/or assuming with my external deal; what I’ve decided is for me to just work on my inside workings while I still can and try - try, as much as possible, anyway - to not be as concerned with what other people think or assume. Easier said than done. And like you say, your abilities are nothing to take for granted.
Well put, Glitter on Butterflies! ;o)
Thank you JC for putting us in touch with others like ourselves. You do a great job! Don’t avoid socializing ,please. It’s important that you have face to face friends. I think you will find that is you who is uncomfortable not them. I used to apologize for my speech, now I don’t. I never explain what is wrong unless they ask. They just guess stroke,ALS,ms ,Parkinson’s,etc. that’s ok.
Yes Neta I have been once in Bltiimore at JH Hospital and found it helpful and I am going on Friday. I agree with you and JC, it is hard to keep a social life, it is had to be in this condition.
Why did you ask about Baltimore?