I'll be honest

No Chaas521 I fell the same way. They can get up and walk to do things and I have to stay where I am put. It does get frustrating. They try everything to help, but I still feel the same.

I am just now reading your message. I think you are frustrated with how you have to now be more careful with everything because you have Ataxia and yes, that thinking is not good thinking at all. If you say they are nice friends why would you want harm to come to them even if you say “it’s for only one hour!” Your life will become better if you except that Ataxia will not go anywhere while it’s in you. There is equipment you can buy to help make things easier as days grow for you but leave the negative attitude dead where it should be.

Thanks for the reply but I think that you might have misread my post.

I think I might did help me understand you.

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Yes, I did. I read it again. I was more caught up in what you were saying more so what you will never do. I apolojize to you for that. I have Ataxia and with it I have Nystagmus which prevents me from understanding things like I should. I know Nystagmus deals with eye mogyvement but Ataxia is in the back of your brain which controlles many things. I can’t give you concrete stuff but I do apolojize. Please except my apology?

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Of course!! We have a lot in common. I’ve had Ataxia for over 50 years now. There is absolutely NO way that I would want anyone to have it. I was planning a professional sports career when this illness reared its ugly head. But…

You be well my friend.

This was my introduction Hi - my introduction

Thank you for responding. For me after reading your message your age comes to mind first but I will not ask. Secondly, what I was doing the time Ataxia raised it’s ugly head for me. The first glemace of it happened while I was in the military, After I knew about Ataxia. Axtaxia retired me after a minor car “bump and go” at age age 39.

I read your intro so now I am aware of your age. I guess I am a baby Ataxia person in small. I do believe in excersising the body as much as possible it always helps. Like you sometimes just doing it is what you only can do!

There are times when this Ataxia thing gets to me more than other times. I never think of doing anything stupid but during those bad times I don’t want to be bothered and really want to be by myself. I get out of that “depression” but I don’t like that feeling at all! As I’ve said before, I’m very jealous of “healthy” people.

I play golf with my friends. Maybe I should say “at golf!” I was very good at athletics before this Ataxia developed and although I’m not very bad at golf [can’t play other sports anymore], I know how good I would probably be compared to them. Sports has always been a very important part of my life. It has always helped me to cope with negative life experiences. So when I lost that ability, it struck me very hard.

This why this Ataxia gets to me sometimes more than other times. I’m happy and appreciative to be able to do some things but is it a bad thing to want more? Thank you for reading my rant. It does help for me to be able to express myself to folks who understand.


The classic answer to your problems is to volunteer to help others worse off. I think about that a lot for me, but it is really hard to be helpful to others when the list of things I can’t do includes driving, walking, talking right, typing, writing, and going to the bathroom. Fortunately (I guess) I have always been a klutz, so athletics was never important to me.

Could you do some coaching? Sharing your love of athletics with others is good for them and might be good for you, too. Also, have you gotten any input from other former athletes about what they do when they can no longer do their sport?

I realize you didn’t want any advice, because I like talking about the frustrations, too. I couldn’t resist, though. Although I can not relate to the missing athepletics part,there are so many things I can’t do that I would like to do.


Many thanks for your post and suggestions. You brought up some good points. I apologize because I didn’t make myself very clear. You folks here DO understand and that’s why I posted because I would talk to you anytime. I get “turned off” when my healthy friends start giving me advice [they mean well but they don’t know] on how to cope. When this illness starts to get to me I don’t want to hear from them but you here are different.

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:smirk: This morning, all I’ve done is change a bed. I wrestled with bedding and a duvet, before finally getting everything off. I wanted to change to winter weight bedding (it’s chilly here), and decided to put the clean duvet cover on first. Only then did I realise it would have been a good idea to freshen it up, because it had been packed away for several months :woman_facepalming: Another wrestling session, and several wobbly incidents… The washing machine is finally on, time for a welcome sit down :coffee::wink: xB

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… and life goes on.

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:joy: yes, life goes on. Another day, and the sun is shining, it can make a big difference to morale :+1: :blush: xB


Just when you finally accept this illness and cope the best way that you can, it finds another way to screw with you. I think that someone above who is also a sadist is laughing himself to sleep every night. I now find myself coughing a lot when eating or even drinking liquids. Also, I find myself blowing my nose a lot more as if I had a cold. FYI, I don’t! Gimmee a break! I have enough on my plate. :hot_face:

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Just a thought, could your nose blowing be connected with postnasel drip :thinking: xB

I guess that anything is possible.

A few ideas to try.
I recently had the pleasure of consulting with a speech pathologist.
She indicated a number of suggestions to assist me in swallowing better including:

  1. Lower your chin to your chest when swallowing.
  2. Swallow foods and liquids with certainty, do not gulp more than once.
    3.Take breaths between sips of beverages. For example, set your glass or cup on the table between sips and take a breath.
    Ironically, I tried eliminating certain foods to hopefully assist with my digestion/constipation. As a bonus when I eliminated dairy, my cough went away. My congestion cleared. I generally felt better.
    I had good luck with certain food elimination, however, I did have to find alternate sources of calcium because of cutting out the dairy. There seems to be much controversy around consuming dairy products or not.
    Either way it would be best to consult with your healthcare professional when changing your diet, one certainly does not want to upset or deprive their body of essential needs as far as nutrients go.
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I understand that dairy foods help to maintain strong bones because of the calcium. Do you have to take calcium vitamins now because you stopped eating dairy?

Not really. I’ve learned that one can obtain calcium through other sources. I.e certain vegetables. However, the only thing I question is the body’s ability to uptake these alternative calcium sources. I understand calcium is very difficult for the body to absorb. I used to grow apples for a living, in varieties that were calcium deficient, the situation was the same where trees/apples had a difficult time to uptake calcium. A correlation in most living things? I’m not sure. Therefore, I would suggest that maybe taking a calcium vitamin is the way to go.
Ultimately apples responded best to basic treatments or basic elements of calcium. The cheapest, simplest forms of calcium would work the best. Many salesman tried to sell expensive, wonder formulations. Maybe humans respond the same?