Ever since this diagnosis, I have been seeing things differently, Like, when I stumble, I have always thought I was just clumsy. My solution to my clumsiness has been to avoid things that I find difficult, and so embarrassing, mostly social things like aerobics classes, or dances, or walks with friends or when anybody can see me. I always only exercise alone.
Or for years, I have had to take several trys to get my key in the lock, or I drop things alot. Maybe they are all related. This is amazing, I guess I can stop blaming myself. Or can I.
Seems like everyday there is a new revelation. I just read a post about hair and I so have the same problems. Wow.
Don't avoid doing things, you should not be embarrassed by anything that you're doing. If you're having issues doing things learn how to adapt so you can continue to do what you want. The more activity you do the better you will be. I have SCA-2 and I go jogging while pushing a baby jogger to help with my balance issues and I don't care how other people feel or think. You need to do whatever you want to do and don't care what other people may think. I sometimes wear a T-shirt that states, I'm not clumsy, the floors just hate me, the tables and chairs are bullies, and the walls get in my way. Remember whatever is going on with you is not your fault, and people don't understand don't let it worry you.
Hi Bella -From a female perspective, I think Jack hit home with the do-what-you-gotta-do thinking; however, I think that whole shift thing has to be a priority first. Not being embarassed to “fail” (not in the least bit failing-just an attempt or try that went wrong ; )…that alone can be a challenge sometimes.
I have been diagnosed with my type of ataxia since 1998 and if there's one thing I've come to learn is Ataxia is no ones fault and acceptance of that has help a lot. I too have am clumsy, sometimes extremely so, and my speech is slurred, so somebody who didn't know me and my infirmity might think "He's had a few too many"! but educating the general public may be hard but it also helps try. Anyway knowing my diagnoses lets me get on with my life knowing there's not much I can do except deal with things as they occur. Oh! and by the way I hav SCA - 8 and sometimes memory is part of my problem.
I know just how you feel Bella - I am always analysing what happens when I do this or that.
I try to avoid embarrassing situations but sometimes just have to face them head on. It depends on the individual character whether you can ignore feeling judged - very difficult if you are shy.
I dont slur but I have quiet voice and it gets quieter when I'm nervous or intimidated. I find it much easier to type than talk - can take my time and dont have to worry about trying to speak up.
I have been diagnosed with ataxia 8 months ago and I completely lost my balance. I have managed to walk again, unassisted, but do appear drunk to the eyes of those who do not know me. However, I have encountered nothing but kindness from friends and strangers alike. People open doors, grab my hand or arm and offer their help with great compassion. So far, this has been the general attitude. If there are some who believe I have been drinking, well, so be it, I really do not care…But there are a lot of good people out there and I am grateful for them.
So do what you feel like doing, there will be someone who will offer their help if you need it, I am sure!
Dont be ashamed or, lock yourself away. This is sort of a challenge that we were given to see which of us wins ataxia or me I am a public speaker and when I go to the podium I tell folks imediatly what is wrong with me. I even joke about it. On the phone I tell them I may sound like a drunk but, this is normal for me. People are kinder than you think if you are up front with them. Do not become a recluse my mother does not have the big A and she stays in the house all day watching tv not venturing out. She is miserable. You dont want that kind of life. So, get out there and have fun
I broke every coffee cup in our house before I was diagnosed. I still drop things a lot. I recently bought a hand exerciser to try to overcome the weakness.
You are not alone. My mother spent hundreds of dollars sending me to tap and ballet classes when I was young. I also took several dance classes in high school -- and I could not figure out why I tripped so much after all that training. I understand now! I too thought I was just clumsy. I took a bad fall off the couple stairs to our front door several years ago and twisted my ankle very badly. Ever since then, I have been scared of steps. I take them slowly and hang on to the hand rail. Now I know that it was my gluten ataxia all along.
Exactly Patsy it is so much easier to type than talk, even if I make alot of mistakes. I have time to think about what to say next.
Patsy said:
I know just how you feel Bella - I am always analysing what happens when I do this or that.
I try to avoid embarrassing situations but sometimes just have to face them head on. It depends on the individual character whether you can ignore feeling judged - very difficult if you are shy.
I dont slur but I have quiet voice and it gets quieter when I'm nervous or intimidated. I find it much easier to type than talk - can take my time and dont have to worry about trying to speak up.
YES! That is EXACTLY how I feel!! I use to work as a full time sales rep. Did lots of talking. Now, I feel much more comfortable writing. Hate it when the phone rings. I never though about why ... but I get my words mixed up sometimes, or get stuck trying to say what I am thinking. I am glad to hear I am not alone in this!
Bella said:
Exactly Patsy it is so much easier to type than talk, even if I make alot of mistakes. I have time to think about what to say next.
Patsy said:
I know just how you feel Bella - I am always analysing what happens when I do this or that.
I try to avoid embarrassing situations but sometimes just have to face them head on. It depends on the individual character whether you can ignore feeling judged - very difficult if you are shy.
I dont slur but I have quiet voice and it gets quieter when I'm nervous or intimidated. I find it much easier to type than talk - can take my time and dont have to worry about trying to speak up.
I understand,, Sandy. Sometimes I dread answering the phone at work, The wrong words come out, or the right words in the wrong order. Other times, I can't find any words. I agree, it is very nice to not be alone in this. One time instead of Can I help you, I said Can you help me. Luckily the caller was a coworkers husband, and he thought it was funny.
Sandy Dell said:
YES! That is EXACTLY how I feel!! I use to work as a full time sales rep. Did lots of talking. Now, I feel much more comfortable writing. Hate it when the phone rings. I never though about why ... but I get my words mixed up sometimes, or get stuck trying to say what I am thinking. I am glad to hear I am not alone in this!
Bella said:
Exactly Patsy it is so much easier to type than talk, even if I make alot of mistakes. I have time to think about what to say next.
Patsy said:
I know just how you feel Bella - I am always analysing what happens when I do this or that.
I try to avoid embarrassing situations but sometimes just have to face them head on. It depends on the individual character whether you can ignore feeling judged - very difficult if you are shy.
I dont slur but I have quiet voice and it gets quieter when I'm nervous or intimidated. I find it much easier to type than talk - can take my time and dont have to worry about trying to speak up.