How Does Ataxia Affect You?

I slur, my husband often doesn't understand me, he is a bit deaf (he says he is NOT)

It is the same in french (we live in France) I belong to a club snappily called the Association of the paralysed people of France, we have very jolly outings, we all get along fine - despite the lack of understanding!

There ARE good things about Ataxia, no body expects you to be sartorialy elegant in a wheelchair and here everybody is very helpful.

best wishes

Fiona

Not sure where I gotCA from.I dont slur;Ijust can't speak.Writing is non existent but in the summer I can go a long way on my scooter..Having done a full time job before its nice to have more time.I have just retired on grounds of ill health and spent my teacher's Pension llump sum on a conservatory where I can look at the birds and my garden even if I cannot do much.

I am the envy of all my peers as I have time but not ability!!

Nonsense you have the ability to reply Marie

Well at least u have the ability to apply im sorry if that is what u r going thru. I wonder if that is gonna happen to me or any of us on this site. You stay blessed an safe. I hope you health is getting better stay blessed marie

Hi Bernard etc.

Have some ability but it takes a long time and lots of editing to type.Used to do a lot of writing for therapy but am learning to adapt and use different tools.

Hi John

Thanks for the support.Still reeling from being told off by a lady who said I should not be driving my mobility scooter down that lane.Not sure if she was concerned for my welfare or I was a nuisance.Stirred up lots of self pity.I am always a very considerate driver and flag on drivers when I think it's safe.Turned on muy computer for a bit of esscapism!!

ditto.ataxia is so horrible - I must have done something really bad in my nearly 58 years!!!

Prettygurl1969 said:

I HAVE SPEACH PROBLEMS MY SPEACH IS VERY SLURRED, AN MY WRITING IS HORRIBLE SO IS MY BALANCE I TRY NOT TO TALK ABOUT IT MUCH CAUSE THIS ATAXIA IS GETTING ON MY VERY LAST NERVE. I DON'T KNOW HOW I GOT THIS IF IT IS HEREDITARY I DON'T KNOW WHERE IT COMES FROM MY MOM SIDE DOESN'T HAVE IT SO IT HAS TO BE MY FATHER SIDE EVEN THOUGH I DON'T KNOW HIM.

I agree completely with JC.

It’s very easy and probably very typical to think of what I call the Karma theory (ex: I must have done something horrible to deserve this.)

I used to hold this perspective with all of the glamor of shame, self-blame, etc., but I had to let that thinking go and move on…what a challenge in itself, though.

Initially, my change of perspective was necessary for survival since this just bogged down my energy; now, it’s a belief that every challenge has a lesson behind it that we’re not privy to at the beginning and that there’s not the idea of hope without a struggle.

I agree with everyone. Ataxia is a sad thing when you have it. Normal people dont think Ataxia is so bad. BUT! when you have it. Its sad. We know what were suppose to do. But it's a struggle. No matter how hard we try to do something. It's not right. We cant even tell a story. But we have to be strong. This is not a curse. (even thou it's like one) And hold our heads up high. Let the people say what they want to. There is nothing we can do about this! We need to vent with each other!

Its like: If you aim for perfection. Its a moving target!

I too see life as one challenge after another everyday. I started out thinking I must have done something wrong to get this too. I couldn't see anyother reason for having it. More so when I got diagnosed. I really felt my life was over as I knew it after it sunk in what I had. Actually it was the end of what I knew, but I was told and then I realized it was just a new chapter that was new that I was going to learn how to do things diffrently. I was devistated when I was told what would happen because I totally believed what I was told about ataxia from the Dr's. Maybe that was enough to help me totally surrender my life to God because I felt there was nothing left to do my life was over anyway! So since I've been asking and praying for him to use me everyday there are so many little and sometimes big things that come out of my having ataxia that now most of the time I know that I have this for a reason and I realize that things like that never could have happened by not having ataxia. So then I'm greatful for it! :0)

I see when a symtom acts up as just a reminder where I need to place my attention (not on what I want but what God wants me to do with his help and he gives me power to do it). I know how people are resistant to hear the word God because I used to too! :0) But I really think as long as someone has a higher power no matter what it is (it can be a blade of grass etc.) as long as it's outside of themselves it helps not only getting their minds off themselves and thinking of other's but I've read that it actually helps the brain's neurons multiply. They have said that it shows up in MRI's and I totally believe how it helps the brain. I have seen where by asking/praying for help with taking each step (literley) and because I focus on my higher power (which for me is God) and do as much as I can and he helps take over to do what I can't do.

Thank you for this conversation so I have the oppertunity to share my view too! :0)

I have sc ataxia(hererity), progressive dysphasia and dysarthria which are a ffects from my ataxia,i've just been re tested using themount wilga high level explination, reading, writing and numercy skills, in 2007 i had mild difficulities and now i have moderate, this is what affects me the most. the phsiycle side of things i can control with excersize and a healthy diet, but the rest i cant do much about, i have bad comprehesson ,memory and grammer which has effected my life alot, because of this i have relie on people a lot , like filling in forms, making phone calls, writing on forums( so far this has taken me 1/2 hour) theres so much i want to say but i just cant find the words, and of course because of this i've made myself into a social outcast, i hate talking to people as i cant hold a sensible conversaton or i cant comprehend fully and also i cant stay focused , i dont talk on the phone only to people i know and so on. Thankfully i have great wife, who always helps me.

hi Jason

I know what you mean about the phone.

I don't have cognitive difficulties but I can't even get to the phone.By the time I get there the caller display has gone off or when I do answer it is some sales thing.Now I don't answer.I have found they soon go away if you try saying disabled.Otherwise if it is someone I know well they will usually phone several times coz they know I will be staggering to the phone.

Well I had to call the hardware store to see if they had any air conditioner left because I was looking for my daughter. So I called got to the department, explained to the guy what I wanted. He went to go look. In the mean time he says to someone that I could hear. "The women on the phone is really drunk. I'm not going to go look. " I started crying. My daughter took the phone and I was very proud of what she said. Then once I called for a pizza. And it never came. So my daughter called back to see where it was. They told her "a drunk person called in the order so we didn't make it." Very proud again of my other daughter. Needless to say I don't make calls anymore less I have to. People are really mean.

I am. People just do not know who hard we try!

went to fast food drive in and the person said cant understand think she drunk

did i give her what for

then i cryed

Hi Jason, Ataxia is very frustrating and challenging. My speech is slurred, but my friends and family understand. I tell people I don't even know that I have ataxia, which affects my speech, therefore, if they want me to repeat what I've said, I will. You sound like a very intelligent and thoughtful man! And you have a very supportive wife. That's half the battle! This site is great because we all have a form of ataxia and we understand what it's like. It's a good place to "vent" and find the support we need! Best wishes..., ;o)

Loz and Lori,

I am so sorry you've had people treat you like that! People just don't understand, so they make assumptions. I know if I'm walking with symptoms of ataxia and I'm not using a cane I'm going to assume people think I'm drunk by the way I walk! Makes me motivated to use my cane.

I have had that experience too, where people talked to me like I was stupid because of how I was talking. Or they just talked to my husband because I was in a wheelchair. As if a wheelchair kept me from thinking.

Although my brain function is currently my biggest problem. Especially, short term memory. I forgot my husbands birthday was today. He finally sat me down and said, "You know how sometimes your brain fails you and you get mad at your brain?". I said, "yes". He said, "Well, your brain failed today. It's my birthday.". I fell into his arms and started crying. I forgot. He reminded me, I've forgotten my own birthday.

So, we have to laugh, or we will cry. I have to laugh at myself. :-)

Oh Julie that is so cute. I know how you felt. I forgot my Birthday to. And for your wonderful husband. I'm sure he got more of a kick telling you . You forgot his Birthday. Then if you would have bought him something. Oh Im sure your making up for it! Good day to you Julie!

Lori

Dear Julie, Wonderful story! So good that you can laugh at yourself, as that's a lost art...,ha! I totally agree!!! With ataxia we have to laugh to keep from crying! Hugs... ;o)