I'm a graduate student studying for a master's in speech-language pathology. In one my classes I'm working on a group project about ataxia. My professor encouraged us to find a support group about ataxia to find out how it feels to be affected by it.
If you don't mind sharing with me I'd love to know how this condition affects you and your loved ones. Anything you feel like sharing would greatly appreciated. I know sharing may be difficult for you, but I'm here as a friend to learn.
Hi Student,
I have Sporadic SCA. They seem to all be a bit diffrent. For me, I use my foods as medicine. I’m Gluten free, preservitive free refined sugar free and flour free, and I find it has helped my speach and all of my symtoms along with regular exercizing (focused movements) daily.
I tend to get light headed throught my day and work on not being stiff. With my speach and handwrighting I practice daily saying my voles and exaggerate everything I say. I really try not to speak fast, and I try to speak lower while focusing on projecting my voice. I’ve gotten into a habbit wich helps alot!
I really don’t have problems with speech anymore that anyone else can tell, only me! :0)
The 'only me' ending to Jeannies post is interesting, my voice coach and seemingly everyone tells me my voice is fine, I try to speak slowly and separate my syllables and try to slow everything down with my hand writing also, but my speech isn't good but only we know that;
I am 52 years old and walk with a stick, can't write very well and suffer with speech impairment, everything gets worse through the day and when stressed.
It also affects my core muscles causing me a multitude of problems you can work out for yourself.
I feel sometimes I have lost everything
My job,my wife,my 3 kids and the old me!,
But that is just depression an ataxia symptom that is drug treatable
Onwards and upwards!
Regards
Barney
Hi the condition is difficult to deal with…as a lawyer… It’s very limiting…don’t work, use a wheelchair, can’t write much, slurrred speech, coordination compromised…so difficult to deal with…loss of independence…people must be made more aware…need empathy and not sympathy.
I have an unspecified form of Sporadic Ataxia. My Ataxia first started when I was 18, and I;m now 41. The way I improved my speech was through singing karaoke. I have intermittant manual tremors, but not enough to severely affect me throughout the day. I also thank my Ataxia because without it I wouldn't have the unique outlook that I now have. Because of my balance I ride an adult trike which I modified to carry more cargo. (I call it my Frankentrike) With my trike I run many errands for other people, and each year I cycle in the Ride to Conquer Cancer. I have found that cycling has helped my entire Ataxia situation. I'm on disability pension, and now do more things than most people do working a steady job.
I shown signs of Ataxia at about the age of 45. I am now 52. Mine is hereditary. My father had it. Along with 2 uncles, aunt, cousin. My speech is way off. I have no balance, which you need for everything you do in life. Well for me Ataxia it is very undignifying. Since as of now I wont use a cane or walker, So people say Im drunk. Everyone stares.And when Im with my kids people are really mean. Even the police took my child away one night because they would NOT waste the tax payers money to do a breathalyzer test on me. So I sat at the police station all night to prove I was not drinking. And dating. You can find someone to have sex with. But no person yet I found to stick by my side. I am not gluten free. I only have a cocktail at home. Because if it hits you Which one does. I cant talk, or walk. Pretty sexy hey. I have found nothing good about Ataxia. You just have to deal with it every min. of everyday!
I don't know what part of the world you are in, the North America, The UK and Ireland have Ataxia Associations which will help. I mention these places because their 1st Language is English and their associations may help. If you are multi lingual I suggest you look at the association of the language you can speak.
I could go on about how Ataxia has affected me, you'd just be bored. Needless to say I can't think of anything that is positive. Like others I'm trying my best.
Hi-I had an AVM bleed in the cerebellum, emergency brain surgery, in a coma for three weeks, and then diagnosed with Ataxia -type still unknown- shortly thereafter just over four years ago.
Although sometimes challenging to tell which of my issues is due to what, the feeling of loss and my need to adjust how to do things differently to accomplish the same goal are the same with a similar process of the denial-anger-bargaining-depression-acceptance stages and the need to re-invent who I am and how I now need to do things are a constant.
I’ve had various and numerous therapies including speech, occupational, physical, recreational, etc.; and I must tell you that although all are important, I hold a fondness for those who help with speech issues. At one time, I couldn’t talk at all and had to use an alphabet board to communicate-talk about frustrating-but with a lot of work and coaching, I regained most speech qualities. Although I need to talk slower than the norm, my volume is much lower than others, and need to be more consciously aware of my breath support and my coordination of the left vocal cord, it beats the frustration of using an alphabet board!
Hi the condition is difficult to deal with..as a lawyer.. It's very limiting....don't work, use a wheelchair, can't write much, slurrred speech, coordination compromised....so difficult to deal with...loss of independence......people must be made more aware.......need empathy and not sympathy.
I am 53 ex teacher of music.Poor speech , poor mobility but no other symptoms except intention tremor.Loss of dignity and poor speech is the worst.look back but had depression then .Need to use my mind more when I adapt.Glad to have my mind.Used to be a chatterbox but think my ataxia has made me a better person although do get frustrated with it.
I'm 58 years young and was diagnosed about 8 years ago with sporadic cerebellar ataxia (non-hereditary/unknown cause). I think it started a few years before I was diagnosed, as I can remember some occasions where things were not "right". For instance I was a snow skier, went out West, and fell down several times skiing. That wasn't like me, so I couldn't figure out why. Now I believe it was due to ataxia. Anyway, my ataxia affects my balance/gait (I use a cane to prevent falls), dexterity (writing/printing/fine motor skills), speech (slurred) and swallowing (choking/coughing). I had genetic testing for the known recessive types of ataxia (per my neurologist), which was negative. My ataxia is slowly progressing, so fear of the unknown can be frightening. I have no idea why I have this, and although there's no cure, I wish I did. Exercise for strength and balance seems to be the only thing that helps me. I also try to eat healthy. Stress and fatigue make it worse, so I try to get enough rest. I also try to have a positive attitude, because that's something I have control over, although I do feel "down' at times. Ataxia is very frustrating and challenging 24/7! Hope this helps... ;o)
I have gluten Ataxia which means, if I eat even a microscopic amount of gluten with in 14 hours I walk like a drunk, balance is gone, my whole right side is weak making my right leg drag and my right arm doesn't swing. My head drops.
The hardest part for me, outside of the actual physical limitations is; not being able to plan ahead for anything. I live my life day to day never knowing when an episode my hit and I'm bed bound for a least 3 weeks and extremely weak and fatigued for up to 4 more weeks, limiting my activity.
That frequently leads to isolation. Isolation can be depressing. This group is a life line (and Facebook!) We can share our gripes and victories here with no judgement.
Another weird thing is; if I'm walking "weird" and not using a cane/wheelchair/walker in public people make assumptions that perhaps I'm drunk. As well as when I with my husband and in a wheelchair regarding my mental capacities. They'll speak to my husband instead of me...ugh. Seriously? I try to make eye contact and smile asking how they are doing?
The neurological pain can make sleeping and focusing hugely difficult.
I've been blessed by a VERY supportive husband who's never complained about my disability. He's had to take on so many additional duties. That is not true for many here.
I commented already, but remembered something else. I tend to tighten my leg muscles to keep from falling. I also tighten my arm and hand muscles when doing a task. I have neuropathy in my hands. When I attended physical therapy, my pt would tell me to hold my stomach in, as I used my back muscles to stabilize myself. I also tend to lift and tighten my shoulders and my pt was always telling me to drop and relax them. My neck muscles get so tight, I have to constantly remind myself to relax them. I think the way I use my muscles causes them to get so sore. No wonder I get so fatigued! It's very difficult not to tighten my muscles, as I feel I need to in order to function! I think I tend to over-compensate for what's missing in order to move about. Hope my explanation makes sense, as it's hard to explain..., ;o)
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 hear you with Ataxia being on your last nerve. I do not deal with it well. I think I am talking clear. But everyone I talk to keeps saying. What. So I do not think Im talking clear. My writing day are gone. My Ataxia is hereditary. It is from my dads side. But a lot of people on this sight have no other family members that have this.
My PT also told me to hold my stomach in when I walk. Hard to do. My legs are just stiff.Reading all this is giving me a bad day. Everyone of us are basically the same in some way. We can all relate. How sad that there is nothing that can be done.
Lori
rose said:
I commented already, but remembered something else. I tend to tighten my leg muscles to keep from falling. I also tighten my arm and hand muscles when doing a task. I have neuropathy in my hands. When I attended physical therapy, my pt would tell me to hold my stomach in, as I used my back muscles to stabilize myself. I also tend to lift and tighten my shoulders and my pt was always telling me to drop and relax them. My neck muscles get so tight, I have to constantly remind myself to relax them. I think the way I use my muscles causes them to get so sore. No wonder I get so fatigued! It's very difficult not to tighten my muscles, as I feel I need to in order to function! I think I tend to over-compensate for what's missing in order to move about. Hope my explanation makes sense, as it's hard to explain..., ;o)
I hear you Lori and Prettygurl1969, as my speech is slurred (people say ''what" to me too) and I can hardly write/print anymore (I used to have nice handwriting /printing). Balance, what's that? Ataxia causes me to grieve for what I've lost. Oh well, I try to be positive as that's all I CAN control anymore...
I TRY TO TELL THE GUYS THAT KNOW ME WHAT IS GOING ON AN THEY THINK THAT IT IS ALL IN MY HEAD THEY REFUSE TO BELEIVE THAT IM GOING THRU THIS BUT MY EX'S THAT WANNA GET BACK WITH ME ARE STARTING TO SEE I HAVE BEEN GOING THRU THIS SINCE I WAS 26 IT ALL STARTED WITH A CAR ACCIDENT AN I WENT DOWN HILL FROM THERE. TALKIN ABOUT SOME ONE THAT IS VERY UNHAPPY. I HAVE BEEN PRAYING SINCE THIS HAS HAPPEN TO ME 1996 MY KIDS A GROWN KNOW AN I GET A LITTLE HELP FROM THEM NOT WHAT I EXPECTED BUT SUM HELP. MY SPEECH IS SLURRED, VISION GETTING WORSE, BALANCE IS OFF, SUMTIMES I SLOB, I HAVE TO GET TO THE REST ROOM BEFORE IT IS TO LATE, I GUESS SINCE I HAVE HAD THESE SYMPTOMS FOR SO LONG. IT SEEMS AS IF NOTHING THAT I DO WORKS OR HELP. SO KNOW I JUST DEAL WITH IT IF IT GETS BETTER IT WILL IF NOT O WELL IT IS WHAT IT IS. THANK YOU FOR YOUR OPINIONS LORI AN ROSE STAY BLESSED