So, my mother and uncle both have SCA, type unknown (they've tested negative for the commonly testable ones). Both of them first started getting symptoms in their 40s. Currently my uncle, now 64-ish, uses a mobility scooter to get around, and has severely slurred speech. My mother, 62, has no sign of speech impediment, but has a typical broad, slow, ataxian gait and poor balance and manual dexterity.
As I've got closer to and passed 40 I've started observing my movements with much greater scrutiny. Every time I drop something, I wonder "is this a first sign, or just a moment of klutz"?
I've looked through the medical literature, and while there's a good amount of work on the symptoms associated with specific SCA types, I can't find anything much on earliest symptoms. I'd be really grateful if members, particularly those with primarily cerebellar symptoms, would be prepared to share the first signs they saw of developing the condition?
Mine was loss of balance.Problems with speech and tremors came much later.I am 54 now but had the first early signs when I was 48.Have used adaptions as it has got worse.My sister is 52 and unaffected.
One day, I was in a posh hotel room and I found an ever so slight sway when I walked, as if a gong or pendulum was swinging in me. I blamed it on the plush carpeting and ignored it for 2 years until the swaying became more pronounced. My CA is believed to be auto-immune related.I wonder.... Whatever it is, it doesn't seeem to be hereditary although everyone in my family (brother, sister, mother but not my father) has an auto-immune issue. Their cases are very mild (except my Mom who has suffered from alopecia areata for many years-- but she isalmost 90) but only I got this. I have elevated "bad"antibodies in my blood. I also had several long, very long, outbreaks of hives. Hope this was helpful.
I also had a loss of balance. When on vacation, I noticed trouble lifting a leg to put a sock on while standing. Also, my vehicle had trouble staying in my lane. I am 55, noticed the first symptoms at 51, and was diagnosed at 53.
Speaking restrospectively, I think my earliest symptoms were walking or running diagnonally. I always crossed lanes at school and always knocked into people walking alongside me.
My right foot grew inwards and it wasnt until I had surgery to straighten in my late 50's that the physio recognised my unusual gait. So I would say, the way you walk is first symptom.
The neuro said I probably had it from birth but didnt really show itself when I was young.
Soy un ex-deportista, por lo que mi físico estaba acostumbrado a ciertos esfuerzos físicos. Mi ataxia comenzó hace 2 años y es de origen desconocido, y repensando mil veces cuando comenze con síntomas, debo decirte que con claridad comenzaron hace 5 años, con un síntoma muy evidente: GRAN CANSANCIO. Lo que me impidió seguir jugando tenis. Tengo 67 años. Mucha suerte para tus familiares y para ti. No te obseciones con que vos tendrás ataxia, disfruta el presente y mañana veras.
I am almost 71 now. About 2 or 3 years ago I found that when I turned I was unstable and likely to fall. This progressed to the point that if I leaned over I probably would just keep going. For a while I carried a cane and only used it to catch myself.( I got teased because I just carried it around). Jan 2012 I got notieceably worse and depended on the cane. By Oct last year I was using a rollator and seem to need it more and more. In Jan last year I also noticed I couldn't write. My speech has not been too affected. If I am too tired it is a somewhat slurred and it seems to be harder at times to get the words out. My husband often doesn't understand me so it may be worse than I want to admit--we blame some on his hearing loss. I know my volume is low.
So far, I am undisgnosed as to cause. They checked ears, possible herniated disc, blood tests for vitamin deficiencies, gluten tests, etc. To my knowledge there is no Ataxia in my family anywhere. I think my biggest concern is that my kids or grands might be venerable to getting this at some point.
Soy un ex-deportista, por lo que mi físico estaba acostumbrado a ciertos esfuerzos físicos. Mi ataxia comenzó hace 2 años y es de origen desconocido, y repensando mil veces cuando comenze con síntomas, debo decirte que con claridad comenzaron hace 5 años, con un síntoma muy evidente: GRAN CANSANCIO. Lo que me impidió seguir jugando tenis. Tengo 67 años. Mucha suerte para tus familiares y para ti. No te obseciones con que vos tendrás ataxia, disfruta el presente y mañana veras.
My mother, who has now passed, had symptoms I can now recognise in myself. It was never
questioned whether she had a neurological condition. An MRI confirmed I had SCA but up till
now I don't know which type. I'm worried about my own children, both adults, but even if it
was identified which type I have, neither of them want to be tested. xB
granny h said:
I am almost 71 now. About 2 or 3 years ago I found that when I turned I was unstable and likely to fall. This progressed to the point that if I leaned over I probably would just keep going. For a while I carried a cane and only used it to catch myself.( I got teased because I just carried it around). Jan 2012 I got notieceably worse and depended on the cane. By Oct last year I was using a rollator and seem to need it more and more. In Jan last year I also noticed I couldn't write. My speech has not been too affected. If I am too tired it is a somewhat slurred and it seems to be harder at times to get the words out. My husband often doesn't understand me so it may be worse than I want to admit--we blame some on his hearing loss. I know my volume is low.
So far, I am undisgnosed as to cause. They checked ears, possible herniated disc, blood tests for vitamin deficiencies, gluten tests, etc. To my knowledge there is no Ataxia in my family anywhere. I think my biggest concern is that my kids or grands might be venerable to getting this at some point.
For other readers, Alberto's reply translates loosely as follows (I speak Spanish):
"I was previously a sportsman, so I was used to having quite a strong physique. My ataxia began about 2 years ago and is of unknown origin, and thinking back really hard to when my symptoms began, I can say with certainty that they started 5 years ago, with a very obvious symptom: extreme exhaustion. It stopped me from playing tennis any more. I'm 67 years old. Good luck to you and your family. Don't worry about whether you have ataxia, enjoy the present and take the future as it comes."
Alberto Casellas said:
Soy un ex-deportista, por lo que mi físico estaba acostumbrado a ciertos esfuerzos físicos. Mi ataxia comenzó hace 2 años y es de origen desconocido, y repensando mil veces cuando comenze con síntomas, debo decirte que con claridad comenzaron hace 5 años, con un síntoma muy evidente: GRAN CANSANCIO. Lo que me impidió seguir jugando tenis. Tengo 67 años. Mucha suerte para tus familiares y para ti. No te obseciones con que vos tendrás ataxia, disfruta el presente y mañana veras.
A question: do you not have a "language" option on this site??. I have one at the top with a Google translator. Go well.]
You're right. There's a little box option right at the top of the page that gives you a language option, "powered by google translate".
I've just tried changing it from "select language" to "English", but the Spanish bits remain in Spanish, for me anyway.
Alberto, let me know if you get stuck in any other thread and need me to translate to English for you ( unfortunately I'm less good going the other way; my Spanish grammar is appalling.)
[Alberto, digame si necesitas que yo traduzco algo a Ingles en algun parte (desafortunadamente no traduzco bien de Ingles a Espanol, mi grammatica Espanola es espantosa!)]
My name is fahareen 44 and i have SCA2. I have known this for 2 years. But for the past 7 years i always walked like i was drunk, stopped dancing and wearing heals. Now i cant carry a cup of coffee across the room, must sleep 2 hours a day, horse ride, gym, play bridge keep strong but use a wheelchair at airports. Its cool you get to use fast track. I have come to terms with it. My handwriting sucks
I am unable to find anything on my computer to write this is Spanish.
But, I have read your post, and I send you very best wishes. XBeryl
Alberto Casellas said:
Soy un ex-deportista, por lo que mi físico estaba acostumbrado a ciertos esfuerzos físicos. Mi ataxia comenzó hace 2 años y es de origen desconocido, y repensando mil veces cuando comenze con síntomas, debo decirte que con claridad comenzaron hace 5 años, con un síntoma muy evidente: GRAN CANSANCIO. Lo que me impidió seguir jugando tenis. Tengo 67 años. Mucha suerte para tus familiares y para ti. No te obseciones con que vos tendrás ataxia, disfruta el presente y mañana veras.
I am 59 and was diagnosed 10 years ago with Sporadic Cerebellar Ataxia (non-hereditary?/unknown cause). I was diagnosed when I was 49, although I believe I had very small symptoms in starting in my early 40's. I went to my doctor at 49 because for a year I was having trouble swallowing. Also, when I would go downstairs, my knees would shake. No one in my family, as far back as we know, has/had ataxia except me. Therefore, I think of myself as "special"...,ha! My ataxia has progressed to the point were I use a cane when I leave home, to prevent falls, but am able to walk in my home without it. Over the past 3 years, I've taken a few bad falls, but I've only fallen once while using my cane. Hence, I'm extremely careful when not using it! My ataxia affects my gait/balance, dexterity (writing/printing/fine motor skills), speech (slurred) and swallowing (sometimes coughing/choking). I find the only thing that truly helps is exercising for strength and balance, as well as stretching, as my muscles get very tight! My best to you..., ;o)
My earliest signs were at least ten years before I noticed a real loss of balance. I just couldn't walk next to someone. I would bump into them, and veer off to the right quite frequently. Then, much later, I noticed I needed to have 3 points of contact to assist me in navigation. That's when I started with wall touching, and two hands on railings and all the other instinctive aids.
Like many of the comments above, my first signs of Ataxia were loss of balance and the ability to walk a straight line. I am now 55 and was diagnosed with Ataxia when I was 52. The signs first started showing up when I turned 50, but I believe I have had this condition all my life. I was always awkward as a child. I could never do things as well as other children. I have never been able to ride a two wheel bicycle because I can't balance it. I think my Ataxia is hereditary as my father stumbled when he got older and both my brothers seem to stumble also ( none of them stumble to the extent I do. ) Unfortunately, I got the worst of this.
I am a 44 female and was diagnosed 2 years ago. But i had the best childhood, bungy jump, horse shows, all sports. I was not affected till 5 years ago when i walked funny, could not dance and wear heals. I have SCA2 and also cant take wine as i used to