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First Symptoms
When I was 17 years old (almost 13 years ago), that’s when I first noticing symptoms and that something wasn’t “right”. I would stumble and fall often and became tired easily. My family and I decided to go to the neurology department at a hospital to get answers. After 4 years and 4 different hospitals, I was diagnosed with FA.
When did Friedreich’s Ataxia start presenting for you and what actions did you take?
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5 Replies
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My Tai Chis teacher in high-school, when I was 17, told me to quit as he thought I had no inner balance! It wasn’t until I was 21 that I started losing my balance when I looked up in the sky, and that I started stumbling on my legs when I tried to jog, and thus, started going to doctors to figure out what was wrong. [I did track in high-school for one year, but I was no longer the best like in middle school; in piano I would only get worse even though I practiced a ton, same with ballet]. Maybe we have similar onsets! Back then, it took 7 years for me to get a diagnosis. I did it all alone, as my mom was with my brother who is 2 years younger, and needed her attention; she did not know why. I shared with her my results, and she freaked out. She was very worried about my brother who had a faster progression. They moved to Florida soon after my diagnosis. I was in CT. I was 29 when I met Dr. Lynch. I am 48years old now, still working with an accommodation, but it’s getting very hard with my dysarthria and bladder issues. Hopefully you won’t get there! Hang in there, there is hope for you! And enjoy every day. Karina
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@karina wow we do have similar onsets and diagnosis stories too! I work too in the hotel industry and it also is becoming harder for me to be in guest services with dysarthria and bladder issues. How do you control the bladder issues?
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I used to be very lean and I am very active person until 21 Y.O. Then my friends used to complain about my walking style(the drunkard like walk). then I started working out(almost 2-3 hrs a day🏋️♂️) thinking that my walk will be corrected, Fortunately my friends stopped complaining. During my workouts I gained a lot of muscle. I almost gained 15 Kgs(33 Lbs) which made me look heavier💪. So, I and my friends thought my walk was corrected.
After 5 years I stopped working out and this is when I started seeing the symptoms. I am 28 now and I started going to gym after my diagnosis. I FEEL MORE STABLE ON THE DAY I WORKED OUT WHEN COMPARED TO THE DAY I DIDN’T.
I conveyed the same to my neurologist and he said that there are some studies which back-up the fact that FA progression will be slowed-down if we start workout. But one some days I feel fatigued when I am working out, during that time I will get on a recumbent. I think it should be easier for most of us(FAers). So I would say stay as active as you can and WORKOUT 🚶♂️🏋️♂️. -
@menasri I’m happy to hear that you feel more stable on the days that you work out! Staying active and moving is the key to a healthy lifestyle.
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Hi Christina,
For my bladder issues, I went to see a urologist in my are, per my neurologist recommendation. My neurologist said to find a urologist who had done hundreds of botox injections in the bladder, in case the urgency gets really insane. I might be headed that direction soon. I took a drug called “myrbetric” which seemed to help. The drug doesn’t affect your nervous system, just your bladder. I also wear diapers and an overnight pad in case I have accidents, and that system worked well for a few years.
For the dysarthria, the steroid injections (epidurals) I was getting for my spasms in my legs seemed to really help for aa while. My speech therapist called the difference “night and day”. She taught me strategies to improve my speech: importance of sipping water, sleep, articulating, and breathing. I also use a speaker/voice amplifier. It works as it adds volume, and so even when you are exhausted, people can understand you. Volume, not just articulation, is a huge issue.
Srikanh, I also worked out every weekday at the gym for at least one hour in my 20s/ grad school. I even bought a gym quality elliptical machine with money from a donation. I really think that my obsession with exercise is the reason why I am still living on my own at 48. So yes, keep it up!! You will be incredibly thankful to you later in life.
Best, and hang in there,
Karina
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@karina thank you for sharing your experiences and remedies. You have given me a lot to think about!
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