Newbie with SCA3

Hi

Anyone out there who has the same ataxia as myself. Am 30, was diagnosed last October after having symptoms for about 5 years. My older brother has it - he was diagnosed 10 years ago he is 37 and the illness has pretty much taken away his ability to walk. He uses a mobility scooter and wheelchair, my dad also has it - he's 75 only showed signs of it in his late 60s.

The information on ataxia is limited, not very trustworthy and too general. So am hoping there is someone out there who can perhaps provide me with more information.

Thanks

Rena

22 Replies

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  • Hi Rena ! My 2 brothers and I have SCA3 too!! My mother had it,as u may know it's genetic, out of us 4 siblings 3 of us have it. I take a whole load of vitamins E B3 B12 magnesium and hemp oil capsules... I was diagnosed in 2010,my brothers were diagnosed around the same time. From being able to do everything not able to do much!! I used to go out on my own now I need someone with me all the time. U r.not alone in this fight...If u need to talk I am on Facebook too as Jaishree Patel my email is jai0263@hotmail.com. ...stay active... u know what they say if u don't use it u lose it.

  • Rena,

    In my family there are 7 people with SCA3. There is lot of info on web (but unfortunately no cure )

    ataxia.org/learn/ataxia-cau...

  • Hi Rena,

    I have also been diagnosed with it, but I am 62 and still walking around unaided, although in 2009 I was told to get a wheelchair. At one time my legs were heavy and painful and very dizzy and progressively getting worse. However I read alot on this site - walkingwithataxia.com/ and as a result of this research, I decided to do the exercises and also bought a minibike, within a week I began to improve. I am now doing physio therapy as well and the improvement is phenomenal, I only wished I had started when I had the first signs of the condition. Maybe it is wise to discuss this with you doctor, who will know better than me, but this is my experience. (my father also had it and gave up, and became dependant very fast) I am dtermined to be independant for as long as I can. I am now able to do everything at home and even am able to look after my 6 month old grandson. I do not walk around carrying him, for fear of falling but I am coping well. I think my determination and positiveness has been a great help in this case. Keep positive and strengthen all your muscles. Best wishes, Isabel

    ´~,.-

  • You go girl we need more positive people like you!

  • Hi how you doing? Do you go to physical or just do the exercises at home. I also do the bike but only 10 min after that I am so tired. But every bit of excercise helps,correct?

  • Physio.....this spelling

  • I sent you a lengthy answer. When you do the cyclinsg do it with no tension, also do it slowly because you are teaching your brain a particular movement. It is not about how many rounds you do but about a controlled movement. Split your ten minutes into three or two times a day stop if you are tired or have muscle pain. Ask your doctor, but I take magnesium, I no longer have cramps and the muscles feel better. I was at the Iberian meeting for ataxia and they mentioned the coenzine CQ10. I asked the neurologist and she said, there are some studies that say it is helpfull, but she is not sure, but said I could try because it will not do any harm and will probably be good.

    Best wishes

    Isabel

  • Dear Isabel, You are an inspiration to me! Although I don't have SCA3 (I was diagnosed twelve years ago with Sporadic Cerebellar Ataxia, unknown cause, syptoms 24/7, progressive) and am 62 years young now (same age as you). I agree, exercise for strength and balance helps me. But after reading what you wrote, I'm going to step up my exercise regiment! Also, a huge welcome to Sherena!!! My best to you all..., ;o)

  • Hi february,

    I am happy that I have been an inspiration, but it is the research mainly from that site that has inspired me. At the end of the month there is going to be a meeting here in Coimbra on ataxia and cycling (Iberian ataxia). encontroibericoataxias.pt/ (unfortunately in Portuguese) but I will report on what I have learned there. There is a local couple who cycled to the Vatican (she is also reasonably young and has ataxia). I am sure stepping up your exercise regiment will be beneficial.

    My best to you all.

    Isabel

  • Dear February, As promissed I am reporting on the meeting. We were addressed by various doctors and researchers and as of now there is still no cure, but they continue to research. Our researchers are carrying out their research in conjunction with other European researchers. They all pointed out the importance of exercising (They were all in favour of peddeling) There were many cyclists, on tandems when one of the partners suffered from the disease. Jacinta Costa, an ataxian, stated that on top of the bicycle she feels normal. Now about me - As you know I stepped up my exercise, and am attending physiotherapy. I have had 16 sessions and repeat those exercises daily. I feel so much better, I am able to do everything in the house. Yesterday I walked with the group "cycle for ataxia" and managed 3 Km, impossible a few months ago. I saw the neurologist on my routine consultation and she was amazed. My diagnose is SCA3 "Machado-Joseph" cerebellar ataxia, in May 2016, I rated on their scale as "13" today I rated "6". I only take vitamin E, Magnesium (for cramps which I no longer have) and exercise. My physiotherapist advises that I do the exercises slowly and controlled - it is not about the number of repetitions but consciously thinking about each muscle being used.

    This has given me the incentive to carry on, now I see a light at the end of the tunnel. Please continue to move.

    Best wishes

    Isabel

  • Hi Isabel I posted an earlier question but you answer it all. And truly your a inspiration like the other people say. I am going to step up my riding as well. Thanks for the info.

  • Sorry I never saw your question. It all began with a swollen knee. At that time I happen to have a scheduled visit to my neurologist. When I showed him, he said it had nothing to do with ataxia (which I knew) and I should see a reumatologist, I went and got myself a minibike and my knee was fine in one week. I noticed that I was also stronger and shook less. So I had the idea that physiotherapy would help. I saw the neurologist and asked for a referral, she was not too conviced but sent me for an assessment at the physio dept. At that evaluation she said they would put me on a waiting list for some physio. I insisted that she recommend physiotherapy to my GP. Eventually I convinced her and with a letter in my hand I saw my GP who gave me the necessary referral. My next move was to go a physio place. and eventually started in September. This is a battle I won. If this had been suggested before I had lost some mobility it would have been easier, I would have got better before being worst. I refused to use a cane, because I do not want to give my brain the message of this need. In November last year, I measured on the neurological scale -8- by May when I requested the physio I rated 13. I could not carry a cup of tea from the sideboard to the table, I could do no housework. I have had 17 sessions of physio and do the exercises morning and evening, everyday. At the moment I rate -6- on the scale. Today I am able to walk all around the house with my cup of tea, do all my housework with ease and I am so much stronger. At home I think I am fine and I am totally independant. I think one can benefit and should get on to exercising before it is too painfull to do. If I had started when I rated 8 now I would rate 1. I know I will get there, and will delay the condition a few years. look at walking with ataxia and see what Dr Crose has to say.

    best wishes

    Outdoors because the surface is uneven, I have some difficulty.

  • This is so useful to me. Do you mind if I email you I hope you don'tmind your the first person that gives me sound advice. 😀I was diagnosed 27 July so it's all very new to me

  • Please do, I am very positive (actually I drive everyone mad with so much positivism) I am determined not to give in and I say that I have been diagnosed with a (de)regenrative disease. I am not givin in, my ai is to continue being independant for as long as possible. You may email me at ialfaiate@hotmail.com . I live in Portugal.

    best wishes

    Isabel

  • Your an angel. I'll email you I am stealing your positiveim'it's just what I need. Ps I am from Johannesburg South Africa...

  • Hello fellow South African, I grew up and studied in South Africa. I live in Witbank from 1966 to 1993. My son was born in Witbank

    I know Johannesburg well, my in-laws lived there. Fancy the world is small.

  • Can't believe it. Now I know our paths cross for a reason 😀

  • Dear Sharon G,

    I am waiting for your email, I will reply as soon as I get it. Sometimes emails do not get to me because the name is not spelt correctly.

    I am sure we have lots to talk about.

    best regards

    Isabel

  • Morning I haven't done it yet. Hectic at work and this morning I was so full of pain that I started work later. I will message you when done it

  • HEllon how you doing I haven't forgot to do the email I have bee off sick with RA. Both my wrist is inflamed so typing and writing a but hard. I am back at work tomorrow catch up and then going to do email. 😀

  • I am great and improving, I look forward to your email.

  • Dear S,

    Unfortunately there is nothing great to say. Oops but you are supposed to be positive .. about what, no idea. 😀.I was also diagnosed in 2010. Never heard of this > In my case, it is not genetic but believed to be autoimmune induced. Who knows... Everyone says something else, I find. PT's say MD's are full of bull and vice versa. At 30, wow that is young. In truth, any age is young. Apparently any form of exercise is good, but that is true of all.

    Im not sure btw this is accurate. My grandma was a big advocate of "resting" and eating fat. She lived till age 95. Good luck 2 u. N

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