My husband was recently confirmed as carrying the gene for SCA6. He has balance and fine motor skills problem (writing & typing) at the moment. We are waiting for an appointment at the Sheffield Ataxia clinic. We feel like we are living in limbo, trying to function as normal. Would appreciate any advice you guys can share. What questions should we be asking when we get the appointment? Any advice / experience of sharing this with our family? At the moment we haven’t told anyone, which is really hard but with knock on implications we want to be as informed as possible. We have 2 children and my husband has a sister. Just at the start of this journey so any advice from seasoned travellers would very much be appreciated. Thank you.
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Sammycat14
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I don’t have SCA6 myself but …generally at any new appointment Neurologists ask every patients the same questions even if it isn’t the first appointment with a Neurologist.
They ask..about symptoms, how long they’ve been going on, if symptoms are causing specific problems, is there any other diagnosis to be taken into consideration, are there any medications taken for anything.
🤔Ask about any therapy that would help…maybe Balance Therapy and Occupational Health.
🙂Sheffield Ataxia Centre has a good reputation..he’s in good hands.
Thank you wobblybee . Not sure what everyone else’s experience has been but we had a 10 min conversation with a genetics counsellor before the test, results were posted out to us with a letter saying a neurologist appointment would be sent to us. We received the appointment for Sept 2024. I’m shocked and horrified of the little support that seems available for such a life changing disease. It’s not only the physical symptoms, it’s the impact on my husbands mental health. So many practical questions, like impact on insurance, how to plan best for the future, we don’t know where to start. If it wasn’t for the support of Ataxia Uk and them connecting me to this forum we would honestly feel like we are alone in this situation. Thank you again.
SCA6 is not treatable (yet). However, as this my diagnosis, I offer some thoughts. It is a hereditary genetic defect so could well be passed on. Perhaps tell your children, but it is their decision whether to get tested for SCA6. Balance and coordination will deteriorate so maintain fitness, especially upper body. The Otago programme (strength and balance in later life) is excellent. Having avoided the GYM all my working life I now go twice a week (at 75 years). Speech also deteriorates (a coordination issue). Ataxia UK offer speech therapy. Movement aids go through walking sticks, rollators, wheelchairs, powerchairs and so on. Remember, SCA6 affects the cerebellum, the rest of your processor should still work fine.
Thank you Telegraphist and love the positivity you are sharing. My husband has always been physically fit, runner, footballer, cyclist, golfer, basically good at any sport he turns his hand to. He’s keen to continue but I know the adjustments that he is already having to make are impacting his confidence and he’s trying to withdraw from social events. It’s heartbreaking to watch and I want to understand how I can support him. I will share your great advice. Thank you!
I too have sca6. I’m 74 and I echo Telegraphist’s points. I go to the gym 2 or 3 times a week, it takes the place of a walk as walking itself is no longer possible.
I understand the effect on mental health, particularly so soon after diagnosis. I have written a website he may find useful at Ataxiafightback.com Ataxia uk and this forum have been a real help and am happy to talk to you or him directly to share more. Just private message me for details. At this point don’t tell the children too much as they are only 50% likely to inherit and not for a long time.
Like Parkinsons this is generally something you die with not from.
Because currently there is no cure, dna based, the medical profession try to ignore it! Please get in touch as there are many ways to still get the most out of life. Nigel
The first thing is not to panic and try to think of a million things at ounce and plan out the rest of your life in two minutes.
Everyone suffers in slightly different ways including the speed that it progresses i now need a walking frame and find balance and coordination ect more difficult.
Adapt when you have to and take is easy surprising what you can do you just have to think differently.
Three things he should do
Exercise
Good diet
Get out and about
You can claim benefits such as PIP which will be a help financially.
I too have SCA 6 - diagnosed 10 years ago. As already recommended I strongly advise that exercise is definitely the best way to slow the progression of this condition. If you can get to a gym that’s great. I have a static bike at home and try to cycle for twenty minutes 3 or 4 times a week and do some leg strengthening and balancing exercises each day.
It’s definitely a case of ‘use it or lose it’ also with speech. Every time my husband goes out and I’m alone in the house I practise tongue twisters. You can find lots to try on mondly.com. I have printed them out. I was offered speech therapy on zoom during lock down and the basis of this was actually practising tongue twisters.
Again with writing its a question of using it. During lock down I found a site on line whereby you can choose one of their pictures or down load one of your own photographs and they will send you all the acrylic paints, brushes and a canvas with plan of painting the picture - painting by numbers I suppose but very therapeutic. I also buy books of ‘Codeword’ which not only keeps my brain working but also makes me keep the letters in the boxes. Applying a bit of pressure helps.
I can only speak of my own experience with cerebellar ataxia of unknown cause. I just show my son and his wife each letter from neurologist and let them Google it. They don't seem to have time in their busy lives, with 3 three teenage children. All 5 of the family have significant health issues but none ataxia related. Personally, at 80 years old, myself and husband just do our best to keep going in good spirits. I sympathise with limbo but time soon passes and Shefield will give you all the help and advice you need. Take care, Patsy x
Hello Sammycat14 I feel so sorry for you and your husband but you have made a good start by contacting Ataxia U.K and this forum. The main thing to remember that everybody experiences symptoms differently. I am now 86 years old and have had SCA 6 for 23 years. and gradually I have deteriorated but try not to worry about the future too much - - it can be very challenging.Trinity48.
I was diagnosed by Prof H at Sheffield, back in 2014 with the same. I have found that initially things were noticed as "not quite right", with regards my walking, balance, speech etc. Now in 2023, I can hardly walk, and prefer to stay at home, where as this time last year, we were going out for a coffee most days. I expect to be in a wheelchair this time next year
Understand. It was in 2013 that I first felt things were "not quite right". SCA6 has since progressed through walking sticks, to rollators and now a mix of rollator and wheelchair. Though standing unsupported is now risky, I am determined to continue trips out. The issue now is to find coffee shops that have easy flat access, accessible toilet and room to manoeuvre, as well as good coffee. I go to the gym with my rollator, but not sure how that will work when I need to use a wheelchair. Keep fighting!
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