Exercise

[victoriatower1]

Good evening. My dad has sca6 and is unable to exercise safely. I worry that he cannot stay fit/healthy without exercise. Therefore how does he go about getting some sort of physio? Is it something the Nhs can provide or would he have to go.private and look into it himself? He was referred to the local leisure centre but cant get to and from there safely nevermind being left to exercise by himself. He could do with someone to be with him for 30mins a few times a week to enable him to maintain strength in his arms and.legs.

Any advice would.be gratefully received

[Angelcake1]

Hi you could try Social Services, this is the way my husband originally got a personal assistant via direct payments. They also had a contract with Leonard Cheshire who sent out a member of staff to support at the local gym.

[Rankin63]

I was referred by my local doctor,but you have to ask. You only get six months at a time through the NHS. Hope your sad has some success.

Rankin63

[PeteW]

Hi. There are plenty of videos on YouTube on balance exercises for people with ataxia

[Don21]

Hi Victoria . I have sca6 as well. I found that some Pilates DVDs for beginners are very good. Yoga is brilliant but some exercises require balance so are no nos. Good luck.

[wobblybee]

Hi Victoria😊 Lots of good advice given🙂 Not everyone has the same ability to exercise safely, or actually benefits from the same exercise. You could ask your GP for a referral to a Neurophysiotherapist🤔xB

[Litty]

I am lucky and have an exercise bike, my Dad’s old rowing machine and an exercise mini trampoline with handle bar. It is boring exercising so I try to sing along with tunes, or listen and repeat the radio (to strengthen throat) and watch my bird feeders. Weights are good every other day.

[victoriatower1]

Thank you x

[Sca6]

Hi, I know about doing things safely. With many bruises, 2 broken left wrists and 1 right, I broke my left and right wrists within 6 days, also when I broke my second wrist in Madeira, their A& E was much quicker than the NHS! I have been referred by my GP to a Neurophysiotherapist, they can only see you for a short time, they give you exercises to do at home. I had to rely on friends to take me to hospital, the wife works full time.

I do exercise 6 days a week, which include 7 km in about 18 minutes, on a exercise bike, afterwards around 45 minutes of different floor exercises ( balance is bad) which I got mostly from Neurophysiotherapist. Dumbells by my chair, so I can do upper body, also strengthen my wrists. Now I have got a personal pilates instructor (the same one the wife uses), she comes to the house, it's not cheap, but it is easier. Concentrate on what he can do, not on what he could do, sounds easy, but it's not.

I'm 60, wall walk in the house, use a walking pole and wifes hand out and about if the ground is unknown quantity, also wheelchair (which I hate) and a 3 wheeled walker, which I use when the ground is flat i.e. hospital or shopping mall.

Diagnosed by genetic testing about 4 years ago. I find doing technics lego therapeutic because it helps with my hand coordination and is also enjoyable - like being a kid again! Something I find very useful in getting around the house is a walking frame, I bought a buggie hook which I have attached to the frame and this enables me to attach plastic water bottle and Thermos mug (both made by Camelback with hoops) so I can get drinks during the day and carry back to my chair without worrying about dropping them (I've dropped a few, takes hours to clean up, so the wife doesn't know) Can also attach little cool bag to hook to carry food.

My Mum had SCA6 as well which she thought was a type of MS was never gene tested, at least now we have all day TV, iPads, mobile phones etc so not as isolated as she was 25-30 years ago.