Exercise, and personal identity for Ataxians

[nigelrheath]

There’s been several posts recently about how to exercise safely and it’s value. I have added a new paragraph to my website with my regime and thoughts. HTTPS://Ataxiafightback.Wordpress.com

I have been struck recently by the pressure we put on ourselves, plus from others, to somehow return our mind and body back to status quo. Many people have chafed at the effect of lockdown and just want to return to ‘normal’. I think we have had the opportunity to learn what life is like if we take a moment to slow down. Really what we should be doing is adapting our environment to make life easier as our brain dies off and interferes with our body! I went to see a physiotherapist last year and her aim was rehabilitation rather than adapting to meet my new challenges. I have found that in slowing life down, not just my pace as I stagger around the house, that I have more time to appreciate what is around me. Perhaps the changes that fell out of the pandemic are not all bad.

I have put my thoughts on the website because they are verbose! It’s free to have a look at. Ataxiafightback.Wordpress.com

Nigel

[pinjem]

My life did not change much due to the pandemic. What I saw was others having to learn to live with restrictions that had become fairly normal for me and enduring some of the frustrations I have become used to. Yes, it was even more limited but day to day, very similar. I have learned that I cannot do something physical (or mentally stimulating either) every day- I pay for it a couple of days on and can do less. So I am being kinder to myself, a small amount of exercise or stimulation one day means perhaps the ability to do more the next. I will not be able to have or even think about any regime- I do not feel that any amount of physical fitness will stop the hurting muscles, the general fatigue building up if I have done 'too' much though I consider myself physically strong. I have to recognise that there will not be a linear progression in ability, my body thinks it has had enough and that is an end to more of the same, I think my family are starting to understand that. Having said that, I can do a lot more late afternoon exercise, possibly my body has learned to be upright enough again by then. Each of us can do different things, my aim is to continue at the same physical level, which is OK, and less than some and more than some others. Yes, slowing down has a big upside!

[ninotchka]

Hi Nigel

I just visited your Wordpress blog. Loved it! I don't have SCA6 but I too am a "wobbly" with all those pesky problems. I have Idiopathic Cerebellar Ataxia, late onset (LOCA) . That means they have no idea why I have it. I do try to exercise and am still flexible and nimble/limber, but getting more and more spastic, and like you stated, stiff in the legs. It IS definitely exhausting to get things done. I am unable to get to a gym, but my previous trainer and pilates teacher now has Zoom classes online, so the pandemic has actually gifted me that. The other odd gift is that I have become skinny due to all the effort I am putting forth.

Thank you so much for your thoughtful blog!

Nina

[nigelrheath in reply to ninotchka]

Thanks NinaI think deep down we all don’t know why we have got ataxia. Surely it’s a mistake? I led an almost blameless life!

But the wobbliness doesn’t go away.

The only answer is to live with it and make the best of life.

Thank goodness I am not in Ukraine 🇺🇦

Nigel

[ninotchka]

Yes....keeping things in perspective is very important. However, I insist on believing in miracles (and I am not a religious person).

[Sailor_Girl]

I've no time for your website Nigel

[Hidden]

I was newly diagnosed with Ataxia this week. I have just been reading your blog. The use it or lose it jumped out at me. I did lose a lot since 2008 but I have used the emptiness of lockdown to fight to get it back. I have relearnt to sit to stand and stand to sit. Albeit wobbly. I have relearnt to walk around my flat with my nimbo posture frame. Albeit wobbly. I had a fall and was referred to a physio. The physio saw my ataxic gait and referred me to a neurologist. Who sent me for an mri scan and found a shrinkage of the cerebellum. I was then referred to sheffield ataxia centre who confirmed this week I have ataxia. I am now waiting for another MRI scan of just cerebellum and for Genomic England to tell me if I have a genetic variant. Should find out by Christmas hopefully. But I can greatly testify to if you don’t use it you lose it. I have been fighting to regain it and in part am winning if only in the home. I force myself twice daily to get a bowl wash on the bed and dress. This keeps those stiff muscles working. I force myself to wobble round the flat with my nimbo posture frame. Take it from me if you don’t use it you will lose it and it takes a hell of a lot of determination and stamina to get limited parts back.

[nigelrheath in reply to Hidden]

Well done! Some days giving up seems like a good option. Allow yourself time to feel cheated and sorry for yourself, but then bounce back. The minute you give up the harder it gets to get it back. Unfortunately as the cerebellum dies off we have to use different parts of the brain to take over, and they will not be as good as the cerebellum was. Adapting to the current situation is the only way to go. The diagnosis will confirm things for you but act now and don’t wait.Nigel