30 years of slow degeneration

[Astonmad]

Hi Everyone

This is my first posting, but I read your posts regularly.

I have suffered the effects of Ataxia for over 30 years now and thankfully the progression has been relatively slow, but now I will reach the age of 75 this year, I get up in the morning and play the game "Old Age or Ataxia". I never know which one to blame for the way I'm feeling! I blamed my heavy, leaden legs on Ataxia and wondered if anyone has tried using the Revitive Medic device advertised on TV, and if it has had any beneficial effects.

Terry

[wobblybee]

🙂 I’m similar age, and symptoms have been troubling for a similar length of time..For some years I had problems with balance but mobility was good because I was still able to function pretty much as normal.

Then I had chemo and radiotherapy…which meant enforced rest for about a year..mobility really suffered afterwards..and the dreaded leaden legs kicked in..

I bought a Revitive..but haven’t used it consistently because …it has to be done with bare feet 🥶

[Astonmad in reply to wobblybee]

Thanks for letting me know your experience with Revitive. It might be worth a try. I have a step up machine and an exercise bike in an effort to keep some form of fitness, but as you know it takes an enormous effort to use regularly. I think lockdown really accelerated my decline of inactivity 🥴

[wobblybee in reply to Astonmad]

🤔 I bought a treadmill..but it turned out to be a poor decision because I have Vestibular issues which are worsened with vibration ..

I also have a ‘stepper’

When I was able to go to a gym..my favourite equipment was the cross trainer 🙂 I would have preferred buying that instead of a treadmill but..other family members were in favour of the treadmill 🙄and then rarely used it.

I admit I find it very hard to maintain an exercise routine..and now it’s much to my regret. For years I was complacent, thinking my diagnosis of Idiopathic Cerebellar Ataxia with mild Cerebellar Atrophy was nothing like the progression of some types. Well, that has come back to bite me..

If I could influence anybody just starting out with ataxia…I’d encourage them to keep as active as possible, find something you enjoy and keep it going 🙂

[7151]

Hi goodness 30 years of progression that gives me hope ..i think i must have had antaxia for years but i never took much notice nor did thé docters ..its since last septembre 2022 that its realy kicked in ..3 rd head scan in May..so i m syndrome antaxia still .. i have just started this very heavy legs ,its true never sure if its antaxia or old âge, i m 72 ..what i find strange is i have up and downs good and bad days ...what à battle !

[coupons in reply to 7151]

What do you mean by heavy legs?

[7151 in reply to coupons]

Heavy legs like weights on on them Apparently its normal with ataxia cause you brain is nt giving enough informations to thé legs so some muscles work over time 🙂

[coupons in reply to 7151]

Thanks, I never heard that term.

[7151 in reply to coupons]

🙂

[PatsyIpswich]

Hello Terry I was 80 last November so can relate. I can't stand without holding on but using vibroplate first thing relieves discomfort in leg and foot muscles. Maybe you try similar in gym ? Good luck, Patsy

Vibroplate with handle

[runningdeer]

hi

I have very heavy legs, which have got worse, along with my balance, since I had a knee replacement 1 year ago. My consultant thinks the anesthetiser brought on my Ataxia. I live on my own and try to have a very active life, with my Walker. I go to a gym for disabled people, 3 times a week and do seated exercises. I too would be interested to know if the Revitive works. A lady from the gym has just got one, so I am following her closely, before I buy one. The important thing, is to keep active, I’m sure I would be a lot worse, if I let Ataxia take over. I run our local Ataxia support group for and I volunteer for U3a. I try to get out most days, but I lucky, I still drive!!

[Buffergirl]

Dear Terry, yes I have one and use it daily. It sits under my computer desk, all plugged in so easy to get into a habit. I think it would be a big ask for it dramatically to improve my increasing problems with my feet and legs but, frankly, I wouldn't be without it. After all, it does send impulses through the feet and sometimes as far as the knees and this must stimulate the nerves and muscles in my opinion to a greater or lesser extent. My 81 year old husband (without Ataxia) also uses it and obviously finds benefits (in fact, we're usually fighting over it!). In short, given my own personal experience, I would definitely recommend.

[nigelrheath]

hello Terry. This may be your first post but now you have broken the duck I’m sure we’ll see more of you.

Seems there’s quite a few of us trying to separate ataxia and old age. I always assume old age and ask the doctor. If they know it they usually have a remedy of some kind. If it’s ataxia then I’m back to my own devices.

While exercises are hard they are definitely the way to help. While we may be losing the smart piece of our brain, the cerebellum, we can use the other parts and need to work backwards. By that I mean from muscle memory up to the brain. If you can find a way to keep your legs moving, and fairly strong, your brain will catch up.

Nigel