It came as a shock: One minute all systems working... - Ataxia UK

Ataxia UK
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It came as a shock


One minute all systems working then a semi-collapse and partial recovery in June 2017 and the news of a degenerated cerebellum. Age 73 and a life of sport, one at international level. Adjusting to it with vitamin B complex, lots of water, healthier diet and a different but healthy fitness regime (strenuous, wobbly park run and two outings of 20 minute power walking each week plus some gentle mountain biking) - that's a package I can recommend because there appears to be no deterioration in 13 months. And I'm fitter. Of course, one doesn't know what would have happened without those. I have tried daily balancing exercises on one foot but have applied myself poorly. I look forward to sharing ideas on this site. Presumably we all share the same insecurity about the future. Part of the brain has deteriorated and irreversibly. Not a nice thought. But somehow I seem to be making more of my life. Which brings to mind what one subscriber put so aptly - "I've got ataxia, but it hasn't got me."

17 Replies

I'm interested in learning about your diet. Can you tell me what you have for breakfast, please?

Breakfast is a fairly normal diet of cereal, toast and "real" coffee but elsewhere in the day I've introduced vegetable/fruit smoothies, cut out sugar, red meat and junk food, and cook with coconut oil. No exciting suggestions there but my research has suggested that plenty of water and exercise (as fundamental to human survival as one can possibly get) is healthy for the brain itself

Hi glad to hear you are taking the vitamins, you might think about vit b 12 injections as quiet a few of us find them helpful. You say you have degeneration which is irreversible. There’s lots of new science that says it is reversible I seen many programs about the brain,it has tremendous healing ability, generally doctors are way behind with some of the new research. So don’t give up , you can have a full healing😀

Thanks for that. You're quite right - I should not have used the word "irreversible" since there are many promising views far more informed than my own. Now I've joined this site I look forward to getting access to other information and suggestions to help develop a consistently optimistic attitude.

Look up 'The Brain's Way of Healing' by Norman Doidge

Thank you for that. In fact he's written a number of books and it's a long time since I saw (on Amazon) such excited praise by readers. I'm getting my Kindle ready.

There was a fascinating program on some months back about a boy who only had 20% of his brain ( it was hollow inside) obviously the doctors didn’t expect him to be able to do anything. His parents where quiet remarkable and dedicated their whole time to him teaching him things over and over again he ended up being as able as all his peers. Even with only 20% of a brain. So having a little bit of “ damage “ should be easy to reverse! Welcome to the group 👃👃

That emoji should have been 🧠 and not 👃! Sorry

That is extraordinary. What a story. I'm even more ashamed to have used the word irreversible. It is now out of my vocabulary except for when reverse gear stops working. I do exercises (though not sufficiently thoroughly) to get more from the remainder of the cerebellum but I had never considered I could actually achieve any restoration. The "emoji" eludes me but thanks anyway

You seem to have the right idea, exercise and exercise . I've never been at international level, although I have been , and still am, active. I go to the gym three times a week and gentle mountain bike with two Springer Spaniels twice a week.

This will NOT reverse the Ataxia , but it might slow it down.

Good luck.

in reply to wildstyler

Thanks Wildstyler, I'll see you in the mountains

A positive and encouraging quote, you are not short in the determination department. Well done!

Ataxia crept up on me approximately four years ago and has left me rather diminished despite the efforts of my medical team who are extremely supportive.

I am improved and hope to continue improving, I am motivated by your post and will now exercise with more determination and effort.

Thank you, may we both continue improving!

in reply to stedman

Stedman – an interesting name for a fellow Ataxian (i.e. Steady Man) or a coincidence? Good to hear your condition has improved. Being four years down the line you have a longer experience than me. The exercise is mentally and physically strengthening as well as (I trust) good for the brain. Minor drawback for me – it is no longer done on a young body, and I wobble a bit and occasionally fall, though fortunately on grass in the park run. I’ve done about 45 weekly park runs – it’s a world-wide club for everyone, runners and walkers - since my collapse in mid-2017 and trying to beat my best time keeps me fired up to add some lighter exercise mid-week. I can recommend the activity and the socializing. The collapse (a mystery to all) took my balance almost immediately down to 60% but after a two day recovery took it got back to about 85%. And there it remains and is manageable for the time being. Not a pretty sight during a small nighttime bush fire we had to deal with last week – I was hopeless in the dark – perhaps merely reflecting some adjustment success in daytime movement. I guess only a micro-analysis of an MRI scan would inform definitively whether the cerebellum has continued to diminish. Not possible where I live.

Wow! You are doing exercise to help yourself and your brain is obviously doing some adjusting. Many scientists and observers might call this process neuroplasticity, where the brain adapts, even though there has, perhaps, been some neuro-degeneration and deterioration. I have Cerebellar Ataxia and Parkinson's Disease, and am on a daily routine of brain and physical exercise to retain as much as I can, in terms of Ataxia and PD are what I've been diagnosed, but they don't have me down and out yet, and I'm going to keep on moving!

in reply to ddmagee1

Now that sounds like real determination. And an interesting analysis of what might be going on inside my brain. I must say that it is good to share with others in a similar situation especially where they are dealing like you with what sounds like a further stage in the condition(s). Did the two kick in at the same time or was the PD a later stage of the CA?

in reply to chrismor

The CA was from childhood-mild at first-but I always had balance and walking problems, although not to the point where they were extremely noticeable, except I've never been able to walk a straight line, or ride a bike very well. I cannot roller or ice skate. In gym class, I could never do the balance beam etc. I acquired PD symptoms in my 60's, gradually, and was diagnosed in my early 70's. I'm in my 70's now.

in reply to ddmagee1

Goodness me, I wasn't aware CA could kick in as early as that. And you've dealt with the challenge all these years, and then with PD coming in your 60s? There is presumably a link somewhere - this is not the first time I've heard about it. Does one generally lead to another? Yes, walking the gymnasium beam or rescuing someone from a sixth floor ledge is no longer our strong area.

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