Beware the prognosis

Ataxia is not much known about by medical professionals, even those in neuro units. Therefore the information they give us is largely based on their experience of seeing patients presenting with ataxia like symptoms.

The standard balance tests, walk along the corridor, toe to heel walking, standing on one leg then closing eyes, following finger with eye etc will only indicate how well or badly the person is at that moment in time. And only then when compared with the sample of patients seen so far by that professional.

About a week ago I went to Oxford to take part in a small research study for sca6, which I have. The young doctor used all the standard balance tests on me. She then said, "you have a mild case of ataxia!" Compared to her sample of patients I performed well in the standard tests. No surprise to me. I do 30 minutes yoga every morning before breakfast. I have worked to change my gait, by lengthening and widening my stride. I have trained a different part of my brain to speak so the cerebellum interference is reduced (less slurring), I do eye exercises as part of my daily yoga and finally as many of you will know from my posts and my website Ataxiafightback.wordpress.com I am determined to reduce the impact of being an ataxian on my daily enjoyment of life or my plans for the future. I realise my determined optimism may be a little wearying for some of you struggling to come to terms with ataxia.

When first diagnosed in Southampton the neurologist asked me to do the same tests. I failed fairly miserably. So had the doc in Oxford seen this she may have said "you have a severe case of ataxia". Either way she is wrong to qualify the mildness or severity based on one quick set of tests on one day. It's quite likely she was partly saying this to herself, in terms of her research project, and partly out of the naturally human desire to give me the best news possible about a condition she clearly doesn't want herself! If I was someone who paid attention to 'experts' this comment might have caused me to think all the effort I'm expending is unnecessary and to slacken off. After all who wants to work hard if it's not needed!

As a psychotherapist of 25 years practice, I listen beyond the words to find intention and deeper meanings. What her snap diagnosis of 'mildness' has told me is how much difference I am making to how ataxia affects me. In her experience my handling of the balance tests was only related to the condition. Despite having visited my site she discounted my attitude and the work I'm doing to stay healthy. Didn't fit in her model of the world.

Similarly when Alison (wibblywobbly) reported on her eye improvement, her optician could not find a reason (within optical knowledge) for the improvement. Some Opticians and doctors dismiss the Bates method of eye improvement as making no difference. When Bates first shared his findings with his colleagues they roundly denounced him as improving someone's eyesight does not help you sell them more glasses! So a bit like pharmaceutical companies avoid 'cures' and look for something to provide symptomatic relief. That way you ensure the condition never gets better and you have a customer for the rest of their almost pain free life! Excuse my cynicism!

How ataxia affects you up to now has to do with your genetic inheritance, your lifestyle choices and other stuff that has happened to you. How ataxia affects you from today onwards depends entirely on the choices you make today. You may choose, like me to fight back and find ways to preserve your health. You may choose to find ways of seeking help from state, charities, family or by buying gadgets to help. (I have got lots of aids to improve my situation). Or you may feel this is all beyond you. At one time or another we have all been in this "life as I knew it is gone forever" place. You don't have to stay there. How you got to where you are is partly down to you, partly down to luck - both good and bad. How you move forward is entirely up to you. Choose people around you who will help you achieve what you want.

We may have the same or similar condition. Our personal experience of it is just that, personal. Share your ups and downs here. Find someone to buddy up with who also has ataxia. It's okay to ask for help, even if you are a man!

Nigel

[february]

Dear Nigel, You look at your ataxia in a admirable, positive way! I love you website, "Ataxiafight back", as I have learned and continue to learn so much! Kudos to you for practicing what you preach! Please keep posting all the useful information on your website, as this fellow ataxian needs all the help she can get...,ha! My best to you...,;o)

[Hidden in reply to february]

Thanks February, comments like this encourage me to go further. I'm exploring some further technology to help with accelerating brain changes through plasticity.

Nigel x

[tino1234]

what I really good post nigel I can relate a lot to what you said my friend

[Hidden in reply to tino1234]

Hi Tino

Let me know what works for you.

Nigel

[Pec2884]

Thank you Nigel. Just what I need at the moment.

[Hidden in reply to Pec2884]

Pec, nihil illegitimae carborundum. (Don't let the bastards grind you down!)

Keep thinking positive and do what you can, just more of it.

Nigel

[Pec2884 in reply to Hidden]

What is quite amazing it took 9 months for diagnosis from 2 Neurologists when I read how it has taken years for others. New goals for me are swimming, cycling and Pilates to the best of my ability for years to come.😀 Depression and denial under control.

[Hidden in reply to Pec2884]

Onwards and upwards! I think ataxia has saved me from a slow decline into a painful old age. The minute I stop that's where I'm heading, and the brief glimpse was enough to tell me that's no life to look forward to.

Starting a new adventure soon with a cutting edge piece of electronic wizardry invented in Russia but now manufactured better in Germany. Will report back next year!

Let us all know how the cycling, swimming and Pilates works out.

Nigel

[Vion]

Hi

I too am fighting back, I saw a Phychotherapist and he felt mine was not Ataxia but mostly stress related, so after a few sessions he switched off my fight/flight response and it worked. I am 95% better I just have a off balance veering mostly to the left. I continue to do abdominal breathing to keep me calm, and I recently visited the neurologist after waiting 5 months and he was very shocked at my recovery, yes he did exactly the tests you described, which I managed to perform perfectly but he felt my left hearing was off and diagnosed me as maybe having acute Labarinthisus which untreated can give many symptoms like Ataxia plus stress related issues. He is referring me to a balance clinic to correct this and advised they would look at my hearing also due to my tinnitus, so all in all I am pleased as my Dr did nothing for me whatsoever. I am walking daily without a stick now and nearly back to my old self. It has been a difficult year with lots of good and bad advice, but the key is perseverance. I have joined a gym so I can do yoga too. I have learned so much mainly from this site and will continue to support others even if it's just a bit of friendly chatting. Happy holidays may 2016 be positive and blessed 💃😊

[foffee11 in reply to Vion]

Happy Holidays to you too can you share how you got rid of your cane

[Hidden in reply to Vion]

Dear Vion

Forgive me if this is a 2nd reply, but I can't see the 1st one here.

Great news! Work on finding ways to de-stress. From free online meditation tapes to lifestyle changes.

Keep in touch

Nigel

[foffee11 in reply to Vion]

may I ask what exercises did u do to get rid of your stick

[Hidden in reply to foffee11]

I think Vion got fix of the stick as a by result of sorting out some unhelpful brain patterns. With help from a psychotherapist.

A lot of our problems come from habitual thinking and unhelpful patterns.

Nigel

[Pheobe13]

Hi Nigel I wish there was a magic pill john is much worse 3 falls in one day a swollen foot short of breath the list goes on things not good here at im at my wits end !

[Hidden in reply to Pheobe13]

Hi. When John is ready you know I will come and work with him. He needs to accept that this condition can be tamed but he does not have the knowledge or skills currently to find the way through. I'm happy to provide the stimulus he needs to learn.

I think men have a problem in accepting they may have a weakness or need help. I'm not much better myself!

He's already met me so it should be easy to ask me over for a coffee and chat, and start slowly. You have my number, phone me.

Nigel

[Pheobe13 in reply to Hidden]

Thank you would mean a lot to me I will be in touch after Xmas to arrange

[foffee11]

U R so motivational and I love your disposition! Keep up thee great work thanks for sharing and please keep on sharing!

[Hidden in reply to foffee11]

I'm determined to find some simple ways we can all deal better with our ataxia.

Nigel

[Piero]

Post was a pleasure to read, heartening and quite stirring.

[Hidden in reply to Piero]

Piero, thanks for your feedback.

Keep cheerful.

Nigel

[wibblywobbly]

You continue to motivate me and many others. Thank you 😊 😊 😊

[february]

My pleasure, Nigel! ;o)

[Pec2884]

Compliments of the Season to you Nigel the group from sunny South Africa. Look forward to your new research.

[timk Volunteer]

Isn't the issue that the approach you get from doctors tends to be to treat symptoms and with some physical ailments they are very able to do so. However, an holistic approach is helpful in resolving the issue, and it can be especially helpful when the issue is not easily resolved by traditional medicine. My experience has been that GPs who I have seen have not been interested in holistic approaches and others (and for me it is often my osteopath) give me very helpful holistic suggestions.

So, for example, I went to the GP with a finger that wouldn't bend and straighten properly, I was told that I had Dupuytren's Contracture and that it was not bad enough to operate on which was one of the options for me for the future. I happened to see my osteopath a few days later and mentioned it to him. After a short discussion, he suggested what may have caused the problem and suggested some exercises that I should do every day which might help. I tried them and saw little bits of progress over the coming months and then, after about six months, I had full use of the finger that previously would not bend and straighten properly.

I still do my hand exercises daily and am very motivated to do them because I have seen and felt the benefits. I see this as a model for many other conditions and just think that if people were motivated to put in some effort, then often that effort will pay off (which is reflected in many of the comments in this trail). However, we are taught to expect a quick fix, or nothing. Actually there is a third way. So with my ataxia; I try to regularly do certain exercises which help maintain my health and prevent the onset of more severe symptoms.

[Hidden in reply to timk]

Hi Timk

There is so much for doctors in the west to learn, particularly about drugs and new procedures that it's really no surprise they can't also embrace 'alternative' or even complimentary medicine.

The responsibility for my body is mine. I may choose to temporarily hand this responsibility to my GP or other doctor, but mostly I choose to work with them and assess for myself based on the information they give me whether their route forward is the one I want to take or not. Sometimes the right route can be a blend of old and new. East and west. Practical and spiritual. I know the decision must lays be mine even if I entrust someone to work on my body. I have built such trust for example with my dentist, even so we discuss options every time I need some work done. The respect goes both ways. This is more difficult to achieve with my GP, as he has too many people to see to really know me. The way GP practices work it's actually hard to see the same doctor twice never mind your own one. Inevitably therefore they can only give generic choices for the ailment you present. When it's something like ataxia they have no data to work on, so can't really offer any real help.

An osteopath, homeopath, nature path or even holistic therapist starts from a different place and is more likely to consider you as a whole rather than a collection of parts, some of which appear to be broken.

Our society seems to be intent on removing our personal responsibility from us in so many areas. That's a fight we must all take on and once we have taken that responsibility for ourself then we can truly deal with our ailment.

Nigel

[neta]

Hey there Nigel,

I have been re-reading old posts and came across this one which I have now read carefully. Maybe re-read. Anyway, you seem to be a big believer in the non-western medical approach. I, for one, am not sure this is a solution. Perhaps. For better or worse, I am the opposite and not a big believer in the holistic approach;nor am I sure the brain can retrain itself. I am not sure what you are arguing actually. At times, I try to imbibe my old dad's (he's 94) advice: ignore, ignore, ignore. But other times, its not quite possible. I noticed that none of the hard-core ataxians responded to this post.

What's going on and how is that "new device" of yours from Russia and Germany?

I mean we can all do yoga, exercises, and whatever. Why isnt this (your approach) front page news?

Best, N

[Hidden]

Hi Neta

Our beliefs are often instilled early in our life and usually reflect our upbringing and early experience. This makes them fairly hard wired in our neurology and therefore hard to shift without a lot of evidence to the contrary. When we ask people to be 'open minded' what we really want is for them to see our point of view and not judge it by theirs.

As we get older we look for evidence to support our beliefs and tend to ignore evidence that refutes them. Over time we become more heavily invested in our beliefs needing to be true.

As well as our caregivers we pick up on social and cultural beliefs. One of these that always affects us is the medical model we are brought up in. Doctors and other western trained health professionals generally subscribe to 'the body as a machine' model. If something is damaged or faulty then our system looks for ways to replace it or over-rule it and provide a better way forward. Anti-biotics being a perfect example of this as they disable our own system and replace it with a drug based one. Used sparingly this has undoubtedly saved many lives. Used indiscriminately it has led us to super bugs.

The diagnosis of ataxia gives the patient two main choices. Accept the western model and prepare to get worse, using whatever help we can get from the nhs in the form of wheelchairs, grants etc. Or seek out other ways to go. This requires research and persistence and a willingness to try things out. Also a tough skin to ignore those who feel threatened by a different viewpoint.

I think the reason the 'main Ataxians' on here have not commented and don't mention my website is because they are fairly heavily invested, emotionally and physically, in supporting the status quo. We all have to make our own choice and by sharing our individual stories allow others to try out what works for us. Some of what works for others doesn't work for me and I'm sure vice versa.

Of course we can all do yoga and exercise more. It won't cure anything but it will certainly keep us stronger, more supple and improve our mood. At present nothing cures ataxia, so pick the symptomatic relief you feel drawn to.

All the best

Nigel