ataxiafightback

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March 1st 2022. some thoughts to share that covers exercise, identity, others experience and dealing with disability.

Exercise 

The problem with sca is the gradual loss of our cerebellum. The part of our brain that automates our thoughts.  pre-sca if I thought ” I need the loo”,  “I need a cup of tea”, or anything that requires movement. My brain then takes over and works out in a split second which muscle to move first, the effort required, and every subsequent action until I’m sat back down. Now if I have one of those thoughts I have to stop my auto system, as due to gaps in the wiring, I will end up as a heap on the floor.  I have to construct every action, and if I allow anything to distract me my feet stop, my body continues and I fall over.

This makes the day more tiring than it used to be. The temptation is to stay seated, and ask my wife to make the tea, bring me a potty etc. The problem here is that the less I do, the less I can do. Conversely the more I work at conscious control the better I get at it and the day becomes less tiring.

Sca only started to affect me in my 60s, when I had spent a lifetime perfecting the automation of much of my life and certainly my movement. This makes the task of unlearning much harder and my brain resistant to learning new tricks. Perseverance and humour are the keys. But the real secret is practice.

While the memory of movements is disappearing in the cerebellum we still have muscle memory for regular actions.

My exercise regime.

Every day.

About 25 minutes of yoga based stretching every morning before anything else. My wife joins me in two patterns, which we rotate. I used to be a yoga teacher so this is based on my own knowledge. Links below on where to find a suitable exercise for other Wobblies.

The regularity and repetition of these stretches keeps me supple and stops me closing up. Let me explain.

If we take stroke as an example. A stroke happens in the brain and destroys cells. Typically this will affect muscles in the body. The muscles themselves are not compromised by the stroke, just the instructions from the brain to move. With early physio and a programme of regular exercise the effects of the stroke can be minimised and the affected limb brought back to almost normal use. The exercise trains the brain to bypass the dead cells and through plasticity enables communication between the thought centre and the body.

But if there’s no early intervention and no exercise then the tendons and ligaments in the muscles tighten and the part scrunches up. The patient gets used to the new paradigm and loses any belief of restoration.

This will happen to us too if we don’t work to stop it happening.

3x every week.

I visit my local gym. It is about 5 minutes away in my electric wheelchair. I spend 20 minutes on a treadmill and then do 3 sets of 20 on four static machines using 15 kg of weight. Sometimes I split the treadmill into 2 lots of 10 minutes either side of the leg work. I do no work on my upper body though there’s plenty of safe machines for me to use. I sometimes do a workout at home for this, if I have time between yoga and breakfast! About 7 minutes of HIIT.

Ataxia and personal identity (December 2021)

In a routine visit to the practice nurse for a blood test this morning,  not ataxia related, it occurred to me that our society and our health systems push us towards embracing disability rather than fighting to stay fit.

The nurse had worked in the neuro department and knew what ataxia is! She admired my new chariot, an expensive wheelchair called a trekinetic, a multi terrain chair that allows me back into the new forest to share walks with my wife. Unlike my previous scooter, once I was in it I was in it, this one despite having electric motors also allows me to put it in manual mode and push it myself. The nurse commented on how well I was doing and then it dawned on me that in a caring society we are encouraged to take the easiest option of submitting to our condition and allowing that to define us.

I’m very lucky that my career included time as an holistic therapist, yoga teacher and psychotherapist. I have the knowledge and tools to understand and combat the effects of ataxia. There have been days when I felt like giving up, and I expect there will be more yet. But most days I have things to look forward to and jobs or hobbies to do.

I have recently employed the disability card to get some speech therapy through my surgery. Having a therapist work with me reminded me of how  soothing and comforting that can be. Something I used to do with my clients. With just a few sessions and her expertise I have been able to reclaim myself by being encouraged to tell jokes. (Something I was known for) and to break out of the straight jacket of embarrassed silence, caused by my poor diction. Most of my jokes require some sort of accent, from American to Italian via Welsh and Irish. I highly recommend trying to speak in unfamiliar accents as a fun way to practise using your voice. Requires a lot of concentration.

Our caring society has given me a blue badge, a disabled card, even attendance allowance. But I don’t need to repay this by being more disabled than I am. By not doing my best to keep fit and healthy. By relying heavily on my wife and other kind people to do everything for me.

I have sca6, which the head of Southampton neuro department said is the one to choose, as it’s late onset and slow to act. I realise other forms of ataxia are much harder to bear and understand how hard it is to be saddled with a condition later in life. Disabled children cope with life much better than disabled adults, though there’s examples of both coping well. Having lived most of my life as an independent person it is hard to give up and allow others to do things I always did easily for myself. Yet asking for help is twice blessed, blessing him who gives as well as he who receives. It feels good to help others, so don’t deny them that good feeling! If help is offered I will always accept. Recently in the gym I was going to the loo before going home and as I struggled with the door a young lady , who was nearby, asked if I wanted a hand! i looked hopeful and she realised what she had said and added “I meant with the door!” “yes please!” I said, “But only if you have warm hands!”

To summarise:- Do as much as you can manage, knowing this will be more some days than others.

Ask for help from those who love you and from complete strangers (Covid safe!)

Look for bits of you that have become lost under the burden of ataxia and work out how to recapture them.

Use the system of our caring society to make your life easier.

Laugh every day, search online for jokes or on YouTube for comedians or funny films. Find humour in everyday acts. Smile a lot, it encourages your brain to release endorphins, seratonin and other useful internal chemicals.

Be polite and always say please and thank you.

If you need to rant do it on the ataxia forum, where we understand and will commiserate.

Share your good days and small wins with us too.

All people are valuable and that includes you specifically.

Today is one of my good days, and tomorrow is my wedding anniversary, 38 years of marriage, but only 26 with this wife! As I love her to bits I hope she is with me to the end.

January 2022. I have survived Covid so far! I suppose in the lockdown I could have spent time updating the site as I see some gaps have appeared and videos gone missing. However I had some little jobs that were waiting for the world to stop. 2020 it did!

I have had photo slides belonging to my parents and their parents (grandparents) for 30 years. These I have now digitalised with our flatbed scanner and through the power of the interweb have shared them with family. The first job was to cull the out of focus, the shots out of the airplane window, strangers in local costume, mountain vistas and other slides which had no relevance to them or to those of us left behind. This shortened the work with the scanner.

I found many pictures of me as a boy and young man. Pictures of my siblings, cousins, uncle and even of my parents and grandparents as younger people.

We are lucky to have a garden and this received a lot more attention than it usually gets. Plus the weather in the first lockdown was glorious.

My plan is to add a page on exercise, how it helps both physically and emotionally. To add some links to exercise regimes set up to suit the wobbly and share the things I do.

September 2017 – Added to walking page and voice page.

10th January 2016 – Nystagmus what is it and what to do about it.

1st December – Balance

Hi, I’m Nigel Heath and I have SCA type 6. I like to call this the ‘wibbly wobbly gene’. As it’s genetic and you have it too, perhaps we are related? Welcome brothers, sisters, cousins, nephews, nieces, uncles, aunts, let’s fix this together.

On this site I want to show other ataxia sufferers ways to get the most out of life.

How to turn around the decline we are all promised with our diagnosis.

How to fight back towards a quality of life for us and those close to us.

This is me now.