my Ataxia

[Veteran250]

I was recently chatting with my elder Brother about Ataxia….. he told me that I was born with body tremors, but as far as I know, it was never investigated.

I have had body tremors all of my life, more so in my hands, I was never able to do joined up writing, used only block capitals….. what puzzles me is I passed a medical A1 fit to serve in the British Royal Air Force for nine years at age 24.

Life went on for me, as normal as possible, I was a carer for my first wife for ten years….. after my divorce, I returned to my home town and carried on working in security, until my GP retired me early(at 60) because I was having trouble walking,…. Since I was retired, I walked with a walking stick, progressed to a manual wheelchair, then electric scooter, but now an electric powerchair, my Wife has been my carer for twenty years, she was a paid carer by Works &Pensions, but when she reached her retirement age, DWP stopped her carers allowance, but she has continues as my carer.

My Ataxia, and many other medical problems continue, but I will not let it get me down, I will fight it as long as I am able….. and would encourage others to do the same, live your life as best you can.

I am80 now, and life goes on…. I apologise for my long post.

Don(Veteran250)😀😀

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[orange33]

hello Don

please do not apologise for your post. I enjoyed reading about it and it is strange that you can suffer from something for such a long while without actually knowing what it is.. I have RA and peripheral neuropathy the RA was manageable until the peripheral neuropathy kicked in.

It has progressed to where my hands shake now whenever I try to do anything and my walking is very, very poorly. I wholeheartedly sympathise with the tremors as it does impact on your life very much.

Like you Don we keep on fighting. I wish you all the best.

[wobblybee]

🙂 Keep on doing what you’re doing Don 🙂xx

[AbbeysAtaxia]

Hi Don,

Found your post interesting. I also agree with making the best of what you've got - and don't worry about post length.

Tremors from birth can be normal if you "grow out of them", but if you don't, then aside from low blood sugar, tiredness etc, the cause of continuous tremors is likely either epileptic seizures or Essential Tremor (which can run in families). And yes, it can sometimes be seen in newborns. See:

tremor.org.uk/what-is-tremor

tremor.org.uk/essential-tre...

Meanwhile, mild to moderate gait Ataxia, similar to a Spinocerebellar Ataxia, can appear as a new symptom later in life for people with ET. Research in recent years (2020 paper below) now suggests ET may be one of the most common causes of Ataxic Gait in old age - hence many on this forum reporting tremor and ataxia like you...

pubmed.ncbi.nlm.nih.gov/329...

That was the summary, the full article is here:

cerebellumandataxias.biomed...

Local ET support groups often hold "Shaker Meetings" - if interested, look for one in your area on the Tremor website above.

Lastly, the trial phase for a new treatment for ET on the NHS - article also mentions Coronation Street Actor Rob Mallard (plays Ken Barlow's son Daniel Osbourne) who has had ET since age 14! So, there is hope for tremor! itv.com/news/anglia/2022-04...

Hope this info helps

[Veteran250 in reply to AbbeysAtaxia]

Thank you Abbey, something for me to read up on.💜

[Veteran250]

I forgot to mention, my GP referred me to a Neurologist at my local hospital on Febuary 2nd this year, he contacted my GP, with a letter copy to me, saying I had Ataxia, but he didn’t stipulate which one!

[wobblybee in reply to Veteran250]

🤔 Would you consider genetic testing .

If you have children, it could be useful for them to know whether they have a genetic link.

[MaggieSylvie]

Hi Don, your post is not too long - shorter than many. I'm sorry about your tremors, and it sounds as if you had forgotten that you had them from birth. I have tremors now - not sure, but think it's from Pregabalin, and it makes it difficult to send phone messages in the morning because of involuntary "pecking" - just my hands. I feel really sorry that you were forced to write only in capitals, which slows you down and makes you appear illiterate, which you clearly aren't.

You have had more than your fair share of problems, of all sorts. You must get a lot of comfort from the successes that you have had - joining the RAF and working in security. Well done to you for doing what you did when you could😊.

[Sea_]

HiDon

Your post is both interesting and inspiring.

I’m away to physio in an hour although stormy the sun has come out

I agree Do the things that give you joy 💕🤗🏊‍♀️

[auntiesally]

Hi Don, lovely to hear from you, I bet you have some interesting stories to tell us, keep on posting x

[paul456]

That’s definitely the right attitude to have.

Never go half way up the hill when you’re capable of making it to the top 👍🏻

Good on you my friend.

Take care.