Life

[paul456]

Hello all.

Life when diagnosed with ataxia is the beginning of a new life that can make everything harder to do although, harder doesn’t mean it can’t be done it just makes it harder. It makes us find different ways of doing things.

I think, (having done a first aid course ounce which was that long ago I still have my herbs and leaches in my first aid bag) we can expect any sort of nasties.

MOST of the Cerebellum is linked into other parts of the brain such as thinking, memory, concentration, planning, emotional life.

It’s linked to the autonomic nervous system that controls heart rate and blood pressure, although not with all ataxias.

We can help ourselves with:

Exercise, cognitive and emotional, social challenges.

A heart healthy diet. Good for the heart good for the brain.

Improving other parts of the brain can help the cerebellum as you are improving neuro circuitry.

Maybe set ourselves goals.

I have SCA 6, dystonia and EA 2 and not long learnt too many episodes of EA 2can damage the cerebellum and cause the condition to become permanent, episodes can be caused by over excursion.

I was programmed by the army so my brain is hard coded to run until you drop then when you come round start running again NOT the thing to do when you have EA 2 as I have found out the hard way.

Stay safe and happy and life will be good.

Who Cares Wins.

[claire01]

I am laid in bed replying to this experienceing an episodic attack, I also have EA2 and starting to agree more and more excursion is lethal need to listen to my body more 🙈

[paul456 in reply to claire01]

Hi Claire

Yeah please donot over do it as it can come back and bite you hard.

You take care my friend.

[claire01 in reply to paul456]

Thank you ☺️

[12monkeys]

I am in my 6th year of living with Ataxia, at the age of 37 I went from physically fighting fit to barely walk and life upside down within 2 weeks, no warning, no family history and still to this day no specific type diagnosed. The biggest issue is mentally acceptance of a huge lifestyle change forced upon me. After years of searching I’m still yet to find any form of helpful counselling support to deal with enormous lifestyle changes due to Ill health, it doesn’t even need to be Ataxia related, just to concentrate on anybody living with sudden Ill health, I’ve tried GP, my specialist consultants, well-being service and even British legion seeing as I’m a veteran still absolutely nothing.This shocking and desperately needed

[paul456 in reply to 12monkeys]

I know how you feel it’s a total different life change, I think I’m the total opposite to what I used to be. It affects you physically and mentally with no mercy.

We will not win this illness but we can keep on fighting it not only for ourselves but for our family and friends who also suffer just in a different way.

I am hoping to be kidnapped by aliens in the hope they can fix my broken brain and maybe make me 25 again and also really good looking, intelligent and rich, NOT asking too much me thinks Lol.

You take care my friend.

[12monkeys in reply to paul456]

Wise words my friend and ur totally right. I’ve found over the years fighting for other people is exhausting and I need to want to fight for myself which I bloody hard. Getting back to employment I’m hoping will help as I was a plasterer which is definitely a no go now but the fear and lack of confidence is crippling, 🤞the future has a better plan than the present.

Be safe fella

[Guardsman68]

Hi Paul I just read your post. I don’t normally do anything like this but what you say has resonated with me. I was diagnosed with cerebella ataxia in December I still don’t understand it all. I was in hospital on a neurology ward for 5 weeks every scan known to man and after 7 neurologist poking in then told I have a 4.5cm brain lesion in cerebella over VIII cranial nerve 🥴I came home had re enablement team for 6 weeks now waiting to go into rehab center. I went from full time work to being slammed with this. I have SUNCT headache syndrome with injection and tearing which is brutal on its own I have left ear deafness and trigeminal palsy and permanent tinnitus. Anyway enough of that I just wanted to say you have inspired me to get on with it I’m on me chin strap but I have a great support network my wife is amazing and my two grown up children are just great I recon it’s harder for them than me. But thank you Paul.

NO SURRENDER

Lee

[Hidden]

As a psychotherapist for 20 years I know the best help is to provide a safe space for someone to explore their issues/experience, without judgment. This forum is one such place and I encourage all of us to use it to get stuff out of our head and into the light of day. Just the writing is cathartic, the replies, from real people who understand because they share the condition, allows us to feel heard and often provides another way forward.Thank you for sharing, and thank you all who answered.

Nigel

[chelpet in reply to Hidden]

Hi Nigel,

I can’t agree more. I am 71, and was diagnosed with ideopathic Cerebellar Ataxia about 8 years ago. I was fortunate (and almost by chance) to be involved with a peer counselling network for 25 plus years, and then 8 years seeing a psychiatherapist.

I can wholeheartedly say, that the attitudes and approaches I learnt from these experiences have helped my energy and motivation immeasurably, and although many things and pleasures in life are increasingly harder since the onset of the Ataxia symptoms, they are still very ‘doable’ though maybe in slower, often very creative ways.

I have sometimes mentioned these thoughts to neurologist and/or speech/physio/occupational therapists, but I think that the societal stigma and confusion around mental health issues - plus some possible professional jealousy, leads to these thoughts being ignored.

I take Pilates and strength and balance classes constantly, often online, swim and occasionally tinkle on the piano, which was for some years, my profession. I lurch down to the shops, use my freedom pass when appropriate and attend the occasional film, play or concert. The everyday phrase is ‘ if you don’t use it, you lose it’, once said to me by a speech therapist.

Yes, life is often hard, and the fatigue hard to combat, but...........that’s just the way it is.

Peter