Do you have Ataxia 24/7

[KiwiBob]

My Ataxia symptoms change all the time. They seem to be triggered by what I am doing a lot of the time.

By standing or walking. Visual surroundings such as being in a corridor or stairwell, people moving about me, moving from left to right such as going into my kitchen cabinets, trying to make a meal. Shopping in Tesco’s. Looking up to see something. Using computers, gaming online which I can’t do anymore.

It mainly affects me when I am on my feet. Everything slows down. It’s like the brain does not know what you want to do with your body. The tiredness and fatigue on top of all of this makes it very hard to get though the day.

Is this what most of you experience ?

[springlove]

Yes, you have described what I go through too. I have been up a short while, had tea and a couple slices of bread & marmalade. Now am ready to go back to bed.

It's hard work getting through a day, making myself do this and that. I don't have a carer and live alone. It's all up to me.

Jean

[KiwiBob in reply to springlove]

I have a career/job. I my have to go back to full time or part work. I don’t know how I will cope.

[pinjem]

Yes, me too, except there is no way I can shop, or go into places I do not know. I simply overload my brain and fall over. I exist largely online and in my own home, with walks in deserted areas, with aids. Activity is very limited. Lots of sitting down, legs up.

[KiwiBob in reply to pinjem]

That’s what my live is too. But I do go into Tesco’s but I have to use a trolley to hold onto or I would fall over. I have found seated places within the store to go and rest. I use the plastic bumpers on the corner isles to set on as a last resort.

[pinjem in reply to KiwiBob]

I discovered mobility scooters in stores when in the States, bit more space there and I felt safe enough not to run into anything/one. They are here too in some stores,in the UK. I have someone do my shopping for me, could not cope except on rare occasions. It may make life easier for you if you ask for one?

[KiwiBob in reply to pinjem]

I never thought of using a mobility scooter. I will keep that in mine for for the further.

[Bobby1124 in reply to pinjem]

Me too

[lottiejemma in reply to pinjem]

Hi pinjem, I am the same, I miss being able to shop, , I can only move with a walker a short distance, then the shaking starts, I have to sit down, " my walker has a seat. " When my daughter takes me out, which is not very much, I get too distressed, she uses an old wheelchair to push me, I hate it, as I used to be a great walker, Loved walking, but now, my life exists on sitting in my Recliner chair, also can't do housework normal, even to go carrying a cup of tea from the kitchen to my chair is impossible , I have to put the cup down, and a chair is always turned, so I slip either onto the floor, or on to the chair, sit for ages, if I am on my own, then try again, by the time I get my mug of tea through, ( IT IS NOT FAR) the tea is cold--- oh Ataxia, it is not fun , I feel it has robed me of the life I had and loved----- WALKING . Take care all the Family of Ataxia's

[pinjem in reply to lottiejemma]

Are you in the UK? The NHS will fit you for a wheelchair and if you have one of their own, it is free, just need a GP's referral. They can be replaced free after a few years. The thing about a wheelchair is that it is freedom, of a sort! Any freedom is good freedom! See my post about a Trionic rollator? That enables me to walk. I had a 2 hour chat recently with a young man who has a rigid wheelchair which he can attach hand pedals to. He used to commute 22 miles each way for work. I could not do that at all, and it is very expensive but there are sometimes options that help,I was totally unaware. I have been exactly as you describe condition wise but am improved ATM, but do understand, and certainly emphasise- still cannot shop though!

[KiwiBob in reply to pinjem]

My work had to use a wheelchair twice to get me back to my office.

I have been told by the rehabilitation centre the more I give into the Ataxia the sooner I will end up in one.

I keep fighting it. I managed to walk the dog this morning with the use of a walking stick but only just.

I have been seated the rest of the day so far as the walk has done me in.

Since I stopped working just before Christmas my condition has improved.

If I avoid the triggers I can get buy.

[lottiejemma in reply to pinjem]

Hi Pinjem ---Yes I am in the UK, I live in Scotland, the only thing about a wheel chair is --- our house is narrow, and small, would never get a wheelchair in the house---- have been offered one and a ramp from the OT, as my Neurologist says I need one, but The problem ???, and you have to get the wheelchair into the house to charge it up !!!!

[pinjem in reply to lottiejemma]

Mine is pushed by my husband. If you have the money, (lots of it, though maybe second hand might be an option? I certainly don't have the money!) this looks good, I talked to someone who had one. It is an attachment that drives wheelchairs, it fastens on securely, here is a link: activemobility.co.uk/smartd...

[Magicalwomanz]

Wow yes similar for me... had esa assessment paperwork to fill out other day which i took and got filled in with help from citizens advice bureau.. some of the answers i gave im sure he thought i was making it up lol

For me when i never knew i had it i took a lot of sick time off but wasnt until diagnosed understood why

Its hard work but soldier thru xx

[Sphinx21]

Hi kiwi bob I know exactly how you feel you have also described my symptoms to a t sometimes it is all I can do to muster up enough energy for the day I have had ca since birth and am now 45 the symptoms have got slowly worse with age I wish you well my friend

[KiwiBob in reply to Sphinx21]

They don’t know what I have, but it could be gluten Ataxia as I have been diagnosed with celiac disease last year.

[Bobby1124]

Yes me too

[Sphinx21]

Yes ataxia is such a broad umbrella for me I was born with a small cerebellum ( only picked up when I was 23) through an mri but despite numerous tests lumbar puncture nerve conduction tests etc they cannot tract down the gene it’s apparently an extremely rare ataxia although symptoms are relatable do you follow a special diet ? and do you find it helps?

[KiwiBob in reply to Sphinx21]

Only for the celiac disease. If I have gluten Ataxia I have had it for to long to reverse it.

[pinjem in reply to KiwiBob]

I have gluten ataxia and probably another form of ataxia as well. I am very careful indeed with what I eat and am very, very much improved since eradicating all foods and drinks that I have sensitivities to. I have read that Coeliac disease can be reversed, (cannot believe everything you read though!) with a totally gluten free diet but are you saying the ataxia is now irreversible? Are you attending a specialist centre?

[KiwiBob in reply to pinjem]

I have been like this now for around 15 years. I am waiting for appointment for Sheffield Ataxia Center. I have Coeliac disease which is under control but my Ataxia did not improve.

It looks like I may have Gluten Ataxia. I was missed diagnosed with Ménière’s disease for 9 years. I think I may have Vestibular Ataxia in stead of Ménière’s.

[KiwiBob in reply to KiwiBob]

I have been diagnosed with Ataxia, they just don’t know what types.

[lottiejemma in reply to KiwiBob]

I am the same, --Hoping to get results next Wednesday-- by phoning, but might have to wait to see my neurologist to get the results, have had all the tests, just have to see Neuro psychiatry next wednesday

[KiwiBob in reply to pinjem]

Gluten Ataxia can be reversed if you go on a Gluten free diet.

But you have to catch Gluten Ataxia at the early stages other wise the physical damage is done and can not be reversed.

[pinjem in reply to KiwiBob]

Of course! Remember now...

[coat2003]

Nothing like what you are saying. But must be very careful when the bell rings, need counting to 10 and hold of a table...can feel dizzy on sudden standing up....cannot drive, cannot even learn, thank god as my reflexes are like, my husband is braking (he usually drives) and he sees 5 cars ahead, whereas I am wondering why he hit the breaks, pedestrians worse, must pay a very good attention, fully awake, otherwise don't see well, registering moving people, distracting throwing themselves under the wheels, not looking properly.....usually go on autopilot in our car, the ataxia is always there, but inner shakes mainly on the left and invisible...simply lie down at home max 30 min...avoid noise at all costs, any flicking on tv rather turn my head away, not epileptic, but disturbing enough....keeping annoying music off, simply oversensitive at all times, but one gets by limiting whatever causing annoyance...and I always was a bit oversensitive, eczema, NO ATAXIA (diagnosed). Try to do the best of what you've got, even if little untouched left GOOD LUCK! keep active if you can move safely and never give up!

[KiwiBob in reply to coat2003]

I am lucky, if I set down and rest I am ok. I can watch tv and I can listen to music. It helps with tinnitus.

[lottiejemma]

Exactly the same symptoms as you my friend --- Take care