How does your Ataxia symptoms vary

[KiwiBob]

I find my Ataxia to be unpredictable. When I went on the sick before Christmas I was couch bound watching tv for about month before my Ataxia started to ease up. I was very tied and fatigued.

Now that I am will rested and spend most of my time avoiding the things that trigger my Ataxia I am much better. Because I am off work I am able to do some exercises / small workout every second day in the house which I think is helping my Ataxia.

I am able to sometimes take my wife’s dog a small walk but I have been court out and had to be rescued a few times.

Some times I show no symptoms at all and I run round daft doing as much as I can including longer walks.

Does any one else have symptoms like this with there Ataxia ?

[Veteran250]

Hi Bob......

I caught a cold/cough about two weeks before christmas and spent christmas/new year in bed with breathing difficulties, using my nebulizer as and when need be.

I move around indoors holding on to furniture, door frames and walls..... when I get dressed or undressed I use my head to lean against the wall to stop me falling over, so my hands are free.

When I go out around town I have to use my electric powerchair, for my own safety.

Hoping you have a Good Friday Bob. 😀👍🌞

[KiwiBob in reply to Veteran250]

Hi Veteran250

I am like that when I am bad. I have to hold on to someone or something at home and work.

And speaking of the Devil (Ataxia). I was getting ready to work in my back garden as I was having a fairly good day, but my Ataxia has just kicked in.

[Veteran250 in reply to KiwiBob]

Hi Bob

My Ataxia is with me constantly, have to lift my feet when walking, I have Dropped Foot Syndrome, and walk with a wide gait..... but not by choice, it has become a natural walk now.... are you a Kiwi from New Zealand? 😀👍🌞

[KiwiBob in reply to Veteran250]

Yes, but I live in Scotland.

[Veteran250 in reply to KiwiBob]

I always commemorate Anzac Day, I am a Royal Air Force Veteran, my elder brother lives in Tasmania, my nephew is a Royal Australian Navy Veteran, and his son is in the Australian Army having done two tours in Afghanistan.

Don 😀

[KiwiBob in reply to Veteran250]

I lived in Australia before moving to Scotland.

[Edward1943]

Any exercise possible certainly helps. I swim three times a week which I am sure makes my life with Ataxia a lot more manageable.

[KiwiBob in reply to Edward1943]

I am doing exercise now but only because I am on long term sick. When I was working, buy the time I got home I was so bad I crushed and went to sleep.

[ConfusedAtaxian]

I would love to be able to go swimming. I miss it and even more my gardening. If it’s a day when I’ve been to the supermarket, I count that as my exercise! I’m glad I no longer work. Every day is different. Happy Easter Bob.

[Veteran250 in reply to ConfusedAtaxian]

I used to enjoy swimming with my daughter when she was a small girl, she was the reason I learnt to swim, but now in my autumnal years and registered disabled with no feeling in my lower legs and feet, I will never swim again.... sadly!

[coat2003]

I have fairly stable ataxia, cannot walk safely WITHOUT a walker...sometimes dizzy...but it all goes, I take time out...I don't work, sometimes stiffness sets in, after a prolonged sitting at the pc..still can use my own legs....had a nasty viral cough, haven't believed, it clears out...if tired a slurred speech...mostly resting... Do your exercises, move as much as you can, eat plenty of veg...good diet, if gluten plays havock, stay glutenfree...Mainly stay positive! It is all in the head...What I mean, there are symptoms, but once the positivity goes...dangerous..

[KiwiBob in reply to coat2003]

The “all in the head” bit is a problem for me right now. I am off work waiting to go though medical retirement.

This should of taken about 3 months. I would ether off got medical retirement or not. If not I would of returned to work.

I was going with the medical evidence I had, but I have put that on hold.

I put a compliant into the NHS and they are pulling out all the stops to deal with it.

I am now being sent to Sheffield Ataxia Center which is what they should of done years ago.

So I will now be off work for at least 9 months or more. If I get medical retirement it’s not a problem. If I don’t get it, I will have to return to work after a long absence.

This hole thing is coursing me a lot of stress.

I

[coat2003 in reply to KiwiBob]

Hang on there. Try to come to some sort of compromise with your employer....reduced hours, gradual winding down of work, perhaps filling in for an absent member of staff...All this providing, you are physically able to and if YOU GET NOWHERE WITH THE NHS...Your problem I can only guess is rather shady, grey area...You feel bad enough, but NOT ENOUGH medical EVIDENCE for medics to go on to retire you....My bro is only 45 and faces similar problems...I am 42 and SOLID, HARD EVIDENCE of ataxia, literally shrunk cerebellum on the scan, you can see my unaided walking straight away...The other issues, no need for evidence, if tired or stressed out, as I am now slurred speech, in Slovak, never mind English, my ma hardly understood....so typing a letter the best solution, the best communication....YOU HAVE TO FIND THE INNER STRENGTH, for further fighting, I am sure of it...YOU'LL GET THERE...

[GlutenLadYorkshire in reply to KiwiBob]

I have been off work for nearly a year I’m only 36, I don’t really suffer at all but did loose my balance and had a disturbed speech last year while I had an ear infection it really stressed me out and anxiety kicked in also, I’m also going to Sheffield in about three weeks time, I do have coeliac disease and stick to the gluten free diet I know don’t have any problem with balance and coordination or slurred speech all test including mri come back clear so I’m a little anxious about a diagnosis my job involved driving lorry’s so it was my livelihood I I don’t really want to give it up if there is any problems.

[KiwiBob in reply to GlutenLadYorkshire]

Hi Bally1982

All my tests came back clear. But they have diagnosed me with Ataxia, they just don’t know what type.

I am waiting to go down to Sheffield Ataxia Center.

I am still driving a car but have gave up my motorbike. The bike still sits in my shed.

Good luck.

[GlutenLadYorkshire in reply to KiwiBob]

Thanks for your reply, I’m off to Sheffield ataxia centre in about three weeks, see what will happen I don’t even know what to expect.

[hsilverman1]

Kiwi Bob,

I have Episodic Ataxia, which has the symptoms that you described.

You need to have Exome Gene testing by an Ataxia oriented Neurologist to be sure of the type of Ataxia that you have.

Good luck.

Always

HS

[KiwiBob in reply to hsilverman1]

My first consultant described my attacks as Episodic Ataxia but the gene testing did not back it up.

I am waiting to go to Sheffield Ataxia Center.

[Catty-Jo]

Hai Bob, every day is different. It depends on the weather. Sometimes everything hurts because of rain and cold. I have artrose to. Sometimes the weather is dry and sunny and I'm feeling a lot stronger. I have excersises twice a week at the physiotherapist.

Just keep on going and try to walk with the dog if you can. 👍

[Episodic_Ataxia]

I have Episodic Ataxia which is similar as it goes in waves however I cannot exercise as it brings out my symptoms. It doesn’t make symptoms better for me but worse.

[KiwiBob in reply to Episodic_Ataxia]

Hi, I was like that. I was so bad with exercise and movement that the physiotherapist suspended my visits because it was triggering my attacks.

I am now attending Sheffield Ataxia Center where I was diagnosed with Cerebellar Atrophy and Gluten Ataxia. I was also told my attacks were Episodic.

I was test for Episodic Ataxia type 2, the test came back negative.

I was put on a drug call "Flunarizin-CT 5 mg Hartkapsein" this drug helps the treats Episodic Ataxia and Vestibular ataxia.

I have gone from mostly being chair bound to walking and being able to exercise and do simple thing like wash the dishes and put them away without smashing them.

[Episodic_Ataxia]

That’s wonderful good to hear