Anyone who has a job that suffers from ataxia, W... - Ataxia UK
Anyone who has a job that suffers from ataxia, What work do you do?
Hi babygirl 
I had to give up work mainly because my concentration was suffering.
I was office bound and mental focus just wasn't there, apathy crept in
and I decided enough was enough, it was too stressful trying to keep
on top of things, I felt guilty because I knew work was suffering.
We all know Ataxia symptoms can effect individuals differently, some
people can continue working for a long time after diagnosis.
So, now I do volunteer work, mainly online.
I had to stop working when I was in my 40s, I was lucky that my
husband was able to support us financially. It must cause additional
stress to anyone forced to think about giving up employment, it's not
something most people consider before retirement age, and then they
probably look forward to it 
Although I'm now past retirement age, I would much rather feel able
to hold down a job, human nature I suppose, never happy xB
Hi, The reason for asking is I have been taken off ESA,( been told that I am fit to do some kind of work) and put on jobseekers. So I have to look for different work to what I have done before.
In the past I have been a care worker, kitchen assistant, housekeeper, cleaner and I have worked with children.
I am having trouble finding something I can do, I do not have experience, qualifications or skills to do a sit down office or call centre job. I have got an appointment in 2 weeks with the disability team at jobcentre they are supposed to help you look for different jobs. Will have to see what happens.
x
I now have to write everyting down and leave notes to remind me to do things.
I can not leave the kitchen if I'm cooking anything because I'm worried I'll forget about it - which I've done in the past.
In the past, I could boil the kettle numerous times when wanting to make a simple cup of tea.
Little things like that were so annoying. But they could have led to something more serious.
I do keep my my brain/mind occupied as much as ppssible rather than just give in.
It's a funny old world
The disability team should be able to offer constructive advice about this.
I've just looked at various information about jobseekers and it seems that
people are obliged to apply for virtually any job going, which must be
very disheartening.
All your previous jobs have meant being fairly active, something that you
now find difficult? They will have to take this into account, it just doesn't
seem reasonable to send someone for a job they have no skills for.
Get as much information as you can about your rights. AtaxiaUK will
most certainly have advice on being disabled and working.
Keep us posted xB
It is very annoying having to apply and even attend interviews when you know it is impossible to do that job. Will let you know what happens. I am hoping the advisor at jobcentre don't cancel again
They have twice in ten weeks, fingers crossed third time lucky.
How frustrating and maddening! It can't be easy psyching yourself up to these 'interviews'. Fingers crossed too xB
Hi B, I don't know if you have just received an unfinished message from me, as I think it either sent or I have deleted it. not sure what happened. No good on computers. Will you let me know?
thanks Marion x
Nothing received at this end Marion. xB
Well it just vanished then,
It was to say I have seen the disability advisor 2day, she was very helpful, she has herself got MS so she has been there herself. She has been a big help giving me information about people to get in touch with and benefits to put in for that no one else has. I will only be dealing with her from now when I go to job centre. Which is good. I see she again in two weeks. Marion x
Marion, I'm so pleased for you There are some really helpful people out there xB
Concentration and memory John, these are a constant battle for
me
I've just written myself a note about a hospital appt, I stuck it at
eye level near the kitchen roll, so I couldn't fail to see it.
But, quite often something can be in my line of vision and it still
doesn't actually register, if you know what I mean.
Multi tasking, or trying to, can have serious consequences these
days, one thing at a time seems to be the most practical way to
proceed xB
Thank you for asking this question babygirl123, I just thought I was getting old, didn't realise that my poor memory/concentration was down to the ataxia. I have just adapted by writing myself "to do" lists all the time. Carry a note book with me all the time in case I think of something need to do.
Hi marina63, my memory isn't to bad, its the physical things I struggle with the most. Lifting, carrying, reaching to do things and unsteady walking are going to be a problem when applying for jobs. Especially when they ask if you can work at a fast pace. Answer is NO 
hi babygirl123
I have recently returned to full time working after my employer allowed me to work from home for a while. I am employed in the engineering construction industry and it has been difficult for me to return to. Luckily where I am working, I am allowed to drive and park next to the office I use, my speech is still my main problem and I try not to communicate too often which makes life difficult as I am unable to join in discussions about the job. I am not sure if I will be able to continue in my job unless my employer can find me something to do that does not involve communication as a central requirement. Every case of CA seems different but I hope they suggest work for you that plays to your strengths. I have recently undergone IVIG treatment (basically Plasma infusion) it seems to have helped stabilize my condition a far as walking is concerned although other problems like speech and writing is still difficult.
Hi, I don't drive, I use public transport or walk (crawl). I am useless on laptop/pc I have never been good with it. Always asking my son what I have done wrong or should I say what the computer has. So I will end up having to do a course/ training first which will take till I reach retirement age. haha x
Mmm, a fast pace, I think I remember doing that at sometime
Slow, slow and stop describes me better now
It does actually make me stop and wonder, if I did want to apply
for a job, what could I do?
I function much better mentally when sitting, so that would be a
necessity. Probably something that didn't require much concentration
would come a close second. Definitely nothing fiddly, or needing to
be precise.
This definitely needs more thought, if I don't forget xB
I work with kids in a nursery, have worked there for a year and a half now and they support me 100%. They work around me rather than me working around them. Its hard, i wont lie but i wouldnt change it for the world and they have always said i will forever be a part of the nursery
Hi,
That's good then, must be very good employers.
I sometimes do voluntary work at a community centre kids club. I used to go 3 times a week but find it difficult when the kids are running around. They are aged 3-13 years, I sit and do crafts now so I don't have to be moving around as much. I don't know If you pick up babies and toddlers and carry them about, I am not steady enough to do that.
I can't even pick up or dare to carry my 5 month old niece without stumbling and there is a possibility that I might drop her. So for me working in around kids as a job wouldn't be safe.
What problems do you have due to ataxia?
Hi
i have Friedreichs Ataxia and work in an office. I enjoy working as it gets me out the house and socialising. I only work part time just now x
Dear Babygirl123, I was diagnosed with ataxia eleven years ago, although I had small symptoms for eight years before that. I was a social worker. I took a medical retirement eight years ago due to my ataxia symptoms getting worse. I had 600 cases and did a lot of computer work, as well as face to face communication and phone communication. I also had to write. When I started keyboarding with just my index fingers, as well as slurring my speech and writing things over and over to make them legible, I knew it was time to throw in the towel. My balance was really compromised and I was spilling my tea all the way from the break room to my desk...,ha! My job demanded many things I just couldn't fulfill anymore with ataxia. Of course, stress and fatigue made it worse. I loved my job and didn't want to retire, but really had no choice. My personal expectations were high and I could no longer meet them..., ;o)
I have that problem, spilling my drinks I now stand next to kitchen sink or work top where I make my drink so I don't spill it. I also sit at the bottom of my stairs to eat meals cos it is nearer than going to the table if I am on my own. haha! Things we have to do for an easier life. Less cleaning up afterwards. x
Since retiring from MoD, age 61 diagnosed, with CA formally (originally diagnosed with Parkinson's) Oct 2013, had symptoms for some time but twin sister had similar but passed away last Xmas from MND). I had been working for Mencap with Learning Disability but I have had to give up especially with some clients with poor sight. what brought it home was going to cinema as they, like ice rinks, don't have bannister rails.
It might get me out of the next Barry Manilow concert at the Albert Hall!
On a positive note; I now help run their Social Club only they don't trust me with hot drinks!
As a Civil Servant I could go private having paid into a trust fund, if waiting time exceeds 3-4 months Took 10 days but spent £1900 of which they only paid £1500. Went back to NHS for lumbar puncture (eventually 28th May) 6 months on still no results. I live in Hampshire - is this typical?
What has changed my quality of life is (I assume incontinence due to Ataxia?) a sympathetic GP (not mine) has prescribed Detrusitol (tolterodine) so I can now take my grandson to the park without embarrasment.
This forum really is a cracking idea!
x Rodders
Hi Rodders
Perhaps you should crack the whip since you haven't had the results,
it seems a bit too long doesn't it?
I can trust myself to carry a hot drink at home but in strange surroundings
it's a different kettle of fish altogether
The cinema is a no no for me now, usually the floor is sloping and being
plunged into darkness disorientates me. Plus the volume is horrendous!
Prior to my diagnosis of SCA, I once paid to see an Eye Nose and Throat
Specialist. I wondered if I had Benign Posterior Positional Vertigo. I was
having a really bad emotional day with Ataxia symptoms. He was carrying
out an Espley Manoeuvre on me ( tilting my head and watching eye move-
aments) and lost patience when I found it intolerable and started crying.
The thing is, although he hadn't completed the test, he told me I didn't
have BPPV.
As it happens, I later had tests done on the NHS at a Falls & Syncopy Dept
and they thought I did have it.
Currently, I see a Neuro Physio who does the manoeuvre for me weekly to
try and move crystals in my inner ear.
Poor Bladder control and incontinence are not uncommon, I like to know
the location of facilities when I'm out and about xBeryl
I have to use my Rollator to carry my cups of tea, plates of food etc. It also acts as a table when I lock the brakes on.
I would be totally and utterly lost without my Rollator. I don't move around as much as I used to anymore as the left leg is just a dead weight and hard work to drag.
It's a funny old world
Doesn't it make you wonder how on earth people managed before
rollators were invented John ?
Somebody hit on a brilliant idea xB
all this makes interesting reading as my 16 year old son has just left school and can't wait to get a job, he is doing a skills for employment at college for a year first. He has done work experience but only half a day, one day a week. I really worry for his future.
Hi Lindadoc,
I have been put back on Esa. I dn't have to look for work I am not able to do at the moment. Which is good as it was so stressful and It was getting me down.
I would love to have a job doing the things I used to do, but because of my ataxia I will not be able to do them safely and I dn't want to put anyone in danger.
So hopefully your son will be able to find something suitable in the future. What things is he interested in? Is he still mobile and independent?. It is good that he is doing employability skills at college. x marion
Babygirl123, Ross is still mobile, he does use a chair when walking in busy places and distances. his grip is pretty poor and his speech is slurred. He's interested in photography but when he holds the camera he is very shakey.
Hi Lindadoc
Hopefully your son will get all the help he needs from college..
Is there anything he can take to help when he has the shakes? Or doesn't anything help? x
I had to give up my nursery nurse job two year's ago aand retire on ill health I am 32 now my ataxia is bàd
Stewart Souter here-- I dont work but attend Dundee College -doing a Social care course--- which is a fantastic course - as I am seeing it from a different angle. Would love to have a meet up with others in the Dundee area- just an informal get together. I find the Post Office bar really good for access- Stewart Souter
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