Work

[weegiz12345]

It seems the post I did last week has had no takers so I'll word it differently. Can any of you wonderful folk give me any helpful hints for items that helped people with ataxia who were still working. I'd also like to hear from anyone who retired due to ill health please?

[pinjem]

Sorry, cannot give help but I do wonder if you asked in the general forum about disability and working, other people, if you say roughly what your problems are, may be able to help? I cannot see if this is a general post or just in the Ataxia part of discussion.

[weegiz12345 in reply to pinjem]

Hi pinjem thanks for your advice I'll do what you say. I basically just wanted to know if any fellow ataxians had encountered problems with typing and writing in the workplace and had any good ideas to share to make the job easier.

[Leona89]

I wonder if your occupational health department would be able to help you.

[weegiz12345 in reply to Leona89]

Hi Leona

I've got refferall through them to Access to Work. I'm getting a visit next week to see if they can help but I just wondered if folk on here had any good ideas, Thanks for your advice though.

[february]

Dear Weegiz12345, I retired 13 years ago, after working as a social worker for 28 years due to my ataxia symptoms getting worse. They were effecting my speech (I sounded like I was three sheets to the wind on the phone...,ha!), writing, as I had to write things over and over again to make them legible, typing on the computer, as I was only using my index finger, etc. I worked with ataxia for three years, but finally had to throw in the towel, as my symptoms were progressing. I'm sorry I don't have any helpful advice for you, as I just couldn't keep working with my ataxia, although I tried! My best to you..., ;o)

[weegiz12345 in reply to february]

Dear February many thanks for your reply. I can relate to all your symptoms it's like looking at myself through a mirror. The only thing that's not affecting me greatly is speach although I have to repeat myself continuously. I've had diagnosed ataxia for about 10 years but this last one my ataxia has progressed quickly but looking on here a lot of folk are far worse than me. I'll keep going as best I can but like yourself when the time to go comes i'll have to do it. Many thanks for bothering to reply xx

[Lucycord123 in reply to february]

Dear February,

What type of SCA do you suffer from? I'm 30 and SCA 2 has recently onset. I'm also a social worker and assuming the worst as in not being able to work for long.

Thanks,

Lucy

[february in reply to Lucycord123]

Dear Lucycord123, I don't have SCA. I have ataxia due to Niemann Pick C (NPC) disease. I was diagnosed with Sporadic Cerebellar Ataxia (unknown cause/ progressive) when I was 49 years old, although I had extremely minor symptoms starting at about age 43. Over the years, I had genetic testing for the more well known dominant and recessive ataxia's, always negative. Then in 2017 my neurologist suspected I had ARSACS (another rare form of ataxia). I had genetic exome testing, which was negative for ARSACS, but a single NPC gene was found. Therefore, after a skin biopsy and then a specialized blood test it was determined that I had ataxia due to Niemann Pick C disease. Apparently, I not only have a single NPC gene, but an unknown variant as well. Late/adult onset is extremely rare, as infants, children and adolescents, although rare, present with more serious health problems and usually die very young. It's recessive which means I got it from my asymtomatic parents. I have three siblings, but I'm the only one who got the faulty gene & unknown variant. I'm 65 now, which means I've had ataxia for 20+ years now. It has progressed over the years and will continue to do so. Now, aren't you sorry you asked...,ha! Phew... My best to you..., ;o)

[Lucycord123 in reply to february]

No haha I'm glad for you're in depth reply. Thank you. Sca2 is dominant in my family..mum had for brothers.. All 5 siblings had it... Mum died at 48.. Only one sibling of hers left.

I have 2 younger sisters. One has been tested and has it.. The other one is in denial but hey that's her choice.

I've been to neurologist and prilimarly tests indicate I'm showing mild symptoms of SCA. Still awaiting my genetics app.. Last October I asked to be referred. I'm feeling rather scunnered sometimes. The symptoms in me are mild to see... Staggering now and then... Falling more... Slight words slurring where people think I've had a drink. I was recently treated for 3rd degree burns by making my daughters dinner, I feel its because my movements can be quite brash.

I don't need answers, I know the answers and grew up around it so it came as no surprise, plus all my friends telling me the last few years they definitely see it in me. I now need everyone else to know the answers I.E. Work. I love my job and don't want to give it up but people including social workers and management as it happens can be rather judgemental if they don't see it wheelchair etc. This fatique i get at times and pain in my legs is exhausting.

Thanks for listening,

Lucy

[february in reply to Lucycord123]

Dear Lucycord123, Thanks for your reply and understanding of my looooong explanation...,ha! You seem to have a very positive, accepting attitude of your situation! Kudos to you, as that will only help you as you go through this journey with ataxia! I can relate to the fatigue and pain and I'm retired! I recently had a total knee replacement due to arthritis and a bone on bone situation in one knee. Fortunately that has helped me, as I had severe pain in that knee for months. I don't have pain in that knee anymore...,YAY!!! Just general pain here and there. My legs get very tired and ache! I try to exercise each day and stretch my muscles which really helps me! I also try to pace myself for the fatigue, which, of course, is hard to do when you're working! Anyway, if I do a lot one day, I MUST rest the next, and so on and so forth! It's all a delicate balance with ataxia! Anyway, keep doing what you're doing, as I think your doing fab! My best to you..., ;o)

[pinjem]

One of the helpful people here talked about a keyboard guard. I'd get one but cannot find one that fits my keyboard. I dictate emails etc. I cannot work though.

[weegiz12345 in reply to pinjem]

Hi pinjem

I had a guard for my keyboard about 5 years ago and tried using it for a couple of weeks. i couldn't get on with it, I found it really hard to type.I'm working at the moment but not sure how long for.Thanks for your comment.

[KiwiBob]

Hi, I am going though ill health retirement. I was informed this week that I have been turned down. I now have 2 weeks to appeal.

[weegiz12345 in reply to KiwiBob]

Hope you get a positive result. Am seeing someone shortly to see what qualifies me for early retirement.

[february in reply to KiwiBob]

Dear KiwiBob, I retired due to my ataxia progressing 13 years ago on a medical retirement. Listen to your body and don't give up! Best of luck with your appeal! ;o)

[weegiz12345]

Hope you get a positive result. Am seeing someone shortly to see what qualifies me for early retirement.

[EmWakie]

Hi, I have sca3 and I’m a nurse. I am experiencing medical redeployment at the minute to try and find a nursing job that is more suitable to what I’m physically able to do. I do stagger and almost fall a lot, my coordination is not great- my writing is atrocious! I tend to get worse with my speech when I’m tired but I’m getting used to avoiding certain words now. The patients often notice and say things jokingly like ‘you should take more water with it next time’ my manager has suggested that I should maybe consider retiring on ill health as an option but I’m 35 and feel like I’m too young. So confused at the moment x

[weegiz12345 in reply to EmWakie]

Hi

I'm so sorry for you.I understand everythin you're going through and you're just 35. I'm 58 so am getting to the end of my working life at least. I hope they find something for you that you're able to do. I suppose I'm quite lucky that my ataxia only started 10 years ago and although my handwriting and typing is appalling over time I've adapted the parts of my job where I need these skills. I look back and if I had my time again like you I'd be a nurse but thank god I didn't cos I would have had to leave. My speech is affected like you and gets worse when I'm tired. If I retire I'd like to do volunteering visiting folk in hospitals who have no visitors but I'm not sure if I'll manage this. I hope things work out for you, please let me know xx

[Jujubeelu in reply to EmWakie]

Hi. I'm 35 and a nurse as well. I have turned to home health bc I am able to control my number of assignments. I fi d a seat as soon as I get in my patients home. There is very little writing and more electronic documentation. Have you considered this Emwakie?

[EmWakie]

Thank you. I would love to do something like that at some point. Nurses often just can’t spend as much time to talk to their patients as they would like to, or to just spend time with them. I will let you know how things go xx

[weegiz12345 in reply to EmWakie]

Thanks, look forward to hearing from you.

I see you previosly asked about a blue badge. I got mine because I have the lower mobility part of PIP. I applied in February and after having been assessed by a PIP person I eventually got PIP in June. I only got the standard rate for daily living and mobility (lower rate mobility means you automatically qualify for a blue badge). The form you fill out for PIP is huge and it covers all aspects of eating, washing, dressing and bathing. You have to get some many points to qualify. I need a stick to walk and can't manage without it and I need help with various tasks in the home. Look online to see if you qualify at all pip-assessment.support.

[Hidden]

Well you can Google are go on You Tube to view or get information on the Vegus Nerve Stimulator, this device helps stimulate the brain from many conditions. I have one and it helps majorly, 150 attacks a day now 1 or two weekly or not at all.

[EmWakie]

I am waiting to see the professor again soon and I have some meetings to attend about work but I will definitely apply for it, thanks x