Medical Retirement

[din55a]

Hi, my name is Dinesh and I am a 47 year old male, married with 3 children; aged 22, 17 and 14.

I inherited the disorder from mum and although I knew I had the condition some 5 years earlier due to my symptoms mainly to do with balance which was getting worse overtime it was not until 2010 that I tested positively.

I am currently in full time work. I am hoping this will continue for some time yet. I am the youngest of 4 children and 2 of siblings have the condition and progression is further down the both of them.

I am coping at work but have noticed my condition deteriorate when I feel fatigued. I bought a walking stick 6 weeks ago and I am learning how to use it, It's a fold up one which I took to my work sine I use public transport. I figured it was better then looking drunk all the time.

I wondered if anybody recently has gone through medical retirement and what was their experience like? My consultant thinks I should only tell my employers of the condition when my performance is questioned.

[HarryB Administrator]

Hi Dinesh

Thank you for your post. My name is Harriet. I am 36 years old and was diagnosed with a cerebellar ataxia over 20 years ago when I was 15. I read Medicine at Glasgow University and graduated in 2001. I worked as a doctor specialising in psychiatry and worked full time until June 2011. Due to the progression of my symptoms I was off sick for a period culminating in me taking medical retirement. I sold my second floor flat in Glasgow and in July 2012 moved back to Lytham St Annes in Lancashire where I grew up and where my Mum and step-dad live.

I knew before I went to University that I wouldn't practise as a doctor until retirement age but taking early retirement was still a very difficult decision for reasons you will understand. Three of my main worries were being able to occupy my mind after stopping work as a doctor, missing the social interaction with other people that work allows and also the significant reduction in my income. I actually thought my neurologist would tell me not to be so silly considering retirement but he didn't at all and was extremely supportive throughout. This as well as having a good friend with ataxia who had been through the process a couple of years before and the support of my mum and step-dad was all extremely reassuring. Work were also supportive which made the process much easier. I am fortunate in that I am single with no dependents so only had me to think about.

Now that it is all done I have no regrets whatsoever. My quality of life is so much better and I feel so much better within myself. There is no time pressure for me to do things. I can pace myself so much easier both within completing my daily chores and also managing my time through the week. I am able to do my daily exercises without worrying that they make me physically tired as I have the time to rest. I can use my energy and concentration for things I need to and want to do and, again, if I tire, I have the time to rest.

If I am honest with myself I probably should’ve stopped work a couple of years before I did. I think my colleagues could see that but I couldn’t and they didn’t think it their place to say anything to me. It had to be my decision, no-one elses'. My performance hadn’t and never did deteriorate but I was finding the same things harder and taking longer to do. For me, I really knew I was doing the right thing after being off sick for a prolonged period before I eventually retired. I felt so much better and I wasn’t desperate to go back like I usually was after 1 or 2 weeks annual leave. As I said my performance never deteriorated and I hadn’t hurt myself or anyone else thankfully, things that would’ve undoubtedly happened if I had stayed any longer. I feel that I retired on a high and am left with only good memories of my paid working life.

I had always been absolutely up front with my employers about having ataxia. Apart from thinking that was the safe thing to do for both me and them, it made asking for anything to aid my working life a lot easier. It also avoided anyone gossiping or jumping to the wrong conclusion or making false accusations about why I look drunk or why I can’t hear well (I have hearing problems thought to be related to ataxia) or why I was slower doing things.

If there is anything you want to ask, please do not hesitate to do so. I can only tell you about my experience but hopefully it will be helpful to you in some way.

Best Wishes

Harriet

[jurgen in reply to HarryB]

Thanks a lot for your answer, dear Harry..

It was such a relief reading about your feelings

as you don´t find too many Ataxians being that

honest.

my physio understands me - but but then, it´s her

job and she has been my student ys back.

when I retired some 13 ys back I felt like a burden

taken off me - but now I do miss a lot not being able to

travel or not being as independent as others my age.

Regards

Jurgen

[Nigel-2112]

Hi, I am Nigel and I haved FA, untill January 2013 I worked in Canary Wharf for an Inveestment Bank on one of the trading floors, as my condition got worst they arranged for me to have am parking space so I no longer neeed to commute, also I worked from home two days a week, but six month ago it was surgested that I looked to stop work for my long term health. To keep me occupied I vonateer at my local CAB.

The same as Harriet, if there is anything you want to ask do not hesitate.

[wobblybee]

I worked full-time, and later part-time in our family business (office based). As fatigue

and poor concentration took hold, my husband said he needed to be able to rely on

somebody turning up every day. Even when I was there, I wasn't totally present.

This was 15yrs before I got a diagnosis.

I totally agree with Harriet, just getting rid of the stress and responsibility made such

a difference as to how I was able to cope with everyday life as the condition progressed.

[silkwood]

I gave up teaching in 2007.It looks as if I followed the same path as Beryl.

I have no regrets-this hasn't afffected the cognitive part of my brain.

There is now no stress from my job but it does take me ages to do anything physical.

If you have a job keep it until the physical is impossible.

Ataxia affects us all in different ways so your prognosis might be different.The important thing is to keep some sort of routine.If your job fits in with your ataxia that is good.

Teaching and my Ataxia didn't go -lots of speaking out loud and doing games and Pe didn't work but something more sedentary may work.Office work and computers have worked but not deadlines from impatient bosses.You only need to explain your condition if it affects your work.You will know when it is time to give up.Remember it is not your fault.

My co-ordination has only gone recently and I can no longer answer the phone.

I drop papers all over the floor and am a hazard but my knowledge is unaffected and that is an asset.

You can be useful in so many different ways.

[ConantheLibrarian]

Dear Dinesh

I retired last December from my job as a librarian at the same age as you.

Because I asked for retirement on medical grounds I now get an enhanced occupational pension. I don't know if this option is available to you but it is worth asking about as I only found out about the possibility 8 months before I retired.

I would say it is a good idea to mention your condition to your personell department at least. The Disability Discrimination Act means that you can't be penalised for having ataxia. In my case I found that once I told my employers about my ataxia they were able to make some reasonable adjustments to my physical workload and this meant I was able to continue working a few years longer.

As others have said retirement itself is nothing to be scared of. I enjoy mine and there are plenty of voluntary work opportunities available (see for example do-it.org.uk) for when you feel the need to get out of the house and have contact with other people.

Best wishes

Jonathan