I was diagnosed with ataxia a couple of years ago. I have lived in hope since then that I would show some sign of recovery as the cause was thought to be gluten. By cutting it out I should get better. After 18 months on a vey strict diet I have shown no signs of improvement and have in fact got slowly worse.
I have a very understanding boss however my output is so low t work I am really struggling to produce much of real value. My speech is so poor that I don't communicate much in meetings and when I do, colleagues don't understand what I'm saying or I get talked over. My keyboard skills now are down to one finger on each hand and my writing is almost unrecognisable (even to me). My work as a Project Manager takes me all over and I have found ways to cope with buses and trains (I voluntarily stopped driving in January after my third accident in a year which I put down to my condition). I don't want to give up work but I don't feel capable to do the things I need to. Parts of my role have been removed already to support me but it has now got to the point that I know I cant effectively do the bits that are left.
I feel that I am at the crossroads now and don't know which route to take.
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Coxy123
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Morning Coxy. My hubby had the same thoughts and feelings. Its really difficult when we still want to be a productive member of society. My first thought is that you will know when it's time! So with that in mind 😀 I presume that you have not quite reached that stage? Can you reduce yr hours? Dave started by having Wednesdays off. So he only had two days of work together then a day off. He then dropped to working Mon, wed, and Fri. -- he also had a very understanding boss. But on the third occasion of falling at work and being brought home, he decided he'd had enough. He then stabilised for a little while, because of the decision and the reduction of stress. We wish you all the best in your decision.
And find a hobby that will help to occupy yr time! Lol
Thanks Eileen, I have lots of stumbles at work but no falls thanks to a walking stick and furniture crawling. My wife thinks I am mad in going to work but we still have a chunky mortgage to pay off and 2 boys (8 and 10) to bring up.
You'rd right in that I don't feel ready but I'm so unproductive at work, everything takes so long and I forget to do what I'm meant to do half the time. In summary I have the desire to work but not the capability
Hi again. Look at all insurance policies re mortgage, etc. I realised in hind site that dave could have claimed when first diagnosed/ then again as soon has he finished work. But we didn't realise so we are still paying the premiums!!!! Still, the money is there, in case of another health crisis. Or for the kids Lol 🙌🙌
Hi you will know when the time is right. I finished work because everything became too difficult and I was becoming extremely tired doing the smallest of things. Luckily I was coming up to retirement anyway. So no great financial implications. I also applied for PIP and got it. My advice is make sure you have good support from family and your GP and continue to keep yourself active for as long as possible
Thanks, I have applied for PIP, seeing what benefits I can get (ESA has been mentioned which I believe can help with the interest element of the mortgage) and am finding out what my pension is worth.
I want the driver in my decision to be my condition but it feels financially led currently
Like you I felt that my contribution at work was diminished, I receive PIP and my pension covers all my commitments. Finishing with work certainly allowed me to concentrate more on my condition. After 35 years of working it was wrench but less stress with trying to do my job has helped. You will know best when you should finish and most financial aspects can be sorted out, just list what is essential and what can you cut back on, it is not as scary as you imagine!
Yes it's a tricky one, you'll have to redefine yourself. I was diagnosed when I was 14 and made redundant from my last job 5 years ago aged 49 (to be honest I didn't feel I was contributing much of value and feeling pretty frustrated). After 3 years of applying for jobs I realised it was time to call it a day and go onto benefits.
Most of my friends say I'm much better for it and I keep my head above water financially.
However, like I said, get ready to redefine yourself (I grew a beard to rebel against my old life!). It's very strange if you've measured your life in 'work' achievements, I find my motivation is at it's lowest in the morning when I realise I've got nothing to do all day.
It'll help if you've got a hobby you can really develop; and think about volunteering, I'm a steward at my local gallery/museum - it's great if you've got a wheelchair and all they really want you to do is be friendly to people and watch over the exhibits.
The other thing I'd recommend is MOOCs Massive Open On-line Courses, some of the world's top notch university departments are making their course content available for free via on-line video lectures, you might find a new way of employing yourself. I suspect the 'Leading Strategic Innovation' course from Vanderbilt Uni on the Coursera platform would be right up your street as a project manager - best course I ever did!
Hi, my name is Ali and I was diagnosed three weeks ago. I have worked all my life as I was unable to have children. Due to my condition I have not worked or actively looked for work for the last 18 months. Purely because I was in limbo, not knowing why I felt so rough. People think I am mad but I miss work, I love to have a laugh and miss my mates, also feeling that I can't contribute towards the bills has been difficult. So, in answer to your question, you should do what ever you are comfortable with. I am coping by forcusing on what I still can do and NOT what I can,t. Your colleagues still value what you do, so could you perhaps change your hours and your role to accommodate your condition, I am sure they don't want to lose you. I wish you the best of luck in your decision, but don't beat yourself up, you did not choose this. Keep your pecker up. Ali x
Thanks for your comments Ali. I have my annual review this week (not done half of what I should have done) and will use the opportunity to talk honestly about the future. I need to consider the implications on the final salary element of my pension if I do step down into a lower paid role
Hi there Coxy123,
I really feel for you as my husband was in the same position some 10 years ago. Check long term disability (LTD) with your company. This is the same insurance policy carried by the employer that would pay death in service and is generally a part of salary packages. This policy was a god send for us as Alan has only just retired but had received 2 thirds of his salary for the last 10 years! This does not affect DLA or incapacity benefits. You will find that you will have to be assessed by a doctor of your employer's choice but after that you should be able to receive all your present salary perks like private medical cover and draw at least part of your salary. I hope this is the case for you and that this information is useful. Good luck!
Thanks for the info Carol. Thankfully I have worked for the company for 25 years so have built up a reasonable pension. We have death in service benefits so I'll talk to them about LTD. So far my experience with the pension dept has not been very successful and getting info out of them has been difficult; they cant tell me how much I am likely to get if I do retire unless I put in a formal request to retire...which I don't want. I'll carry on as long as I can but I am less productive than I should be, make more mistakes and get distracted very easily. My motivation is not what it was either. Hope Alan is doing well
Imv disabled or not you know when it is time to give up working. The lucky ones can make the decision themselves but some, like me, have the decision made for them by their employer!!!!!! I think retiring (at whatever age) is determined by health and finances. If your health is poor and you cannot contribute as you did it is surely in everyone's best interests to take early- retirement? This will of course depend on financial circumstances but my view is that the benefits system (once negotiated!!!) is quite generous (ESA, DLA, PIP). My son also contributes towards a fantastic car through Motability which is a brilliant scheme for those eligible. I hope these thoughts are of some help.
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Still having problems with work
Knowing when your Ataxia has taken a turn.
