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I got diagnosed almost 3 years ago and have a trembling left hand that doesn't move when I want it to but still works on its own, my voice is getting indistinct, especially to my wife, typing is problematic, my face has lost expression and I walk with a stagger and occasionally freeze when trying to take my wallet out of my pocket. All par for the course and not too debilitating.
It's the other stuff that's the problem, I am a teacher at an elite school teaching very demanding teenagers. I simply cannot stand up in front of then anymore. When they ask me questions my mind goes blank and I blurt out some unintelligible nonsense. it was this sort of thing that made me realise I was ill in the first place. I am a very well respected teacher, I write text books, I'm turning into a blithering idiot, worse I'm becoming invisible.
When I got diagnosed I realised I couldn't teach from the front any longer so I wrote activities so that my students could work through the course with me as a guide. Took me about 4 hours of prep for each hour of class time. It works really well in that it engages the students but I have written myself out of the equation. I go to work sit in my room, students come in and go out but sometimes I don't say a word. The students do well in the exam but I am beside myself with boredom. I try to do the odd bit at the board but it doesn't go well. The other day I was talking to the class and realised no one was looking at me so I just shut up.
My employer is extremely supportive but no one has actually been in to my class to see what is happening. Physically I could keep doing this until I die but psychologically I'm not coping. I am getting nothing out of my job and my students aren't benefiting from my presence either.
I have no financial worries and have a lot of hobbies. I've always said I would stay in my job, that I used to love, until the last moment but I'm not really doing a job any more. Is it acceptable to go on sick and eventually disability pension, because I can't do my job anymore even though I actually feel quite healthy?
I too am struggling at work, though at an earlier stage than yourself. My main issue is fatigue rather than motor symptoms though I do have some occasional difficulty with speech etc.
The approach I am taking is to be very open with my employer about it and do a phased withdrawal from work: I will probably move to a 4 day week next year and eventually a 3 day week and a different role that is less client facing.
My thinking is that firstly I still need the money and secondly I would like to stay in the working world for as long as is reasonable.
Not sure is this sort of approach is possible in your situation?
I live in Norway and can take a year sick leave on full pay. After a year there will be an assessment and i can move over to disability allowance which will be not far off full pay. i was wanting to stay in work as long as poss but now i feel it is not doing me any good. on the side i have a website that pays me more than my teaching job, this i would keep doing. when i write it all down it seems like a no brainer.
The way I think about it, the are three reasons to carry on working:
1. The money
2. The enjoyment
3. The self-worth
If you no longer get/need any of these then, as you say, seems like a no brainer...
Best of luck!
Greetings Woolly, and you get my full admiration for your positive, independent and worthy attitude. I am in the same boat myself; I am 53, diagnosed 3 years ago, and have worked as a self employed Geologist for various companies until July this year. I now am out of work, and really should be looking for future employment and getting my CV out there. However, I have left side tremor at rest, my left arm moves only with 20% capability, my typing is 'one-handed', and I know I can't present to a listening class/room of people, as i've witnessed the concerned looks in the faces of attendees this year, as the trembling is so evident when stress becomes involved. My advice, given you have hobbies, pension and an 'intact' reputation, is to get away from your line of work, and reduce your levels of anxiety. It strikes me that you may have the good discipline and resourcefulness to generate a stream of income in a parallel or affiliated capacity, perhaps as an academic author. Personally, I don't want an employer to keep me on their books if I considered that the underlying motive stemmed from an act of sympathy, and I perceive that you feel that you are only firing on 1-2 cylinders, and recognise that you may not be giving the level of training you were once capable of ... my every best wish...Will Churcher (aka spitz)
Hi Will; It's a big decision, thanks for your thoughts. I know that once I go on sick leave there is no way back. It is bad enough being the teacher they know and respect, would be worse being the guy who has come back and for some strange reason can't write anything on the board.
JF; definitely lacking in all 3 areas. I wasn't quite accurate about the pay, after one year on sick and full pay I'd go down to 65% max but better than a pension. As I said I earn enough on the side to not have to worry but it's always difficult to decide to take a drop. Maybe I should think of it as early retirement.
yep Woolly...agree entirely; I find writing to be very difficult myself, now, and got into a fluster when asked to witness a passport photo declaration on behalf of a friend, recently...I couldn't begin to write on a board in public classroom; On a similar note, i also purchased 'Dragon pro' voice recognition software for report compilation, but it has as yet proven to be far more of a curse than an asset, and wasn't cheap... I certainly wouldn't contemplate a period of sick leave unless you're anticipating some amazing recuperative surgical operation..
first what is the problem? I don't interact enough with students.
Reason: When I try to talk to a group I get confused especially when writing on the board.
Solution: Prepare a set of short presentations that I can use to summarise the content of each lesson (which will remain student centred activities). In that way I can increase my class presence, feel I am doing more and retain my job.
How do I have time to do this? take sick leave, maybe keep one class to test the material.
After one year return to full employment, if it doesn't work go off sick again.
Side benefit is that all the material would be perfect for my student website
Now that's the sort of fighting talk that cheers us all; Well done. I'm sure you'll end up with a set of stimulating presentations that can readily be introduced by yourself, and succinctly steer the students to other papers/articles in which they can extract the meat of each topic...,most uplifting !!
Thanks for the encouragement.
The closer you get to falling off the harder you hold on.