Just something I’ve been wondering about, I’ve got an appointment to speak to my specialist nurse but I’m just wondering what other people do. I can be better at work by taking more medication and I can get by on the higher dose, but I’d like to be taking less at this point in time. I can manage ok on less - but not at work because it limits the amount of exercise I can do and requires a great deal of time spent doing things I find stressful and difficult.
I have hung on at work with Parkinson’s for the past 7 years but now I need to think of an exit strategy which will either be early retirement or ill health retirement. I can up my medication so that I can cope and if this is a reasonable expectation, then I will have to take early retirement, but I don’t need to increase my medication yet and wouldn’t need to if it wasn’t for work. I’m just wondering what’s a reasonable expectation in terms of doing everything necessary to be in work?
Thank you for any thoughts.
K :-s
Hi Jackson,
My first thought, for what it is worth, is that there may not be an objective “ reasonable expectation”…there are a number of factors to be considered and these will vary for each individual depending on their own particular circumstances and feelings.
The priority must surely be maintaining your health as well as possible for as long as possible and doing whatever you can or need to in order to achieve that, as far as you are able. Then…
To mention a few other variables which come to mind:-
- extent to which income is needed,
- whether the need for income can be met from another source
- value of work , or lack of, from a non monetary point of view
- possibility of reduced hours at work
incl how you will spend your time if not working and whether that is fulfilling and satisfying
Some things are roughly quantifiable…e.g. pension forecast…some things are less so…how your health will progress
You don’t sound like the kind of person who will rush into a decision, which is wise. Might be good to talk it over with relevant professionals, health, financial, occupational etc and then make what seems to you to be the best decision at that time, for you and yours.
Regards, Pippa
Thank you for your thoughts, you are absolutely right 
Of course I don’t know the answers but I’m working on it. I really can’t do my job anymore, I’m in the building in person but in reality I can’t sit still for long enough and I can’t focus for long enough and I’m being carried by very kind people. I’m still working age so I don’t want to up medication too much but I suppose I was wondering if it was worth it to do my job for another year or so. I feel bad for trying to claim ill health retirement ( it’s utterly illogical but I’m not sure how ill I have to be and I’m not sure I’m ill enough but I can’t do my job because of the Parkinson’s). I’m advised that I’d be foolish not to consider ill health retirement financially but giving up work is such a big decision and as a single person I’m making it on my own.
It will, however, work out one way or the other and all thoughts are gratefully appreciated so thanks again.
J
I am in the process of early retirement. It is so hard though having to give up work both mentally and financially. But unfortunately got no choice.
Having no choice is really hard, have you got any support at home/work? As well as the financial impact and the total panic about not working (how do you fill the days? There’s going to be huge work shaped hole in my life in the near future for sure) I think it really makes the impact and permanency of having PD hit home.
Ironically, for me, I’ve been hanging on to my job by my fingertips through a series of restructures where my name was always on the wrong list for a few years, but now that I’m really struggling, they’ve decided they’d quite like me to hang around in some capacity for a bit! Trouble is, we all agree I can’t do full time and I have a mortgage to pay.
Have you found any good sources of advice? I just keep being signposted and pointed towards paying for financial advice but I don’t actually know what I’d be asking a financial advisor :-S
In the first/immediate instance, I hope there’s a financial resolution available to you but I know that there’s also the social/lifestyle/emotional impact to deal with.
It really is hard.
Take care.
Jx
It is a nightmare! Mortgage too and struggling. People say do stuff during day, but everything costs!!! So sit in depressed most of time!
It sounds like you’re having a really rough time at the moment. It’s such a minefield to negotiate and I do agree that there sometimes seems to be an assumption that people with Parkinson’s will have money and a partner, or at least family members, who can - and will - provide free care/transport. In reality I know that Parkinson’s is rubbish whatever your situation but I do sometimes feel very alone with it all.:-S.
On a more hopeful note, I’m holding onto the thought that retirement is a really stressful process even if you can do it on your own terms. From what I’ve seen, adjusting to it takes time even without the added dimension of Parkinson’s, which takes away certain choices that we expected to be able to make and makes the whole thing even more tricky, but maybe, in time, it will seem more manageable.
Having money worries can definitely limit the things that we can do however, so it really is crappy, for want of a better word.
I know there’re no easy answers so I can only list things that I have found useful - which you may well have already tried or discounted :-S
Counselling has worked for me but I know it’s not everybody’s thing and access via GPs is variable. I entered into it very sceptically as I knew it couldn’t solve the practical problems but it’s been a safe place to explore thoughts that I have nowhere else to put (if that makes sense :-S)
My work place has an employee advice line. In reality it tends to be an employee signposting service, but it has been another source of information and I think we have to access every bit of advice that we can. I also know people who have found talking to their Parkinson’s local adviser useful, though I have to admit I haven’t tried this yet. I know that they can’t give financial advice (trying to get financial advice tailored for people with Parkinson’s has been an ongoing mission and I haven’t succeeded yet :-S) but sometimes a fresh pair of eyes on a situation can be useful.
I did actually managed to access a local service offering 1 hour of free financial advice - I didn’t really know what I needed to ask so I didn’t make the best use of it, but I got a bit more information to add to the overall picture.
I’m also going to try approaching the various advisory services again (and risk the dreaded ‘signposting’ - I really do swear I will collapse on route without ever getting to a destination but I figure I have to try) so I’ll let you know if I get anywhere.
I know it will take time but I hope things start to look brighter and I do hope you manage to access some financial advice or support because I know that worrying about money while managing everything else is seriously stressful.
Take care.
Jx
Thanks Jackson, luckily got hubby but still going to struggle financially! Like you said, don’t know what I am asking for, feel sick!!! Retirement is such a lonely experience especially when you have no choice! I did reduce my hours about 6 years ago but now got no choice! So worried about finances, no good for anxiety. Appreciate your response. Take carw xx