Hi, I was diagnosed with PD 4 years ago aged 52. I am so worried about financial problems. I work part time and am starting to find it very hard. On the outside I look ok apart from my tremor people wouldn’t perhaps notice anything was wrong. My job can be very stressful and by the end of the morning my body feels so rigid, I can’t write and the pain can be unbearable. I do not sleep well and get up at between 4 an 5 am and by the end of the morning I am so tired I sometimes feel I am going to fall asleep at my desk. Driving home last week I nearly lost control of the car because I felt I was going to fall asleep and it really scared me. My bosses are really supportive and will do anything to support me but I am worried what would happen if I can no longer work. I am married and we still have quite a large mortgage so my income is crucial. I wonder what I might be entitled to or if I can take early retirement due to ill health as I have 2 private pensions. Any advice or thoughts would be appreciated as we all know stress make symptoms so much worse. Thank you.
Welcome to the forum. You’ve come to the right place as I’m sure our forum members will be able to offer first-hand advice and words of reassurance. I also recommend visiting the sections work, money, driving and legal and money, grants and benefits on our website. Our free and confidential helpline will also be able to help with benefits and employment issues - just call 0808 800 0303.
Forum Moderation Team
I was diagnosed at 48 and am a single person with only myself to rely on financially and a mortgage to pay off. Like you, I also reached a point whereby I could do a passable impression of looking ok, I still can sometimes, but in reality, I was paddling furiously beneath the water at work yet I was still sinking. I do feel for you because it is such a difficult position to be in.
I’m no financial adviser and I don’t know if I can say anything that will be of help but I would definitely recommend phoning the helpline and reading all available advice sheets as a starting point. The Money Helper website might also be worth a try and you may well have done this but if not, I would definitely research your pension rules and regulations as nobody can advise you on your specific situation without this information. If you have access to any sort of independent financial advice, it may be worth looking into this too. I managed to find a scheme whereby I could get 30 minutes of free advice but I can’t remember how .
I would be prepared for the fact that while there is a decent amount of general information out there, getting information about your own particular situation can be a challenge. When I first sought advice, I got really frustrated because everybody kept signposting me to somebody else but I think I had unrealistic expectations of the advice that I could be given by any individual organisations so I think this is something to bear in mind. In the end, I pieced bits and pieces together from all sorts of places and definitely benefited from having some very patient friends.
For me, looking into ill health retirement felt very final. I desperately wanted to carry on working but even when I admitted to myself that I couldn’t, I didn’t want to admit publicly that I knew I couldn’t do my job anymore because I knew that once I did this I was going to have to leave with or without my pension - which was terrifying. The problem was that I couldn’t do my job - I was falling asleep in meetings, I couldn’t sit still enough for long enough or do anything quickly enough to be effective, I couldn’t write or type and I couldn’t get myself to work on time; my team were covering for me left right and centre and nobody could suggest any further adjustments.
I was ultimately given my pension on ill health grounds and even though I still resent having to give up work, I know that I am lucky to have this.
Your pension may or may not have provision for ill health retirement but even though the situation may feel totally impossible at the moment, there will be a way through; it really is worth pursuing any signposts you’re given because there will inevitably be options that you haven’t considered and it is the best way to work out what your choices are.
Wishing you all the best
Thank you so much for taking the time to reply.
Like you I love my job, I work in a doctors surgery as the bookkeeper / administrator for the past 10 years. It is so scary to admit you are having problems, I feel like a failure and also feel that I am putting more of a burden on my husband as if I stop working potentially he will have to work longer and that makes me feel awful.
Recently my handwriting has got so bad and small that my colleagues can not read what I have put and when I took urgent blood tests results from the hospital I could not read what I had written and had to call the hospital back and that really upset me.
I will give the adviser at Parkinson’s UK a call and see what they have to say.
Yes, what you’re saying absolutely resonates. Trying to deal with all the feelings around having Parkinson’s and having to acknowledge you can’t do a job that you love while simultaneously having to prove that you can’t do the things that you wish you could do in order to be able to have some degree of financial stability is challenging and that’s for sure.
I didn’t always manage it but it’s so important to try and hang on to feelings of self-worth while you’re working your way through this - there’s so much to figure out practically that emotional well-being can get overlooked.
Take care and hang onto the fact that you are worthwhile and you are still you (if that makes any sense at all ).
You are so right,I never thought that all of this would have such an impact on my state of mind. I cry at the drop of a hat which is not me at all and I don’t really recognise the person I have become recently. I have two close friends in our village who were diagnosed the same time as me and we get together every couple of months and it’s so great to talk to someone who really knows how you feel. My favourite comment from a lot of our patients is “but you look so well” which is great but some days when i am feeling dreadful I could screen “if only you knew” but I paint on a smile, behind the mask and carry on.
Take care of yourself and thank you for your positive reply. X