For someone in their forties or fifties (and some were even younger than that) who is given the diagnosis of Parkinson’s disease, although the immediate and long term outcomes may at the time be uncertain, one concern dominates - what will happen in the future? Will it possible to work up to retirement age? Will there be a big drop in income? Will increasing dependency add considerable costs?
Her partner was diagnosed with PD 18 months ago. So far he doesn't need medication and they have told very few people about the diagnosis
I became really sort of anxious about what the future would hold and what the implications would be of suddenly being thrown into a situation where you had, you know, a partner needing potentially a lot of support and at the same time feeling a lot of extra pressure to be the person who, sort of into the future would be the financial provider. Because I think I’d always operated with an assumption that we would probably both be working for another ten to fifteen years and there would be all kinds of things that might just sort themselves out in that time. I mean I know that that’s a silly perspective to have on life, because I’ve had the misfortune to lose close family members in, young in their lives, and I know that these things can change overnight. You can go from thinking that everything is fairly hunky-dory and reasonably, predictable to having your life, you know, thrown, thrown into the air.
Some people had already had to take time off work before they got their diagnosis, but many were still quite fit and could continue to work. Many faced a difficult decision whether they should tell their employers about the diagnosis. Rafa decided not to tell anyone whom he was not legally obliged to tell because the diagnosis had come very early in the course of the illness. He had so far no idea how fast his symptoms were likely to develop and he and his partner had decided not to tell their children as they didn’t want them worrying about things that they really didn’t need to worry about before they happened. Over the course of 18 months since the diagnosis his condition has hardly deteriorated, so for him this was a wise decision.
Others, like Helen, had already told their manager that they were going for tests or to see a consultant, so their colleagues were to some extent forewarned and waiting to find out about the diagnosis. For some the decision whether to tell was more difficult.
Divorced, 1 adult son lives with her, Currently working in management, strategic planner.
My next few weeks were, very difficult because I didn’t, didn’t tell, I had, I was on a probationary period from having been redeployed for eight weeks and my Union, bizarrely, told me not to tell my manager, my new manager, so I was traumatised, traumatised by a preliminary diagnosis, traumatised by having lost the work I’d been spending the last thirteen years in and having to pick up a completely new field which was very challenging with a manager who didn’t want me because I’d been redeployed and I wasn’t supposed to mention that I’d got this condition, I wasn’t any better able to manage that the, you know, the condition at that stage anyway because, because obviously I wasn’t being given anything.
Things got very difficult at work because, my, the team that I was managing were obviously a bit, they, they, they, they were uncomfortable at having this manager who’d come in which they had been told had no experience in their field.
And then they were more uncomfortable when they discovered that I had, you know, some major long term illness, and that was quite difficult, and my new manager obviously felt that the team had the right not to bemanaged by someone who was ill, which was also, difficult. And, things got difficult for me at work I think, and I still didn’t have any time off sick, I was still working as full time as I could possibly manage and without, with, with very little sickness. And then eventually I think in the autumn I was so tired, trying to manage a new job, a team who were uncomfortable and a manager who was uncomfortable that I just went to see Personnel who advised me to see my Union and I basically at that point said, “I’m not quite sure about the ethics of me having been re-deployed simultaneously with receiving a neurology diagnosis, how, how am I, would have been, how have I been expected to be able to deal with all of this?.” And at that point obviously, you know, my employees are public sector so they were very concerned about what had actually happened and they immediately tried to sort out a, a more sustainable situation for me and my office was moved to a ground floor, and they moved, they, they gave me a different post so that I didn’t have to worry about managing a team, and that sort of kept me going for a little bit, it will have to be reviewed but obviously they’d felt that they hadn’t really managed things very well for me. But, if I hadn’t disclosed to everybody, you know, we wouldn’t have had that resolution I don’t think, I’d have been, I would’ve been taken down a competency route because they wouldn’t have understood that I was actually suffering from fatigue and the sort of brain, brain fog.
Several other people encountered similarly sympathetic reactions when they informed their managers. Employers in the public sector were sometimes particularly understanding and willing to adapt. Helen, a nursery nurse for the local council, was found a job where she would not be directly responsible for babies. Elaine who worked for the NHS had so far been allowed over a year on sick pay before her diagnosis was made and was expecting to be able to return to work with reduced hours now that her treatment had greatly improved her condition. When Karen had difficulty keeping up with the targets required in her work she was found another job where targets were not required and she could go at her own pace.
Ann’s husband worked in the private sector and was pleased that their initial apprehension about revealing the diagnosis was unfounded: changes to his work and environment were made including a new computer screen and more space around his desk. New computer technology also helped some people to continue to work – both Humphrey and Geraldine had used voice recognition software.
Yes. Yes it was important that, well firstly that occupational health were aware because they could be supportive and helpful. But it’s important that you advise your manager as a point of contact within the business so that he’s aware of any impact on your working ability. So he knows how to limit what you can do or provide support for your daily work, he recognises what needs to be done and can provide it.
And how did he respond?
Very supportively. In fact, his own father had Parkinson’s disease and he recognised that medication and so on can be very helpful. So he had some foresight and knowledge of the situation and we have regular dialogue and he is supportive of me, which is great.
For me, I think the difficulties are with mobility, writing and travel. So mobility, because walking becomes more difficult, I work on a large site, getting around isn’t so easy. And my job involves contact with people, so I need to be with them. Hand writing has deteriorated quite badly but fortunately one can use keyboards and PC’s which does help to some degree. But it is difficult for me to take notes, for example. And travel, because largely of tiredness, travelling and getting around can be awkward, especially if it’s a long day. So tiredness is an overriding factor. So things, things tend to become slightly more difficult.
We have a flexible hours policy so I can come and go as necessary so long as I do the standard hours during the week, that’s fine. So if I’m feeling tired I can leave early and manage my own time, which is good. Writing, as I say, we can use the PC, which helps a lot. Mobility is something I have to manage but I’ll try and limit the movements that I do make and encourage people to come to me. So things can be done to work around it.
Unfortunately not everyone was so lucky. Judie had to take her organisation to a tribunal (they settled out of court) and Sharon regretted that the teaching profession was insufficiently adaptable to allow her to continue to use her skills in a more flexible way.
...with this disease, I was still signing on at the local Job Centre, you know, and with this disease I could write and, write okay you know that I can’t write very well but I could write that very well, you know, quite fast and as normal, and I went to a job, I was offered a job and I went there and I filled the form, when I was filling a form in this, this chap who was interviewing me he noticed that my hand is shaking so he stopped the interview there he said, “Oh leave it there I will let you know.” You know? So the next thing was he wrote me a letter that sorry there’s no job, then I realised he must have noticed my shaking because in front of him I couldn’t write very well, but then, while this was happening I turned sixty, you know? And then the Job Centre people told me that, “You are sixty you can, you don’t need to come and sign you can go and, you could go on a pension credit, you know, you don’t have to come back every two weeks and sign.” So I went on a pension credit I’m, I’m a pensioner ever since.
Age at interview:
Age at diagnosis:
Married, Adult children, retired training advisor.
It was very difficult. I don’t know how to tell you this bit really. It’s, it is quite difficult to talk about that time because I loved my job. I’d been doing it for fourteen years and I made my superiors know that what my problem was two days after I’d been diagnosed. And remember I didn’t tell my family until that but I thought that I ought to tell them and say that I may need some extra help in order to do my job because a lot of my job was driving as well. And, it was almost like I’d passed my sell by date when I told them that. I said that I would need extra help. All I got was extra work and the pressure of that was so intense that my doctor recommended that I stayed off work and he put stress related. I didn’t know people could suffer from stress like that. But it was an awful time. And I’d rather not talk about it too much because it sort of brings the heartache back up. I didn’t need that on top of the condition that I’d got, and I would like to have thought most employers are more sympathetic, rather than think that you’ve passed your sell by date. But that’s how it left me feeling [sighs], and it’s best forgotten.
Age at interview:
Age at diagnosis:
Married, children. Writer and broadcaster
I do think it’s probably wise to tell people when you have been diagnosed. I mean I don’t see how, as I said earlier, one could carry on developing the symptoms and getting, you know, very slowly but fairly steadily worse, things like walking. I mean my walking is, is much worse than it was two or three years ago. Otherwise they’d think I’d been drinking for heaven’s sake, shuffling around like this. You’ve got to provide some explanation. But I think it is problematic and I think one should be, careful at first and there are ways of, there are ways of telling people and I think I told X in the BBC far too dramatically “I’ve got Parkinson’s”. Whereas nowadays I would say... “Don’t sack me, I’ve got Parkinson’s” [laugh] or something. It’s very hard, hard one to, to handle. And if you are able to be discreet maybe you should try that, but I think it’s, I can’t imagine not being open about it.
Age at interview:
Age at diagnosis:
Married, 2 adult children, retired clerk.
Just... The symptoms of Parkinson’s.. yes, because they were starting to affect me at work and I always said that when it did affect me at work that I would stop. My work was, they were okay I wouldn’t say they were immensely understanding but they were okay. I mean at one time the PDS Welfare Officer was going to phone them and have a word with them because I was on what’s called a rolling contract, which is literally they can give me any hours to work. And when the place got busy over like Christmas and the Summer holidays they were, kept giving me more and more hours to do and I was saying, “Look I’m not capable of doing more hours.” Twenty hours a week was all I wanted and that was enough for me. I really didn’t want to do any more than that because I just found it too exhausting, and the, they were piling on the hours and piling them on and I phoned Gina, the Welfare Officer for the PDS and told her what the situation was and she says, “Well look we’ll do a letter to them.” She says, “Put it in black and white.” And she says, “If they’re still carrying on like that.” She says, “I’ll come and speak to them.”
However once I, I done the letter and my GP, I went and spoke to her about it and she put a letter in for, for me too, and my work was quite bolshy they were saying, “Oh right we want a medical report and everything.” However at the end of it, my doctor wrote a very short medical report and charged them about forty pound for it. So they never asked me for anything again after that. That was the end of that, so that worked out quite well.
Many people could not continue their work as their symptoms became more intrusive. Some could continue part-time (Ruth could not manage full-time but could do 20 hours a week), others had to change their work entirely. Steve was taken off his work in a car factory and put on sweeping instead. Fortunately he was offered redundancy on medical grounds, got a decent pay off and found a part-time job which he enjoyed. Neil continued to work as a long distance lorry driver until his diagnosis was confirmed, at which point he lost his HGV licence and had to give up. Gaynor realised she could no longer guarantee her efficiency as a social worker because things like keeping proper records were taking her much longer to do. Realising that she risked becoming unsafe she reluctantly decided to seek early retirement.
Widow, 1 adult daughter, living alone, retired university lecturer.
Yes, yes. Yes, I went, I went back to work. I, I was, I was able to work, but I, I, I did find that every so often I get periods, and I still do of course, I get periods when I get very weak. And this would happen indiscriminately. So I wouldn’t really know if I was going to give a class and I would have this period when I was weak. And when I’m weak various things happen, and I don’t always, I’m not always able to participate so well in conversations and understand things that are going on. And it’s a bit tricky with, when you’ve got a class. Also I didn’t like lecturing like that, because I like lecturing standing up and moving around, and when I get weak I just have to sit down and I can’t really be very spontaneous. So I decided to take early retirement. And so I stopped in, I wish I could remember the date, I don’t know, about four years ago I think, I think it was something like that. And I haven’t worked as hard since, I mean, no, that’s not, that’s not well expressed. I’ve worked much harder since I’ve retired than I ever worked when I, than I ever worked when I was working. That’s not well expressed either. Do you know what I mean?
Did, how did your employers react when you told them?
Well, they saw me as being normal, you see. They didn’t see anything different in me. And even when I was weak I’d be weak in my office and they wouldn’t, wouldn’t appreciate it, they wouldn’t know that I was weak. I might have said to my closest friends, “I’m not feeling too good.” But when they see me looking just the same they didn’t appreciate it. And this is something that, it annoys me actually, when I tell people I’ve got Parkinson’s they say, “Oh, well, you don’t look as if you’ve got Parkinson’s.” I’m not sure why it annoys me really, because I don’t want their pity. But I want their understanding. I want them to realise that, what I’m going through, but they don’t really. And so it annoys me because, you know, every day is a struggle.
Some people have found a way to maintain a working life, in a new and more flexible occupation. Sharon knew she had to give up the teaching job she loved but when she started a cake baking business that gave her both satisfaction and flexibility.
Geraldine continues to work part time to keep her brain stimulated but always has a contingency plan in case she can’t turn up at a meeting. She finds that people in the voluntary health and government sectors are generally understanding. Several people found employment, interest and satisfaction in fields where their experience of Parkinson’s disease was particularly valuable.
I remember thinking that, that ‘I was diagnosed with two conditions of the, conditions of the brain One was this Parkinson’s and the other one, and the other one was optimism and there was only one of them which was incurable and it wasn’t the Parkinson’s’. And, so what I decided to do was to, initially was to, was to do this walk, a walk that I’d always wanted to do because I’d, I had done a lot of walking while abroad, and, so I decided to walk from John O’Groats to Land’s End, and that was something I always wanted to do and I thought ‘well why not raise a bit of money while I was doing it for the, for the, for research and so. I did this and I just wrote to a few friends and family and was expecting to raise about one or two thousand pounds and ended up raising forty, forty thousand pounds which was incredible and I thought ‘well if I can do that by just’, It made me feel really good about what I was, people started saying that I was brave, I didn’t feel particularly brave but it was nice to be called brave, and, and that started making me think beyond myself really and, and sort of, because up until then it had been very much a sort of inward looking thing, I was looking at myself and trying to improve myself but, but it was after the walk that, after my first walk from John O’Groats to Lands End that actually I had, I took a slightly broader view and, and realised that, that the, the way to, the way to achieve fulfilment out of this thing, to get a sense of worth was actually to, to help other people with it because it, by that time I’d had it for quite a few years, I’d had it for about six years by now, and, no I’d had it for four or five years but , but it was while I was doing this walk that other people with Parkinson’s came up to me and said, “God what you’re doing is fantastic.” And that was, and that gave me a real sense of pride and a sense of fulfilment and, and, it, it, it really sort of heralded the start, the start of this new, this new sort of strategy for me which was not to look at myself as trying to, trying to cure myself but to actually to look at the bigger picture and, and see if there was anything I could do on a, on a wider scale.
And, so then [laughs] I had this even more daft idea which was to walk around the coastline of Britain which was something called ‘coasting’ and that really was an absurd distance it was four and a half thousand miles, and, so I did this in two thousand and, two thousand and two to two thousand and three, and that raised [sighs] to cut a very long story short that raised three hundred and fifty thousand pounds. And, and then having done that it really sort of, proved to me that actually what, my, and my strategy was good and that it was, it was not, not only helping me but it was helping other people and it was, it was a momentum and, and, and, it was all good, it was good at every level really.
And, so from then on I’ve, I then decided that actually there wasn’t enough emphasis on, on the word cure with Parkinson’s Disease because I’d met the scientists who were talk in terms of a cure and these were scientists who had a look in their eyes, some of them they had a look in their eyes to, to, to suggest that actually they really did think they could cure it, and, and I thought ‘well why not? Why shouldn’t it be cured?’ and So since then I’ve, I set up this charity with three other, three other patients.
I run the charity so, so I’ve got, yeah I’m, I’m involved in, in, in all sorts of things, I’m involved with the, there’s a World Parkinson’s Congress which is coming up in two thousand and ten which I&rsqu
Age at interview:
Age at diagnosis:
Divorcee with three children. Head of Charities Commission. Retired.Now works between Toronto and Wells as a part-time consultant on social finance and governance.
I think the work was the saving grace and the professor always said that to me, “Don’t give up your work until you absolutely have to.” And I haven’t now, you know, I do I work freelance now but I do things and I get people to come to me now. I didn’t think they would but they do. I thought well, if I left London, you know, that would be it. You’re not seen then you’re not used but people remember you for certain things and it’s surprising how many people live down this part of the world I found out. So and it’s quite a nice place to come to so I am gradually building up, not a business but a range of activities that freelance that I can still do and things that don’t involve physical activity necessarily. Like I write more now. I write articles and things because that I can do even if I’m stiff because I have voice activated software or I have [someone] who comes and helps me out and will I’ll dictate to her on a tape and she’ll type it up for me. So I’m never unable to write and that’s always an escape because whether it’s children’s stories I can write or an article.
And I do keep up with the politics of Parkinson’s really because I think, you know, because I have worked inside and outside government I do know how the systems work and if there’s anything I can do to help other people it’s try and get those systems to work the best way possible. And, bless them, you know, doctors when they go to give evidence give it in such scientific language that MPs really don’t understand. So sometimes they take me along and I sort of wrap it up and try and explain in common sense terms what it means to me, you know.
Rex took early retirement, his wife also retired on health grounds, and the two of them have been enjoying the closeness this has allowed them. Though most of the people who did retire from work felt that their decision had been appropriate and inevitable, they were not always prepared for the social implications of no longer being in work. Joe, an actor, had managed to continue working in theatre and radio for 12 years after his diagnosis but had eventually had to retire – which was a difficult adjustment since as he said actors tend to keep working ‘until they drop’.
Yes [sighs]... it does wipe out your life, and actors of course don’t retire they keep going till they drop, so when I had to stop working I found it very difficult indeed because my sense of who I was was very intimately bound up with my acting, if I wasn’t an actor who the hell was I? What was I for? And I was very depressed for a time and found it very difficult. But I’ve got used to not doing it any more and now it seems to be such a frightening job I could never do it, when I think of things I coped with, as an actor, I mean silly things like quick changes and remembering which character I was playing and at what point in a play it seems to be very, very hard to do.
Age at interview:
Age at diagnosis:
Married, 2 adult children, retired clerk.
I mean that’s nine years that, that I worked with, with the diagnosis. And, it was a big decision to make. I struggled with it for a few months and my GP was, kept, I mean she was excellent, she just said to me, “Right I’ll leave it up to you to decide.” She says, “Personally I think you should give up.” But she says, “I’m going to leave it up to you to make the decision because ultimately nobody knows how you feel. But it’s, you know, you’re the one in the in the end that knows what the situation is.” So I spoke about it with my husband, we talked it over, and he again said, “Oh well I’ll leave it up to you, we’ll see how you, you know, you make the decision.” And my daughter and I spoke about it and she said, “I don’t think you should give up work.” She says, “Because I feel maybe if you, if you give up work maybe you might regret it because once the step’s taken, that’s it you can’t go back.” And I did find it quite difficult to come to the decision.
I miss the people that I worked beside and I miss like, just the banter that we had in, you know, sitting sometimes in the canteen and somebody would say something and the whole place would erupt. I miss all that kind of side of it, and we are a bit worse off financially, but nothing that I can’t cope with. But then I think about people where it’s maybe the man that has it who’s the, who’s the main breadwinner and that, you know, I think ‘oh what a shame I’m glad that I’m not in that position’ because I just don’t know how would I cope that way. But, it’s not too bad for us.
Most people did not complain about the financial implications of early retirement. Several had received a lump sum payment when they left work.
I couldn’t I don’t honestly see how I could cope with working and and being tired.
Do you find that depressing?
No, not really actually. Bizarrely as it sounds and I I'll tell a little short story as to why it’s not depressing. I mentioned to you perhaps when we were talking before about this. I went back to university when I was forty. And I decided, you know, I really enjoyed it. It was one of the best times I’ve ever had in my life three years at university. Well, it was four years because I had to do A levels first and then I went to university.
And I always said to my wife, you know, “If I win the lottery, I’m going to go back to university and just stay there and do course after course after course. Because It’s just learning stuff and education is is just so good. And what I say now to people now is that having Parkinson’s in a way is like winning the lottery for me now because I’m doing the Open University. I’m on the internet. And I don’t just I don’t mess about on the internet with chat rooms and things like that. I am teaching myself about particle physics and stuff like that. And I spend hours and hours and hours reading books. I’m a big fan of poetry and and classic literature and I read, you know, I must have read more books in the last two or three years than I read in the rest of my life put together. And and I enjoy educating myself and learning things all the time. I don’t. Like I go out for a short walk every day and I take my wildlife and wild flower guide with me and and I’m looking for things to learn about all the time. And it’s great. That that was what I would do if I won the lottery would would just teach myself stuff all the time. So in a way I feel fortunate that I can do that and engage myself in that way.
Several people mentioned the helpful advice on benefits that they had received from the Parkinson’s UK, Parkinson’s nurses and the Expert Patients Programme which runs courses which inform people about key benefits. Gaynor mentioned how unfair it seemed that while her husband could have free prescriptions because he suffered from diabetes there was no such arrangement for people with Parkinson’s disease. One person had taken out critical illness insurance five years before the onset of her Parkinson’s disease and had received a substantial payment from this. She had also taken out mortgage repayment insurance and was hoping that she would get help with this as well.
The biggest battle is getting money out of the government to pay for all the pensions and then you have got, then you don’t get the money straight away. The DLA come in, they send a nurse out, the doctor out as they did me and they work out about £14.50 a month [chuckles] and then you start thinking, “ah what are we going to do here.” And they send you a letter saying if you need this money, if not tell us and send us the money back.
So you then fight the battle of getting the carers in and you turn it into a reasonable pension with the Parkinson’s. But it isn’t easy and to get the money you want, it is not easy. You have a limit I think a maximum I think of about a couple of hundred pounds a week and that is about it really. You get a mobility allowance which is another small thing. If you are paying for your own pension which I am or was they still tax you. They still tax you. They know you may have X amount in the bank and it is not much but they still want to know how much you have got there and how much, because I have three tax offices and none of them talk to each other. I am dealing with one, two and the third one I get all the paperwork from but they don’t talk to each other. And you know you are running round. I started once with querying my tax forms and after about six months of phoning up and talking to them, well… do what you want. You know. There is nothing I can do about it.
So there is a lot of bureaucracy that you have to sort out?
Yes. The form for main payment as I say is 14 pages long and for Pete’s sake if you get this form, go to the carers or professional people and let them fill it in as it should be filled in. Don’t write down and say I’m alright today. You always put down on your form even when you go and see a doctor, for instance if you go and see a doctor or the, the registrar or whatever. Don’t say you feel great that day because most people put a face on. Go and tell them when you are ill, when it is serious, that is the time to tell them. Then they have got a true picture of you. Not like if I walked in with a happy go lucky sort of walking, staggering and sort of looked as though there wasn’t anything wrong with me. That is not it. Just express your feelings and tell them about how you are when you are really ill. And then you might get listened to a bit that more. Then you get another load of forms. But there you are.
For the latest information on benefits see GOV.UK's website.