Being diagnosed with Parkinson’s disease can cause a sense of loss that is hard to overcome. Despite this, most people had learnt to live with Parkinson’s and to continue with life. Sometimes without many changes, sometimes adapting and even benefiting from the change. Several people said that after the diagnosis it had been very important not to hide but to ‘keep going’ and to keep doing what they enjoyed.
Parkinson’s feels like the most enormous loss. And I think you mourn it. I think that’s what a lot of the shock and the, well it’s awful at the beginning is about, you’ve got to mourn that, that part in life that you’d a got a picture in you mind’s eye you were following, those places in life you were going to be and go and what sort of granny you were going to be. And what sort of a career person you were going to be. But once you’ve mourned that loss and changed your picture in your mind’s eye, then, no you would, I wouldn’t get depressed now.
Age at interview:
Age at diagnosis:
Married, adult children, retired principal lecturer.
I’ve always been used to doing lots of things. I have a big garden to keep on top of, hobbies, a lot of writing. And after I retired I trained as a watch and clock maker and that became a hobby. Now I can’t even hold a watch still in one hand at all so I can’t follow up my hobbies and my writing has got very bad. And so I find I can’t do any of the things that have always interested me. And even the gardening is very hard. I can’t work for very long before I get tired and have to rest. I can’t keep on top of the garden now. Having to employ people to come in and do work for us.
For those people who were working, there were many issues including adaptations to their place of work, their hours, and their work responsibilities (see Work, career, benefits).
Because my partner works full time, we just basically decided to swap roles, I do, I do the housework now. I do all the ironing, the gardening. We help, we help each other. And but I drive. I’ve got a motability car. So it hasn’t stopped me doing, but I’m, I’m a bit slower. When, when it does what I call pack up, I’ve got to stop and rest. I can’t keep going on and doing it. But then I think well, I’ve got all day to do it. So I just sit down and rest and I can carry on ironing or the hovering or anything like that. So it, it’s not, it affects it a little bit, but not, not to the point where I think, “Well, I, I can’t do it.” You muddle through.
While extreme tiredness often made it difficult to carry on previous activities it did not always rule them out. Instead, people found new ways of doing things. Much effort was often needed to overcome people's physical limitations. Many felt it was important to overcome these difficulties to keep active for as long as possible. Several people were determined, as Karen was, to ‘do whatever you can, when you can.’
Married, 2 children aged 18 & 20, still working as a clerk.
Yeah I think it’s, it’s very easy to hide yourself away and think I can’t do this, I can’t do that, I can’t do the other. But at the end of the day it’s only you stopping yourself from doing it. If you’re determined enough, you might have to find ways around doing things. I have a walking stick that I keep in my bag and when I freeze I get the stick out and it gives me the confidence to try and move on and carry on doing what I’m doing. I’m very stubborn and I’m very determined that the disease is not going to beat me, but I’ve also learnt that there are some things that I just cannot do on my own. But I, it’s just very important to just try and do what you can and like I said, don’t let the disease live your life. You live your life with the disease and don’t let it take over your life. You do what you want to do as best you can. I think that’s very important, stay positive, that’s a very important thing, talk to people, stay positive and do whatever you can when you can. I think that’s really important.
Age at interview:
Age at diagnosis:
Married, 3 adult children,
I never was one for sitting relaxing very much until an evening. And now if I work in the garden for half an hour and I need to sit down, I go and sit down and have a cup of tea and relax. And then go back and do a little bit more. I found that planting the garden out last year was very difficult. But ten minutes at a time even. Or change what I’m doing, so I’m changing my posture. Sometimes when I’m working in the garden I ache. My shoulders, my neck, my back aches and I have to take paracetamol and change what I’m doing or sit down and relax for a while. It’s adjusting and learning to adjust and accept that that’s, that’s part of having Parkinson’s. But then I get a sense of achievement when I’ve done what I set out to do. I’m trying to dig the garden over to get vegetables in, but I do one row at a time, instead of normally I would have dug the whole plot. I just do one row and plant something. And then the next day, if I’m fit and well, dig and plant again.
I do yoga, which I enjoy enormously. And the teacher has adapted yoga things for me. Whereas other people are standing balancing on one leg, I can put my fingers on the wall and, and still do what they do but with a little bit more help. There are times that one side of me tipples over and she comes and steadies me. And I find that really good.
Must keep mobile. I mean don’t give in. It is easy to say, “Oh that’s enough I’m going to bed and staying there.” It’s, you won’t win, but you will make life easier for yourself and your partner
So the main criteria for the patient is to keep fit and look after yourself. Don’t give in. Go and walk. Go and dance. Go and do something. Go painting. That sort of thing. Keep active and keep interested in life. I know it is very difficult at times because I was sorely tempted to end it all really. Because with Parkinson’s it gets on top of you. It takes over. All you can think about is what is happening next and what am I going to do next. Where are we going to. I mean holidays, the only time I use the wheelchair is when I go on holiday and then I always get preference for getting on the aeroplane. So look after yourself and make sure you look after the family because without their help it is nothing.
There’s a fashion at the moment for gentlemen in particular is not to wear a tie. That’s a great blessing. But there isn’t any need to wear one these days that I’m not working. Showering and things such as that, no problem. I have a couple of extra handles on the wall attached to the shower just in case of emergencies. When you’re in a, a difficult situation, you might walk towards the television and switch it on, switch it off, do whatever you’re doing. Then you’d say, “I need to turn round, and I can’t.” And I inch around. Eventually you, you play tricks with it, and you pretend that you’re going to turn right, but at the last minute you turn left. And it works.
That’s how you do it?
So it’s again identifying particular things and trying to do something about them.
Rafa gave up running for a while after getting his diagnosis because he was worried in case his leg stopped working as it had before and he would have to explain to his companions what was wrong. He was yet not ready to tell them that that he had Parkinson’s disease. He had however gone back to playing tennis and playing the saxophone both of which he feels help because they force him to use his affected arm. When Steve could no longer compete as a runner this did not stop him from continuing to run regularly and even be voted Sportsman of the Year by his club.
I run every day bar Friday, I train every, well when I say run, the speed I go, I wouldn’t really call it running, but it’s, it’s a plod. But then I used to go with the club this Tuesday, Thursday’s and Saturday morning, but I’ve just had to give up Tuesday for my Pilates. But what I do, is I do what I do at club, I do in the afternoon, then go to Pilates in the evening. So, I’ve been told not to, not to exert myself too much. The Chairman of the Club keeps onto me, “Don’t exert yourself too much.” But it’s very very difficult when you’ve, you’ve been up there, you’ve done it all and you want to try and get back to that, and you know you can’t. And it’s very very difficult.
And it’s annoying when you’re getting people that used to beat you, that you used to beat, are now beating me. And it’s very, very heartbreaking. And I am one of those people that won’t give in but I think, I think in about a years, a year or two’s time I’m going to have to give in. Which I’m hoping that then he’ll find me a slot within the team that I can carry on being a team member, but not do the running, but do the website or something like that you know. I’ve been doing it since 1994 so, you know, I’m not prepared now to give it up.
Age at interview:
Age at diagnosis:
Married, 2 children, still working as a nutrionist.
Oh I was often speaking and giving presentations and I used to say that, I used to start by sort of [laughs] attack is the best defence, so I told people I, I said, “You will probably notice that I’m shaking a bit. That is not because I’m nervous or afraid of you, but I have Parkinson’s Disease.” And I could then see a ripple through the congregation, ‘Oh what a heroic woman,’ and then they forgot. And I said, I also usually said “Please try to overlook it as I do,” and I could again see that they were impressed. And then they did overlook it, so we laid that to one side. But of course sometimes I got so dry mouthed that I had to ask for water, that was a side effect. But apart from that my little introduction usually did it.
Age at interview:
Age at diagnosis:
Married, 2 adult children, retired salesman.
She doesn’t like going out on my own and leaving me. But we, I’ve got the phone here, I’ve got my mobile. I’ve got my books and I’ve got the television, music. I don’t really need to go any further than the toilet sort of thing, you know. So I always say, “Well, you go to your rehearsal for this, that and the other, whatever it is.” We still manage to get to the theatre. We like the theatre. And, but again I will only go if we can book certain seats, and it always has to be the end of a row. And I want to be on the end with my wife next to me, because I can’t imagine what it must be like to have a shaking wreck like me sitting beside a complete stranger, what it must be like for them when you go to the theatre, you know. So, yes, I will only go if I can sit on the end of a row. And we like to choose a certain area in the theatre in the dress circle, where you can stick, there is, the front row, you’ve got a tremendous amount of room to the side and in front of you.
Hobbies were valued as giving psychological and physical benefits. Robert argues that there is no reason to give up the things you enjoy doing just because you are no longer as good at them as you once were. Other things you can no longer do can still be enjoyable to watch. Bob now watches football rather than playing himself.
Steve’s running mates felt that he should not exert himself too much, but he was not sure whether they were right about that. When Gaynor did a Moonwalk with her friends she realised that she was more exhausted and took much longer to recover than they did. But the sense of achievement made it all very worthwhile and did her little harm. It is clearly important for people with Parkinson’s to remain as physically active as they can' there is no evidence that pushing themselves to do a bit more than feels comfortable does any serious harm.
Most people paced themselves while remaining determined to keep active. Eddie, at 83 and living alone, continued to tend his own and other people’s gardens but admitted that it meant that he perhaps spent less time on housework than he should. Ruth struggles to do her housework but manages by doing one room at a time, with frequent rests. Penny struggles to do her gardening but sometimes stuff that needs clearing overwhelms her and it's hard to find someone who understands her need for some help.
Resources exist for people with Parkinson’s disease, but they may not be easy to discover or obtain. Occupational therapists are trained to advise on adaptations which can be made in people’s houses to allow them to live more comfortably. The most obvious is the stair rail which can help take the danger out of a trip upstairs.
Well, we just recently what I did find was that going upstairs. Going upstairs is no problem from the physical point of view, I don't get breathless or anything like that but again this balance business, and I said to the doctor it would be lovely to have an extra handrail. Our stair, our steep staircase only has one and he said, “Oh I.” he could fix that through the occupational therapists. And very nice person came and she at once said we needed a second handrail and she would do it. And in the last month it has been done and it's wonderful, it's just what one needs. And now when I go upstairs carrying a lot of things, instead of teetering on the stairs and nearly falling off I don't because I've got a handrail both sides so that if I have something in my left hand I can, really, I mean it's much, much better, so that we have installed. And she also suggested which I didn't know what it, that this thing existed a thing called a bed lever which is a sort of handrail which is attached to your bed, a small handrail. That is very good too and I've got that. It's a metal it's about the shape of the tripod and with a wooden, flat wooden thing that goes on under your mattress and that your weight hold this rail up beside you. It doesn't take up much room and it's about two feet or eighteen inches high curved at the top and down the other side in and out and it's very helpful and it just enables you to have something to hold onto or pull on when you get in and out and it's very helpful.
More expensive and complicated to install is a stair-lift. Several people mentioned considering getting one installed though some, like Fred, felt that to accept one amounted to giving in. Robert also felt that he should try not to use his. Perhaps because he was an active member of the local Parkinson’s support group he could tap into useful advice and got funding for some of the things required to make life easier, particularly a wet room which had plenty of space for taking a shower. Mari believed that her husband did not want a chair-lift in their tall narrow house. Only after he died did she discover from his diaries how much he minded the time he wasted struggling even to start the demanding journeys up and down stairs.
You can have your house sorted out which is quite good. I mean the wet room is ideal because, though my wife doesn’t like a bath, does love baths, but the wet room actually you go and walk into it and that is it. It is curved. It is more like a hospital than actually a house, that is good. The lift is another good idea. These are all things you can get. But it takes time or who to approach to get it for a start off. You can go to the town and you can see all the stuff laid out that you can buy or use and try out and come home again. But then you see this extension or this bathroom cost about £6,000 with the chair lift and not many people can actually produce £6,000 out of their pocket, when you consider they are retired. If you spend your money you have not got a lot coming in.
I got a grant for that. It was very good. They gutted the bathroom put as I say, the fittings in there. Then we had the stair lift which is good again and then I bought myself one of these automatic chairs, so that you know it throws you out or puts you down so that you can sleep, actually it is a day bed, so you can just lay and have a sleep. I find whether it is age of not I do need a nap in the afternoon. The stair lift was a good idea. I try not to use it, because I think if I can walk upstairs and walk downstairs then it is exercise. I am doing something that is good for me.
Many other aids are available. Rex said that his ride-on mower was his pride and joy; he had also been helped by getting an electric shaver and electric toothbrush. Fiona had bought a long shoe horn and also satin pyjamas which helped her partner to turn her over in bed. Angela had found a Black and Decker ‘Scum Buster’ at a chemist. She found it useful for cleaning in hard-to-reach areas in the kitchen. Peter needed his wife to help him in the shower but they had also installed a grab rail and an adjustable stool, a support frame for the toilet and what he described as elephant’s feet for chairs to raise them and make them easier for him to get out of.
Karen’s best purchase was a pill-timer as she tended to forget to take her medication, which could cause her a lot of unnecessary symptoms. Geraldine and David each had their own version of pill timers, agreeing that regular dosage was crucial to some people who are very sensitive to the timing and dosage of their medication.
Several people had found or invented unusual aids. Julie discovered that it helped to cut the back of John’s shirts to allow easy access in the loo. They had also rigged up a pulley system in the bed to help him raise himself. Geraldine had taken to wearing hold-up stockings and to cutting her hair short so that she didn’t need to use an electric hairdryer. Gina had been given something to put on the end of her car key which made it easier to turn. Isabelle had replaced her china with plastic crockery to cut down on breakages.
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 always carry a rucksack because it helps my balance. You know, if I’m wobbly I hold on to the shoulder straps so that I can stand more upright if I do that because the tendency is to stoop with Parkinson’s disease. And I do use this silly little street scooter which people think I’m slightly eccentric I think because I I probably am. But my sons gave me for Christmas, one of these children’s collapsible scooters. In London they ride them in the city and I scoot. It’s good exercise too you see for your bad leg. Because Parkinson’s always affects people initially down one side. And I feel I’ve had a zipper down the middle, my right side is my bad side, and as yet, touch wood, it’s not very much in the the left side at all.
And you don’t have a problem with the balance when you do that.
On the scooter. No, you’d think I would have wouldn’t you but I don’t.
So which foot is on the scooter, the bad foot or the good foot?
No, the good foot. I scoot with the bad foot. So the balance is with the foot on the scooter you see. And it is if I’m not if I’m unable to scoot because I do get to that stage sometimes, I use it like a walking frame. You know, instead of the zimmer frame I hang my vegetables on it and and lean on it and walk. And it just seems more normal again. I don’t want to be another person in one of these little buzzy cars that go around, you know, I want to try and lead as normal a life as I possibly can.
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