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Parkinson's disease

Support and support groups

Most people told us that when they were diagnosed they had little or no experience of Parkinson’s disease and did not actually know anyone who had it.  Although most people had been informed about the Parkinson’s UK and many had contacted the society and obtained useful information, some of them held back from taking things further by joining a Parkinson’s disease support group. Most explained their reluctance like Jean did: ‘I don’t want to see round the next corner what might be happening to me, I’d rather I didn’t know.’ 

 

Elisabet was shocked to see people who had become dependent on someone else and preferred to...

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Elisabet was shocked to see people who had become dependent on someone else and preferred to...

Age at interview: 67
Sex: Female
Age at diagnosis: 50
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When I was first diagnosed, I, I knew nothing, I, I had seen one person with Parkinson’s and that was a long time ago when I was a child. So I knew nothing about the disease. I read a little bit and I became a member of the local Parkinson’s Association. And I went to a couple of their meetings and what I saw there made me very depressed because people, I had mainly tremor and the people I saw there had, you know this, dyskinesia. I had a little bit of that but there were people with large involuntary movements and with rigidity, stiffness, they froze. And I have mainly the tremor which was in a way bad enough but also very lucky because my movements, my moving about was in no way hampered. So I stopped going to the meetings of the association although I’m an organising person, I, I felt that was too much. That was too depressing to see how that many people were, and also there were men with very helpful spouses and I thought ‘Oh my God to become so dependent on someone else. That’s heavy.’ So my feelings of acceptance was simply maybe the denial in another form.

 

Penny, diagnosed when she was 51, did not feel ready to see how Parkinson's disease could affect...

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Penny, diagnosed when she was 51, did not feel ready to see how Parkinson's disease could affect...

Age at interview: 53
Sex: Female
Age at diagnosis: 51
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I have to admit that I’m also concerned whilst I’m happy to go onto the web forum and communicate with people who’ve, with, who have had Parkinson’s for twenty years. I’m anxious about meeting people in the flesh, I don’t want to, I don’t want to see my future. My mother had a friend who had Parkinson’s so I’m sort of familiar with what Parkinson’s in old age is like but I’m not brave enough to confront what some people’s level of Parkinson’s is in people my own age. And I suppose that that’s part of me not trying to worry about the future.

 

Helen, aged 40 finds support from a friend whose situation resembles hers but doesn't want to...

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Helen, aged 40 finds support from a friend whose situation resembles hers but doesn't want to...

Age at interview: 39
Sex: Female
Age at diagnosis: 33
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I don’t know anything I deliberately don’t get to see I can’t my friend is into to the Parkinson’s disease society and she does lots with them and she tries to get me to go to the meetings and I won’t I can’t go, I can’t go because I don’t want to see people. I don’t want to be in a room with hundreds of people with it, I really don’t. I don’t mean that in a negative way. It’s just from my for me to get on in life I need just to be me and I don’t want to be faced with what I might become. That’s just the way I deal with and I don’t think that’s hiding myself away. I think that’s just the way I do deal with it whereas my friend get gets a lot of support from it and she benefits from it so that’s works for her. I think people have to do what’s right for them don’t they. So I have a couple we do have fund raising days where I get to meet a few people and that it’s okay. I don’t mind it in small doses but I just do it at my own level really. If I feel uncomfortable then I leave.

 

Sharon had gone to a support group but decided that though she was normally quite sociable this...

Sharon had gone to a support group but decided that though she was normally quite sociable this...

Age at interview: 57
Sex: Female
Age at diagnosis: 49
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I thought I would get support, because I’m quite a sociable sort of girl, I love groups, got loads of mates, so I thought I’d go to one of the younger bits of the Parkinson’s Society, maybe it’s me, but I didn’t get on well at all. The thing is being in a room surrounded by everybody else who had Parkinson’s disease was like a nightmare for me.  It felt like the world had gone mad. They were really, really nice people and they were very keen to be really supportive and they didn’t seem to have much of a sense of humour.

 

There was something about reinforcing the fact that we’d all got Parkinson’s. I don’t need it reinforcing, I know I’ve got it. I just want to get on with life. So I came away from that meeting, pulled over the side of the road and had a good cry and thought, “Well I’m never going back there.” But I, I’ve rung the Parkinson’s Disease Society, I have talked to them. We’re all different aren’t we? If they help some people and I’m sure it does and I think the support for the research they do and the journal they publish is super. And the work on the Internet. Yeah, I’ve checked that out in the early days. And the Society wasn’t for me.
Some people benefited most from one-to-one support, either through talking to others who had Parkinson’s disease or through counselling. Penny, a single parent living with her 25 year old son, felt that it would be wrong for her to burden either her son or her mother with her feelings about having Parkinson’s disease. She got support through the occupational health department of her work.
 

The occupational health department at her work provided counselling which helped Penny deal with...

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The occupational health department at her work provided counselling which helped Penny deal with...

Age at interview: 53
Sex: Female
Age at diagnosis: 51
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...and probably most importantly I have access to the occupational health counsellor, and when I started I thought that, a couple of sessions, on we be, we’d be through. And  what I have found is that the counselling sessions have been really, really helpful, I found them very, very difficult because we have talked a lot about my loss. So he has identified that I have had to deal with a lot of loss and therefore it’s made me dealing with, diagnosis and adjustment more difficult because I haven’t actually dealt with anything else so we, we do, you know, have to discuss things I don’t want to talk about which is relationship with my, husband, relationship with my, family, how I felt about my sister dying, how I feel about, the people I work with, and it, it can be quite harrowing but, but it, but it’s been very useful because it’s meant that I’ve been able to say what I’ve thought I needed to say which perhaps I can’t say to other people, and that’s been very therapeutic.

Some people who were not keen on joining a group were much helped by sharing their experiences with someone and being able to compare notes. Usually people preferred to find someone whose experiences were close to their own, though this was not always possible. Even where two people seemed to have a lot in common, often one of them would get worse faster than the other. Helen had not felt ready to join a group and was desperate to meet someone else in her position. The PD nurse gave her Karen’s name. Though Karen has had Parkinson’s disease for longer than her they have become mutually supportive friends. Humphrey said he was not good at getting out to meetings in the evening but he liked to get in touch with people who had PD, and found it interesting to exchange experiences, particularly when he realised how different the condition seemed to be in each person. Penny used a patient internet forum to talk to others with Parkinson’s disease and found it helpful.
Some people who had at first resisted the idea of getting together with a lot of other people with Parkinson’s disease had had good experiences which changed their minds.
 

Fiona and her husband had not wanted to join a group but he met someone on a charity stall and...

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Fiona and her husband had not wanted to join a group but he met someone on a charity stall and...

Age at interview: 46
Sex: Female
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We knew there was a support group locally. But at the time my husband didn’t really feel, and I was the same really we sort of didn’t really feel we needed that at that time. And but having said that recently we went to a town recently where they’d got a Rotary Club event and there were lots of stalls and one of the stalls was the local Parkinson’s Disease, it was like a support group and they were doing a fundraiser. And I’d spoken to the, I think she’s the secretary for the area on the phone and she said, “Oh, you know, come along and say hello to us.” 

 

And I mentioned it to my husband, so we went along. And my husband was introduced to this gentleman who’s in the group and he’s had Parkinson’s for quite some time, and he said over the last few years, he said he had to give up work because of his symptoms but he was referred to a consultant who worked with him, sorted out some medication and he’s doing so well and just that half an hour’s conversation that my husband had with that chap did more than anything that he’s had probably in the last four years because he was just able to talk on a one-to-one basis with this chap. I sort of was looking round the stall and chatting to the ladies on the stall and he said afterwards how helpful that had been just to be able to talk to somebody, and he said sometimes it does take time to sort out the medication. That was really, really helpful, and it gave my husband encouragement to know there is help.

 

Kevin resisted joining the local group because he thought it would be full of old people. He...

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Kevin resisted joining the local group because he thought it would be full of old people. He...

Age at interview: 58
Sex: Male
Age at diagnosis: 56
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I went down to London to Parkinson’s Disease Society headquarters in Victoria about six, nine months ago because there’s like, there’s was a, there was a research establishment in there giving a lecture on stem cell research. And when I was down there, I met a few young people, and some of those young people hadn’t joined their local Parkinson’s Society because there were basically, mostly older people. They’d like to join the society if it was for, you know, a young person’s society, which I’d like to do. But there’s not one about. But having said that, the society here in [our area] is really good, very good.

 
Before the first time you went to that, how did you feel about going to it beforehand?

 
I felt that it wasn’t for me, it’s for older people. I had this vision of people in their, all being in wheelchairs, I was nicely surprised that I had trouble spotting in the room who were the carers and who had symptoms because they’re all on drugs, apart from one or two people in wheelchairs shaking away. I never envisaged that I would go back again but I’ve been going every since. I think it’s a really, really good idea.

Several people did join their local support group and found it very useful. It provided an opportunity to share tips on coping with problems, comradeship, and a social occasion. Some people found it helpful to see others to make comparisons with their own symptoms.
 

Keith admits that part of his interest in other people with PD is to make comparisons with his...

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Keith admits that part of his interest in other people with PD is to make comparisons with his...

Age at interview: 74
Sex: Male
Age at diagnosis: 70
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Well I suppose I’ve got used to having it and think, ‘well it hasn’t progressed as rapidly as I feared over the last three years.’ So if there’s somebody in the Parkinson’s Disease Society branch support group that’s had it for twenty years and I can look at her and think, ‘oh well if that’s what she’s like after twenty years.’ And other people [who] have had it for a long time don’t seem to be quite as bad as you imagined. So in some way you’re trying to measure your own progression and the progression over the last three years is not quite as bad as I’d feared. So in many ways I’m a bit more optimistic than I was.


Okay but seeing other people helps in some ways?

 

In some ways, yes. It’s got pros and cons really. You can see what they’re like but you feel well you want to ask them how long they’ve been like that and you really want to be, asking them all the questions about how long they’ve had it and what patterns take developed since they were first diagnosed to see if there’s any parallel. But as I said before the symptoms are so individualistic that you really can’t draw too many conclusions from other people’s experience unlike lots of other diseases.

 

Rex found something very reassuring about being with people who understood what PD was about.

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Rex found something very reassuring about being with people who understood what PD was about.

Age at interview: 70
Sex: Male
Age at diagnosis: 63
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We ummed and ahed about joining the branch because I felt we were going to meet people who are in a worse condition than me and that’s what I was going to get like. But it is distressing to see them yes. I mean we have seen people in the five years we have been members, we have seen people go down hill and have left this planet.  But there is a lot of camaraderie that goes on and it’s nice to talk with other people about the condition and we enjoy belonging to the local branch of the Parkinson Society. And I would recommend to anybody else who gets the condition they do make the effort and join.


Because that would be a concern for people wouldn’t it?

 
Yes. We had a meeting last evening and one old chap had been sat there for a while and he had a job to get out of his chair. So I just went over help him get out of his chair and his wife said, “It is so nice to come to a meeting where people understand.”  And I hadn’t thought about it much, but I have thought about it since last night but yes people with the condition perhaps don’t get out very much and when they do go they like to go where their condition is understood.

Some met regularly, inviting people like the local Parkinson’s disease nurse or consultant neurologist to give talks. Peter’s group organised a successful campaign to get a specialist nurse. Often these meetings introduced people to sources of help that they might not otherwise have known about.
 

Peter describes why he became enthusiastic supporter of the local branch of the Parkinson's...

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Peter describes why he became enthusiastic supporter of the local branch of the Parkinson's...

Age at interview: 72
Sex: Male
Age at diagnosis: 67
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You couldn’t keep me away now. I find them a great help, because you’re talking to fellow sufferers, you are comparing notes, you are enjoying yourself because you’re amongst people that can sympathise. We get some very good speakers.

 
We have a meeting every third, the last Wednesday in every month and we have a different speaker come each month. And there is always something of interest there for everybody. And, yes, it’s good to meet other people and compare notes. And although it affects people different, differently, when you come down to it everybody else has more or less been through the same period that you’re going through, except those that have only just been diagnosed or who only have it very, very slightly. 

 

Gaynor joined her local group with trepidation, now she is fully committed to its activities.

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Gaynor joined her local group with trepidation, now she is fully committed to its activities.

Age at interview: 54
Sex: Female
Age at diagnosis: 51
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So at this point I’m adjusting to being retired and keeping busy, trying to catch up on friends, travelling, picking up on hobbies and generally trying to support others as well by becoming eventually involved with the local support group. Although that was something I did with trepidation because, I think you have to deal with it yourself before you can support others. And even when you think you’ve dealt with it, you know, things can happen that, you know, can make you upset.

 
The first time that they rang it was, the most, well it was not supportive it was condescending, you know, it was, they were, it was as if they were get, they were showing me pity rather than anything else. And that’s, that’s easy, you know, easily done, but and I suppose I was sensitive as well. But I know that, you know, the person was doing it from the best intentions but it’s difficult to get the right balance because there was some who’d been going for years who wanted a raffle and tea at this certain time. And, but gradually things are changing and we’ve had different speakers and, you know, and the nurse is now in post and she’s lovely and, and I’ve been helping to devise a pack for newly diagnosed people.

In recent years several local branches of the Parkinson’s UK have had groups especially for younger people. Support also exists on a national level through the Younger People’s Network.
 

Karen gets support from being able to get together with other young people with Parkinson's disease.

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Karen gets support from being able to get together with other young people with Parkinson's disease.

Age at interview: 45
Sex: Female
Age at diagnosis: 39
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We get together with other young people that have Parkinson’s Disease, just to talk and share experiences and just to be a support for each other. The biggest thing is that no matter how supportive your friends and family are, they never fully understand. And people with Parkinson’s know exactly what you’re going through and can always give help and support. And we help and support the carers too because they also need help.

 
It started with just three of us about two and a half years ago, and three of us went out to the pub for a chat and, you know, sort of talk about how we all were coping. And it’s just grown and grown and grown over the last couple of years and there’s now forty. And I’m actually the young onset representative and we organise social events, nothing formal. We just go out and have a good time and talk. As I said, talking is very, very important and the carers and partners and family and friends they can come along as well because they need support as well, especially your partner. It’s nice for them to talk to somebody as well and, you know, just find out how other people are coping. Yes, so it’s very beneficial.

 

Nicolas made some contacts through the PDS and feels that you can learn more from other people...

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Nicolas made some contacts through the PDS and feels that you can learn more from other people...

Age at interview: 47
Sex: Male
Age at diagnosis: 44
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From the PDS website, I managed to get in touch with a PDS branch and the nurse practitioner, which was very useful. So by making a few phone calls, I got some confidence with a few people in a similar position. I went along to the branch meeting. Met one or two other younger people in a similar situation and from there we formed a good social grouping and a contact group, which is very helpful in exchanging information on medication and other features and factors of the disease. And you find that there are many more people than you imagine who have got Parkinson’s disease. So recommend the support of the local branch.

 
Parkinson’s disease affects a lot of people in a lot of different ways, and it’s interesting to find out what range of knowledge there is. For example, I wasn’t initially put on medication and lots of people were talking about medication and I thought, I didn’t quite understand what was going on. Now I’m on medication, I take more interest in that sort of thing. But a lot of that is the experiences of the people around the patch. Nurse practitioners quite helpful, but I found the best source of information are other people with Parkinson’s disease.

Bob, who is 55 and has joined a local young person’s PD group, described how he had met lots of really interesting people. They had started to do all sorts of things together, including going out for meals.
Other people had no time to attend support group meetings. Gina was working full time to repay her debts and managed to attend weekend meetings only occasionally. Rachel admitted that the main reason for not joining a PD support group was that she was a ‘bit of a hermit’, but also found that her Parkinson’s made all she did take longer than before and that she wouldn’t have had time to go on doing the things she really enjoyed doing with her husband as well as attending meetings. Penny would have liked to attend meetings for Young People with Parkinson’s but she didn’t feel up to undertaking the longish drive after work, she couldn’t attend the local group's daytime meetings either.
Angela felt that there were too many different Parkinson’s charities and that they might achieve more if they were to pool their resources. Others derived great satisfaction from charities they had become involved with, or in Tom’s case helped to create, and could raise considerable sums for research.
 

Tom's charity work stemmed from his 'incurable optimism' but the results were spectacular.

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Tom's charity work stemmed from his 'incurable optimism' but the results were spectacular.

Age at interview: 40
Sex: Male
Age at diagnosis: 27
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So I walked from John O’Groats to Land’s End which was something I’d always wanted to do and Parkinson’s  sort of gave me the opportunity really to do it.  And so I went for, I’d sort of got a sponsorship pack and sent it out to friends and family and, I was amazed by the support. It was wonderful. And I set off and not really expecting to raise more than sort of £3,000 from this thing and enjoyed the walk thoroughly. But it was, it was tremendous. It took two and a half months. And raised £14,000 and it gave me such a fantastic buzz to have, to raise that money. And  it was a wonderful experience and then I went back to workand decided that while my work was being impacted sort of quite heavily with becoming more and more sort of, Parkinson’s disease was becoming more and more of a burden. And actually I was getting worse at what I was doing because the physical symptoms were beginning to sort of kick in.

 

That I then decided to go off on another walk sort of bigger and better. Decided to get companies involved. And  so I got pharmaceutical companies and various supporting organisations and, and went off on a four and a half thousand-mile walk around the coastline of Britain which took a year, exactly a year. And it was the most marvellous experience that I’ve ever, ever experienced. It was, it was the best year of my life by a long, long way. It was, it was, it was just, restored your faith in humanity really. It was, it was, it was wonderful and, and ended up raising £350,000 from that. And it was, it was astonishing the support, absolutely wonderful.

 

And so with that. I decided that actually, that  actually I was more, of more use for the world by, by doing something involving myself in, in the disease because I was certainly slightly unique in that I was someone so young with Parkinson’s. And actually, you know, with Michael J. Fox coming out of the closet and saying he had Parkinson’s and, and  but even with that people didn’t really realise that young people could get it. So, so I felt I was doing good by, because charity is so much more compelling when it involves younger people. You know it’s a sad fact of life and  And so I decided that a better way is to make myself of use was to go into the, into the Parkinson’s world fully fledged. And it’s almost a case of sort of, you know, because I’d been useful with Parkinson’s it’s a case of shake well before use, sort of thing.

Two people we interviewed had taken part in the Expert Patient programme which they had found very useful. It helped them to gain confidence and reach a more positive attitude to their own condition and a greater understanding of other conditions causing long term illness. Penny found out about the programme from the Patient Advisory Liaison Services (PALS, a part of the Department of Health).
 

Since attending an Expert Patients' course Judie has become a tutor.

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Since attending an Expert Patients' course Judie has become a tutor.

Age at interview: 62
Sex: Female
Age at diagnosis: 52
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And soon after I was diagnosed, I don’t know how I knew about it, a course for the Expert Patient Programme, and I went on this course locally at a local hospital, up the local hospice actually. And , it was good for me, it was sort of about learning to manage your symptoms and , it brought you into contact with other people with other conditions, not that it wasn’t all Parkinson’s. But you all had a common feeling really, you experience the same emotions. Have similar kinds of problems to encounter. And at the end of the six weeks, my tutors asked me if I’d like to train to be a tutor myself, which I did. And that gave me so much more confidence. Because I think being diagnosed you lose a lot of confidence. I certainly did.

 

And I went on this course for five days and I’ve been a tutor, Expert Patient Programme ever since and I’ve made a lot of friends and hopefully helped a lot of people. I like to think so. It gives me a buzz if I have. And we’ve also got a little group of Parkinson’s people that have come together because of our Parkinson Nurse and we meet up about every six weeks or so, either at my house or we go out for a meal or we do something. We have ten minutes talking about our problems and then we try to act normal.

 

A 6-week course gave Ann a lot of practical help but she doesn’t feel ready to join a PD group.

A 6-week course gave Ann a lot of practical help but she doesn’t feel ready to join a PD group.

Age at interview: 68
Sex: Male
Age at diagnosis: 66
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I must say that the authorities have looked after me  very well. They sent me to a group where we learnt to do exercises, and gave me information on the Parkinson’s Disease Society, which has made a terrific difference to me. Their leaflets are very informative. I’ve come to rely upon them.  And I’ve now discovered that they can do it in large print, because I’m having problems with my eyesight. 

 

We, we, the group met for about five weeks and we had, somebody came to tell us about Social Services, the help that they could give, the speech therapy. And I went and had a, a session with them because my voice becomes croaky at times. And I, I’m unable to sing now, which is a shame because I loved singing in, in church. I’m singing an octave lower and singing alto when I can. But that’s one of the things that I miss, that, that’s affected. 
 

Last reviewed May 2017.
Last updated May 2017.

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