It may seem that people diagnosed with Parkinson’s disease are no longer in control of what happens in their body. They discover that medication can improve or even remove their symptoms. It is less clear to them what they can do to help themselves.
Some people had already explored alternative therapies before their diagnosis in an attempt to alleviate symptoms which had not yet been explained. Natalia had spent a fortune on herbal medicines from a Chinese practitioner before she discovered the cause of her symptoms.
Rafa was training for a marathon when the symptoms which led to the diagnosis of Parkinson’s disease appeared. He had up until then prided himself on being fit and active. He wanted to continue exercising but was uncertain what he should to continue to do, and what, if anything, might make things worse.
I value his professional judgement and I’ve talked to him about, “Should I be doing normal things?” The only thing he’s advised me against is trying to run another marathon simply for the reason he mentioned that it it’s such an exhausting exercise to do.
He didn’t suggest it would do me harm. He said he strongly supported me in terms of doing as much physical activity as I could, going to the gym, playing tennis, playing saxophone, keeping active. He just felt that the marathon takes so much out of you it might not be helpful. He didn’t say it would be harmful. I’d take it implicitly that there was a suggestion it might be harmful.
Walking was many people's main form of exercise. Several people mentioned that having a dog helped to motivate them to walk regularly. Ann walks for an hour in the morning and another 25 minutes in the afternoon as well as housework, gardening, shopping, yoga and swimming so she feels she is doing pretty well. Gina walks to work, and Stephen makes a point of walking to the shops. Penny on the other hand had been encouraged to exercise but found it no help.
Divorced, 1 adult son lives with her, Currently working in management, strategic planner.
I just get overwhelmed with tiredness just walking, quite short distances, I really miss walking you know? This last summer because I’ve had so many people telling me, “Oh you’ve got to exercise and, you know, surely if you just practise your, you know, your muscles will relax.” So I said, “Well I’ll just walk round the canal every evening.” And, you know, it was about a mile and if I do that hopefully it will start to get myself fitter and I will find it easier to walk, and I’ll be coming back and what happens is your muscles go solid like a tree trunk so you feel like you’ve got this tree attached to you, you know, this wooden thing and it, obviously is quite a lot of pain so I phoned up the Parkinson’s Disease Society and just said, “I’m trying to exercise but the more I exercise the more stiff I’m becoming, it’s clearly not working what should I do?.” and they said, “Well obviously you’re not on the right medication.” “So you need to see your consultant and you should stop doing this exercising. It’s obviously not doing you any good.” And it was such a sensible, sensible reassuring response, you know? And I thought, “yeah that’s right it’s not working it doesn’t matter what all these people I know who are into fitness think, the problem isn’t to do with my muscles the problem is to do with the message from my head to my muscles” so, you know, trying to, exhaust myself to retain my walking is not helping me at this point in time, and I think that’s when I, you start to realise that people who haven’t got Parkinson’s simply don’t understand what happens to your muscles, they don’t understand that once the message has gone to your muscle to tighten up it doesn’t relax again until you’ve gone to sleep or, you’ve, sitting down to rest doesn’t do any good you’ve got to go into proper deep relaxation and then as the messages die off I suppose the leg starts unstiffening.
I like dancing, I get taught, I go for lessons on Tuesday morning usually and that is good for the muscles because with the Parkinsonian you need a rhythm. If you have got a rhythm where you are dancing, you can dance, there’s no problems. It is when you stop you are in trouble. If you are stuck in the middle of the hall you can’t move. But is good actually, otherwise it is good exercise. I also go walking. They are very good locally and they have a nurse who goes round with the walkers. I occasionally get taken home when the tablets wear off before I am prepared for them to wear off. So there’s lots of help locally.
Swimming was another form of exercise that some people enjoyed. Fred could use the local pool at a time set aside for therapeutic exercise and found that he could do things in the water that he could not do on dry land, like concentrating on his ‘heel-toe’ exercises. What he and others found they couldn’t do was swim in a straight line - they swam in circles.
I do a lot of swimming. I love swimming because it’s a safe exercise because I can’t fall. And it’s the most pain free exercise I do. I do a lot of exercise I don’t, I like to keep myself fit, but it’s the most pain free exercise I can do because you can swimming is one of those things where you can put as much or as little effort in as you want. You can lie on your back and just flip your legs a bit and float and that’s fine or you can swim purposefully and forcefully if you want. When I go swimming I always make sure I tell the lifeguard or the attendant that I’m there and that I’ve got Parkinson’s disease. There probably won’t be a problem but if I do get a problem what I will do is I put my hand up in the air and that, you know, just to warn them that I am there. But I try to swim down the left hand side of the pool because my left side is weaker than my right side.
If I was going to veer off course I would veer into the side of the pool rather than veering out of away from the side of the pool. So, you know, but swimming is good. I tried it in the I swim in the sea a lot when we go on holiday but, again, I don’t swim out. I what it is I walk out and swim along the beach and I always swim on my left side facing the beach so that if I do go in a circle, and I’ve tried it I’ve tried swimming for like a minute with my eyes closed in the sea and I actually go round in a circle because of the difference in power on one side than the other. Even if I try harder with my left hand side it just doesn’t work out that way. But swimming is good. I would recommend it to anybody.
Age at interview:
Age at diagnosis:
Divorced, cohabiting, Working- runs cake factory.
I would love to be able to go back to the gym. I’d love to swim hard and fast like I used to. I’d love to dive into the water. I’d love to be able to walk the long walks that I did. I’d love to be able to go back to horse riding. I’d love to be able to ski again. I could do them all with a lot of help and support, some discomfort and what’s the point if you have to do it under those conditions. I am trying to get back to some swimming. I’m trying to get back to some walking.
There is a bit where the illness gets, it goes in phases. And you come to a bit where you feel a bit better and I try and recoup some of the lost ground when I feel a bit better and go out for walks and I’m a very physical sort of person, I love to, and I feel in my body, for walking and moving and swimming and riding. And I do feel I want to do it and my body needs to do it. But really I just can’t.
And even at swimming pool, getting out of the water. And flip-flops are a nightmare, can’t manage them. I can just about get in but walking along. If you’re walking along the side of the swimming pool there’s nowhere to hang on. So you can’t crawl. I mean, you’d just draw attention to yourself wouldn’t you? But you’d be so much safer crawling. You know, what does it matter. But you can’t. So it’s sort of like quite frightening walking from the top of the steps of the swimming pool to the changing rooms. And my partner doesn’t want to go swimming so you, … And if you say to one of the assistants, one of the girls that, who are the lifeguard, “Could you just give me a hand back to the changing rooms?” They sort of clock you and next time you turn up they keep a beady eye on you. “Oooh, go away.”
Several people attended a gym, but some said that they went less often than they should. Fred had bought some equipment to have in the house, but he didn’t use even this as much as he should. Steve tried aerobics but couldn’t keep up. However when he changed to Pilates he found the stretches helpful. Brian had been taught exercises in a gym but said it was difficult to do exercises alone and didn’t like the noisy music at the gym. He was now in a trial exercise programme which he hoped would make a difference.
Married, adult children
Network IT consultant (now home-based).
I belong to a well known gymnasium, a consortium round here and I do probably two or three times a week, not as much as you should do, exercises in the gym. Exercises like spinning classes, cycling, rowing. Stuff that gets your heartbeat going, cross-trainer, different machines that are in the gym. Some weights, stomach exercises. Some swimming, which I’m not very good at. And I find that after doing good exercise and the blood gets, your heart rate gets going and, blood pumping round your body that you feel better afterwards. For example I’m sitting here at the moment with a really stiff neck, which I’m not convinced but I’m learning to accept things and that’s probably due to Parkinson’s, a symptom of Parkinson’s.
If I go to the gym and have a good work out and, when I come out, quite often my neck is a lot looser. You feel better. So anybody who’s got this condition I would recommend if they can do lots of exercise. I’ve also got a bike here, a push bike and I, instead of driving to the shops or walking I tend to use my push bike because it’s good exercise.
Several people had tried exercise to help them relax. Angela, Karen, Gaynor and Judie had all done Tai Chi. Karen felt it helped her to concentrate her mind and to relax. Gaynor really enjoyed Tai Chi because it was ‘not strenuous, you could do it at your own pace, being all about your emotional wellbeing and being balanced’ Ann can enjoy a yoga class because the teacher keeps an eye on her and rescues her if she seems about to fall.
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 do take exercise. I’m about to embark on yoga for breathing because I think, you know, there’s no one exercise that’ll do your whole body. You’ve got to analyse which bits of you are worse and I at the moment breathing is my biggest problem so and then have a go at yoga for that. I’ll try anything alternate because I don’t think it can harm you and, you know, you couldn’t be worse I don’t think, you could only get better. But you’ve got to want to do it, you know, if you let it get the better of you it will.
Many people had used massage, chiropractic, osteopathy, reflexology, reiki, Bowen massage or healers. Ruth said that massage helped with stiffness and the effects lasted a few days. Many of these techniques produced short-term improvements particularly for painful spasm, but most people said that the results, if any, were only temporary.
And he went to a lady who does the Bowen treatment. Do you know about that? Oh, gosh. It’s a very, very soft muscle manipulation. That’s the best way I can describe it. It seems very, very simple. I go for that once a week. I shan’t be able to much longer because I can’t really afford the sessions to keep on going every week. But I come out of there feeling so relaxed and well. I go in for a. We have an hour’s session at a time. And it’s a thing which started off I think back in the 30s, something like that, in Australia. And the guy that did it just obviously had a, a gift for healing which is something I believe in very much. People, it is possible for people to have healing hands. I do believe in that. And he adopted this, it was a mining town in, in Australia, Kimberley I think it was, and he just used to sort of do this muscle manipulation. And people would come in sort of stooped and would walk, would walk out totally normally. He had two assistants, and when he died they kept it up. They eventually wrote it up. And it has now become a worldwide business. And this lady who gave my wife’s Barbara’s son this, the Bowen treatment, she said she had treated several Parkinson’s patients quite successfully. Well, thinking about that, you, successfully means curing, and you can’t cure Parkinson’s. But, yes, obviously it does work because you, it does bring you relief, but only for a very, very short time. I see this lady in the nearby town Stony Stratford and she’s absolutely super, and I’ve told her I want her living here permanently so that she can do it every day sort of thing, you know.
So what are the differences that you see?
I just feel so absolutely unwound and totally relaxed. And that is something that you can’t do with Parkinson’s. It is automatic, I can be sitting here and you’re watching something tense and exciting, exciting on television, which doesn’t happen very often these days, but I find I get the shakes. And I try and hold that down and I get, I get all tense and wound up. And the only way I can relax is if I go and lie down on there. So she seems to take that tenseness out of your body. But because you’ve got Parkinson’s, it doesn’t stay away for very long.
When Penny tried reiki she found it impossible to lie either on her front or her back which she believed the therapist found frustrating, though on their website they insist that they can work effectively on someone who cannot lie flat. Since then she has discovered another much more helpful relaxation technique.
Divorced, 1 adult son lives with her, Currently working in management, strategic planner.
I use mindfulness, which I was recommended by a friend of mine who’s a counsellor and it’s based on the concept that you should stop worrying about what’s happened, you shouldn’t worry about what’s going to happen, you should just accept what’s happening today and make conscious choices about today, and the bit of the mindfulness mechanism I use is the body scan, so you’ve to lie down for forty-five minutes, which is quite a long time, I usually put cushions under my legs and then the CD takes me through every part of my body and the idea is not to stretch and relax like in some relaxation programmes because obviously that isn’t appropriate for me, the idea is just to accept what is happening in every part of your body to take notice just take conscious notice and accept it. And if you drift off, I mean I never, never fall asleep ever but if you drift off then it doesn’t matter because when you get to the next part of the body you feel oh no I was supposed to be concentrating on my knee, on my right knee, how does my right knee feel? And it brings you back, and it, the forty-five minutes goes, goes by really quickly and in fact, you know, you, I, I am relaxed at the end of it and the pain levels are much less. So it’s quite good.
People had mixed feelings about acupuncture. Humphrey felt that he was 'not designed for acupuncture’; for Peter ‘it didn’t make a bit of difference’. But others reported quite dramatic effects and felt they benefited from having it regularly.
I do have acupuncture. I do the holistic, I think that’s good, helps me massively.
What in what way?
It just makes me feel better when I come out, don’t know. They put them in all your points, don’t they, the needles. And when I first did it my hand in my bad hand, the needles it’s amazing. The acupuncturist was amazed. She’s never seen anything like it, the needles spun in massive circles for ages. Like the energy was just completely amazing and by the end of my, I think I had four sessions, the last one they just went in and stood still so and when I come out I do feel better. I feel I’m more less I just feel better. My tremor’s not so bad. And so also I had acupuncture, I think I had something else. I do that reflexology. Stuff like that I do, quite enjoy.
Age at interview:
Age at diagnosis:
Married, 2 adult children, retired special needs teacher.
One of the big turning points for me is something that I've been able to do privately. I went for acupuncture and that started last November. It's five elements, classical, it's five elements Chinese acupuncture and the doctor who administers it is a former consultant anaesthetist who retrained in China in alternative medicine. And I started going once a week. Within three months I was down to once every three weeks, then once a fortnight and I go once a month and my mobility and confidence, general wellbeing, everything is just so much better. People who haven't seen me for a long time look at me and say, "You know you look great," right thank you. And I put that down to a combination of all the things but that for me was a major turning point. And I absolutely swear by it but unfortunately it doesn't do for everybody.
Tom, Geraldine and David controlled how much protein they ate just before or just after taking levodopa since this seemed to make a difference to the effectiveness of their medication'
The L-dopa pills react with protein in the brain so that I still do only take limited amounts of protein during the day and have my main protein meal at the evening. And in that way I limit the symptoms, side-effects of the drugs basically. And then actually if, if I had my pills with a, with a lump of cheese or something, you know full of protein, they wouldn’t work at all. So that so I only have food about 40 minutes after I’ve taken my pills. But once they’ve actually, once they’re actually working and, and effective because if they’re not then, well then you get these, then I’m getting more tremor and, and it can, it makes huge difference.
Is that something you’ve found out by trying it out or was it?
No I was told that, told that by a nutritionist. But there’s also, it’s astonishing today how many people don’t know that. And that, that is absolutely fundamental to, to the treatment of Parkinson’s. And I find it absolutely amazing.
It is very difficult for people to weigh up the benefits of these treatments, very few of which are actively promoted by their doctors. Several people were concerned about the cost of each session, let alone of regular treatment. Peter had found Bowen massage a very successful way of relaxing but he didn’t believe in other alternative therapies for Parkinson’s disease. Although he believed they worked in some respects, he felt that they could not help his Parkinson’s.
Some people said that therapies like yoga, Tai Chi and massage helped them to relax and to feel as if they were doing something positive to help themselves. Relaxation meant relief from pain, spasm and feelings of stress. Many people, several of whom had noticed that their emotional state greatly affected their symptoms, noted that relaxation helped calm their tremor, helped them to sleep and made them feel generally better. Joe had tried various things and felt they did more for his mood than for his physical symptoms' ‘I think it helped me feel I was doing something to be better, made me feel lifted a bit and of course attention to one’s body, physical attention, massage, acupuncture. Anything like that makes one feel better, makes one feel loved really.’
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