Parkinson's disease

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.

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.

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.

 

I do have acupuncture. I do the holistic, I think that’s good, helps me massively.

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.

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.