Parkinson's disease

There is a helpline with the Parkinson’s Disease Society and that I’ve rung a few times and my husband’s rung a few times and although sometimes you have to leave a message and they will ring you back, someone always does ring you back. And, and I’ve, particularly sort of in, in the first few years I found that really helpful, just to be able to talk to somebody impartial and I’ve spoken to the same lady a couple of times and it’s been really good just to be able to, you know, offload some of my worries and my concerns. I’ve got very good friends but I don’t feel like I want to burden them all the time and I know they’d say, “Oh you could talk to us any time.” But, you know, there are things that you, that do build up and you do worry about and someone familiar with the subject to be able to talk to I found that really helpful. 

 
That was a little bit tricky in the early days because it was before I’d told my children so, but they would never say who it was calling they’d just say, “Is your mum in?” And so that was never a problem anyway. And I did suggest to my husband when he was struggling, when he first, was on the medication and it wasn’t suiting him, I got him the number and he rang and he said that was really helpful again. Because the thing is when you go and see the consultant it’s sort of, perhaps initially it was once every six months and now it’s once every three months and we try and make a note of things to ask about when we go but it’s, it’s in-between time really, just having that, having somebody you can talk to, and although our GP’s very good, he, he says himself he’s, you know, he’s not the specialist in that, that condition. So just having that helpline is, is, is really good.

The Parkinson’s Disease Society has in the past been for me an enormous help, although I said that being ill made one feel lonely it hasn’t led me to join a branch with the PDS or want to meet other people that have the illness. I’m not a joiner, I’m not a club person so I’ve remained with myself in dealing with the illness. The PDS has helped with its literature, telling everyone about advances in treatment, problems of treatment, sorts of treatment available, difficulties as the illness progresses, different people’s experience you get told through the magazine. It’s all a bit upbeat and one can sometimes feel irritated by that because it’s not an easy illness to have but I think they do a good job for the most part. I have made, I have contributed in the past to a couple of the videos. It’s a while since I was in touch with them, and I’ve needed them less since the operation. If I hadn’t had the operation I don’t know whether I’d still be around, but I think if I were I’d need their help quite a lot.

I wasn’t old enough to have Parkinson’s Disease I thought. I wasn’t forty yet and I was really worried about what would happen in the future. I didn’t know where to turn. Luckily a Parkinson’s Disease nurse specialist put me in touch with the local branch of the Parkinson’s Disease Society and it was through them that I met lots of people who’ve been able to help and support me. I’ve now become very involved with the Parkinson’s Disease Society and I am the young onset representative for the [local] branch.

In the beginning I found it very difficult to find out much about young onset Parkinson’s Disease. There wasn’t really many people to turn to. I went along to the [local] branch but again it was nearly all old people, or so I thought. After going for a few months I found that in actual fact they weren’t all old and disabled, there were some younger people there. And that’s when the support group started to develop and really we help each other. We give each other advice, things that’ve happened to us in the past. To help to cope with the different things that happen. And really it’s a case of looking on the internet and finding out as much as you can. The PDS website is very good, and they also produced a DVD more recently, especially for young people and newly diagnosed people, which is a great help. I only wished that had been around when I’d been first diagnosed. 

I'm a member of PDS but I haven't been to any meetings, I don't yet feel the need. I don't see myself as a Parkinson's sufferer. I see myself as a person with Parkinson's, I happen to have it, like I happen to have been a teacher.

What happens when you go to the neurologist, when you did go? What happened last?

 
It’s all rather quick really. He says, “How are you? Yes. Blah, blah, blah. Keep taking the medicine and, and whatnot.” And, but the last time I went to see the nurse, she said I could experiment with it a bit. And I could experiment perhaps having it instead of every four hours, taking some of it every two hours. But the thing is you have to experiment again over two weeks or something, and I’m very loath to do that because it might interrupt my time as it were and might put me out. So I haven’t done that yet. And I’d like to know really a bit more scientifically about this experimentation really. You know, should I halve, halve any of these pills I’m taking one of them, or should I just take one of them in the middle, or what will happen? I’m a bit, I’m a bit frightened really of changing the routine, because the routine is working fairly well now. But  it could be better.

I found that my saviour, there are two people who saved me really and set me on the right road to coping with it, one was my GP and one was the Parkinson’s disease nurse that I met when I was first hospitalised.