Rex - Interview 04

Age at interview: 70

Age at diagnosis: 63

Brief Outline: Rex was diagnosed six years ago. His main symptom now is tremor in his right hand and he is still active and mobile.

Background: Married, retired agriculturist.

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Rex first noticed a tremor in his right hand and he went to his GP who referred him to a neurologist. When he was diagnosed with Parkinson’s disease, Rex felt that there was little information or help given. It was only when he sent off for booklets from the Parkinson’s Disease Society that he felt more informed.

 

Rex was working at the time that he was diagnosed, which involved travelling around the country. He tried several different drugs before he was put on Sinemet, which is now successful in controlling his symptoms and doesn’t make him feel drowsy or sleepy.

 

He finds it difficult to use his right hand to do things like shaving and writing. He has adapted the computer mouse to the left hand, which means he can still do most of what he needs to do on the computer.

 

The tremor in his hand has recently become worse and it now affects his ability to sleep through the night. At times, his right leg drags and he has to lift his leg and take big steps to overcome it.

 

He has been able to keep driving by having his car adapted to an automatic. He does sometimes feel depressed, but his wife helps him to get through those periods. He plans to keep active for as long as possible. He continues to do the gardening using his sit on mower and they go on regular holidays.

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

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.

Rex has looked for an explanation and believes he was exposed to toxic chemicals many years ago.

I think I was incubating this condition years ago. Because I think the incubation period can be anywhere between ten and fifteen years. But I can’t prove it, but I have got my, I firmly believe that it was due to misuse of pesticides as a young man which I was farming in those days and organophosphates were coming out and they were, we didn’t observe the, the instructions on the label. There was a new condition, the new solution to problems and sheep dips and fly dressings and we did abuse them and I think that’s probably what’s started off my Parkinson’s.

And it has been said hasn’t it that it could be environmental?

Yes. Yes. Yes. There are studies ongoing now. I mean I can’t prove anything at all. It is just I have this feeling in my bones that that’s what started it. There is no history of it in my family at all. So where it has come from I don’t know. You do ask yourself, “Why me?”

Rex had been uncertain whether he should apply for Disabled Living Allowance; he now wishes that he had applied for this before he was 65.

I did, I did look at the Disabled Living Allowance and I decided stupidly that it wasn’t for me. I didn’t think I qualified for it and so I didn’t apply before I was 65. But since I have turned 65 I have applied for Attendance Allowance and got it at the higher rate. But I could have had Disability Living Allowance in lieu of which would have given me more benefits.

 

So you have to apply before you are 65?

 

You have to apply before you are 65, yes. You have to have lodged your intention to apply before you are 65. And I mean I regret not doing that, but I, looking at the forms I really didn’t feel that I would qualify for it, but there is a department within the Parkinson’s Disease Society that advises on benefits and they have been quite helpful.

Rex found information in the library and then contacted the Parkinson's Society (now Parkinson's UK) for booklets. His branch has helped to provide information more easily to patients.

So the first thing we did was beetle off down to the library to find out as much as we could about the disease. I don’t know that we learnt a lot. There was, it was a lot of highly technical stuff in the library. But where did we go from there, we, we sent away to the Parkinson’s Society for booklets on various aspects of the condition and took it from there really.

And the type of information that you were looking for. What was it you wanted to know?

Well how the disease, I knew little about Parkinson’s. It had never crossed my mind that that’s what was causing this tremor and I knew nothing about the disease and I wanted to know how it would progress, how it would manifest itself and what the prognosis was for me. My job was fairly demanding and it did entail a lot of driving. As it ended up I took early retirement in the end because I couldn’t cope with the job and the Parkinson’s. And thank the Lord I did do it.

 
Okay. I just wanted to ask you a bit more about the health services and the service that you’ve got from the health service. Is there anything you think could be provided for people with Parkinson’s within this area, that could be improved?

I think knowledge of the condition, information about the condition,could be improved greatly. And I feel, we in the branch to which I belong, have over the last couple of years, have started putting up literature in hospitals and GP’s surgeries and I would like to think that that is giving people the opportunity to find out just at the time when the, when the news hits them that there is some information and there is somebody they can talk to, because that’s vital.

Rex described the way his wife would help him to snap out of feeling sorry for himself.

I think my basic reaction is that I am going to fight this as long as possible, as hard as possible, and keep going for as long as possible. And I get periods when I feel sorry for myself and I get depressed but then I have got to snap out of it. My wife’s very good at that. Snapping me out of it. And I say, I keep as active as possible, in that we have got a large garden here, we travel as much as we can as well, and as much as we can afford. And keeping active I think is one of the essentials. Keep doing it for as long as possible. Or as my wife would say, “Live for the day”.