Nicolas - Interview 23

Age at interview: 47

Age at diagnosis: 44

Brief Outline:

Diagnosed 4 years ago, Nicolas now takes a low dose of Mirapexin. He works full time. He experiences stiffness, tiredness and difficulties with walking and handwriting.

Background:

Separated, 2 children Aerospace Chief Engineer.

More about me...

Diagnosed four years ago, Nicolas had symptoms of stiffness and muscle aches for fifteen years. But it was only when his handwriting deteriorated that he thought there may be something seriously wrong. He went to his GP who referred him to a neurologist, which he saw on a private basis through his employer’s health scheme. After he was diagnosed, his occupational health department at work provided physiotherapy and put him in contact with the Parkinson’s Disease Society. He now goes to his local Young Persons group, which has been a very good source of information and support. The local Parkinson’s nurse specialist has been very helpful in providing practical advice.  He advises others to find similar support when they are first diagnosed.

 

He was initially prescribed three different types of medication but none seemed to make any difference so the consultant advised that he managed without any medication. In the last year he has been prescribed a low dose of Mirapexin, by a different consultant.

 

Nicolas works full time and finds his work is most affected by difficulties with handwriting, mobility, travel and tiredness. But he finds solutions and ways round any difficulties that arise.

 

He tries to exercise as much as possible and has regular massage to keep supple and ease any stiffness and muscle aches. Nicolas attended the National Centre for Conductive Education in Birmingham which offers physiotherapy exercises that are attuned to everyday activities. He was assessed and offered up to 15 free sessions, which he found very helpful. One thing he learnt was techniques for managing difficulties with handwriting.

Nicolas has been looking into his pension rights.

If I went back a couple of years I was quite bullish about things because I wasn’t too affected. But I feel things are certainly progressing, getting worse that is. So I’m not sure what the future means. Certainly work’s important to me at the moment. I’m not sure how long I’ll be able to continue with that. I think that’s the most important thing. So things like financial support are going to be important. So applying to the Department of Work and Pensions for benefit and that sort of thing will become a priority, I would think. I’ve already got a limited amount of support from the Department of Work and Pensions, as I say, but I’ll have to explore other things. I’m fortunate enough to have some health insurance so that would cover some of my financial conditions should I stop work, which is good.

With the Parkinson’s Disease Society booklets it says a lot of advice about what to do and what to apply for, which is great. So as I say, with the medical insurance I think I’ve got things covered such that the financial side will be fine. But I dare say things like care and support will be important and at the moment I haven’t really addressed that.

Nicolas made some contacts through the PDS and feels that you can learn more from other people with the illness than from anywhere else.

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.

Nicolas feels that he had been in denial and regrets that he failed to share with his partner the concerns which actually affected both of them.

I think she was in the same situation as me, didn’t understand enough. So she was very helpful, in fact that she checked out websites and that sort of thing and she was very supportive. In fact, when I went on the conductive education course she came with me on a number of occasions. So she was supportive. So I think it was more the emotional side of things that caused the friction between us. I guess me not opening up and being clear about what the situation was, partly not being able to reconcile it with myself that was difficult. Also, I wasn’t going to talk about this but I am now, I think because I was tired and didn’t want to do things when she did, our social life might have suffered as a result. And obviously I wasn’t able to provide her with the support and social life that she felt we should have had, I think there’s something in that.

 

Nicolas regretted the effect his preoccupation had on his relationships.

Yes, it’s been difficult. I think having the disease has made me quite self conscious and quite internally focused. I’m separated now from my wife and I’m sure it had an effect because I found it difficult to express and articulate things myself. I couldn’t really involve her in what I was going through. It was a source of frustration, I believe. So that’s been awkward.

 

One of the things I’ve noticed more recently is that I’ve become quite anxious and nervous in public and so my relationship with people at work can sometimes be difficult. Because I feel anxious or nervous in front of them then I don’t give a good account, I feel I don’t give a good account of myself. So there’s another feature of the disease that affects you. I suppose, I’m not sure if that is neurologically or whatever but nervousness is important.

Nicolas is glad that he informed his occupational health scheme of his situation.

Yes. Yes it was important that, well firstly that occupational health were aware because they could be supportive and helpful. But it’s important that you advise your manager as a point of contact within the business so that he’s aware of any impact on your working ability. So he knows how to limit what you can do or provide support for your daily work, he recognises what needs to be done and can provide it.

 

And how did he respond?

 

Very supportively. In fact, his own father had Parkinson’s disease and he recognised that medication and so on can be very helpful. So he had some foresight and knowledge of the situation and we have regular dialogue and he is supportive of me, which is great.

 

For me, I think the difficulties are with mobility, writing and travel. So mobility, because walking becomes more difficult, I work on a large site, getting around isn’t so easy. And my job involves contact with people, so I need to be with them. Hand writing has deteriorated quite badly but fortunately one can use keyboards and PC’s which does help to some degree. But it is difficult for me to take notes, for example. And travel, because largely of tiredness, travelling and getting around can be awkward, especially if it’s a long day. So tiredness is an overriding factor. So things, things tend to become slightly more difficult.

 

We have a flexible hours policy so I can come and go as necessary so long as I do the standard hours during the week, that’s fine. So if I’m feeling tired I can leave early and manage my own time, which is good. Writing, as I say, we can use the PC, which helps a lot. Mobility is something I have to manage but I’ll try and limit the movements that I do make and encourage people to come to me. So things can be done to work around it.

Nicolas finds even long trips relaxing when he is on holiday. Travel for work is more of a problem.

Getting around an airport can be awkward with mobility. But it’s no more difficult than going anywhere else. So I’ve not had any real difficulties with that. Given that the travel is over a protracted period of time and I take quite a relaxed attitude to that. That’s fine, in comparison to sort of business travel, when you’re in and out for a day and you’ve got things to do. It’s quite a relaxed approach, so I didn’t have any real difficulties with it.

 
What about stiffness after a long haul flight?

 
One of the best things I did, because of the resort we were staying at, was get a massage. So that was good. I did have a bit of an adverse reaction to it because I was quite stiff, but I got over that quite quickly. Swimming was useful. It’s interesting I don’t have any difficulties with gross movements like swimming. It’s the fine motor control and the small movements that I struggle with. So I appreciated that, so that was another form of exercise while I was out there.

Business travel, I feel is a bit more pressurised. In that it’s much more intensive for me. Our head office is in Toulouse. So it’s a flight there and back in a day and it’s a long day. And that’s quite intensive and that I struggle with, and you’ve got to do a days work while your there and all that sort of thing. So that can be a bit awkward.

Nicolas was slightly surprised that the NHS consultant had a different view on medication to the one he had seen privately.

I saw, the consultant I first saw tried three different types of medication on me, so Sinemet and two others, I can’t remember, Ropinirole and one other I can’t remember. And they had, over a short period of time they had little effect or no effect. So he felt there was little point in managing with medication. Also I wasn’t too badly affected and his advice was to manage as long as you can without medication. I subsequently changed to the NHS list and saw a consultant in his team who’s approach was some what different and suggested that I ought to try medication and that’s when I got offered Mirapexin.

 

So I just think it was a different approach. The original consultant advised not to use medication unless you felt it necessary. And the new consultant suggested that you ought to use medication as soon as you can. So, just a different opinion.

Nicolas considered several possible causes for his Parkinson's disease.

Diagnosis made me think about causes. Could it have been a bang on the head when I jumped down the stairs when I was 11 or, when I was flying and a bag dropped out of the overhead locker and bumped me on the head. Was that the cause? I don’t know. My lifestyle was quite good. I kept fit. I ate healthily, drank in moderation. I don’t smoke or do drugs. Personality wise, I’m quite driven and time bound. My father’s health was not good, that made me think about that. But I don’t believe he had Parkinson’s disease, so I didn’t think there was anything hereditary there.