Kevin - Interview 16

Age at interview: 58

Age at diagnosis: 56

Brief Outline: Kevin was diagnosed 2 years ago. Although he still experiences stiffness, particularly in his shoulder and neck, most of his symptoms were managed well by Ropinirole but it caused nausea and has os now on Rogitotine 4mg vvpatches.

Background: Married, adult children Network IT consultant (now home-based).

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Two years ago, Kevin was on holiday abroad when a medical student suggested to him that he might have the early stages of Parkinson’s. On returning home, a neurologist confirmed his diagnosis. For quite a while, he found it hard to believe that he had Parkinson’s.

 

At the time he was experiencing slowness and stiffness in his joints. His handwriting was affected and he had problems sleeping. He started taking Pramipexole but this made him feel sick, so he changed to Ropinirole. Many of his symptoms disappeared and he started to question if he really did have Parkinson’s. After a period of changing medication and stopping medication, he began to accept that he did have Parkinson’s because his symptoms returned.

 

Now he takes Ropinirole and recently an anti-depressant, which helps to take away a fuzzy head that he has at times. Apart from the stiffness, his main problem now is extreme tiredness, which affects him shortly after he takes his medication, three times a day.

 

Kevin is an IT consultant and has continued to work full time. He was finding the customer facing aspect of his job difficult and he told his boss the difficulties he was experiencing. His company has been very supportive and he now is able to do the majority of his job from home. 

 

He went to his local support group and was surprised at how useful he found it. Apart from meeting others that he can discuss similar problems with, Kevin finds it very useful to have guest speakers talking on different subjects related to Parkinson’s. He recommends others join a support group. 

 

Kevin tries to be as active as possible. He exercises at the gym two to three times a week, which helps to relieve the stiffness and makes him feel much better. He tries to fight his symptoms rather than let them take over, by taking regular exercise, biking, walking and swimming.

 

He notices that stress makes his symptoms worse and when he is on holiday relaxing, his symptoms improve. He thinks it is important to stay positive and live life as normally as possible.

Kevin finds it embarrassing if he is overcome by sleepiness during a meeting at work. He finds he can keep awake working in the house or gardening.

The main affect that I have is the side effects of the tablets, which I’ve always had on all the drugs that I’ve taken, which is tiredness. About an hour to an hour and a half after taking the drugs, the drugs that I’m taking, I get this deep yawning session for about fifteen minutes where I’m yawning my head off and, tears stream out my eyes. And round about four o’clock in the afternoon I quite often feel like I really, really need to go and have some sleep. And after about half an hour, I feel okay again. So after each, each, I take tablets three times a day, about an hour after each one I get this yawny, yawning session. Real tired feeling, watery eyes. That’s the way it affects me.

 

Whenever you go to the doctor or the specialist and you say, “I’ve got this symptom, that symptom.” They, they seem to quite easily, this is not a criticism but it seems that a lot of these symptoms that you can have in your body are attributed to, to Parkinson’s. Sometimes I think they say it if they don’t know what the problem is, you know, let’s blame Parkinson’s. But that’s a harsh thing to say, I don’t really mean it in a harsh way. But that’s the main problem that I have at the moment is, is tiredness and sleepiness. I was in a meeting yesterday, a team meeting at work, and my boss was presenting and I could hardly keep my eyes open. You know, I know that can happen in meetings but this was ridiculous because I had to walk out the room and get a coffee, you know, it’s a bit embarrassing.

 

It must be difficult because if you’re taking it three times a day, you almost have to plan what you’re doing after that.

 

That’s right. That’s true but it happens more if I’m sitting at a desk working. If I was to be, for example, putting some shelves up in the house or digging the garden it seems to pass easier. It’s more to do with sitting still and particularly reading or, a book or a screen, seems to, that seem to be the time when it, you know, takes a grip. So it, so the recommendation to anybody else would be to keep moving, keep active.

Kevin's symptoms improved so much after 3 months that he began to doubt that he had PD and stopped the medication. 2 years later he needs larger doses.

I started off on pramipexole, which is a Dopamine agonist and I’ve found it hard to get over the sick feeling from the drugs and I felt really sick. So that was changed to Ropinirole. Requip is the commercial name, and I, I stayed with them for about three or four months and got up to four milligrams, five milligrams. And I, I decided that although a lot of symptoms disappeared I was starting to, because I think because I felt better, I was starting to question whether I was ill in the first place. So I decided to stop taking the drugs, and slowly and gradually a lot of the symptoms started creeping back in, especially this feeling of slowness. It’s like you’re in slow motion. So I decided that I had to go back onto drugs again. This is, in the meantime I’ve been seeing the neurologist quite, quite regularly, every few months. I didn’t just do it off my own back, obviously. And we decided to try patches and I think that’s a drug called Rotigitine. Very expensive, they don’t normally like giving them out I don’t think. But I requested the patches and I tried the patches and they were really good. But you can only take up to about eight milligrams a day. They’re 24 hour patches but I felt that, I felt they weren’t strong enough. I could go one step further.

 

But although they go up to sixty milligrams for use with, in conjunction with other drugs, on its own, the patches, the Rotigotine, you can only take up to eight milligrams. So in conjunction with the neurologist again, we decided to put me back on to Ropinirole which is where I was about a year ago. I’m currently on five milligrams of Ropinirole, Requip. It’s not a hundred percent, it’s not perfect but, they eradicate a, a lot of the symptoms. I feel a lot better. Still got problems with my handwriting and the rhythm of cleaning the teeth.

Kevin who was diagnosed with PD 2 years ago notices the benefits that follow a good workout at the gym.

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.

Kevin was totally taken aback when a student doctor, watching him walk round a swimming pool while on holiday, suspected he had Parkinson's disease.

Two years ago this June we were on holiday in Turkey and I was sitting round the swimming pool in the hotel and, a young student doctor came up to me and out of the blue he said to me, “I’ve been watching you, I think you’ve got Parkinson’s Disease.” And he proceeded to examine me by the pool. And I was, obviously because I didn’t believe him and I was quite shocked, and he examined me and he confirmed that he, he thinks I should see me doctor when I come back to England because he was pretty convinced I had Parkinson’s. He was in his final year of medical college. That ruined the rest of the holiday because we were there for two weeks and that was the second day. 

 

 I think that his diagnosis was based mainly on watching me walk around the, the pool area, the slowness. And then obviously by the standard examination practice that he performed.

Kevin resisted joining the local group because he thought it would be full of old people. He found he couldn't tell who were the carers and who had PD.

I went down to London to Parkinson’s Disease Society headquarters in Victoria about six, nine months ago because there’s like, there’s was a, there was a research establishment in there giving a lecture on stem cell research. And when I was down there, I met a few young people, and some of those young people hadn’t joined their local Parkinson’s Society because there were basically, mostly older people. They’d like to join the society if it was for, you know, a young person’s society, which I’d like to do. But there’s not one about. But having said that, the society here in [our area] is really good, very good.

 
Before the first time you went to that, how did you feel about going to it beforehand?

 
I felt that it wasn’t for me, it’s for older people. I had this vision of people in their, all being in wheelchairs, I was nicely surprised that I had trouble spotting in the room who were the carers and who had symptoms because they’re all on drugs, apart from one or two people in wheelchairs shaking away. I never envisaged that I would go back again but I’ve been going every since. I think it’s a really, really good idea.

Kevin had a problem with balance which affected his driving but only in the dark.

I’m based at home, I can, as long as I’ve got an internet connection which I have broadband, and my laptop and a mobile, I do now ninety percent of the job from home. And one of the other reasons for that is that , that I think I’ve got a problem driving, which I’ve, I’m told the  doctor and neurologist but they don’t consider it to be a serious problem at the moment, where I tend to lose my, it seems like I’m losing my balance, at night on a narrow country road. On motorways, roads that are lit up, no problem at all. But I tend to, for some reason I feel like I’m losing control between the, the white lines and the traffic coming the other way. Especially with bright lights, to the degree where I feel like I’m going to hit the kerb or hit them. So that I’ve given up driving at night, down dark roads, especially narrow roads, and that affects my job because in the Winter I could be in somewhere like Newcastle and I’ve got to drive home in the dark and, so they, they tend not to send me out to customer’s sites any more. So it has impinged on my job. But they’re very supportive and , you know, they’re, they’re sort of sticking in there with me.