Stephen - Interview 44

Age at interview: 42

Age at diagnosis: 33

Brief Outline: Stephen was diagnosed with PD when he was 33. After several years when no medication proved successful this was redefined as Parkinsonism and he was offered the DBS operation, This was carried out in 2005 with very good results.

Background: Driver. Divorced 2 children.

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In 1999 when he was 33, Stephen consulted his GP about a tremor in his right hand. The doctor suggested it might be due to a trapped nerve or to ‘nerves’ But when the tremor became more troublesome and began to affect his leg as well, he was referred to a neurologist and was told he could have MS or Parkinson’s disease. When PD was diagnosed he was relieved feeling it was much better to have this than MS.

 

Over the next few years his symptoms deteriorated and although many different drugs and drug combinations were tried, none of them really helped and most of them made him feel sick and excessively sleepy. It was explained that he had Parkinsonism and not Parksinson’s Disease and that this explained why he did not respond to the medication.

 

In 2005 his consultant sent him to Oxford to be considered for surgery. It was not funded immediately but when it was he had no hesitation in accepting it. He had been explained the risks and the procedure and even though he knew that he could die in the operation he was determined to go through with it. At that point he felt life as he was was no longer bearable.

 

The first indication that the operation was working was that his hands, which  had been rigidly clenched, relaxed and he could move his fingers freely. After the operation he found that he  could walk quite easily and speak clearly. Most surprisingly to himself and his doctors, his urinary incontinence had disappeared.

 

Since the operation three years ago he has continued to feel the  benefits. He takes Sinemet  regularly  five times a day. He found that if he took two at once he would experience bradykinesia making his head twitch.

 

At the time he developed PD he was married with two children of 8 and 5. Soon after this his wife left him and since then he has brought up t he children on his own though he benefits from the help of h is own parents and siblings. His daughter has just left school and is planning to become a nurse.

Stephen described his reaction to people with neurological problems before he became one himself.

When I first got Parkinson’s like it hits you because, it’s really strange because when you see somebody or you hear about somebody’s got some sort of disease or you sort of, they pass you by and you, you think to yourself ‘poor devil is she in there must be hard for them’ and, they go by and your life goes on and that’s passed sort of thing. But when it’s you it, it’s a hell of a shock and I was quite numb when I walked out of [the local] Hospital when they told me I had Parkinson’s and I sort of, for the first couple of weeks yeah I did get a bit depressed.

Stephen reached the point where DBS seemed to be the only option.

... they said to me, “Look we want to try a range of different drugs on you because we have to try, as many drugs on you without doing harm to you obviously, but as many drugs as we can on you to see if anything’s going to work on you, and then if it doesn’t further on down the line, we’ll give you an operation.”

 

Was there any, ever a point where you thought ‘no way I’m not going to do this’?

 

I would say that when I was being pushed down to the theatre I was scared, really scared and, I was thinking about my life because, I knew there was a chance that I could lose my life but I was in such a state with my legs and my hands that, in a way, this sounds silly but, I don’t think I had a lot to lose, you know, people would say, like some people would say to me, “How, I wouldn’t have gone for that operation, I wouldn’t have had brain surgery.” But if those people were robbed of the use of their legs and their hands, and their life was so changed from the life they had previously then I think they, they would have the operation, but until you’re put into that position you don’t fully appreciate what you would do, you know, and that, and that, and I believe anybody out there in my situation would have had the surgery, you know, and.

Stephen was amazed when the effects of stimulation became apparent during the operation.

...then they took me into the operating theatre and, like parts of the operation are sketchy because I was in and out of consciousness, because I had to be conscious for a certain part of the operation because they wanted to know that what they were doing inside my brain was the right sort of parts that they were, operating on. And, it was just amazing because my hands were, were all crimpled up and I couldn’t open my hands and for eighteen months I was unable to write or do anything with my hands and after they , when they started tweaking my brain around I could open my hands and open my fingers and, I couldn’t believe it. And like my shakes they stopped, like one minute I was shaking like a leaf and then when they were putting these electrodes into me and when they turned them on my shakes stopped and, it was like a, I felt like the Six Million Dollar Man with all the electronics in me, and, that, I can’t explain what that did for me because although I’ve tried to keep a positive outlook on things there are times when you get seriously down about things, you can’t be happy all the time but I’m a pretty happy-go-lucky sort of person anyway, but that was fantastic, it felt like I had a new body and I said to [Professor A] after the operation if he’d have been a girl I’d have given him a snog, I was that happy and overjoyed...

 

...Yeah when they turned the stimulator on the interesting thing that I noticed was I felt this burst of energy go through me, it was like, I felt so much more awake, like when I was awake before the operation it was like a tired sort of wakingness, if that makes sense, but I had a, like a zest, a zest of life pumped through me and one of the things I didn’t mention was like, although I said I could open up my hands I couldn’t, they asked me to lift my feet and I could lift up my feet and move my feet around, and I struggled to have the power to do that and that, that was really amazing to me because for eighteen months I was just struggling around with walking sticks, you know?

Stephen was happy after the operation.

I was that happy and overjoyed, and after my operation, after the first four days they said that, I could get out and have a walk so one of the nurses hold me and steadied me and like it was just incredible because, I was, before my operation I was walking on, I was on two walking sticks and I was hardly moving and, if I’d have carried on the way I was without the operation I can honestly say, and they told me, I wouldn’t have been walking I would have been in a wheelchair so, when I was walking up towards the end of the ward my mum and dad came in and my mum, her eyes were watering because she was so stunned seeing me walking with, without walking sticks and I can’t explain the feeling that I felt but it was like being born again and it was really fantastic and, like when you always had the use of your legs sometimes in life you take it for granted that you can do the things that you can do, but when those things are taken away it, it’s a real reality check and it makes you appreciate just how lucky you are that, in what you’ve got in life, you know? 

Stephen could reduce the amount of medication he takes.

I don’t take many pills and the object of the operation was also, the main thing was to stop my shaking which they achieved, but it was also to limit the amount of pills I was taking because I felt like, if you shook me I’d rattle, as I was taking so many pills and I’ve always been against taking drugs and I only take drugs when I really have to take drugs because I think drugs, like you can get addicted to them that is a problem sometimes, if you take a certain amount of drugs you become reliant on drugs and it can be a vicious circle, and once you start taking lots of drugs people get hooked on them, but I was one, lucky, in that I only take what I need to take and I won’t take no more, you know? 

When his generator was turned off during a hospital examination Stephen realised just how important it was for him.

I don’t have to turn my stimulator off at night, some people have stimulators where they, they, they can alter their stimulators but people that have stimulators that are, they don’t turn them off the only time you would turn off a stimulator is, is if you were in hospital with the nurse or the person that was, examining you, you know, to see how you are with a stimulator. Like while I was in hospital they had this computer and it had keypads and, on the screen were these green arrows and you had a green arrow flashing green, green arrow left and right, and you had a green arrow that would come up green and red and you had to use your left hand first and that would test your reactions and how well you could use your fingers and you were doing it individually for each hand, and when they turned my stimulator off it was a massive shock to me, it quite scared me because my, like I said, my hands and my legs were shaking, my eyes, I could hardly open my eyes and without that stimulator my, in my brain I would be like a vegetable really, so I’m totally reliant on my stimulator.

Stephen thought that people would change their views on stem cell research if they themselves became ill.

Whatever you can do to help people can only be a good thing. And like they want to know my opinion, opinions on stem cell research, and my opinion on that is, is that anything that helps anybody, why not go for you know? And some of the times the people that complain about stem cell research, when they get something wrong with them they go to the doctor to get pills but those pills have been tested and they’re complaining about the testing for things that help people, so that makes them hypocrites in a way, so I’m all for things that help people, you know, and modern technology’s a wonderful thing, and they’re always bringing out new things to help people out. So, in the whole I’m very grateful for everything that I’ve had done for me and I live each day for each day as they say and not look too far ahead and I’m really grateful to everybody that has helped me out with my Parkinson’s Disease.

Stephen's friends treated him differently, although he wanted to be treated normally and as who he was.

The thing I find is that, this is weird but, some of my friends don’t come round and see me anymore because they feel awkward. But they shouldn’t feel awkward because I’m still the same person, I’m no, I’m no different to the person that was before he had Parkinson’s, but, they feel, awkward, and then there’s some that are treating me for who I am which is great, you know? But I’m, I don’t like to be treated no different really, no, and I don’t treat anybody no different who, who is, who are impaired by whatever disease they’ve got or disability, I treat everybody as an equal and I think you should always treat, treat anybody.

 

For instance, before you became ill did you, would you go to the pub?

 

I used to go to have a drink now and again, I When I had Parkinson’s with the shakes before my operation I didn’t hardly go out at all I, I isolated myself because it was embarrassment and unease. Since my operation, occasionally I’ll go out, my daughter and my son say, “Get on out dad, we’ll be alright.” And I stop and have a drink or two, but when I’m out I still find that there’s an uneasiness with my friends and they’re not the same as they were before I had Parkinson’s, you know? But I, I do try to get out and socialise.