Neil - Interview 21

Age at interview: 48

Age at diagnosis: 35

Brief Outline: Diagnosed 13 years ago, Neil has had GDNF and deep brain stimulation which improved his symptoms. Now he has stiffness, slow walking, and sometimes his speech is affected.

Background: Partner, 3 step-children, retired HGV driver.

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Neil was in his early thirties when he noticed that his left arm was becoming stiff and it was harder to unlock doors. His walking was slower and his handwriting was becoming difficult to read. He went to his GP, who thought he was doing too much and gave him some medication. The symptoms continued and he was referred to a consultant at his local hospital. A firm diagnosis could not be given so he was referred to a hospital in London for a second opinion. It took two years from when he first noticed that his handwriting was different, for Parkinson’s Disease to be diagnosed.

 

Neil was scared that he would be in a wheelchair or need to use a stick. He tried a range of different medication but the only one that made any difference was Sinemet Plus. Neil was put forward for an operation call GDNF, which was very successful and cured many of his symptoms. For two years he felt like his old self. Only ten people in the UK were offered the treatment at the time. But unexpectedly the pharmaceutical company withdrew the drug which was used as monthly top up after the operation. Neil was devastated and his symptoms soon returned.

 

Two years later he had deep brain stimulation, which was successful. Together with medication, his symptoms have drastically improved. Now he has stiffness, slow walking, and sometimes his speech is affected. 

 

Being diagnosed at a young age has been hard. One of the worst things is dealing with strangers. Sometimes people think that Neil is drunk because his speech is slurred and he drags his leg at times. It is hard to cope with stranger’s wrong interpretations but it is something that he has learnt to live.

 

He encourages others to not give up if they are not offered deep brain stimulation straight away but to keep pushing for it, if it is something they want to happen.

Neil's PD was diagnosed when he was 35. Recently he and his partner have swapped roles and this works well for both of them.

Because my partner works full time, we just basically decided to swap roles, I do, I do the housework now. I do all the ironing, the gardening. We help, we help each other. And but I drive. I’ve got a motability car. So it hasn’t stopped me doing, but I’m, I’m a bit slower. When, when it does what I call pack up, I’ve got to stop and rest. I can’t keep going on and doing it. But then I think well, I’ve got all day to do it. So I just sit down and rest and I can carry on ironing or the hovering or anything like that. So it, it’s not, it affects it a little bit, but not, not to the point where I think, “Well, I, I can’t do it.” You muddle through.

Neil felt he had been very fortunate to be included in the trial of GDNF.

And he tried me on, must have been about a dozen other tablets, but none of them seemed to be working. And I, I just heard about this operation. It wasn’t GDNF, it was something else. And I, so I kept on to him, the surgeon, “Can I have that? Can I have that because I don’t want to be an old man.” And he said, “No, you’re still too young.” Eventually he referred me to a surgeon who’d done the operation, who’d done the operation and how can I put it? There’s always a consultant and a surgeon. I was referred to the consultant and he point-blank told me that I was too good for the operation. He went all through the, the benefits of this operation and then told me, “You’re too good.” But luckily the surgeon was next door and he said, “You’d be an ideal candidate for this, this operation.”

 

And then, so they put me on what they call 90 day trial. What they call themselves psychoanalysis, something like that. The person that tests your mind and make sure you’re, you’re sane. And you done tests like separating coins and, with one hand and clicking a counter with the other hand, and putting pegs in boards, and memorising numbers he said and you’ve got to say them backwards. And that was, that was hard because I was getting tired. And, and then the results come back through and he said, “Yes, we’ll, we’ll accept him on, on the course for this operation.” But I didn’t know that there was only ten people that were able to, that’s all they, they were allowed to do.

 

And so 90 day come, you go to hospital, they take you off medication. They do a video and they send you away again to do a six day and 30 day. Then on the 30 day one, they get you to sign all the consent forms but still tell you the, the morning of, before the operation you’ll go and do some more tests. “But you could still fail. If, if you’re good enough you could still fail. We won’t operate.” So then I thought, “Oh.” So I thought, “I can just do my . . .” I thought, “I’ll just do my best.” But what they don’t tell you is your best, they want the worst from you. I was thinking, “Oh, I got that right, got that right.” But I was getting it wrong. And the one I failed on miserably was the smell test. I couldn’t tell the difference between petrol and soap, because my sense of smell had gone and everything like that. And then, well he come up and said, “Go home and get a bag and come back in. You’re going down for surgery in a couple of days’ time.” So I talked to my family. They, they told me the risk, the hospital told me the risk that was involved, because it’s a new, such a new operation, there were risks that I wouldn’t come out, come out of surgery. I thought, “Well, I’ve got to go for it.”

Neil and the others who were on it were disappointed when the trial of GDNF was discontinued.

I think it was about a week or two weeks I noticed I could write more, I could keep it on the line. It was, it wasn’t getting smaller, it was getting, I could read it. I could do things like sensitive, turn over heavy milk bottles, turn tissues, whereas before I couldn’t do that. And I thought, “This is great.” And then he said, “Every month you’ve got to come . . .” I’ve got to go back. He said, “It lasts, it only lasts a month, then you’ve got to be topped up.” And then, “Oh, this is great. This is the cure.” And the company, the drug company who owned the, who developed the drug, they come down from America to see, to see us all, because they couldn’t believe the results. Because they always thought it would take about two to three years before you see any, any improvement and to see somebody in two to three months walking, doing things. Because they’re, they’re, they’re different tests from, in America. They weren’t convinced they had done it right in the hospital I was at. So they done all sorts of tests like finger clicking and touching your nose and doing everything like that. And they was amazed. She said, she even said, “Oh, it, it’s, it’s cured it.”

 

But, unfortunately, that, that went on for about two, no, was it? two years. I had my life back. And then all of a sudden we just got a phone call out of the blue from the hospital saying the drug, all top ups now had been suspended. They just pulled the plug on it. Of course we was all devastated. Thought, “What’s going to happen now?” But I, well, I was, I was one of the lucky ones, because whereas they used, because they’ve got a pump in them, they used to pump, they used to pump all the, the, the drug up to you, but they didn’t turn mine off. They used to, they had to turn everybody’s pump off and put some, what do you call, saline solution in, just to keep the, the pipes all washed and clean. 

 

But for about three months I was going in there and I couldn’t understand why they was getting me in and just telling me to go home quick. But then I found out if I did stop they was topping me up all the time with this drug, which they shouldn’t have been, because they believed that if they had one person they could still show results. But eventually they was forced to stop. So, but all the other nine have had their pumps taken, all their wirings, but I’ve still got mine in. And then, that went on for, oh, about two years. And we was all, we was ringing each other up, we was all going, “How are you?” “Oh, I’m poor, I’m bad now.” And then they, they always said to us after the first operation, “You, if you want, you can always, if you feel like it you can always have the, the DBS operation. There’s no question you will get that.” 

Neil describes two incidents when his slurred speech led to accusations of drunkenness.

Yes, it’s, the impression you give, you’ve got a job, it’s like, just slurred, everything’s all slurred. If people have never met you before, they’ll probably think, “Oh, Christ, he’s drunk.” Like I’ll give you an example, I went in a shop the other day in the morning. Because I weren’t too good, I was, you, you tend to drag your leg a bit, and your arm, people with Parkinson’s when you walk you don’t, my arms always straight down at my side. When I walked in this security bloke come up to me, he said, “No, you can’t come in.” I said, “Why not? I only want a packet of fags.” “No, you’re drunk mate.” Of course you’re ready to just blow your top. But anyway luckily I knew somebody who worked in the shop and she come out and explained to him. And of course he was all apologetic then. 

 

I can give another example. My eldest boy, it was back, oh, about a year or so ago, he walked, we had the garage door open and he, he accidentally walked into the garage door and gashed his eye. So I took him to the local hospital. Then because my speech was disturbed and slurred because I was concerned about him. The more frustrated I get, the worse it becomes. The receptionist, we was in this room waiting to see about his eye. I thought it strange that they come in, both of them come in the same room and he sat down and he said, “Do you want to tell us the truth now?” I said, “Pardon?” “You hit him.” I said, because they interviewed him as well, did I hit him? I said, “I can’t believe I’m hearing this.” He said, “The receptionist said that you was, you was, your speech was slurred and you staggered in.” So I said, “I can’t, I don’t believe you, you’ve asked me that.” So I said, “All right, I’ll tell you this, because I’m going, I’ve had enough of this now.” I said, “I’ve got Parkinson’s. I brought him in because he walked into the garage door, like he’s told you, and you’re accusing me of hitting him.” Well, of course they bent over backwards then, didn’t they? They wanted to know all about it. I said, “I ain’t got time for you.”

Neil used to keep a record of on and off times to tell the neurologist at his hospital appointment.

Good days are brilliant. I can do, well, touch wood, I’ve had this week, I think, I used to keep a diary before we go to hospital every half hour, was it good that half hour. And I’ve been keeping a secret diary the last week or so in what they call ‘on’ when you’re good, and ‘off’ when you’re bad. And I usually get up about 7 o’clock. Go to bed about half-11, 12. So what’s that about 13,14 [hours], something like that. In all that time I was only off for about two hours, which is good. But then that was at night-time just before I was going to bed. So I used to sit down and watch telly and so, it’s good.