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Jack - Interview 03

Age at interview: 61
Age at diagnosis: 60
Brief Outline: Jack was diagnosed with MND a year before interview (2003), after some years of leg pain and stiffness. Symptoms have progressed slowly, still mainly leg weakness. He now uses a walking frame. (Wife Mary present, also interviewed separately MND04).
Background: Jack is a retired graphic designer, married with 3 adult children. Ethnic background/nationality' White British.

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Jack started noticing symptoms (tingling, aching and stiffness in his legs) two and a half years ago. At the time he put it down to the fact that he was doing a lot of physical work helping his son's home improvement business, and that he needed a hernia repair operation. He mentioned it to the GP, who kept an eye on his symptoms at every appointment over some months. 

Gradually he began to find it difficult to get up from a crouching or kneeling position, and had to stop working with his son. At one visit to the GP about a year ago he found he was unable to walk in a straight line and was referred to hospital for tests. The tests included a lumbar puncture just before he was discharged, which gave him terrible headaches for nearly a week. Eventually a diagnosis of MND was confirmed. He has been taking riluzole since then. At first it made him feel light-headed but now he has no side effects. He has home visits from his GP, and sees the neurologist regularly.

Since diagnosis, Jack's symptoms have got slightly worse. He has problems with balance and turning round, and uses a walking frame, provided by his occupational therapist. He finds he needs to get up and walk around every 15-20 minutes so that he doesn't get too stiff. When his wife goes out he prefers to stay sitting in case he falls. As someone who was previously very active, he finds it frustrating not to be able to move around freely. He misses things he used to love such as gardening, walking and fishing, but tries to take each day as it comes and keep a positive frame of mind.

 
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He had such a bad reaction to the lumbar puncture that his wife called an ambulance. It would...

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Jack' I had the lumbar puncture the end of the afternoon on a Friday. And it was a bit hurried. I think it was hurried anyway. And they didn't give me long to rest afterwards before I was kicked out [laughs]. They closed up the shop and it was all a bit untidy, you know. And we eventually went - my wife was with me - we eventually went outside and it was a hot day and I started to feel pretty ropey. And we were in the pub opposite the hospital. 

Mary' We were not drinking. We were waiting for our lift to come along. So we thought it was easier to be picked up there.

Jack' We were sitting outside. Yes. And I really did feel rough, you know. And eventually my son came and he picked us up and brought us home. I didn't feel good at all for the rest of that day or the next day to be honest.

Mary' For the week.

Jack' Well yeah, for the week, I suppose.

Mary' He couldn't sit up because of pains in his head.

Jack' Yeah, pains in my head. They did warn me I might have pain for a couple of days but it went on for the best part of a week. So my wife rang the ambulance and off we went to the hospital and this guy he gave me a good going over. I told him the story that I'd had about three or four days previously I had a lumbar puncture and I was still getting the pain in the back of there. And well, he just more or less said, 'Some people do. You'll be all right.' [laughs]. He was a very young doctor. They all seem to be these days.

Mary' But again if we had been told that my husband could have suffered a week we wouldn't have disturbed the ambulance people. Do you know, we wouldn't have had them out here. But he was so bad on Tuesday, he was in agony.

Jack' But the one that did it was only a young guy, early twenties I reckon. He probably hadn't done many.

Mary' They should have given us more details about what to expect afterwards.

 
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His grown-up children have all reacted differently. One son has been more emotional than he...

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My eldest son, he's upset about it and he's a bit of a rough diamond, old [son's name]. But he quite often phones me up and tells me he loves me, you know, and things like that which is, if you met him, you wouldn't believe it that he would say things like that. But he does. And my daughter, she's ok now but in the beginning she cried a lot. She doesn't live around here, she lives in [city] but she does come up to see me whenever she can. The middle son whom I used to work for he is different, different to the other two. He doesn't show any emotion, really, except at times when he'd had a few he phones me up. He phoned me up when I was in hospital having the tests done, but at midnight. And he was a bit, I knew he'd had a few drinks and he told me he loved me and he was sorry about it and started blubbering, you know. But it's there, you know, they are all in their own way upset about it but they don't dwell on it.

 
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He misses walking, gardening and fishing. He liked outdoor activities and sometimes feels he's...

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So to sum up what's the whole impact of all this been on you, really?

Well, disastrous in a way, because I was so active and I've been like cut off at the knees, if you know what I mean [laughs]. I loved gardening. We used to go out walking in the countryside a lot, which obviously we can't now. I can't take this contraption with me. A big thing really with me is not being able to do what I like doing. I mean, I used to fish a lot - local river - and it means going across fields and following the river. I used to like that, you know. But I shan't be able to now. I should still be able to fish on the tow path and things like that, but that's not what I like. I like getting, you know, I like getting covered in mud and that sort of thing, getting in there with them, that sort of thing. When I fish I'll have to change my approach but it won't be as good. And all in all, as I said, I feel like I've had my legs chopped off. I still can't get used to that. I probably will eventually, I suppose.

Must be difficult. Have you been able to take up any hobbies that you hadn't done before instead of those sort of activities?

I haven't up to this point, no. Whether I will I don't know. All my hobbies were getting out there and getting amongst them. You know what I mean? And I can't seem to relate any of it to sitting here. Difficult, yeah. Maybe I will eventually cotton on to something. I mean, I can read, obviously, which is fine.

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