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Jeff

Age at interview: 62
Brief Outline: Jeff’s wife has had MS for 30 years. Jeff took early retirement from work to spend more time with his wife as her MS had progressed.
Background: Jeff, age 62, is a retired schoolteacher. He is white British, married with two children.

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Jeff’s wife was diagnosed with MS in 1982 after experiencing severe headaches, extreme fatigue and visual changes from optical neuritis, which was described to them at the time as a classic sign of MS. Her early experiences were of continuing weakness and fatigue which meant that Jeff had to do a lot of work in the house, caring for their two young children in addition to his work as a schoolteacher. They were well supported, though, by local friends and members of their church.

As she began to recover, unaided, really, by treatment with ACTH, Jeff’s wife began to train as a teacher. She completed her probationary year, with Jeff’s help, and worked part-time as a teacher for another 3 years until she began to feel that it was too much and had to give up work. By 1988 she could not walk unaided and applied for DLA mobility allowance which helped to buy a second-hand automatic car which she could drive until about 1999.

They adapted their home with a stair lift but eventually moved to a bungalow in 2002 which they further adapted. Jeff only discovered, through the MS Society, in 2003 that they could have applied for some grants to help fund this work. 

Treatments over the years have included daily sunflower oil, which seemed to help reduce relapses for a time and, more recently, Botox injections to the feet to reduce spasms affecting her toes. Jeff’s wife now goes to a weekly exercise group for people with MS, organised by local physiotherapists.

Jeff took early retirement from teaching in 2007, having previously given up a senior position in the school and reduced his hours, so that he could be available to help his wife full-time. He does all the shopping and cooking and they pay for weekly help with the cleaning and ironing. He does find time to volunteer as a senior steward in the Methodist church, but will give this up after one more year.

Jeff talks about the support they have received from the MS specialist nurse and about the helpful information provided by the MS Society and the MS Trust. He and his wife support both charities with local fundraising and his wife is going to undertake a sponsored parachute jump for the MS Trust in 2011
 

Jeff took out life insurance and investments at an early stage of his wife’s MS and, even though he retired early, they don’t have money problems.

Jeff took out life insurance and investments at an early stage of his wife’s MS and, even though he retired early, they don’t have money problems.

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I think my main concern I suppose is what would happen if something happened to me. So I haven’t mentioned this in fact, but because this had happened quite early in our lives and having done research on MS and you read the worst things it can do, and you have to think, “Well, what would happen if something happened to me?” So I made sure I took out life insurance first, made sure we did a will. And I mean I made myself become something of a financial expert. I swotted up initially through a relative of mine who knew a lot and gave me a lot of good tips actually. But I made some long-term investments, which have recently come to fruition. So financially I’m very fortunate in that respect. But I don’t really have that problem.
 

Jeff is a senior steward in the Methodist church. Although his term of office is about to expire, there’s no one to replace him so he’s going to do it for one more year.

Jeff is a senior steward in the Methodist church. Although his term of office is about to expire, there’s no one to replace him so he’s going to do it for one more year.

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And do you have any opportunities now for any of your own activities or interests outside of the house?

Well, in, in some respects I suppose my diary is actually, now you’re retired, I hear everybody say this, is fuller than it was when you’re actually working. I think I mentioned earlier that our church, and people in the church, have been very, very supportive with my wife and myself through these times. And I’ve taken a more responsible post within the church there. So I’m kept quite busy and active there. But it’s sort of mutual support.

Say a bit about what that post involves?

Right. I am a senior steward in the Methodist church. So I’m responsible for quite a large team of stewards. There’s about, let me think, eleven at present, going up to fourteen next year. So I will organise rotas for duties to make sure everything is ready for each service in church, and visiting preachers, ministers are welcomed, met, everything is ready, the organist knows what’s happening, and they know what the readings are. And help to organise other events in the church, other special activities that take place in the buildings there. So, and a wider responsibility in, in the wider region as well. In the Methodist Church we call it a circuit, so it will encompass a large part of, of, of our county. So there’s a commitment to the other churches there as well. And I’ve served three years there now. Should have given up this year, but as in some things nobody seems to volunteer to replace you. So I said I’ll do it for one more year, and that’s it. Because I think now I need to again just give that little bit extra time now. The progression has slowed down in the illness of late. And as long as we’re careful now not to overexert my wife doing certain activities or get overtired. So, but I think it’s one more year and it’s, will be almost full commitment to her.
 

In the early days of his wife’s MS Jeff time was fully occupied with work and with looking after his family. He was grateful for the support of colleagues and friends.

In the early days of his wife’s MS Jeff time was fully occupied with work and with looking after his family. He was grateful for the support of colleagues and friends.

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Well, unfortunately my wife was very ill all that summer, extremely weak, bedridden. And had these drugs, like ACTH steroids, and of course with their side effects, whatever, but they didn’t help that much really. And various other drugs, baclofen I think was mentioned, was one of them. And gradually it was like a survival. Again it was summertime, so I was very fortunate being a teacher. But having happened in May, I’d still got at least half a term to go, and I must say my colleagues in school and my head teacher in particular [were] extremely supportive and understanding. As were also all, all the support we had from friends around, and particularly friends in our local church. In that respect very, very fortunate. 

So obviously I was there at home. I suppose I could cook to some extent, this, that, other. I’d learnt in fact how to cook basically, so I took over that, that role. And the odd things, you know, getting the house sorted out, ironing, getting the children ready for, for school. I was determined obviously to look after my wife as best as I could. I had a commitment to school and the children I’m responsible for. So what was I going to do? I didn’t want anything to come in the way of harming my children or making them upset. So in a sense I suppose I sacrificed my time entirely. So if I was invited to anything out in the evenings with my colleagues or friends, I would make my apologies, so I could give my, my time really to my wife and my children. But it became a planning exercise really, because time, there was great pressures on my time. 

I used to have a lot of homework to bring home to mark. Whereas previously I might have stayed in school to mark it, I would now leave school as soon as I could. My wife was unable to pick up the children from school when they started back after the summer, but local friends did. But I did my best to get there as soon as possible, pick the children up and so on and so on. Meals for school? Well, a planning exercise. I think I used to make sandwiches for the week and cut them and wrap them and freeze them. So that saved time in the morning. Exhausting. Certainly I felt very, very exhausted. But at least I was supported.
 

For Jeff’s wife, MS is progressing slowly. She takes an active approach to exercise for strength and balance, but Jeff thinks there might come a time when they will need a hoist.

For Jeff’s wife, MS is progressing slowly. She takes an active approach to exercise for strength and balance, but Jeff thinks there might come a time when they will need a hoist.

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When you think about the future, how do you see it unfolding?

Well, in my wife’s case as a very slow progression I suppose. So one just doesn’t know where one’s going to be in five or ten years’ time. But physios and doctor encourage us, us to make sure my wife has got regular exercises to strengthen leg muscles in particular and help with balance. And so every Monday we go to an exercise group with other MS people and, and this certainly helps the strengthening. And everybody is very very encouraging. And we, we’ve got our own aids fitted of course. 

But inevitably, I suppose, but in the future, but this could just happen to somebody in old age anyway when things begin to weaken they would not be able to get out of bed entirely themselves, they’d need some help. At present my wife can pull herself up but she has to go straight in to her, in to her electric wheelchair. But there may be a time in the future when we’ll need a hoist. I’ve seen this with other friends whose sp-, partners and spouses have, have had this and that’s something you, you have to accept I suppose. But beyond that it’s difficult to say really. 
 

Jeff’s wife has secondary progressive MS and they knew things would slowly, gradually get worse.

Jeff’s wife has secondary progressive MS and they knew things would slowly, gradually get worse.

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But each summertime, May, June time, there would be a little relapse. So she wouldn’t be quite so well. So, there’d be a dip in her performance. I would have to do a little bit extra to compensate. And then it was recovery time in the summer. But my wife had progressive, sorry, secondary progressive MS, so we knew things would slowly, gradually get worse.
 

Jeff’s wife had minor symptoms such as tingling but they thought little of it until, one night, she got a severe headache while they were camping with their two small children.

Jeff’s wife had minor symptoms such as tingling but they thought little of it until, one night, she got a severe headache while they were camping with their two small children.

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I suppose we’ll start back in early 1981. My wife had been perfectly healthy, in fact never seemed to have suffered from any illness whatsoever. If there was any stomach bug, colds, flu going around, she’d never catch it. But she started to get some strange symptoms. Perhaps when she bent her neck down get a buzzing sensation in the back of her spine, but didn’t think there was anything worth complaining about or investigating. It just was a thing that happened and then suddenly went. 

But these symptoms seemed to get slightly more frequent and came to a head in the summer of 81 when the family, my wife, my son was then I think aged 6 and my daughter aged 5, went on a camping holiday on the south coast of England. And possibly the second or third night on the camping holiday I was woken at 1 o’clock in the morning by my wife complaining of severe, very severe headaches on the top of her head and all across the top of her head, a blinding, I think she sort of described it as a sort of migraine, but far worse. And what do you do? You’re in the dark, in a field, 1 o’clock in the morning and away from home.
 

Jeff’s wife preferred not to have a lumbar puncture; the consultant seemed pretty sure that her symptoms meant she had MS.

Jeff’s wife preferred not to have a lumbar puncture; the consultant seemed pretty sure that her symptoms meant she had MS.

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And on his way out he just beckoned to me and called, and wanted to talk to me outside the door, and said, “I want you to be prepared for this. There’s a large possibility it might be MS.” And he said he thought the experts at the local eye hospital would give us some more information on this. And in fact that’s what they did. It seemed to be that it was a case of optical neuritis, a classic symptom of MS. In those days, all these odd symptoms, you, you, you, you couldn’t really put one cause to it, and they were sort of ticking off all the checks and MS was the one thing that was left at the end. And I believe the only other thing you could do at that time was a lumbar puncture. Which, there had been horrendous tales about at that time, being quite painful and my wife didn’t want that. But the eye specialist seemed to be pretty conclusive that it was optical neuritis and a classic sign of MS.
 

Jeff and his wife were very pleased with the effect of Botox injections on her painful feet, after initial difficulties in getting funding for the treatment.

Jeff and his wife were very pleased with the effect of Botox injections on her painful feet, after initial difficulties in getting funding for the treatment.

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One thing I did forget to mention is my wife mainly suffers from pain and fatigue. And because of the paralysis of some nerve endings, her left leg and toes are splayed out, almost like claw-like, and that made it difficult for walking. But we had recommendations to go to a podiatrist and make a support there. Which wasn’t quite so good. But we were then told that there was a possibility of using Botox. So rather than getting rid of your wrinkles, whatever, you have Botox in, in, your, in your feet. But in our local county they only injected Botox into the large muscles and not the small muscles affecting toes. So we went to the nearest large city, where they have a training medical hospital, and they used to every three or four months give injections into the, the base of the feet and muscles affecting control of toes. 

And that seemed to work very, very well indeed. It got rid of the spasm there. And my wife said she didn’t really feel the injections at all. Which amazed the registrar or the specialist there and, and the trainee doctors there as well. And so it helped my wife and it, it helped the trainee doctors as well. They were very grateful they were allowed to inject people without them screaming, “Ow, ouch.” And I suppose we had that treatment for about two years. And, and now a lot of the splay seems to have gone. So we have stopped it now. But we were told we, get in touch if it ever becomes a problem again. But the, the people there were so friendly, so wanting to help, and absolutely brilliant. The only problem we had was initially in getting the funding from our county to this city hospital, because it’s out of our area. But after, you know, a few months, probably about six months, it was granted. And we didn’t really want to drop out at first in case they’d say, “No, you can’t have it again.” So we kept it going for the two years I think.
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