Karl
Age at interview: 40
Brief Outline: Karl’s partner was diagnosed with relapsing-remitting MS in 2006, just after they had got married. They have moved to a flat on one level, close to local amenities and with wheelchair access. Karl sees managing the effects of MS as a partnership between them.
Background: Karl is a civil servant. He is white British, married, with no children.
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Karl’s partner was diagnosed with relapsing-remitting MS in 2006. They had both noticed that she had become less able to walk long distances and had some bladder problems, ‘little things’ as Karl calls them, but they didn’t know if they were serious or would go away. The diagnostic process took about a year, including GP appointments and frequent visits to hospital for consultations with neurologists and investigations. The diagnosis was a shock, though not entirely unexpected as they had been looking at information about the symptoms on the internet. The shock was tinged with relief though, because up to that point they had feared it might be something worse.
Initially, treatment was not offered because the symptoms were ‘not so bad’ and the neurologist thought it best to wait because of the possibility of side effects on possible pregnancies. Since 2009, Karl’s partner has been taking Tysabri, a disease-modifying drug, in a monthly dose. They are instructed to look out for particular side effects, but so far there have been none. It is difficult for them to tell if the Tysabri is having any beneficial effect.
They have received support from a local neurological rehabilitation team, a specialist physiotherapist, a counsellor and an MS Nurse, who is often the first point of contact for Karl’s partner when she needs information. Karl’s employers are also understanding of his needs as a carer, permitting him to accompany his partner on monthly hospital visits during work time, for example. They also have a Carers’ Network, which Karl has not felt in need of up to now, but is reassured that such support is available should he need it.
Although their families are at some distance (Australia and Wales) they are still able to visit both, with careful planning, and are in regular telephone and email contact. Karl describes in detail the process of planning and making a rail journey to Wales, with a wheelchair-user. He also talks about the benefits to them of the Disability Living Allowance, including the helpfulness to non-drivers of subsidised taxi fares.
Karl’s message to health professionals is to give more practical help to people with MS, in addition to emotional support; for example, provision of wheelchairs for emergency use. To carers in a similar situation he says: ‘It’s a partnership. Listen to your partner and anticipate their needs. You need to make more plans, but you can still do things you want to do.’
Initially, treatment was not offered because the symptoms were ‘not so bad’ and the neurologist thought it best to wait because of the possibility of side effects on possible pregnancies. Since 2009, Karl’s partner has been taking Tysabri, a disease-modifying drug, in a monthly dose. They are instructed to look out for particular side effects, but so far there have been none. It is difficult for them to tell if the Tysabri is having any beneficial effect.
They have received support from a local neurological rehabilitation team, a specialist physiotherapist, a counsellor and an MS Nurse, who is often the first point of contact for Karl’s partner when she needs information. Karl’s employers are also understanding of his needs as a carer, permitting him to accompany his partner on monthly hospital visits during work time, for example. They also have a Carers’ Network, which Karl has not felt in need of up to now, but is reassured that such support is available should he need it.
Although their families are at some distance (Australia and Wales) they are still able to visit both, with careful planning, and are in regular telephone and email contact. Karl describes in detail the process of planning and making a rail journey to Wales, with a wheelchair-user. He also talks about the benefits to them of the Disability Living Allowance, including the helpfulness to non-drivers of subsidised taxi fares.
Karl’s message to health professionals is to give more practical help to people with MS, in addition to emotional support; for example, provision of wheelchairs for emergency use. To carers in a similar situation he says: ‘It’s a partnership. Listen to your partner and anticipate their needs. You need to make more plans, but you can still do things you want to do.’
Karl can’t go for a pint with people from work on the spur of the moment, but he doesn’t really miss it. He prefers it that he and his partner still, ‘hang out with each other.’
Karl can’t go for a pint with people from work on the spur of the moment, but he doesn’t really miss it. He prefers it that he and his partner still, ‘hang out with each other.’
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What sort of impact has the MS had on, on your social lives?
It does make having a social life quite tricky because I do have some friends that I see from time to time and it just makes it more of a mission to try and catch up with people. Not to say that it can’t be done, because [partner’s name] quite capable of sort of feeding herself and looking after herself on an evening if I go out, so long as everything is set up for her. So, if I was going out I would leave something cold in the fridge for her and I’d leave a plate out and a knife and fork and she’s got my phone number and she’s got other emergency phone numbers, so we do work it out. It requires a bit more notice.
The thing that you can’t really do is, if you are at work at four o’clock and someone says “Let’s go for a pint”, it’s those sorts of things you can’t really do which, I’m older now so I don’t do that quite as much as I used to in my younger days. I don’t really miss it. From time to time it would be nice but… We used to go out a lot together to concerts and things like that and we didn’t do that for a number of years from diagnosis because we were planning weddings and buying flats and things like that. We went to a concert together, for the first time in a very long time, about two or three weeks ago. It’s the first time she’d been to a concert in a wheelchair, which we bought, and, yeah, we had a good time. So, we still manage to do those sorts of things, which is all we used to do anyway was to hang out with each other.
Family visits take some organising for Karl and his partner. They keep contact with their relatives by email and telephone.
Family visits take some organising for Karl and his partner. They keep contact with their relatives by email and telephone.
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My partner’s family’s in Australia, because she’s Australian and I’m Welsh and all my family are in Wales. So, we’re basically sort of quite cut off here from all our families. My father is still alive and I’ve got two sisters.
Do you, are you able to be in touch with them, you know, electronically, or..?
Yeah, we’re always on the phone to each other. They come to visit us, we go down to visit them. It’s a bit of a mission for us to visit them because we’ve got to get the wheel chair, got to book the trains and everything. I don’t drive. [Partner’s name] my partner doesn’t drive either.
My two sisters live in, one still lives in Wales the other one lives in [place name] we do see each other from time to time but it’s mainly email, telephone contact that we have.
Karl found a ‘lively discussion forum’ on the MS Society website which was particularly helpful when his partner was newly diagnosed.
Karl found a ‘lively discussion forum’ on the MS Society website which was particularly helpful when his partner was newly diagnosed.
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I’d have to think about that. Yeah [cough] it was mainly support through the internet, through their forums, because they had quite a good lively discussion forum on there. There was quite a good section for the newly diagnosed. I think that was where I got most of my, our help from, the information, so it’s mainly useful for that, I think, which was quite good because you could sort of talk to people and ask questions to other people, go on line and everybody was pretty much in the same of sort of position so that was quite useful.
Did that lead to any kind of ongoing relationships with other people or was it just kind of one or two occasions entry into the forum and out again?
One or two occasions but things like that they wasn’t sort of lasting, it wasn’t anything that you could build on. I think if you were that way inclined you could, because I know there’s quite a strong local group that meets from the MS Society. I know they have, they meet every month in one of the coffee shops in [place name]. That’s, that’s good but it’s not something that we thought that we’d really want to do because we do go out on occasions together and we’re not really the sort of people that would hang around in a group anyway, so that sort of thing doesn’t really suit us.
And the carers forum on the MS Society website, is that something that you’ve had a look at yourself?
I have. I didn’t find it that useful because from, what I could tell, a lot of people only came to that particular forum when they were on their last legs and they were absolutely desperate for help, when it was the last resort. And there were a lot of very painful stories on there and I thought, “Well, I’m not at that stage” and I’d probably get help before I got to that stage, so I find that quite off putting sometimes. So I didn’t go on there too much.
Karl and his partner only make plans for a year or two ahead because they don’t know how MS is going to affect her.
Karl and his partner only make plans for a year or two ahead because they don’t know how MS is going to affect her.
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Oh, we do from time to time. But, like I say, MS is such a difficult thing to quantify and to come to terms with that you can’t really make long terms plans. So we tend to just make short term plans, that we know what the next year or two we do this. We try not to think ahead too far because you just don’t know how it’s going to, to affect her. There might be a cure that comes along, there’s research all the time into stem cells, she might get a lot worse, so you can’t really make long term plans like that.
Karl’s employer provides very good support for carers, including a ‘Carers Network.’
Karl’s employer provides very good support for carers, including a ‘Carers Network.’
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A carers’ network at work sounds very interesting. I’ve not heard of that before. Can you say a bit more about that?
Ah, there’s not much to say really. I mean, they just have meetings every, every, sort of twice a year, and you’ve got a list of email addresses if you ever need anything from anyone or you need to talk about work issues. And so far, perhaps I’ve been lucky that I’ve not really needed work support from them. It’s mainly work related issues that they’re there for; if you’re having problems in your department or the manager is not as understanding as the manager I’ve got at the moment, then they’re there for you for those sort of items, those sort of issues.
Karl and his partner were relieved that she didn’t have a ‘much worse degenerative neurological’ condition, or a ‘worse’ type of MS.
Karl and his partner were relieved that she didn’t have a ‘much worse degenerative neurological’ condition, or a ‘worse’ type of MS.
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Were there particular things that you feared?
Ahhh, it’s difficult to remember now. There were things like Lou Gehrig’s disease, I think, was one of them and there’s a lot of sort of really much worse degenerative neurological things that she could have been diagnosed with. And the type of MS that she had, which was recurring remitting isn’t, isn’t quite as bad as other types so there was sort of that to cling to as well.