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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.’
 

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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Have either of you got any family nearby, or..?

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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You mentioned the MS Society a couple of times, looking at the website for advice and support, the research documents and so on. in terms of support could you say a bit more about what kinds of support you personally have found helpful through that organisation and its website?

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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How much do you think about and talk together about the future and what might unfold ahead of you?

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 and his partner used the internet to find a physiotherapist, and to get information when she was newly diagnosed. But Karl thinks you have to be careful about information on the web.

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Karl and his partner used the internet to find a physiotherapist, and to get information when she was newly diagnosed. But Karl thinks you have to be careful about information on the web.

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The MS Society has a good website and we’ve used that as a starting point to sort of try and track people down. We’ve managed to track a physiotherapist down through the internet just before [partner’s name] relapse through a combination of looking on internet forums and eventually we found a physiotherapist that specialised in MS. We just phoned her up at the hospital and she was quite surprised as to how we found her [laughs].

I guess people might think you could just get a physiotherapist through ordinary Health Service referral channels. I suppose, it might sound a bit surprising that you would need to try and track a physiotherapist down on the internet. Can you say a bit more about that?

Yeah

And how she responded?

The trouble with physiotherapists is that a lot of them, MS is quite a specific problem and lot of physiotherapists have never seen anything like it before. And a lot of them will deal with sports injuries and things like that. And prior to finding an MS specialist [partner’s name] actually went to a private physiotherapist, just to see what would happen, and the, the gentleman gave her a few exercises but basically said, “I don’t know what to do with you because your body is fit and healthy. There’s nothing to repair, it, it’s a mind thing that basically you’re trying to repair and you’re trying to train your body and it’s a bit too specialist for me.” And that’s what led us to the internet hunt.

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.

You have to be a little bit wary of information that you get from the internet and the sort of people that are on the internet. You can’t always tell if the information that you are receiving is correct or if the person who you are speaking to is really who they say they are. So you do have to take everything with a pinch of salt. The MS Society website you do trust more than others but there’s some, some very shocking websites out there [laughs].

If you, if you Google for ‘MS cures’ then you come across all sorts of things; lead weights and pyramids and all sorts of crazy ideas and diets. There’s a whole industry, I think, in diets for people with MS with things like gluten free diets and vegan diets and diets where you don’t eat any peas and all sorts of things and you have to take a lot of those with a pinch of salt because they’re always trying to sell you something. Cos you think, ‘Oh, this looks interesting.’ When my partner was first diagnosed we thought, “Oh, maybe gluten’s the thing” and we looked through gluten and they’re trying to sell you a recipe book for gluten free recipes and so we thought, “No” [laughs]. So you do have to be quite careful.

It sounds like you’re quite savvy about that?

I think we’re both quite cynical [laughs] with things like that. Not, not to say that we haven’t tried anything, other things like that. My partner tried acupuncture when she was first diagnosed just to see. It didn’t really do anything, but it was worth a try. 
 

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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I’m quite lucky, working in the Civil Service, because they’re quite understanding to carers’ needs and there’s a carers’ network at work which is useful for things like support and they have meetings which I go to sometimes and just to sort of be, they’re very aware of our situation and [partner’s name] goes to the hospital once a month and they’re very good at letting me take time off every month to accompany her because at the moment she wouldn’t quite be able to make the journey on her own.

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.
 

It was difficult for Karl and his partner to get practical help, such as a wheelchair or crutches, when they needed it.

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It was difficult for Karl and his partner to get practical help, such as a wheelchair or crutches, when they needed it.

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I think the only improvements that they could really make would be in practical things such as we had a terrible time getting hold of a wheelchair for my partner at the time when she had a relapse. She was basically paralysed from the chest down and it was a very difficult time and we badly needed a wheelchair just so that she could get to the toilet and things like that. And we, they, they basically said, “Oh, we haven’t got any.” But they gave us a list of about three places that if you phone these people they’ll be able to get you a wheelchair. One number didn’t work. The other number didn’t sell wheelchairs anymore. The other one was a wheelchair supplier in [place name] but they wouldn’t deliver and [place name] about ten miles from here so that that’s absolutely no good at all to somebody that needs a wheelchair; to say you’ve got to be able to travel there to pick your wheelchair up. So, eventually, we bought an old, sort of, second hand one. But if my partner had been on her own she would have been completely stuck at that point. 

And, again, she wanted sort of crutches, after the relapse. When she was out of the hospital she wanted crutches to see how she could get on with them; she thought that she could walk, perhaps, a few feet if she had crutches. And it took us a very long time to get them. I don’t know if there is a budgetary issue or anything like that; or it could have been Health and Safety issues because before she had the crutches they had to have someone to come around and train her how to use them. So it could have been that sort of thing. But it wasn’t, when we actually needed practical help [coughs] it was quite difficult to get. There’s a lot of, sort of, soft help, emotional support like the carers group and people to talk to and there, there seems to be an awful lot of that but not a lot, we had a terrible time with practical help when we needed it. So that’s, that’s the only improvement I could think.
 

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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There was a lot of relief because once you know what something is you can deal with it and up until that point there was a lot of fear of the unknown. If you look on the internet to, to diagnose yourself there’s all sorts of things that can come up that are a lot worse than MS, so there was a little bit of relief that once we’d identified it we could sort of take steps to combat it. 

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. 
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