Paul Y

Paul’s wife was diagnosed with primary progressive MS in 2001. The main effects have been on her walking. They divide domestic tasks between them and have installed aids to mobility in the house. Despite his own health problems, Paul is optimistic, taking each day as it comes and not reflecting too deeply on what might go wrong.

Paul’s wife was diagnosed with primary progressive MS in 2001, following a series of falls which resulted in fractures to her arm, elbow, wrist and finger. She was reluctant to have investigations to discover the cause of her falls because she feared it would be something serious, but Paul insisted that they try to find out the reason so that they could do something about it. Paul’s wife was profoundly shocked to learn it was MS, particularly because a friend had the condition, was in a very poor state of health and has since died. Her own MS has progressed slowly, only affecting her legs. She still is at risk of falling and takes drugs to strengthen her bones so that when she does fall there is less risk of fracture. There is no treatment for the MS itself, though there has been discussion of taking a cannabis-based drug if she gets worse.

Paul considers that they manage well between them; he does the cooking (enthusiastically), shopping and gardening, his wife does the washing and ironing and they have paid help with cleaning. Their relationships with near neighbours are mutually helpful and supportive. Paul’s wife is able to walk short distances pushing her wheelchair, she is still able to drive and, within the house, they have installed aids to mobility and safety; for example, a bath rail and a modified step into the garden.

Paul is concerned, though, about how his wife would manage if he was not around.’ His own health has not been good in the last five years as he suffers from multiple myeloma and needs to have recurrent chemotherapy to keep the disease in remission. In general, he is optimistic about things, taking each day as it comes and not reflecting too deeply on what might go wrong. During periods of remission from his own illness, they try to do as many things as they can, enjoying mini-holidays and cruises together and making time for Paul to continue his professional activities on the boards of two accountancy associations. Paul is also a lifelong cricket enthusiast and member of the MCC.

Paul’s message to other carers is not to despair. Although his wife feared the worst when she was diagnosed, the worst hasn’t happened and they have found ways to get round everyday problems.

Paul and his wife have mutually supportive relationships with their close neighbours.

Age at interview 76

Gender Male

So between us weve found a way of coping with the MS that shes got. If it develops to other areas of the body then, you know, it may be more difficult but the one great fear I’ve got is that if I’m not around I don’t think she would be able to cope but, fortunately, we have got some very, very good neighbours either side and across the road and we all help each other. The next door neighbour, whose husband is very poorly, they ring each other every single morning just to see how each of them are and whether theres anything we can do for each other, bit of shopping or getting pills from the pharmacy or whatever it happens to be.

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Paul enjoys cricket and going out for meals, as well as his volunteer work.

Age at interview 76

Gender Male

Oh, God, I’m quite busy professionally. I’ve not found a way of doing anything that pays me any money but I’m a volunteer. I’m an accountant by profession and I’ve got two accountancy associations and for a long time I’ve been a volunteer for those and I serve on their council and things like that. And for one of them, I’m a pension trustee and I do quite a lot of work in that area, which involves me going up town, staying overnight in a hotel and then spending the next day on trustee work and that means I have to leave my wife for that one night but we can cope with that. I mean I ring her sort of morning and evening and see how she is and so on and so forth but she, she can cope with that. But I wouldn’t be comfortable leaving her for more than one night really and once a twice a year I go away, I’m asked to attend conferences, accountancy conferences and in different parts of the country and I take her with me. So I can keep an eye on her to some extent then and other wives that are at the conference, they look after her as well and are quite happy to push the wheelchair around and so on and so forth. So we get by.

The other things that we do, I still, all my life I’ve played cricket and I still play cricket but not very often now and not very well now but I formed my own cricket club fifty, just over fifty years ago and I’ve played every season since but I only play once or twice a year now. So it’s, you know, virtually stopped. But I, I am a member of the MCC so I go up to Lords and I watch cricket when I can. I think I managed to get there about eight times this year, which is the most I think I’ve ever managed.

Also going to nice restaurants, we like that. I do it more than my wife does because in my trustee work, I always take the trustees out to a nice restaurant and shes not involved with that but if she hears I’ve been to a nice restaurant, I then have to take her to that restaurant some other time [laughs].

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Paul strongly encouraged his wife to find out why she kept falling.

Age at interview 76

Gender Male

Well, my wife was actually diagnosed in two thousand and one with MS but in, two or three years prior to that she was having falls outside and I noticed that she wasn’t picking her feet up. At least one particular foot, I think it was the right foot, she wasn’t picking it up properly. So any slight raised pavement or anything, she would trip and she would tend to go over and if she falls with the bones being, as we later found out, affected by osteoporosis she would have breakages and she broke her arm and her wrist and her finger and so on. I said, that weve really got to find out what the problem is, why shes having these falls, because at that time we didn’t know that it was MS, and we, we saw our GP at the time and he didn’t recognise what was happening, couldn’t understand quite why she was falling over and it was only when we were walking down the road one day and we saw our old doctor, who lives nearby, long since retired, and we were talking to him and he said, How, how are you? and so on and she told him and he said, Have you thought of seeing a neurologist? Which we hadn’t.

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Paul’s wife was more shocked than he was because of her friend’s experience of MS, but it has not progressed as fast as she feared.

Age at interview 76

Gender Male

My wife spent about a week in the [hospital name] and at the end of that time, after having various tests, the doctor in charge came up to her and said, Yes, you’ve got MS. This was a profound shock to her in particular because we had a friend, who had MS, who’s subsequently died, and she was in a really terrible state. And my wife expected with that diagnosis to go the same way. The type of MS shes got is primary progressive MS, so we expected it to gradually progress. Fortunately, perhaps because she was diagnosed relatively late stage, in her life I mean, not in the progression of the illness, she was about fifty seven, when she was diagnosed and we have known people, who if they get MS when they’re young, it seems to progress faster than it does if you’re diagnosed later.

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