While he was in hospital he had lots of tests done and he was basically told by the consultant that he either had a brain tumour or he had MS We were told to come back a week later which in that week I found out more about MS and I found out more about brain tumours, because obviously you get to hear something like that and you get very, very worried. He had some more tests done the following week and he, we both went into the office and he was told that he had MS. Out of the two that was the better of the two. We came out of there, we both hugged each other because we were in a relationship at the time but weren’t married. We were due to get married three months later and basically we went out, we bought a bottle of champagne, bought a take away and actually celebrated him having MS rather than a brain tumour. The going out and getting the bottle of champagne and the take away was a sort of release mechanism I think for both of us, just knowing that it wasn’t a death sentence. It was a, a life sentence but it wasn’t a death sentence and that was the happier of the two diagnoses we, we could have had.

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 theres 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 wed 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 theres 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.

I never noticed anything I suppose that’s because my wifes mother also had MS very badly and by the time I knew her she was incontinent, in a wheelchair, practically unable to speak, she died at the age of 58. And it was a very, very upsetting experience. I just didn’t want to know about MS frankly. So it was my wife who realised that shed got MS and she went along to the hospital and got diagnosed and came out and told me and I was thunderstruck, I couldn’t believe it had happened twice in the same family especially with being assured by the doctors that there was no genetic component to MS which we now know is not true.

And I remember, actually, the evening he was in there, he stayed overnight, that the nurse had given him a book about MS, so it was kind of fairly obvious that’s what he had but none of us, I didn’t know anything about it at all. Our children were very young at the time. I remember just going to visit him overnight and thinking, Oh, well, it’ll be fine. It’ll be some. You know, but then obviously, he had, was given the diagnosis the next day and came back and I remember being absolutely devastated. So because it’s the kind of very well, like a final, theres nothing that you can do about MS.

Cancer, I always have thought and always said to people, cancer, you think oh, well, you can kind of fight it and you can have treatment and with MS, really there isn’t, there are treatments available but there is certainly not a cure and I think, you know, I remember just being extremely, both of us being, you know, devastated when we first got the diagnosis. But, of course, since then, so that was ninety seven, that’s really, you know, however many years ago that is, we have managed to learn to live with MS or Chris has learnt to live and I’ve learnt to cope to, you know, look after him, to some extent.

The day we got the diagnosis, the day we saw the consultant and he said to us that’s what it was likely to be, it was horrendous, it was really, really hard. Because you have to keep really strong, you know, for my daughter I thought well, you know I need to be the strong one here and get her through it and let her know that it’s not the end of the world and everything like that.

It was a bolt out of the blue.

You know, that was the very phrase I just had in my mind that other people have used exactly that phrase because I was going to ask you what is that like?

Yes, yes.

Suddenly, everything changes.

It’s, it did, everything absolutely did change because probably typical parent her older brother was at University, you know, so academically very flying through. I always knew that my daughter didn’t want the same type of progression that her brother had had but, you know, I thought that she, you know, A Levels and then go to higher education and then, you know; sort of have as many options that she could open to her. But all of a sudden this illness made us reassess actually what life was all about and, you know the main, my main priority then that she was healthy and happy and if academic routes and things like that weren’t going to help her feel well and feel good about herself then I totally shifted it and mentioned doing things like, you know, are you revising, do you need any help, do you need to do this, to all of a sudden saying Look, [name] do it if you want it. You can come back and do it next year, you can come back to this, you know, just let’s get you through this next period. So, yes, it fundamentally I think made me reassess what I needed to do to support her for her to be happy and fulfilled in what she did and that was to find a job and to be an adult. Shes got quite an old head on her shoulders and she wanted to work, she wanted to earn money, she wanted to contribute in that way and that’s what shes doing.

Well, I remember sitting listening to this phone call and writing on a piece of paper, MS’ and my mind just went blank. I didn’t know a lot about it. I didn’t know how severe it was going to be. The doctor had said it wasn’t anything to worry about, but at the back of my mind I knew it was something a bit more serious than that. I knew there was no cure for it and I knew that once you had it you had it for life. We were kind of just sort of numb, all of us. I remember going out for a walk and meeting some old friends, I must have started telling friends about it, “Oh, it’s MS” you know, like you’ve got measles or something and they said, “Oh terrible news”, you know, “Weve heard” and I was, “Fine. It’s nothing to worry about”. And it was a kind of total denial and I did try and find out something about it . I went on the website, the MS Society, and got some information but I still couldn’t take it all in.

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.

By the time he was referred to a neurologist and then sent for diagnosis, that was coming into three years. However he was sent to have an MRI scan at [hospital name] which is in [location] and within two weeks the neurologist had called us in for the diagnosis and he was diagnosed with primary progressive MS.

To my surprise half way through the diagnosis I left the room because I felt so burdened and so confused. After about 20 minutes he came out because I could hear his voice asking the receptionist Where is my mum?’ and she says Oh shes in the ladies’ and his reply was No shes not, shes somewhere crying, tell her to come and take me home and give me my lunch.

I brought him home that day and he was really, really and truly happy. I just couldn’t understand why he was so happy and I said, Why are you so happy?’ He says, Mummy just pass me the phone and I will telephone my friends and tell them what happened,’ because at that point he was still able to use the telephone, the tremors wasn’t to a great extent. He rang his friends and told them he had MS and he was laughing and smiling. So after it ended I said to him, Why is it, again I’m asking, why is it you’re so happy?’ And he said, I now know what is wrong with me. I was really terrified not knowing what was wrong but now I know, that’s it. And I felt, all the burden that I was feeling inside sort of subsided because I thought to myself, immediately, if he can accept it so can I. I know nothing about MS but I’m going to do my best to keep him, you know, health wise, the best I can.

After all the tests were done, completed, we were seen finally by a registrar at [place name], who told me, and my son and his wife, because he was going to get married in a month’s time, exactly a month’s time, told us that he had something, rather like MS. There was no confirmation.

At that point that was it. That’s what we were told. We were, although I’d got that inkling of what was wrong, you still feel very shocked and it was such a blow. My son was relieved. That was his first reaction to it. He thought he had the brain tumour and so he thought he was given a space and he thought, well, the news wasn’t so bad.

But even so we were still groping around in the dark. There was no one else to talk to. I think if wed been able to just sit and compose ourselves after that. Talk to someone with some knowledge who could have set our minds at rest, or may be, even if wed had a telephone number to may be contact somebody to say look help. Just having a bad moment at the moment can you please help. But there was nothing. It was a case of go away. Forget about it and live your lives

Well unfortunately we couldn’t do and working on the District my, I came in contact with lots of patients with MS, and unfortunately we saw quite severe cases. So it all preyed on my mind. So I felt very little support for my, well to enable me to give my son, because I was trying to protect other members of the family and myself and really to try and soften things for him.