Marcelin - Interview 37

Age at interview: 55

Age at diagnosis: 51

Brief Outline: Marcelin was diagnosed over three years ago (in 2003), after several years of weakness in his arms, and later his legs. He now uses a wheelchair. His speech is unaffected. He continues to work full-time. (Partner Tess also interviewed, MND44).

Background: Marcelin is a research and technology systems engineer, divorced, with 4 children aged 27, 20, 16 and 7. Ethnic background/nationality: African.

More about me...

Marcelin first noticed cramps in his hands and weakness in his arms about 9 years ago (in 1996). At the time, he was living and working in France, having moved there from Senegal. He was referred to a neurologist who was a specialist in multiple sclerosis, and had many tests but no firm diagnosis. He came to study at a university in the UK for 2 years, and continued to travel to the UK frequently. Gradually his legs started to get weaker until one day in 2003 he flew to the UK for a work trip and was unable to get off the plane and had to ask for a wheelchair. It was in the same year that MND was finally diagnosed by his neurologist in France. Although Marcelin had done his own research on the internet and suspected it might be MND, it was still a devastating blow when it was confirmed. He felt there was no hope. His marriage was already in difficulty because his wife found it hard to cope with his condition, and after the diagnosis their relationship finally ended. Marcelin felt suicidal at times, and felt he had to grieve for the loss of his family and his health. Trying to explain his condition to his youngest daughter and knowing he would not be with his family in future was extremely distressing.

Marcelin decided to move to the UK and work here. This was part of a conscious decision to change his life and start fighting back against MND. Shortly after moving here he was admitted to hospital for a respiratory problem, and his health needs were assessed. When staff discovered he had no support at home, he was immediately referred to a disability support team. He has been impressed with the quality of health and social care he has received since. He cannot fault the way care has been co-ordinated and equipment provided, and feels he has been kept very well informed. With help from his employers and Access to Work he has been able to continue working full-time and is also studying for a work-related PhD. 

At first Marcelin took riluzole but decided it was not making any difference, so he stopped. He wishes he had been diagnosed earlier, as he believes early intervention with physiotherapy and psychotherapy could have helped, and perhaps taking riluzole earlier might have had more effect. He wants to continue to enjoy life as long as possible, but has made a Advance Decision to Refuse Treatment (ADRT) previously known as 'Living will' to say he does not want to have ventilation if his breathing becomes very difficult. He would rather let nature take its course.

His philosophy is to keep positive, keep active, and get out of the house to meet people. He goes to music therapy and hydrotherapy, and is very active in his local branch of the MND Association. He joined a sailing club for people with a disability, and there he met a volunteer who has since become his partner and now lives with him. He never thought he would start a new relationship and it has given him new hope and confidence. 

When he finally got a diagnosis after 7 years, he felt hopeless and that there was no point going...

Until that point I was still having the hope that there was a possibility to come back, or to, to train my muscles back. And I'd done a lot of things with my GP, who was always not keen on discouraging me, but slowly let me realise myself. But I was still believing that it was possible for me - and as I say I was a judoka sportiest - I was still thinking that it was possible for me to fight back and come back and, and make a good physiotherapy and do something. But I was realising that every effort I was doing was getting me more tired. So it was difficult. And when I got this diagnosis, I would say, should say that I had tears in my, in my, my eyes. And when I came out of the hospital it took me a while to get into the taxi, while I was waiting for the taxi to come and pick me up. Because I was realising at that time that I was definitely a disabled person and I was changing life. And it was not the fact of dying of this condition, just the fact that I was thinking that I had no way to fight back. And it was clear there was no cure yet and the, that the, and the degradation would continue. So I was trying to find a way and I, at that time I was completely distressed. I've lost completely any, any hope. And honestly at that time I would say I've thought any kind of situation could be ending my life, and going in the mountains while I could still do something and die from hypothermia somewhere there, just to disappear. Because you reach the point at this time when you know that you cannot fight the condition. You think that there is no, no hope. And so that was the status in which I was at that time.

That's, that's interesting, because some people who've had that very long route to diagnosis have said to me there was an element of relief. But it sounds like not in your case.

No, because at that time the first reaction was that one, honestly. I said, 'Okay, well, there is no hope then.' And because my, my family, my private life was going badly because of the condition as well - because this condition is a wedding killer. So you cannot blame anybody to, not to be able to cope with it. It's just as people are. And so these two things accumulated just lead me to the point of saying, 'Well, okay, I'm abandoned and I'm here. And then what will I do now? I'm useless.' So that was more or less what the, the diagnosis meant to me. Even though the, the doctor kept me for an hour and a half, we talked about it, I was very courageous when she said about the thing. I was putting questions, I was very cold. But the, the heat came after, when I was alone. And, and this is something which has to be clear.

Such conditions, whatever they could be, MND or any others which are terminal, the stronger you could be or are, at the point of time, it will hit you, because you realise. And then the point is, from that point it was, it was a long journey for me to get perspectives, get new ways of condition, accepting my situation and finding ways, which have taken some while. Yeah.

He wants to continue working - it makes him feel useful and he enjoys interacting with other people.

How important is it to you to be able to keep working?

The fact is that it's very important for me, because I've been working in this area for a long time, and I'm with the same company since now twenty-five years. And for me it's very important because it's the progression of my career, leading me to do now application of a lot of my experience in the research and technology, where I'm working. So it's more intellectual rather than physical. Because I know that MND doesn't affect my intellectual capability etc, so I can use computers, I can do it. So it's for me one way to still exist and still be useful, and feel that I'm not useless. So it's very important, yes, to go every day, interact with people. And by luck I still can speak, and that's very important. I can communicate with people.

I've started now to have business trips again, like I used to have. And when I went to Amsterdam I was very happy because it was a conference I used to be previously. And I've seen people I have not seen for many years. And of course they were surprised to see me in a wheelchair, but they saw that I was still able to participate and contribute. And that was a very good feeling.

Straight after diagnosis he did not want information about MND, but then he decided to find out...

When you did get the diagnosis, how did you feel about information? Did you want to know as much as possible, or were there some things you just didn't want to read too much about?

Exactly. That's, that's when I will come back to, to my reactions, that lack of hope first. And then afterwards, being what I am as a competitor and as a scientist, I said, 'I want to know. And I will look as much as I know, as I can about this condition, to know the enemy and know what I can do.' Because I was still convinced that there was a way to, maybe not to fight it and win, but there was a way to, to hit back. And that was exactly what put me, or helped me put these things in perspective. I was finding a way to hit back. 'Okay, I cannot stop you, but I will hit back.' And this is where I started after three years, two years and a half, to really find a way first of all to adapt to this wheelchair condition etc, start to find a sense of humour about these things, accept the situation of my family, children etc. My move to the UK was part of the, of the hit-back, to say 'Okay, I change completely my life. I am no longer in France. I'm here, which I always wanted to be.' And things started to, to crank, crank on since that time. I came here in February 2004, just after, after the diagnosis, and from that point on I just restarted my life differently. And of course I went to the MND site here in the UK. I received a lot of information and continued to inform myself. I bought books of medicines, and studied the problem, 'I'll see, okay, well, this, what they are doing.' And I'm still continuing to study it.

He tries to keep active. Singing in music therapy helps his breathing. He had breathing problems...

At the beginning I was less knowledgeable, but as I was going into this condition and knowing better what I would be needing, of course they always told me, 'If you see anything that you would need, just let us know.' So at the beginning they were, pre-empting, but they always let, left the door open to me to suggest. And that's, that's why in this flat you don't see too many equipments. It's not heavily equipped with, with aids etc. I just have what I need, actually, because I said right at the beginning that I want to continue to fight. I want to continue to use my body as much as I can. And if I reach a limit where I can't use it, okay, I will make an adaptation. But until that point, I will push it. And that's the case with my breathing. I don't want to have any assistance with that. I still continue to use my lungs. And actually I go for musical therapy twice, twice a month. And in musical therapy we can play music with xylophones with my hands. It's an exercise which is seemingly done without thinking. And the other side, I sing at the same time, and singing helps my breathing and helps my lungs working in a, in a seemingly fashion as well.

Have you had breathing problems, apart from the time when you were admitted to hospital?

It, at the hospital it was because of that problem, of the ulcers.

Yeah.

But afterwards, at the point of time, it was about six months ago, seven months ago, I started to have, let's say, a diet which was not enough and I wasn't sleeping enough etc. I got tired. And it was affecting my, my breathing capability. And then at that point - and now I'm feeling much better because I've changed this situation. And my GP helped me by medication as well. And now I'm really much better and the breathing is, is working fine.

What medication did you have for that?

When, when - the medication was mainly because I had some bowels problem, because at that time not having a proper diet I started to have really problems and diarrhoea etc. And so I went two weeks at the hospital at the end, at this Christmas, and because I was anaemic. And at that time then they started to give me some steroids etc. And the steroids make a big difference. And I'm now, I've tapered it down now, I'm getting it down, out of it. But it seems that I have recovered, recovered quite well. All the blood tests now are showing quite a good recovery and good thing, which has taught me a lesson. Because it's always the same problem, it's one thing bringing the other one. At work I have nobody to help me to go to the loo. And then because I'm not able to transfer from this, the other chair I have to the, to the toilet - which there I have a, a riser as well which has been bought by my company - then I tend to say, 'Okay' to refrain myself going there, and of course refrain myself to keep my dignity. I don't eat at noon, I don't drink. And so I start to get a problem. So from one situation I've brought another problem. And this is where I taught my, learned my lesson, because I would cope with MND, but having a problem linked with all the bowel etc, I don't like it. It's, it's worse. So I said, 'I can avoid that' so.

He gave up driving because he was worried that tiredness would make him lose concentration at the...

Are you still driving?

Not any longer. I gave up driving when I was in Toulouse. And, and simply by the fact that I couldn't any more control my feet and they, they were completely - there was a foot drop. So it's impossible at that time to drive a car. And because I, I know that with the fatigue it could be dangerous, I gave up this, the driving and so returned my licence [laughs].

Was that hard? For some people giving up driving is very hard.

I think when I was, when I reached this point it was already in my mind. I said - because I'm very thoughtful of others - I say, 'A car is a vehicle which is a, which is a weapon. Even at 30 miles or 30 kilometres per hour it can kill someone. So what would be my situation if I killed a child because just I was not fast enough to, to brake or to change, or to turn, because my arm went astray etc?' So knowing this, and because I was knowing better about the condition, I know the trap, the tiredness which just knocks you before you realise it. So I decided at that time that it was off. And when they request me to return my licence, I said, 'No problem. Have it.' So I was not at all affected by it.

It is important to him that his mind is unaffected and he can continue to work in the same job.

The fact is that it's very important for me, because I've been working in this area for a long time, and I'm with the same company since now twenty-five years. And [coughs] for me it's very important because it's the progression of my career, leading me to do now application of a lot of my experience in the research and technology, where I'm working. So it's more intellectual rather than physical. Because I know that MND doesn't affect my intellectual capability etc, so I can use computers, I can do it. So it's for me one way to still exist and still be useful, and feel that I'm not useless. So it's very important, yes, to go every day, interact with people. And by luck I still can speak, and that's very important. I can communicate with people.

He has been impressed with the quality of the support network locally. He feels completely taken...

I was surprised to see how the different services were really cross-referring themselves. And, and there was a team of people really co-ordinating what was needed. And, and thanks to the information they gave me and the help they gave me I could have, let's say here in the flat for example - I could have my, my bed raised by the Social Services of [city] and which helped me to be able to transfer more easier to, easier to the wheelchair. 

And because of my breathing aspect or issue with MND, I have from the DART team [Disabled Adults Resource Team] a raiser-recliner, which allows me to, to be in a position where I can really be sleeping in a better position at night, easing the, the breathing. In the toilet, the same, the DART team allowed me to have a toilet riser, which helps me of course to, to transfer when I want to go back from the toilet seat to the seat, the wheelchair. And they install as well a swivel seat on the bathroom, on the bath, which allows me to bath - not to bath, but to shower myself in a safer position. So all these different equipments, adaptations, things I have in the kitchen etc have been brought to my attention by people, physiotherapists, occupational therapists, who know about the, the condition then said, 'Okay, this exists, this exists. We can get it for you, we can get that.' So that's the way I felt completely in a network, completely taken care of. And that was a very comforting situation. It helps me in that case putting things in, even more in perspective. Because I felt that you're disabled doesn't mean the life stops. There are way, there are ways to work around it. And they help me in, in understanding that.

Marcelin never thought he'd have another relationship, but it means a lot to him that Tess wants...

Well, it, it happened very, very naturally in fact, because I went to a disabled sailors' club, and this disabled sailors club you have disabled, who come to, to sail, and you have helpers. And my partner is a, is a helper in the club. And so I was there in the club, and so we, we met there and sympathitised and discussed and that's how these things very naturally came on. We shared the same passion at that time in, in sailing. For me it was a discovery because I didn't know how to sail before. But I, it was a passion coming from, from my father, who was a, a sail craft, he was building, making sails. And so that's how we met [laughs].

Had you ever expected you'd have another relationship?

No. I, at that time after I have this situation, I've given up any hope in that direction. First of all because I say, 'Well, if you are valid and you have this situation, you are now invalid - who will look at you?' And this is one of those things which I still continue to believe, that if you are in a wheelchair you, you are zero, really, regarding this aspect. And so, well, my partner is telling me, 'No, no, it's not the case, it's not true. Women are more subtle that you think,' and I tend to believe she's right [laughs]. I'm learning.

[omitting interviewer question]

It, it made a big difference, because first of all you meet, you meet someone who is a helper, who does it on a voluntary basis, which demonstrate quite a thoughtful, thoughtfulness as a person. And so the way I've discovered my partner is that I said what, what for me is, is of great value is of, of respect, is the fact that - and esteem - is that this person is taking me in my condition right now. And she has seen pictures of me when I was valid. And she has never seen me valid. But she has seen me as I am. And this is something which I value a lot, I think, and this is why I value this relationship, really. It helped me a lot [laughs].

His Living Will (ADRT), states that he does not want any ventilation. He wants those caring for him to let him go slowly and naturally. He does not want to be a burden.

Do you ever think about Living Wills and advanced directives and all of that, or?

I've done that.

Oh, you have?

Oh, yes. I'm very, very free and relaxed on that. Because I, I've done the Living Will (ADRT),and there's a copy with my GP, there's a copy here with us. And I've done it in the sense that I've said I don't want any problems if we reach the final point. And the reason I've given to my GP and other people it's very simple. Suppose we talk about the breathing problem. If I was living in Africa in the condition where I have no access to devices like Nippy [non-invasive ventilator] or other things like that, I will die naturally, because my, my breath, my lung would not be able to, to cope at the point, so I would die. So why would we continue here to give me a Nippy or to put me under therapeutic harassment, and things like that, if the body is finished? So in this case just let me go. And it's natural. So that's the, the way I feel about it. So I'm very, very relaxed on that. I said, 'Before we reach this point, I want to let you know that there's a lot of energy in the body. It's not easy to die. So I will still continue to, to fight until I can't.' The main point is that I've made a Living Will because I don't want to be a burden to anybody. So if I'm just a, a piece of, a body in the bed cannot even any, unable to do anything, it's better to let me go slowly because it means that we're reaching the point.
 

Religion is not important to him, but he believes in some kind of entity. He sees illness and...

Is religion important to you?

No, not important. What is important is [cough] what I said - I'm a scientist. I've put the questions along, very much, and I reach a point where there are things that I cannot explain. So in my viewpoint, religions are just interpretations. So I'm very free about that. People can interpret the way they want. I'm tolerant to every interpretation. But I don't need religion. But I reach a point where I committed. For me I'm committed to believe there's an entity. So I don't call it God, because people can call it God - so there are not - a lot of people are Christian, believe in what they call God. They idolise their way. No problem. What I call an entity is more complicated than that. It's things which are both spiritual and physical etc. It's just the fact that I am committed to believe that there is one, because I cannot explain things like energy, and plus and minus, content and not content etc. So this helps me to have a very strong spiritual position, by the fact that I'm not afraid of death. I have, I'm not at all polluted by things like heaven or hell, all these kind of things. So I just believe that there is a wonderful world, and a wonderful machine that we are, and all the wonderful machines of our loving life, whether they're animals or, or humans or plants. And this is the sign that - for me anyway - diseases are part of, of, of nature. So in fact I came to this perspective very slowly by thinking that there is a need for having diseases, because that's the way nature regulates the, the species and regulates everything. And nature, for me, in my conception, is the armed arm of the entity. So if there's an entity somewhere, it's using nature to regulate this thing. And from that point on I'm fine. But still it doesn't mean that you are, or you cannot fight or you cannot hit back. It's nature given to you as well.