Marcelin first started to experience symptoms in 1996 and received a diagnosis of MND in 2003. Marcelin talks about his journey with MND and why he decided to share his story on the DIPEx website, Healthtalkonline:
The diagnosis of MND was devastating. You always think it will happen to someone else but after receiving the diagnosis you just have to cope with it. We are only tenants in our bodies and we should always try to make something positive out of something negative.
I first got involved in the DIPEx site when Hilary Fairfield, an employee of the MND Association asked if I would be happy to be involved.
I was delighted to be involved in DIPEx because it provides such good support to any individual experiencing a terminal illness or other health condition. Perhaps if people can see what helped me come to terms with my diagnosis it may help them too.
I had no apprehension at all doing the interview and felt at ease speaking freely about my experience with MND. I see it as a way for me to do something about MND and be useful.
Right from the beginning I said that I wanted 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. That's the case with my breathing. I don't want to have any assistance with that. I still continue to use my lungs. I go for musical therapy twice a month and sing which helps.
I have a Living Will. I'm very free and relaxed with it and I've done it so that I don't have any problems at the final point. And the reason I've given to my GP and other people is very simple. Suppose we talk about the breathing problem. If I was living in Africa where I would have no access to devices like a non-invasive ventilator, I would die naturally, because my breath, my lungs would not be able to cope. So why would we continue here to give me a ventilator or to put me under therapeutic harassment if the body is finished? So in this case just let me go. It's natural. So that's the way I feel about it.
I will still continue 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 anyone. So if I'm just a body in the bed, unable to do anything, it's better to let me go slowly because it means that we're reaching the end point.
Although I am respectful and tolerant of anyone's belief, religion is not important to me, but I do believe in some kind of entity. I see illness and death as important parts of nature and I’m not afraid. 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 species and regulates everything. And nature, for me, is the armed arm of the entity. If there's an entity somewhere, it's using nature to regulate, and from that point on I'm fine. But still it doesn't mean that you cannot fight or you cannot hit back. It's nature given to you as well.
To view the MND section of Healthtalkonline, click here.