When we arrived at the doctors surgery and it was our turn to go in I went in first and I told the doctor again what I had written in the letter and could he please test him for it. Okay that was fine, Shane went in on his own because they did not want me in there with him, however when he came out I asked him what happened and he told me about the different tests that he had. Again, he came out with yet more tablets. I made another appointment about two months later, went back to the doctor and had a one to one with him explaining about Shane about the symptoms and that I’d be able to live with the things I know but the things I don’t know I just find it so distressing. By then we were getting into two years so he decided that he would send him for a referral.

Can you talk a bit about the project that you work with now?

I named the project after Shane, it’s called The Shane Project and the reason I started it was because when Shane with MS I found that within my own community they just did not know about Multiple Sclerosis. It’s getting better now but at the time you say MS and it would be as though you’re talking about Marks and Spencer’s, it was never a condition. And in the black community conditions like that are stigmatised, I think it might be based on ignorance because our country there is nothing like that and for whatever reason we just can’t deal with it so we will keep it a secret. But I decided it doesn’t matter, it’s an illness why would I keep it a secret? Because there are other people out there who just might fall into the same trap, they don’t know, so I decided to start The Shane Project.

I got funding from the Millennium Award which comes through the MS Society. Shane was a member of the organisation. I didn’t know anything about charitable organisations. I just thought that is what I want to do. And I asked someone I knew to write the bid for me so I could get the money to start the support group. When I look back I just worked from back to front to get things right because I didn’t know. All I had in mind was that I’m going to set up a support group that people can, black people Caribbean, African Caribbeans can know about Multiple Sclerosis that it doesn’t affect just white people, it affects black people as well.

That was my aim behind it. I have worked up to the point, were now, seven years on it’s been a registered charity. It’s going quite well although getting funding can be a strain, but were getting there. Weve got two part time staff and myself, weve got trustees and were getting on alright so far, I’m quite satisfied where were at the moment and I must stress that we work very closely with the MS Society. And although we have a target group of African Caribbeans and ethnic minority people we don’t exclude anyone. We just had to target that group because that’s where the awareness was needed and the cultural support.

Does it have a local reach or is it, is it wider than that?

It’s a national reach because we have the telephone help line and we get people from up north, in Birmingham, Wales wherever they call from and we give emotional support. Sometimes when people call it’s not because they are just newly diagnosed it’s because they just need someone to talk to. Whatever race you are, if were relating to somebody who is, you just want to just offload yourself, you will just do that if you find, if you feel comfortable with the person you are speaking to, you do feel settled with them. So we have now a befriending scheme for people who are newly diagnosed We have four volunteers who they can speak to, they have the telephone helpline where they can speak to them and they both, if they’re both affected well therell be more to say so they can comfort each other in that area.

So Shane was taken ill on the 5 December 2003 and strangely enough on the 6 November I was going on a cruise so it was midnight when his breathing, his lungs collapsed, you could see it was pneumonia because I know about pneumonia, don’t even know how I know about it, however. So I called the ambulance they took him in and he was given x-rays, they help him with his breathing because his breathing was really laboured and from the time he went into hospital until he passed away I didn’t leave all the family were there, you know, and he passed away.

It was a sad time but I know I had to carry on and be strong for [name]. When it was the funeral it was, I find that, I find that really, really, really, really so burdensome. I don’t know the reason until this day why they usually take the coffin back to the house but I can tell you that was the worst thing that could ever happen to me. However, I know I had to be strong for my, for the children especially [name] and I remember when we were at the, at the internment [name] said to me, Mummy if you don’t cry I won’t cry. I said, No I won’t cry. Oh, I tell you I just wanted to die, I felt really bad. But we carried on because were a very close family.

We were sent home as I said and there was just nothing else. I didn’t know what to do or where to go. It was much later down the line that I heard about the MS Society which to this day I really think about because if I had known I could have rang them and asked them questions but I didn’t. However I was in the supermarket one day and there were these two ladies talking, now you’re not supposed to eavesdrop on peoples conversation, however I heard what they were talking about and as they separated and go to their separate aisles I decided I am going to approach one of these ladies and ask her if she has got someone with MS and she said yes her mother had passed away. I said Oh, so where are the organisations?’ and she told me about the MS Society and I contacted them. Shane became a member and we started getting information about MS but before that I just knew nothing.

The day that Shane was diagnosed I took him home, I gave him his lunch. I had to leave to go back to the restaurant. Driving there all I could think of is hes sick and I’m leaving him, he is sick and I am leaving him. The idea when I opened the restaurant was that my children are grown up I’ll just do something for me, something that I wanted to do. However I wanted to keep the restaurant for about ten years, build up the clientele sell it on and retire, that would be me.

But I could not get it out of my head that my son needs me because he is sick.

He is not going into a home and I will not have carers just coming in to look after him and then go. I need to be at home, and I made the decision that exact same day I will be selling the restaurant. I did this about 4 months later. Luckily enough it went through, and I came home and I was very content to do that. There was no way I would have stayed at the restaurant knowing that my son was here on his own, it was never going to happen, so I decided there and then.

I thought to my…where I find the strength to be brave by thinking that if they have got the condition and they’re feeling happy and content it is my duty to keep on uplifting them. And as burdened as I’ve felt and as tired as I’ve felt I decided that is the way it’s going to be and that’s the way I kept it. And I just think I was born to be a happy person. So it doesn’t matter about whatever happens, I try to create an atmosphere that will give me peace. For myself and for the people I’m caring for.

Shane deteriorated really fast that he could do absolutely nothing for himself and I started thinking the house is not suitable for him, what am I going to do. I thought I’m going to ring the council and whoever picks up the phone I’m going to explain to them my situation and ask them to direct me to whoever or wherever would be appropriate.

I rang [council name] and I was put through to social workers, I spoke to them and then I was sent a social worker just to sort out the care he would have needed. But by then I had worked, because I was actually working and looking after him I had, I already known how many hours would be appropriate for him. When she came I told her and they said, Oh, hes got to go on a waiting list. I said, That’s impossible he cannot go on a waiting list because I’m working and I need someone to be with him during the day, feed him because he can do nothing. However, he was not placed on a waiting list, I got the care that was appropriate then.

That was fine, however I thought to myself that he needed extra care Again, I overheard in the supermarket about the Independent Living Fund and I’m thinking God is really on my side. So I thought I am going to approach this lady that I don’t know and just explain my problems to her and that was what I did. With this information I was able to get extra funding to have someone come in during the day to read to him, and if he wanted to go out they would take him out in his wheelchair and put him to bed at night and for that I was grateful.

However, by 2003 he really, really deteriorated but not to the extent that he could not get out of bed because that was the routine I set for him that he would be up at 9.00 in the morning for his carers to give him personal care, have his breakfast, be fed and whatever.

Shane deteriorated really fast that he could do absolutely nothing for himself and I started thinking the house is not suitable for him, what am I going to do. I thought I’m going to ring the council and whoever picks up the phone I’m going to explain to them my situation and ask them to direct me to whoever or wherever would be appropriate.

So I rang the, I rang [council name] and I was put through to social workers, I spoke to them and then I was sent a social worker just to sort out the care he would have needed. But by then I had worked, because I was actually working and looking after him I had, I already known how many hours would be appropriate for him. When she came I told her and they said, Oh, hes got to go on a waiting list. I said, That’s impossible he cannot go on a waiting list because I’m working and I need someone to be with him during the day, feed him because he can do nothing. However, he was not placed on a waiting list. I got the care that was appropriate then.

That was fine, however I thought to myself that he needed extra care Again, I overheard in the supermarket about the Independent Living Fund and I’m thinking God is really on my side. So I thought I am going to approach this lady that I don’t know and just explain my problems to her and that was what I did. With this information I was able to get extra funding to have someone come in during the day to read to him, and if he wanted to go out they would take him out in his wheelchair and put him to bed at night and for that I was grateful.

However, by 2003 he really, really deteriorated but not to the extent that he could not get out of bed because that was the routine I set for him that he would be up at 9.00 in the morning for his carers to give him personal care, have his breakfast, be fed and whatever.

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.

In the early 1990’s I saw a behavioural pattern in my eldest son, Shane and I just couldn’t understand why after working and being so full of energy would he suddenly start going to bed at midnight and would still be asleep at 5 o’ clock in the evening. I just could not work that out. However, another pattern developed and that was not being able to walk in a straight line. He had a gait in his walk. He developed tremors in his hands and he would not admit to all this, it was happening but he just felt that he had to be independent and carried on. If he was going through the door he would, doors, he would go sideways then straight on.

I asked him to go to the doctors which he did. He was given Baclofen which was for spasticity or to slow the tremors down. However he developed more symptoms, was not able to hold his urine also not being able to walk fast enough to get to the toilet to empty his bladder.

He kept going to the doctor getting these tablets, repeatedly. After a year I decided that regardless of his age I just needed to intervene. What I did was to write a letter to the doctor telling him of the symptoms I had seen Shane had developed. He wrote back to me saying he would not be able to do anything, Shane would have to tell him himself because he was over 18. I sent another letter telling him all about the symptoms. Before he replied I made an appointment with him for myself and for Shane on the same day.