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Norma

Age at interview: 70
Brief Outline: Norma’s eldest son was diagnosed with primary progressive MS in 1990 and she cared for him until his death in 2003. She now cares for her youngest son, who was diagnosed with relapsing-remitting MS in 2003. Norma founded the charity, Shane’s Project, which provides support for carers and people with MS.
Background: Norma, age 70, is a retired restaurateur. She is Black/Caribbean, divorced, with five children.

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In 1990 Norma first noticed behavioural changes in her son, Shane’s behaviour. After usually being very energetic he suddenly became lethargic and would sleep for long hours at a time. He developed a gait whilst walking and tremors in his hands. Norma was keen for Shane to seek medical help but he was reluctant at first and tried to continue as normal. 

When Shane did eventually seek medical help he was diagnosed with spasticity and prescribed Baclofen to stop his tremors, but this was ineffective and caused unwanted side effects. Normal felt very distressed and frustrated that a diagnosis could not be provided. After two years of on-going tests and GP visits Shane was referred to a neurologist and after an MRI scan, he was eventually diagnosed with primary progressive MS. 

Norma describes the feelings of confusion and burden she felt. After the diagnosis she was surprised at how happy Shane appeared to be. He explained that he felt relieved that he finally knew what the problem was; it was the not knowing which scared him. After the diagnosis Norma felt at a loss because they were given very little information about MS and where to find support. She found out about the MS society and the Independent Living Fund by overhearing conversations by chance. 

As Shane’s condition deteriorated, his tremors became worse and he had trouble swallowing. They contacted social services for help. When they were told help was not available Norma had to be assertive to ensure they got the help they needed. They also used the Independent Living Fund to pay for someone to read to Shane and take him out. Occasionally, respite care was arranged, but Norma still visited to help care, as she could not relax and felt happier doing this.

In August 2003 Norma’s youngest son started to display similar symptoms as Shane did in 1990; becoming fatigued and sleeping long hours. Norma began to worry, and insisted the GP referred him to a specialist. In November 2003, he was diagnosed with relapsing-remitting MS. Around this time Shane’s condition worsened when his lungs collapsed and he developed pneumonia. He was admitted to hospital, his breathing was laboured and he passed away in December 2003, with his family around him. Norma felt utter despair but stayed strong to support her younger son and the family. 

After his diagnosis Norma’s youngest son moved in with her so she could care for him. His condition has largely remained stable with only two relapses in eight years. He receives funding to pay for a support worker to take him swimming, shopping and to physiotherapy. Overall, Norma is satisfied with the level of care he receives.

Norma is very proud of her sons and has always been open and honest about their MS. After Shane’s diagnosis, Norma found there was very little awareness of MS within her local black community. She recognised this was a problem and started the charity, The Shane Project, which provides support and increases awareness of MS within black Afro Caribbean communities. The Shane Project has been running for seven years and has grown to reach many different communities across the UK. 

Norma describes caring for her sons as a privilege. She has remained strong throughout and describes how she finds strength from her sons and their attitude to accept the condition. Norma encourages others to come to terms with and accept MS, because then coping becomes easier.
 

Norma felt that she had to intervene by talking to her son’s GP about his symptoms, which included difficulties walking and getting to the toilet in time.

Norma felt that she had to intervene by talking to her son’s GP about his symptoms, which included difficulties walking and getting to the toilet in time.

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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. 
 

Norma’s son was relieved to know what was wrong. She was very upset but his acceptance of the diagnosis helped her feel less burdened by it.

Norma’s son was relieved to know what was wrong. She was very upset but his acceptance of the diagnosis helped her feel less burdened by it.

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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 she’s in the ladies’ and his reply was ‘No she’s not, she’s 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.
 

Norma found out about the MS Society by overhearing a conversation in a supermarket. She has become a very active member of the Society.

Norma found out about the MS Society by overhearing a conversation in a supermarket. She has become a very active member of the Society.

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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 people’s 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. 
 

Norma couldn’t face the thought of leaving her son at home ill while she was working. On the day he was diagnosed she decided to sell her restaurant.

Norma couldn’t face the thought of leaving her son at home ill while she was working. On the day he was diagnosed she decided to sell her restaurant.

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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 he’s 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.
 

Norma thinks she was born to be a happy person. Both her sons’ were diagnosed with MS but their acceptance of their condition helped her, however burdened she felt, to ‘keep on uplifting them.’

Norma thinks she was born to be a happy person. Both her sons’ were diagnosed with MS but their acceptance of their condition helped her, however burdened she felt, to ‘keep on uplifting them.’

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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.
 

Norma was determined to get appropriate care for her son when his condition got worse more quickly than expected.

Norma was determined to get appropriate care for her son when his condition got worse more quickly than expected.

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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, he’s 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.
 

Norma received funding from the Independent Living Fund to enable someone to come during the day to read to her son or take him out.

Norma received funding from the Independent Living Fund to enable someone to come during the day to read to her son or take him out.

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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, he’s 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.
 

Norma says that she felt so bad when her son died that she wanted to die but she had to carry on and be strong to support her other son.

Norma says that she felt so bad when her son died that she wanted to die but she had to carry on and be strong to support her other son.

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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 we’re a very close family. 
 

Norma was worried that her son’s symptoms weren’t getting any better and that he didn’t have a diagnosis. With some effort, she persuaded his GP to talk to her about her concerns.

Norma was worried that her son’s symptoms weren’t getting any better and that he didn’t have a diagnosis. With some effort, she persuaded his GP to talk to her about her concerns.

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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. 
 

Working closely with the MS Society, Norma set up a support group to combat the secrecy and stigma about MS which she saw in the black community.

Working closely with the MS Society, Norma set up a support group to combat the secrecy and stigma about MS which she saw in the black community.

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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, we’re now, seven years on it’s been a registered charity. It’s going quite well although getting funding can be a strain, but we’re getting there. We’ve got two part time staff and myself, we’ve got trustees and we’re getting on alright so far, I’m quite satisfied where we’re 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 we’re 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 there’ll be more to say so they can comfort each other in that area.
 

Norma was reassured by her children that they would support their brother if she should die: ‘Everything will be done for him’, they said, ‘It just won’t be you doing it.’

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Norma was reassured by her children that they would support their brother if she should die: ‘Everything will be done for him’, they said, ‘It just won’t be you doing it.’

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We know he’s got MS and we all know what it is different areas where it could lead to but we just carry on because all we can do is to make him happy and the rest of the family supportive. What I do think about is myself getting older and older and older and I know that things could happen and I might not be able to look after him, that I talk to the children about and they, like my daughter will say to me, ‘Mummy, when you pass away or when you get older and cannot carry on everything will be done, you just won’t be the one who is doing it.’ So I’m content, I’m content that my [name] will be fine.
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