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Motor Neurone Disease (MND)

Stuart - Interview 05

Age at interview: 62
Age at diagnosis: 53
Brief Outline: Stuart first noticed symptoms (legs shaking) almost 20 years ago. MND diagnosed 9 years ago (1997), after years of tests and investigations. Now uses a wheelchair.
Background: Stuart is a retired electrician, married with 3 grown-up children. Ethnic background/nationality' White British.

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Stuart started noticing symptoms almost 20 years ago. When driving, his leg would start shaking and he would to move his leg around till it stopped. This happened on and off for some time. Two years later he got his foot caught in a ladder at work and he fell. He had great difficulty walking after that, and has been unable to work as an electrician since. Then about 15 years ago he started tripping and falling, and was sent for tests as a hospital in-patient. The consultant neurologist told him there was nothing wrong and he did not want to see him again.

He asked his GP to refer him elsewhere, and he had many appointments and tests. Eventually nine years ago he was diagnosed with MND - for him the relief of a diagnosis was so great that he burst out laughing. His GP, who gave him the diagnosis, said he might live for 5 or 6 years, but his consultant said he might only have months to live. Inspired by Stephen Hawking to keep his mind active, he has put his energies into a series of writing and local history projects, and runs a help page on a local community website.

Stuart feels they have had to fight for equipment and respite care, and his wife has had to cope with a lot on her own. He saw other people going through similar struggles when he was active in his local MND Association branch. More support needs to be provided for people at the right time and it should not be left to voluntary organisations to fill the gaps. He feels most clinical staff are excellent, for example when he spent time in a neurological rehab ward while his wife had a knee operation, but they don't always have the facilities and funding to do their job properly.

Two years ago Stuart developed diabetes. The hospital care when he was admitted for this was poor at times, and staff did not seem well prepared for caring for someone with MND. He was particularly unhappy with the way staff would take his personal wheelchair away from his bed without permission and use it for other patients around the hospital. 

His condition has worsened steadily, so he finds it difficult to get out in his wheelchair as much as he used to. The MND Association has provided him with a Lightwriter which he finds easy to use, and he jokes about the American accent. Stuart feels he has a full and happy life and is content with his life now. He chose not to take riluzole, and has no pain from MND. His message to others is that the diagnosis doesn't mean your life has ended. 'You can make motor neurone disease live with you, and not the other way round.' 'If you lose the ability to do one thing, think about another you can do.'

 

He was so relieved at finally getting a diagnosis that he laughed. He was told he would not live...

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The neurologist I was under, we went back to his clinic and from everything being rosy. I'll never forget his words, he said, 'I don't know what's wrong with you and I don't want to see you again.' Ordered me to get dressed and to leave his consulting rooms and that was the biggest shock of all. He was rude and impolite, is not a strong enough way of putting it. So we asked our GP if I could go somewhere else for a second opinion. And I ended up traveling up to London for the best part of two years. I was going up every six weeks and I had a five day stay for tests to be carried out in the November of 1996. And I had another five day stay in the September of 1997 and that stay started on the Monday after Princess Diana was killed in Paris on the Saturday. I came home, I wasn't told about the results.

About ten days later we went and saw our own GP and he told me I had motor neurone disease. The relief at that time, because this had been going on from 1989, since I fell off the ladder. The relief of knowing what I had to face was so great I burst out laughing. I didn't think then how I was going to tell my mother, or other members of the family. Well a couple of weeks later in the October, I had to go back to London and be told officially. Our own GP had said I could look forward to maybe five or seven years maximum. I said that to the neurologist and he said, 'I wish I could guarantee you six months but I can't guarantee you three.' So it was a case of proving somebody wrong. 

My immediate thoughts then were of Professor Stephen Hawking. I knew about motor neurone disease before I was diagnosed. I knew the implications and I knew about the progress of Stephen Hawking and my immediate thought was he lived with it or motor neurone has lived with him, because he's put his training to good use and he's still alive today. I haven't got his brain power but I can put my brain to work on other things. They don't have to be hard in the sense of learning new technologies or anything like that. I learnt the Net. I wrote my life story for my grandchildren because I didn't think I'd be alive today.

 

The MND Association provided a voice amplifier and a Lightwriter so he could talk to his mother...

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Okay, I just want to ask you about the lightwriter. You use a LightWriter sometimes do you?

Mainly when I'm with my mother. Mum, God bless her, is now in her 91st, or she is 91 and she'll be 92 next January. She's deaf and she's been deaf for a long time so I was provided with a Lightwriter by the MND Association to make it easier for me to have conversations with my mother. I can't goin to details on camera. I'll talk to you about my mother afterwards.

Okay. And what's it like using the light writer?

I find it fairly easy, straightforward. It's a qwerty keyboard and you type in what you say and you hit the button and then it speaks for you. It's also got a narrow screen where you can see what you're typing and the person sitting opposite can also read what you're typing because it's a double sided screen. Although it's only about that wide and approximately that long. It's a very good aid. Unfortunately, again, they're very difficult to get hold of through social services and the NHS. 

I had, I do have a voice amplifier. I do use it if I'm in a crowd because my voice isn't strong enough and basically it's a little amplifier, a 9v battery and a microphone and I can shout as loud as I want to [laughs].

Where did you get that from?

The MNDA and that will be going back shortly, if it hasn't already gone back.

Did you try to get one through the social services, or the health services?

No, that was all from the - again because of my mother being deaf. It worked for a little while but soon, well, Mum she had a month, quite quickly. So we needed something else and that might turn out to be the answer. The only problem with them, the one I've got has an American accent. I've got a favourite joke when I'm out, I programme it to say when I'm in my power chair, 'I am a nude Dalek.' [laughs]. Sometimes it goes down well, other times people think I'm mad. But they are entitled to their opinions, and so long as at the end of the day no-one is offended, I am happy.

 

He advises people to 'make MND live with you, not the other way round'. He describes simple...

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When you're given bad news, it doesn't mean your life has ended. It's the beginning of a new adventure. Make motor neurone disease live with you, and not the other way round. I don't give in to it. If I feel my hands or any of my limbs stiffening or cramping up, you see people all paralysed and their hands, what am I going to do it that way, I'll do it that way. I force my body to move again and give my hands simple exercises. I had to go on to a Nippy for my breathing overnight some time ago. 

I didn't realise how bad my lung functions had gone until I went on to it. I do do simple breathing exercises a couple of times a day. Nothing too strenuous. I generally lean forward on to a table or if I'm in my wheelchair, on the arms in that position and I do up to a maximum of ten deep inhalations each session. But don't overdo any exercise because it makes you tired and when you're tired you feel worse. Keep the exercises simple but regular.

 

He thinks it's important for people to know MND is not painful. All he gets is the odd muscle cramp.

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And perhaps it's worth noting, I can't speak for other people with the disease, I can only speak for myself, apart from the odd, very rare muscle spasm and cramp, I get no pain whatsoever caused from, as a direct result of having motor neurone disease. Don't believe all you read in the press or what you hear on the television and radio is all hype, and it's put out by people who know nothing at all about motor neurone disease. I may be proved wrong in the future. At the moment, after I've been living with it for nearly nine years, or it living with me for nearly nine years. I can honestly say I do not get any pain, physical pain from the motor neurone.

 
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When he was in hospital for his diabetes, staff didn't understand his medication, and kept taking...

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I ended up in a situation over my medication where I was having arguments every day over the medication and the dosage which wasn't doing me any good. If they'd said, 'You can't have that because of the diabetes', I would have accepted that argument, but that never came into the equation. Handling of patients, they weren't really up to it because they didn't have the right equipment on the ward. Apart from that, the staff, the nurses, when you compare them in the hospital when I was in the rehab ward, as different as chalk and cheese. In the rehab ward they couldn't do enough for me, which made me want to do more for myself, to try and help them. 

When I was in [hospital treating his diabetes] it was nothing for a nurse to come and take my wheelchair to move another patient to another part of the hospital, and even though my wheelchair had labels all over it saying it was my property or in my care, they never once asked and there was arguments with staff over that. Not only with staff, it caused bad feeling between other patients and myself, because they thought I was being selfish. But it's not that, if my chair did not come back to me, then I had a bill of approximately '200 to pay, which is a lot of money for people in our circumstances. But you couldn't get the staff to understand that. And instead of saying, "Do you mind if we borrow your chair for an hour?" they'd take it. To me if they'd asked, I would have said yes, I would never say no. But they'd just take it without permission. That not only was, in my way of thinking, extremely rude, but also I thought it could be construed as theft. And one male nurse, I threatened him with police action unless he spoke to me first and stopped taking it out as and when he wanted to. It seemed easier to take a chair from the end of my bed, on the side of my bed, than getting one out of the room further down at the end of the ward. And I found it very, very annoying and upsetting because it was constant.

 
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The professional staff are fantastic but they sometimes don't have the facilities to do their job...

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The health service have now reached the stage where the medical care staff, doctors, nurses, are doing a fantastic job but they haven't got the facilities to do that job. We get appointments sent to us, and then a telephone call saying, 'Oh they've made a mistake.' So we phone the consultant's office to find what date he wants to see me because the staff concerned are getting it wrong. We shouldn't have to do that. And the question is there have been millions of pounds funding the health service by this Government, where has that money gone and what has it been used for? Because I can only speak about Wales, the big movement in health care in Wales at the moment is the closure of hospitals. Now that is never a good thing. It means people have to travel further for their care. It also means a lack of visitors when they are in hospital because people can't travel' People are having to try and find transport to a hospital, not only to visit loved ones, but for treatment and to attend clinics as well. Now I know from my own experience how tiring it can be when you're not fit. It used to take us an average of five hours to travel from here to the hospital in London. We'd be in the hospital two and a half three hours and then we've got a five hour journey home. Now, although I was grateful for the fact that that facility was provided, and the transport was also provided, I must say that, and I'm very grateful for that. But when you know Wales as well as I do, and know the road structure in Wales and know the length of time it takes to get from major town to major town, then it is not on to close local hospitals and force people in to long road journeys. Very often there is not an ambulance service in most of these areas, there's not a train service. They're forced then to use their car. When they arrive in these hospitals, they've got to pay to park.

 
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He has taken up writing, art, local history and running a community website. He's writing his...

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In between writing my life story, I started watercolour painting. Not very good but it was a pastime. I've since progressed to writing various articles on local history and the project I'm working on now is a complete, I'll start again, is a list of shipwrecks along the old county of Glamorgan coastline, that extends from just the other side of Gower peninsula, just to the east of Cardiff. And the earliest wreck I've been able to find on record is dated 1737. 

I also run a help page on our local web site. It's the type of page for anybody wanting information about the town or the surrounding area. I help them in that respect. I also try to reunite old friends and families. People who've moved away trying to get back in touch with friends back here. So I don't get many requests, maybe half a dozen a year, but through it I know have contacts all around the world, which gives me a lot of pleasure and I'm sure by the reaction and the thanks I've had that the people I've been able to help are more than satisfied with the service I am able to provide. Basically that is what I do with my time.

If you lose the ability to do one thing, think about another that you can do. I now produce electronic art through my computer. Not only does it amuse me when I make mistakes but I get great enjoyment out of it. Think about writing your life story for any grandchildren. Or if you have young children, and I hope nobody takes offence at what I'm saying, think about your own children and put them in a position where they can pick up something that will teach them about your own life and your background. Unfortunately I lost my father when I was fourteen. I knew very little about his background and I'd not been able to find out as much as I would like to know about his childhood and his upbringing. I know about his adult life but not about his childhood. 

Don't leave your children or your grandchildren in that situation. Try and cater for them. If you can't write it yourself, get a friend or a family member to make notes of what you say and it doesn't need to be in any special type of book, an ordinary writing pad will do, so long as you get it down on paper. Or if you are able to use a computer, write it on your computer and copy it on to a disk. So your children or grandchildren will know something of you and the life you had. That is very important to the way children react later in life. Don't give up. It's not worth giving up.

 

He misses going out in the countryside, but now sitting by his window he enjoys seeing things...

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I used to go around the lanes, do a four or five miles circuit one day, next day, maybe up to about four miles, maybe a bit further. I've lived in the countryside all my life and I love the countryside and I miss getting out. After saying that, I've learnt to think differently. I see things through a different set of eyes. I am in a position where I can look out of the window and see something new every day, something that most ordinary people, by that I mean, people who are fit and well, well enough to get out and about. They are unable to observe the small changes that I see and I'm lucky in as much as I can see these changes. 

As an example, two years ago I watched a pair of sparrows, they were coming in to the garden from early spring. They ended up with three young and just by watching them I could tell each bird, by the different variations in the markings. If you think about a sparrow and you think they're one colour or one set of colours but there's variations in those colours that are particular to each individual bird. And this is the same with blackbirds and starlings, you name the bird and after a day or two, you could see one by the other each day, after two days, I will be able to tell you which is which, without needing to have any special markings.

 
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Demand for hospice places in his area is so high he was told they could not offer respite care to...

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On the medical side, the only hospital in the area offering respite care had the ward shut. So that no longer offers respite care. There are several homes, charity based, mainly for cancer. Because of the weight they've had put on them for care, because of NHS cutbacks in Wales as a whole, they've stopped taking patients with MND and other diseases because they can't afford to do it any more. They're not getting any funding off the NHS. The NHS isn't providing care, respite or palliative, and these charities have been put on to such an extent that they've been forced to close their doors. Now I know that is the case because when my wife went in for an operation on her knee, a very good friend arranged for me to go on to a neurological rehab ward in a hospital in [city]. But attempts had been made to get me in to a cancer home in [town]. By that I mean the MND Association have used that home on a regular basis with our members who need that type of care. And the request was turned down because of [being] overloaded and lack of funds. I put myself in a rehab ward where I managed to do a bit of good helping people worse than myself. I could turn pages of a newspaper for them, magazines.

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