Stuart - Interview 05
More about me...
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...
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...
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...
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.
When he was in hospital for his diabetes, staff didn't understand his medication, and kept taking...
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.
The professional staff are fantastic but they sometimes don't have the facilities to do their job...
He has taken up writing, art, local history and running a community website. He's writing his...
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...
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.