ALS For support and discussion of Amyotrophic lateral sclerosis (ALS), also referred to as "Lou Gehrig's Disease." In memory of BobbyB.


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Old 12-09-2007, 10:01 AM #1
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BobbyB BobbyB is offline
In Remembrance
 
Join Date: Aug 2006
Location: North Carolina
Posts: 4,609
15 yr Member
BobbyB BobbyB is offline
In Remembrance
BobbyB's Avatar
 
Join Date: Aug 2006
Location: North Carolina
Posts: 4,609
15 yr Member
Book Bad times, good memories

Bad times, good memories
RUTH WALKER

DAD had been an engineer and used to do very physical work. Then he started getting really sore. It started off as aches and pains, then it was like pins and needles. I think he'd been feeling that way for quite a long time, but he hadn't really complained about it - he'd just got on with it.

Then he decided enough was enough; he'd better go to the doctor. They carried out all sorts of tests, and came back and told us it was motor neurone disease. He was 48. I'd never even heard of it before - I didn't know anything about it.

At first the doctors were very positive. "You're young. Most people who get motor neurone disease when they're young have it for a longer time," they said. But they were quite straight with us. "Look, this is a disease that has no cure; it will kill you." They said that the longest people live after diagnosis is about eight to ten years, but then, as he was getting more ill, that estimate got shorter. They kept saying, "Hmm, five years... no, four years" - it just got less and less. He only really lived for a year after he was diagnosed. He found out at Christmas 2005 and died at Christmas the following year.

The deterioration was so quick. I think the reason was that it started affecting his breathing. It can affect different muscles at different times. Sometimes it's speech, sometimes it's movement, but with my dad it was his breathing. It was a big blow, especially to my younger sister. Dad was so physical, and then he was just this ill man - it was very hard. It made him so weak.

But he did incredibly well. He still tried to keep active. He had a walking stick at first, then he progressed to a wheelchair, so he could go out. He still used to go to football matches - he was a big Hearts fan. And my mum tried as much as she could not to let him spend time in bed. He only went to his bed at night.

Mum became a full-time carer by around April. It was just a case of looking after him, feeding him, dressing him, stuff like that. The nurses were pretty good - they did the more horrible stuff. And Dad tried to be as independent as he possibly could. He was quite strict and wouldn't want assistance if he could do something himself. But it was distressing to see my mum looking after him as if he was a child again.

The hardest thing was that he was still so aware of what was going on. I remember when Mum told me he had this condition, the first thing I asked was, "Will he lose his mind?" - because I was picturing Alzheimer's or something like that. But his mind was active the whole time.

He remained upbeat. The nurses said they were amazed by his attitude. I think in front of us he was always positive, though I'm sure when he was with my mum or on his own, he had his down moments as well. He made jokes about things. He had this little machine that administered the morphine in his drip and he used to call it his iPod. He'd be like, "I've got my iPod on..." He tried to make light of it, which kept us going.

We tried to keep things as normal, really. I just tried to be there as much as possible, but no more than usual because he would have hated that I was on his case all the time.

When it got to the end, it was quite hard. He went into St Columba's Hospice on the Monday and died on the Saturday. He had been ill throughout October and November, and Mum had mentioned the option of the hospice, but I think Dad knew once he went in, that would be it.

I was trying to be positive. I thought, "Oh, he'll go in, they'll fix him up and he'll be back out again." But I remember going to visit him on the first day and thinking, "It's not looking good."

On the Wednesday, Mum phoned and said, "You'd better come now." It was a horrible feeling. Then it dragged out all through to the Saturday. But the staff at the hospice were great. The nurses were so straight with you and realistic, and they knew when to take a step back and when to be there. I'm so glad that's where he was at the end.

At first - and I remember Mum saying this to me as well - it felt as though he'd just gone away for a while, because he used to work away quite a lot. So we kept thinking, "He'll be coming back." But he's not.

The first Christmas was a hard, hard time. Then I threw myself into work. Now I'm just trying to get on with my life and do my best. He'd have hated to think of me brooding and being miserable.

The whole family's coming to my house for Christmas this year. And we decided not to mark the day he died. We all went out on his birthday in August - it would have been his 50th - and we just let December 2 go by. We'd rather celebrate his birthday and remember the good times.

• For information or to make a donation, contact the Scottish Motor Neurone Disease Association at www.scotmnd.org.uk. Support for carers can be found at The Princess Royal Trust for Carers, www.carers.org

http://living.scotsman.com/people.cfm?id=1906322007
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