If have been nagged by one of my brothers to write more positively on my blog. So here goes. I am sustained by my family and friends who make living with mnd just bearable and without them it wouldn't be. My wife, Julie, is very caring and she has worked wonders in looking after me. Having said that she nearly killed me last week. We were at the golf club and she put my neck support on which I have on to help me raise my head when I am drinking with a straw. Julie was chatting with Debs, the Swetty Sock bar manager. Now they are apparently used to me making some noises, like coughing or similar. The neck support was so tight I was unable to breathe. As I gasped and turned blue so they noticed and Julie immediately released the neck support. They were pissing themselves laughing. I know it's dark humour perhaps but I saw the funny side.
I got her back a few days later when we were at the golf club again. A visiting Rotary Club was in the bar when we came in. One of the gents watched as Julie brought me in, she took off my coat and blanket, and held my drink as I sucked the straw. He said Arn't you nice to him? "
I typed in and played at high volume " she pretends to be nice when we are in public, but when we get home she slaps me about "
My son, Ben, is 26. He is working up at the Barbican in Central London as a recruitment consultant. He was the first to join after it was started by the owner Jamie. They specialise in high level banking appointments particularly in risk management. He is doing well. Ben is also a talented musician and can play drums, guitar, piano and sing. He was trained at ACM The Academy Of Contemporary Music in Guildford. He plays drums in two bands currently, one called the Brass Kats, and the new one called Circles. Ben currently lives in a log cabin in our garden with his girlfriend, Amy, and two cats, Annie and a terror kitten called Millie.
My daughter, Abi, is 22, and is halfway through a ski season in Meribel. She is having a whale of a time and whilst I miss her, we email regularly and she speaks to Julie most days so I am kept up to date. I would rather she be there having fun than be bored at home and she deserves it having got a First Degree in History at Warwick, followed by a Merit in her Masters degree at Kings College London.
Abi has a new boyfriend called Tom whom she met two months before going out to the Alps for her ski repping in Meribel. Tom visited her las18/02/2011 t week and they still get along fine. I have my concerns, he is an Arsenal fan.
My family are all supportive in their own way. My son takes me to most Chelsea home games. Abi, when here fusses to make sure I am ok and entertained. My sister Christine visits when she can but she did her bit 48 years ago when she married Michael, my brother -in-law and life long Chelsea fan who interested me aged 4 in football and The Blues. My brother Rob is a scientist and he has been available to help with research in various advances in the search for a cure for mnd.
Brother Alan has been very helpful in a practical sense He designed and helped build the ramp from the drive to our front door so I could access the house in my wheelchair. also, when my arms stopped working meaning I couldn't hold a glass or cup, designed a velcro solution. He also made a tray for my wheelchair.
Friends :earlier in my blog I wrote a piece called Qui Gobulat Vincit, in which I said " you only find out who your friends are when the chips are down. That is certainly true. I have been blessed with friends who have surprised me with the levels of support and care they have shown. Brian [Grandad] Lawrence has been a rock of support from the time I was first diagnosed. He visits regularly and he project managed the building work to our house free of charge to enable the alterations to accomodate a raspberry ripple. He also has helped in raising funds for my eyegaze computer, my wheelchair headrest control, which is paid for but I still await delivery, and he was helpful in getting £100k for stem cell research to find a cure for mnd. In this respect Grant Needham has been brilliant. He agreed to help when asked by Brian and Grant looks after a trust fund that donates to charitable causes that he feels are appropriate.
Tony Williams, former Captain of Cuddington Golf Club and he was captain when I first became ill, put himself out to run Julie and I up to Harley Street or Kings College Hospital in his Lexus and nothing was too much trouble and he wouldn't take any money for petrol or parking. Bernard Cullen and Tony Butler were Captains of Royal Mid Surrey Golf Club and Cuddington Golf Club respectively and both made the Motor Neurone Disease Association their club charities last year raising over £50,000 between them. It seems few wish me to pop my clogs yet awhile even though Graham Leaper used to say " the only good estate agent is a dead one. "
Julie used to play golf at Cuddington too, and the Ladies Captain this year, Mary Young, is making her charity the MNDA.
I have previously mentioned that Andrew Richardson is doing a lot to help along with Christies Estate Agents and The Turkey Club by arranging golf days.
Along with Brian /Grandad Dave Shave and Tony Sparkes come round every Tuesday to spend a few hours with me when we have a chat, I tell a few jokes, and we watch a film. Primarily this is to give Julie a break and a chance to spend some time with the other Cuddington Babes. Last week Tony had taken up smoking again after giving up for over 10 years. While Tony was out having a puff Dave asked me to have a word with him "As he might listen to you. " I typed out and played my reply " Dave, I don't see why he would heed what I say, I gave up smoking about fifteen years ago and look at the state of me. Dave Shave cut my hair this week, he used to be a hairdresser, and after he finished cutting he said " Do you want anything on it? " I answered " Yes, a pair of knickers, you have made me look like a right c***".
I used to eat in the Regional Thai Taste in Cheam and Andrew Richardson told the owner of my illness and how my business was run down and sold, her name is Chim. She came to see me last week and told me she will run the London Marathon and get sponsorship to support the cause.
Our old friends Sue and John Edwick amazed me at Christmas. They are not wealthy people but they gave us a high spec laptop computer because Julie was having to spend a lot of time in a different room to me and they understood how difficult that was for us. This is particularly kind as both of them have been very ill of late and still are.
I have a lot of support and encouragement from so many people both at the golf club and elsewhere, all I can say is a BIG THANK YOU.