Friday 26 November 2010

DAUGHTER GOES AWAY FOR SKI SEASON

I wish I could hug and wave. If I could I would, today, hug my daughter, Abi, and wave her farewell as she heads off to Meribel, Les Trois Vallees, France, to spend six months as a resort rep and ski guide for Total Ski, part of Ski Espirit.
I have always hoped that at least one of my children would do this since we are, or were, as a family very keen skiers. We took both kids skiing every year since they were three years old. consequently they are both pretty good skiers. Abi is understandably excited, she just came and showed me her new snuggle suite in dark blue covered in red stars.
The company policy is that if an employee returns home before the end of season, for any reason, they are terminated. My job is to stay well at least until the end of April.
I really want her to enjoy this so I will do my best.
to Abi :HUGS AND WAVES FROM THE OLD MAN

Wednesday 24 November 2010

MISSION ACCOMPLISHED

I have a positive update on my blog entry about raising £100k for a project to advance finding a cure for mnd. One of my friends controls a trust that supports charitable causes and he has agreed to fund the full sum.

Friday 19 November 2010

QuI Gobulat Vincit

QUI GOBULAT VINCIT [ who gobbles wins ]
I was introduced to golf by Andrew Richardson about 25 years ago. We played Burgh Hill at 7:30am every Wednesday morning for awhile and I joined his golf society called The Turkey Club.
Well talk about " you find out who your friends are when the chips are down. "
I played several golf days with the Turkeys in the late 80's and got to know a great bunch of lads. There was Andrew and his brother, Jeremy, Alfie Searle, the Evans brothers, Kevin & Chris, Neil Spinney, Peter Wisdom [ Norman's nephew ], Matt Self, Des Daly, Harry White, Malcolm Youkee, to name those that I can recall right now. the last named, Malcolm, unfortunately died some years back in the mid 90's and it got me thinking about how nice this group of chaps were then. Malcolm was in Atkinson Morley Hospital in Wimbledon and he had had a biopsy for suspected brain tumor. The Turkeys decided to visit him to be supportive, but so as not to overcrowd him, we would pair up and visit two at a time. I paired up with Jeremy. Now my father had died about ten years earlier of a brain tumor and he had been in the same ward as Malcolm was in. I walked in with Jeremy and there was Malcolm in bed in black pyjamas with his wife, Jill, and their two young children by his bed. I was somewhat emotional because of the memories it evoked of my father and because of my feelings for Malcolm and his family. People who know me will know that when I am nervous my sense of humour kicks in. I said " Hi Malcolm, what's happening? "
He had a dressing on his forehead where the biopsy had been done. He replied, " to be honest I am pissed off because they have said I can't drive my Ferrari. "
I thought that is not the main worry but I said, " Why is that? " He said, " in case I have an epylectic fit. "
I turned to Jill and asked " do you know what to do if he has a fit in the bath? "
She looked concerned and said, " no, what? "
I said, " chuck in your washing and a packet of Persil. "
Thankfully they all laughed a lot and it broke the tension.
Malcolm survived that episode in hospital and when he came out he told me that he knew all the Turkeys had visited him in hospital but he only remembered Jeremy and I visiting because he laughed so much. Now this is so relevant in my memory because I have sincere regrets about what happened thereafter and it leads me on to my initial point regarding " you find out who your friends are when the chips are down. "
Malcolm and I became a lot closer after this as I found I could laugh and joke with him about his illness and he enjoyed that as many people can be awkward and stand offish around seriously ill folk: tell me about it.
Malcolm was an excellent financial advisor and I took him on at Goodfellows. He was still having treatment and sometimes this affected his concentration, understably. I have recently found out for myself what my former partners attitude to sick people is as when I became too ill to attend my office they cut me off without pay [ after I had loaned the company a lot of money ] and then mismanaged the business for another year before selling it , resulting in me getting nothing including any repayment of loan, to ensure they could secure jobs for themselves.
The same people insisted I tell Malcolm he had to leave and I know this upset him and Jill and that is why I didn't attend his funeral.I dIdn't want to upset Jill at the funeral. I was very fond of Malcolm and it remains one of my regrets that I did not redress that situation.
Andrew and Jeremy are partners in Christies Estate Agents in Cheam, next door to where I opened a Goodfellows office, later to become Fine & Country Homes. Over the interveening years the fact that we in direct competition and the fact that Andrew had been too busy to organize regular Turkey events we became disconnected. Until about a year ago when I was encouraged to become reaquainted with the Turkeys at Cuddington Golf Club. They made me feel as though no time had elapsed since we last met. I was blown away this week by what is now proposed by Christies, Andrew and Jeremy, and by the Turkeys.
Andrew and Kevin Evans visited me on Wednesday and said Christies will pay us an ammount of money for every completion that Christies do next year. And the Turkeys will hold a golf day at Cuddington to raise money to help Julie and I because they can't believe how we have been hung out to dry by the bastards who are my former partners. You only find out who your friends are when the chips are down, for sure. It is quite humbling, and Julie and I are most appreciative. Guess which agents we reccomend?

Thursday 18 November 2010

Happy Unchristmas

On Sunday we are having our Christmas Day, or Unchristmas as we are calling it. This is because the daughter, Abi, is going to be a resort rep in Meribel for five months including over Christmas. So we are going the whole nine yards, turkey, tree, decorations and presents. We are walking -[ not me of course ] to the pub for pool and darts, something we only do at Christmas.

Tourrettes o f the eyes

Tourettes of the eyes :
last Thursday I attended a meeting of the Surrey Motor Neurone Disease Association at the Surrey Downs Golf Club. At first my eyegaze computer was not working properly insofar as the talk function had failed. That meant I could type in but not make it talk. So the meeting started with therapists from the Croydon neuro team talking about the services they provide to mnd patients. Now my friends Liam and Pauline, fellow sufferers, were with me. One side effect of mnd is when you become emotional it is hard to control it. If you cry you really cry and if you laugh you can't stop. This particularly effects Liam. Julie and I went out to phone smartbox to see if they could help get the voice working. They did and we returned to the meeting. I had been toying with writing a poem and without meaning to my computer spoke out at a particularly inapropiate moment they following words " mnd is a laugh a minute ". Now everyone looked round and Liam burst out laughing, as did I, and Liam had to leave the meeting until he stopped. having realised the effect I had I then became mischievous. The therapists were talking about a website that offers second hand disability aids, and mentioned hoists. the previous week Pauline had emailed me and Julie an example of a standing hoist being advertised on Ebay as a SEX AID. So I made the machine say " sex aid ". Liam lost it again and had to go out. at this point Pauline decided to lay into the Croydon neuro team pointing out the shortcomings she has experienced in their service. When she had finished Liam had recovered and returned, I then voiced, " Pauline is a battle axe ", and off we went again.

Tuesday 16 November 2010

 Two Irish men looking through a catalogue. Paddy say's "look at those
 gorgeous women! The price's are reasonable too,"


 Mick agrees! "I am ordering one of them right now."


3 week's later, Paddy say's "Has your  woman turned up yet?"


"No" said Mick. "But it shouldn't be long now. Her clothes arrived yesterday"



Monday 8 November 2010


Another MND sufferer and myself have been discussing an exciting research opportunity with a leading MND specialist at Kings College Hospital. It is based on a 3 year study to try and discover a drug which can remove a protein which is believed to be the cause of motor neurone damage in 90 percent of MND cases. The research will use stem cell techniques to develop motor neurone cells from skin cells of 5 MND sufferers, including me and develop a drug which can successfully remove the protein. It is widely believed that the nature of motor neurones and the a prevailing toxic environment makes stem cell implanting is not an effective procedure, but using stem cells in the manner proposed could dramatically accelerate the discovery of an effective treatment.

However, this research needs up front funding for the 3 year period totalling £100,000. The other MND sufferer has already agreed to put £20,000 of personal funds in and I am prepared to contribute £10,000. So we need to raise at least £75k,. We have approached the MNDA and whilst they would in principle be prepared to contribute, they would not do so until the end of 2011. We all know that medical research is a slow process and we know that any success may not be soon enough for us, but the sooner we start the better and Kings could start as soon as 12 weeks after securing funds.

So to get to the point, we need funding. I am not looking for anyone to contribute personally because you have already generously donated on at least one occasion. What I would like you do is forward this email to any organisation who you think could make a contribution to the charity trust which will fund the research.

I appreciate that in the current climate, funds are tight and some of you with your own businesses know that any expenditure has to be carefully considered, but I hope that the possibility of being directly involved in curing this horrific disease will help organisations decide to contribute whatever they can.

For anyone who would like to have more details of the research before committing to making a donation, I am happy to provide documents from Professor Chris Shaw.

If you can help please email me on this address stevexjs@googlemail.com  



Sunday 7 November 2010

FINDING A CURE FOR MOTOR NEURONE DISEASE

£100K NEEDED : To fund a special research project. I recently attended a talk by a senior research professor at the MND Centre at Kings College Hospital London. In his talk he said, and put on screen, MND IS CURABLE. As you can imagine this caught my attention and my brother and I talked with the professor after the meeting. In subsequent emails it emerged that there is an opportunity to accelerate a research project that he thinks is very promising. The project will involve the employment of a phd student to be trained and dedicated to the project for 3/4 years. There will be five patients with mnd and five healthy people as a control group. Skin cells will be taken from all ten and these will be changed into stem cells.The stem cells will then, by special process , will be grown nto motor nerone cells, and these will then be treated with a variety of drugs to find one that destroys the gene responsible for deteriorating the motor neurons. This is a greatly simplified synopsis of the proposal and, whilst it offers no guarantee of success, for the professor to use the words " MND IS CURABLE " suggests to me that he believes that it is curable and that he has great hopes for this stem cell project.