PERSPECTIVE

the mayonaise jar and golf balls story

a lecturer was standing in front of his class of students holding up a large, empty mayonaise jar. On his desk were a number of golf balls. he placed them in the jar until no more would fit and said to the class " is the jar full? "
The students nodded and some said " yes. "
The lecturer then took a paper bag from his desk drawer and poured the contents, small pebbles, into the jar, shaking it so the pebbles filled the gaps amongst the golf balls. He then said " now is it full? "
Some students laughed and they nodded and agreed it was now full.
The lecturer then took another bag from his desk drawer and poured the contents, fine sand, into the jar amongst the pebbles and golf balls shaking the jar to make sure the gaps were filled. Then he said again " is the jar full now? "
The students were all laughing now, and nodding, as the lecturer reached under the desk and brought out a cup of coffee which he then poured into the jar whereupon it sank into the sand.
The students were in fits.
When things settled down the lecturer said " the mayonaise jar represents your life. It's up to you how you fill it. The golf balls represent the most important things or people, your home and close relatives and best friends. the pebbles are other things that are important to you, like hobbies and other people you like or maybe your work. The sand represents everything else that gets in the way and stops you spending enough time with or on the important people in your life or the things you want to do. if you don't prioritise you will not get the balance right. If I had put the sand in first the pebbles would not have fitted, never mind the golf balls.
One student said " what about the coffee? "
The lecturer said " that says no matter how busy or full your life is, you must always make time for a coffee with your close friends. "

Apologies!

I, Abi, would just like to make a formal apology to all those who have been recently disappointed by the lack of new posts on this, my dad's surprisingly and happily popular, blog.

I have been keeping his password hostage. And being a bad editor in general.

I will now give my poor and password-deprived dad what he needs, so you can now look forward to some new gems and pearls of wisdom. Or, most probably, a crude joke. You know what my dad is like.

Abi

x

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

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.

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?

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.

 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"

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  

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.

TALK ABOUT BIG HEADS

How sweet. My son, Ben and his lovely girlfriend, Amy, had their photograph displayed on the National Theatre by the Thames as part of a corporate promotion. I am not saying they are big heads, but their heads were quite large on the side of that building.

How can one man be so hunky?

(What happens when you give your daughter your password)

BLIND DATE

I went on a blind date last night. I ended up with a bruised head, grazed knees and a broken arm. The bitch stood me up.

HOW TO GET A BETTER HOTEL ROOM AT DISNEYWORLD

HOW TO GET A HOTEL ROOM UPGRADE

a few years ago we took our kids to Florida on a two centre holiday. The first centre was near the Space Centre at Cape Canaverral. Once we had done the Space Centre we found there was not much else to do and we had several days to go before we could go on to St Pete's. So we went into a local Disney store and used a central hotel reservations phone as we had decided to have a few days at Disneyworld. Now I didn't know one Disney hotel from another and we booked the All Star Sports hotel. When we arrived in Orlando and found the hotel at Disneyworld we were not impressed. There were a number of very large people with drinks in hats and long straws into their mouths. They were all Rosanne family lookalikes. We decided it wasn't for us. So I picked up the hotel reservations phone in reception and an American lady's voice said "can I help you?" I explained that we hadn't appreciated what the All Star Sports was like and asked if we could upgrade to another hotel. She said " I'm sorry sir, but all the Disney hotels are fully booked at this time "
I said, "if I am completely honest with you, will you be completely honest with me? ".
She replied, " I am always honest with everbody sir. "
I said, in that case we are going to get along fine. Be honest when I ask you, if Bill and Hilary Clinton turned up unexpectedly today, would you be able to find them a room in a hotel better than the All Star Sports hotel? "
She was quiet for a moment, then said, " well ok, I suppose we would. "
I then said, " well to the best of my knowledge, they ain't coming, so can we have that room? "
She cracked up laughing and found us a very nice room in the Dolphin hotel.

THE MAN OF THE HOUSE

The husband had just finished reading a new book entitled, YOU CAN BE THE MAN OF YOUR HOUSE He stormed to his wife in the kitchen and announced, 'From now on, you need to know that I am the man of this house and my word is Law. You will prepare me a gourmet meal tonight, and when I'm finished eating my meal, youwill serve me a sumptuous dessert. After dinner, you are going to go upstairs with me and we will have the kind of sex that I want. Afterwards, you are going to draw me a bath so I can relax. You will wash my back and towel me dry and bring me my robe. Then, you will massage my feet and hands... Then tomorrow, guess who's going to dress Me and comb my hair?
Without even looking up from her morning paper the wife replied, the feckin' funeral director would be my first guess.'

more Liverpool

apparently John W Henry, who now owns Liverpool FC, and also owns Boston Red Sox, is considering changing the football club's name to the Hubcap Stealers.

Disabled Toilets

It occurred to me that the funny thing about disabled toilets is they are the only ones big enough to run about in.

Liverpool -18th October 2010

I heard on the radio that at John Lennon Airport below the sign "Above
us only sky " someone has written "Below us only West Ham " !!

I heard a travel report:All trains to Liverpool have been cancelled until further notice. Something to do with a points problem.

Dance Options Allstars Competition

Last night I accompanied my wife and daughter to a dance exhibition at Dance Options in Cheam. This is where some of the couples on Strictly Come Dancing do their training. In fact Gavin Henson was there. This is something I would not have attended in my former life, but I actually really enjoyed it.

I enjoyed the expertise, athletisism and creativity of the couples dancing, who were mainly amateur national champions from around Europe. It is surprising the things you see that you might not have if it wasn't for having mnd. No consolation but an observation that could be taken as a positive?

POSITIVITY

I wrote an update about evening out at a dance exhibition in which i  made reference to the fact that before i had galoping death rot and sent it to my daughter who normally posts my updates . she came to me and complained that it wasn't very positive . i thought it was considering it was in a week that i had to give up eating and drinking . if anyone can say something positive about having motor neurone disease please let me know .

Chelsea v Arsenal? Oh, I remember something about that...

I went last weekend with my son, Ben, to watch Chelsea beat Arsenal two nil. We saw our cartoon friends Womble and Beaker there too. That was a great sports weekend with the Ryder Cup as well, and the fact that it went over to the Monday suited me as it gave me something to watch on Monday, and we would have missed the nail biting conclusion on Sunday when at football.

The World's Shortest Poem

FLEAS

Adam,
Had em.

Brighton

This weekend just gone, I went to Brighton with my wife, Julie, my daughter, Abi, and my son and his girlfriend, Ben and Amy. We went on the pier, which is great fun but if you are in a wheelchair can be a bit bumpy and a head rattler.

I enjoyed it immensely even though I couldn't participate in the dolphin derby, the rollercoaster rides or the dancing machine. I was more than happy to be a spectator on those. On Sunday we were visited, for the first time, by Amy's parents, Terry and Jo. Amy is Ben's girlfriend. Hmm, meeting the parents, is this telling me something? Actually they were very nice, as is Amy, so I am not worried.

This weekend was not a good sports one as there were no premiership football matches and no major golf tournaments. I had fun anyway:someone once said "life is not a spectator sport ". Well as a raspberry, in a wheelchair, unable to use my hands, or talk, eat or drink, it certainly is a spectator sport.

Mystery Solved

I finally got an answer to my frequently asked question :how has Stephen Hawking managed to survive into his sixties in spite of his being completely paralysed and he was first diagnosed in his twenties?

I went to Kings and saw Julia Johnston  and Dr Burnham. Between them the answer was : after he nearly died of pneumonia some years ago, Hawking realised that people don't die of MND, but of ilnesses they are vulnerable to because of MND. such as chest infections leading to pneumonia. Chest inflection is risked by a person with MND eating and drinking when the muscles which control the swallow are weakened. He therefore cut out all risks and went nil by mouth, and takes all nutrition and fluids through a tube into his stomach  [PEG]. The advice is that I do likewise, but have little tastes of things I like.

The other thing Hawking did was have a trachioctomy to enable a breathing machine to help when his chest muscles gave up, but Dr Burnham said I should be ok for a long time with a breathing aid that is non invasive at night ,and as and when required when I am resting.

Dr Burnham is in Professor Shaw and Al Chelabi's team, and when I said from my conversations with him I was confident there will be a cure within ten years she was fairly positive about that, saying they are making great strides in that direction. The way I see it, it's worth me adopting that regime of very little by mouth to try and hang in for the long term. If I can stand life without talking, eating and drinking, that is.

An Ode to Swetty

Debbie is a swetty sock

she manages the bar.

The punters all love to mock,

but they mustn't go too far.

When swetty kisses me,

she rests her tits on my arm,

it does fill me with glee,

and doesn't do me any harm.

She used to call me super G,

but now she gives me a kiss;

So does Sparksy and it occurs to me,

that they are always pissed.

The thing that baffles me the most,

is why a raspberry is still seen as so hunky;

and I don't want to seem to boast,

but the rest of you must look like monkeys.

Now into the bar come Boggin and Andy,

and swetty serves them with a snarl.

She is full of cheer sweetness and candy,

but to get to know her takes awhile.

So as my ditty draws to a close,

I must say something scottish and clean:

'lang May your lum reek' is what I chose,

to show that I'm not mean.

My Speech

The Captain of Cuddington golf club has made his charity for the year the Motor Neurone Disease Association. In addition, Bernard Cullen, who is captain of Royal Mid Surrey golf club in Richmond has also made his charity the MNDA this. Between them they have so far raised, I believe, about £45 000.

Last evening Julie and I attended a dinner at Royal Mid Surrey held for the handing over of the cheque to the mnda representatives. After the dinner I gave a speech to around 150 people using my eyegaze smartbox computer. After this several people approached me and said how much they enjoyed it. One of Bernard's friends came and said he had Parkinsons Disease and that he found the speech "inspirational. I say this not to blow my trumpet but to show how the charitable contributions have helped me and others.

My speech :

'Ladies and gentleman, last time I was here I was unable to speak, except in quiet garbled noises, quite similar to how paddy cullen sounded on charity day, not undestandable to people other than my wife, son and daughter. I used to enjoy standing up and speaking at golf club events and I have to admit I was better known for my joke telling than my golf. in fact I was once asked to do an after dinner jokes speaking engagement at an old folks home. They all had Alzheimers. I told a joke and they all laughed. So I tried it again. They cracked up again so I told it fifteen times and received a standing ovation. as I was leaving an old boy came up to me and said, I don't know how you remember them all.

To be serious for a moment, last evening at my golf club, a friend asked me if I experience any pain with this illness. I answered, no, just discomfort and extreme frustration. Can you imagine having a severe, itch you can't scratch? And not being able to tell anyone. Well now I have this computer which I operate with my eyes, I can tell you about it. I can also email and text message from it so it has gone a long way to alleviating my frustration and sense of isolation. I therefore want to thank you for your support of the motor neurone disease association charity, as without the support of people like you the possibility of things like this to make living with MND more bareable would not happen. Thank you.'

Some Memories

On narrow boat- before I fell in!

Kenya- cheap booze anyone?

That's my boy!

Trouble and strife

Me and the sprogs

Venice- Sexy Italian men? They have nothing on this.

Chilling in Lech.

Venice with my daughter

In the motor boat to Torcello that I blagged, having pretended
to be staying at the Cipriani.
You can take the man out of Clapham...

bad hat. good wife

Kenya- I think I spot...a black-headed chaffinch!?!

how can one man, be so hunKYYY?

There's Nothing Wrong With Me

There's nothing wrong with me,

I am as lazy as can be.

I can't be arsed to walk,

and I can't be bovered to talk.

I ride in this chair,

because I just don't care,

and I don't use my hands

because I am not that kind of man.

I'm into saving energy,

'cos that is very trendy.

So don't feel sorry for me,

I am just an idle b*.

Man turned Misog (entitled by the daughter)

Is it a blessing or is it a curse,

to live like this, is there anything worse?

Unable to talk, unable to eat,

fully dependent, not standing on my own two feet.

Waking each day is a double edged sword,

the gift of life should not be ignored,

I am well looked after, my wife is a saint,

but it's wrong that she suffers, her life is restrained,

I am a burden, of that there's no doubt,

she would be better off if I checked out,

my family wouldn't say that, and that's for sure,

but I know I'm a drag, so show me the door.

I realise I seem negative and somewhat down,

and I do appreciate the love that I'm shown,

but how would you be if you were like me,

I used to be so different, flying free,

we planned to travel, a world to explore,

but I can't do that any more.

That shouldn't stop Julie, this wouldn't be fair,

and my kids are in limbo, because they care.

Should I hang on, hoping for a cure?

It's not up to me, of that I am sure.

For I cannot move, so I have no choice.

My life is not my own, I have no voice.

This is how I feel, for better or otherwise.

I must sit in this chair, and contemplate my demise.

A Note From His Daughter

My Dad has always been one of those people who unfailingly looks on the funny side of things. This has got him in a lot of trouble over the years. But it resulted in an interesting childhood for me. When other parents were encouraging their children to read Blake and Keats in the school poetry competition, Dad was busy teaching me the 'Gafongo' by Spike Milligan, providing me with an A3 visual depiction of the poem, and dressing me as a mad scientist. I will never forget my teacher's look of surprise when I began to recite my poem with gusto, smacking the picture's 'singing knees' and toes that 'explode like toy balloons' at the relevant points. You will be pleased to hear that I was awarded second place for my performance: first place went to Rosemary with her rendition of William Wordsworth's 'Daffodils'.

This sense of humour has proved hardy. It has not deserted him even since he was diagnosed with Motor Neurone Disease. For example, instead of feeling sorry for himself when he began to find speaking increasingly difficult, he instead spent numerous hours programming in 'necessary' phrases in his light-writer. These included 'this is my Stephen Hawkins impression', 'pass me the Guinness', and 'Yes!' (do not be fooled by the seeming practicality of this last one; its was mainly a reference to the family joke: 'yes, your bum does look big in that!). Well, being in a wheel-chair, he is now the perfect height to judge.

Similarly, when his hands became so weak that he could no longer operate this machine, he embraced his new, swankier one, and set to work on mastering it. This one enables him to change the channel of the TV, talk, email and even send text messages, all using only his eyes. He loves it; he can now communicate even his longest, and rudest, jokes, with aplomb.

But it is not all fun and games, however, or even at all. I cannot even imagine what it must be like to experience your body shutting down, and not being able to do anything about it. To go from being the most outrageously extroverted person, always the centre of attention, to being forced more and more into your own head. And to have people, even your oldest friends, take one look at you, and assume that as your body has deteriorated, your mind must have gone the same way.

But the Dad I know and love is still right there, sitting before us. Even if it does take a bit more effort for him to let him out, he manages it, and succeeds in causing the same amount of mischief as before. When he was forced to stay in hospital for a time, for example, he soon had lots of the nurses 'popping in' for a chat and a giggle. He also insisted that, when no-one was looking, my Mum smuggled him out each day for a trip to the golf-club and an all-important cider and laugh with his mates. He has even managed to form a break-away group within the Motor Neurone Disease Association- he took one look at the misogs at the meeting, and immediately gravitated towards those that had a bit more oomph and were up for a laugh; these 'raspberries' and him now meet up regularly, send each other hilarious poems, and tell jokes. Some things never change.


So I hope this blog will enable him to put down some of his day-to-day musings. Because it is a waste to miss out on the tumbly thoughts that still churn around in that head of his. And even if though this will undoubtedly just prove what we all know- that he is as mad as a March hare- he is my Dad, and I couldn't be prouder of him.