Sunday 15 May 2011

Ben's Speech


There were two reasons I wanted to speak today; I wanted to tell everyone here about the man I knew, Dad and friend; I also wanted to say something to my dad which I never got to say, but which I had planned to when I next got the chance; I’ll start by telling you about him.

I think I could talk for a lifetime about the man that I call Dad; he could talk to anyone, relate to everyone, and he knew exactly what to do in every situation. I remember the time, Mum, Dad, Abs and I went to Disneyland Florida – We had booked to stay in the Sports Hotel, a sprawling apart-hotel just outside the theme park. Upon arrival, we realized that the hotel was not quite to our liking (I say WE rather loosely, Mum was probably the main instigator here) – I won’t go into detail, but suffice to say that it wasn’t going to be a culturally enriching experience... At this point, Dad marched us straight past the reception, across the lobby and to the nearest phone, where he made a call to the Disney Castle hotel, the main hotel within the park. He enquired as to the availability of rooms here, to be told that this hotel was fully booked, as it would be, at the height of summer. A normal person in this situation might thank the kind, friendly American lady on the phone, walk back to reception and check his family in, making the best of what we had. Not Dad – He said to that kind, friendly American lady;

“Miss, can I ask you a question; If Bill Clinton called you right now and asked you if he could have a room in this hotel for the next 5 nights for him and his family, what would you say?”

She replied that, should that happen, they would likely find Mr Clinton a room as requested. To this, my Dad replied;

“Well Miss, I can tell you that Bill is unable to make it at the moment, so would it be possible to have his room instead?”

We stayed at the Disney Castle hotel for 5 nights, in a fantastic room overlooking the park.

I’ll always remember the way Dad could tell a joke about anything – He used to boast that, if you said a word, any word, he’d have a joke related to it, and a follow up from that leading into another… and another… etc. etc. I’m sure you all will as well. Man, did Dad like to tell a joke. At this point, most people might add in one of the classics, but I’m sure you’d have heard it already. There were only 5 in total.

A music lover, Dad imparted in me a passion for playing and listening to Music. I grew up on Led Zeppelin, Pink Floyd, Dire Straights and many more, learning early on that these guys were pretty cool, and thinking that my Dad must be as well, if he listens to them… As I got older, I realized this was slightly misguided – Dad’s not cool, he listens to Oldie music, not the newer stuff like Green Day, Nirvana etc. When we went look at guitars one day, Dad tried a few out, strumming chords to Stairway to Heaven and American Pie; I was talking to the guy in the shop about a few bands, Green Day were my favourite at the time, when across the shop, Dad starts playing their newest single, Basket Case, on a Fender Strat; The guy was suitably impressed, asking me “is that your Dad playing Basket Case?”. I was pretty proud to say “Yes”.
One moment that I got to share with the old man was a concert he took me to in 2007, Led Zeppelin – This was a great day for both of us, as 25 years before, Dad had gone to see them, pretty much the same age as I was then. That was a pretty special day, and one that I’ll remember forever.

 I could go on; Dad loved his Family, Chelsea, his business, his golf, his skiing, his beer and food (check out the pictures later, this was clearly a man who liked his beer and his food), and he did them all to the max. This was a guy who enjoyed life, and did the things that he wanted to do. Even after he got ill, Dad made sure that he enjoyed the things he could continue too - We went to Chelsea most weekends, he developed a love of random alcoholic beverages, Moscow Mules, Crabbies Ginger beer, etc.

But I think the most important thing was that we all spent a lot of time together as a family, enjoying each others company. Dad was a family man, and illness or no illness, he didn’t let anything get in the way of his love for us, or his desire to make sure that we did the things that that we wanted to do; that he wanted us to do.

And here’s the bit that I wanted to say to my Dad, but didn’t get the chance.

Dad, before we said goodbye, you told me it was best to make a “bucket list”, a list of things that you want to do before you die. I thought about it long and hard flying back from Oz, and I realized there was only one thing that I’d put on mine. The only thing that I truly I want in my life is to know that I have been even half the man that you were, and even half the Dad that you have been to me.

Bye Dad, I love you, and I’ll see you on that black run in Flane.

Brian 'Grandad' Lawrence's Speech


Sorry everyone to interrupt you but Julie has asked me to say a few words about my mate Steve.   He was such a talented guy a very successful businessman, a good musician and a loving husband and father.   He was so proud of his family and of all their achievements and loved nothing better than having an impromptu jam session -  playing his guitar and singing with Ben and when Abi got a first at Uni he was bursting with pride even though at the time he was very ill and I am proud to be an honorary granddad to them all.

Every Tuesday Dave Shave and Tony Sparkes and myself would spend the afternoon with Steve so that Julie could come to the club to keep in touch with her friends.    We either watched a film a comedy dvd or listened to steve’s jokes again and again but I am sure whatever we did -  he did appreciate it.   Thanks guys.

He had numerous and fabulous holidays and I am sure a few of his mates will want to tell you about them later.   One of my holiday memories of him was in a fantastic 10 bedroom villa in Portugal bought by Steve at an auction - it was magnificent and we all had great fun golfing during the day and Liz Young and myself fighting over the karaoke machine in the evenings.   We also went with Steve and Julie sailing around the Greek islands.   Anyone who read his “roger the cabin boy daily captain’s report” will have had many laughs - we certainly did.   What a treat to have him aboard.

After the diagnosis of motor neurone it was suggested we try to get an eye recognition computer similar to stephen hawkins.   I endeavoured to raise the money together with Graham Young and luckily for us all - Grant Needham was able to take the load from us - thanks Grant - and what fun Steve had with it.  His jokes were phenomenal and were never ending.   Poor Julie had to listen to them all day long.  It didn’t matter who came in doctors, nurses, care workers, builders, they all listened to his jokes.   I am sure you will agree with me Steve was a very very brave man and was able to maintain his sense of humour to the end.  

But we mustn’t forget Julie who lost 24 stone in weight - we used to call her big bird now we call her little sparrow.   Julie looked after him with extraordinary love and devotion and he told me many times how much he loved her and was grateful to her.


Steve embraced everybody at Cuddington he was always happy to talk and share a joke -  a joke and yet another joke with anybody at the Club.   Even John Terry (Chelsea and England captain) after playing at Cuddington was so impressed by his sense of fun that he put an obituary in the Chelsea match programme.    

I think you will all agree he was a fantastic member and I feel sure would have gone on to be a great captain.

Late breaking news - Steve has arranged to play golf with Seve Ballesteros tomorrow morning - he wont beat him at golf but he will make him laugh.

Thursday 12 May 2011

Don's speech at the funeral


Steve Henry Goodfellow

Good morning everyone, I’d like to say a few words about my good friend Steve Henry Goodfellow, who will probably be looking down this morning on this august gathering with a wry grin on his face, wishing desperately that he could be here to say a few words to you all himself.

Firstly though, to Julie, Ben and Abi and the rest of his immediate family here today, may I express my heartfelt sympathies to you on your loss. Steve was a great husband and father and I share in your bewilderment as to why he, of all people, should be struck down so horribly by such a pernicious disease

What words can I say that might capture the essential spirit of a man who had such a joy and zest for life, and who judging by the number of people attending here today, was a much loved and admired individual.

Perhaps, if you would allow me, I could provide some anecdotes about my relationship with him that might illuminate what Stevie Gee (as I liked to call him) was all about. The football fans amongst you will hopefully appreciate the delicious irony in the Stevie Gee reference

We first met in 1979 whilst working for an American Oil Company called Phillips Petroleum - two likely lads hailing from Sarf London who hadn’t done too badly from an educational point of view. Steve unbelievably was employed as a trainee accountant, and I as a trainee commercial manager. In those days Steve had a beautifully full head of hair (including a quiff) and I sported a well maintained 70’s looking afro, full of black hair with nary a hint of grey or silver.

Our individual and deep sense of fun meant it was inevitable we were destined to become big mates and combining that with a competitive edge to everything we did, meant that we cemented a strong and enduring relationship.

In the early days, our fairly puerile sense of humour nearly got the pair of us sacked by the oil company for a series of pranks that came unstuck on more than one occasion.

·        Ascot and the Chief Exec
Ø      Phillips social club manager organised a day at Royal Ascot for Phillips employees, transportation from our head office in Victoria to Ascot was to be by coach
Ø      Steve and I forged the Chief Exec’s signature, requesting two seats for him and his wife at the back of the coach, just in case they might want a bit of a kiss and a cuddle on the way back
Ø      Social secretary was very proud the Chief Exec had booked onto the trip, but then he spoiled our fun by hassling the Chief Exec (or at least the Chief Exec’s PA), for coach fares

·        The Chief Exec’s Fan Club
Ø      Our Chief Exec was a man from Kentucky with the unlikely name of Earl B. Guitar
Ø      Steve and I spent a good deal of time preparing and distributing Earl B Guitar Fan Club membership packs that contained
§         a life size cardboard cut-out of Earl to examine in the privacy of your own home and break the ice at parties
§         Play Bert Weedon in a day self help guitar guide (Google Bert if you don’t get this…)
§         Entry into a competition where the top prize was the chance to duet with Earl Guitar at Nashville’s Old Oprey Theatre in America

·        Drilling Application
Ø      We submitted an entirely fictitious drilling application to the Department of Energy seeking permission to begin exploratory drilling in Knightsbridge
Ø      As supporting evidence, we cited the secret (and made up) geophysical and seismic data we had commissioned, which led us to believe there was a rich seam of oil producing hydrocarbons …..under Harrods

In each of these examples, we narrowly avoided being exposed through the timely intervention of the Chief Exec’s PA who for some strange reason liked both of us, thought we were funny and could hold off those folk baying for our blood, with unbelievable charm and sweetness

We also shared a deep love of music in all of its forms. He taught me a lot about rock ‘n’ roll, and I like to think I switched him onto jazz, blues and an occasional bit of hip hop. We also attended a good few concerts together from Pink Floyd to Marvin Gaye. In fact the last concert we attended together was the Roger Waters gig at the 02 in 2008. Although I didn’t know it at the time, sadly this would be the last time I saw my good friend Steve.

Many was the time we hooked up for a night out, or a BBQ, or other social event, and at the end of the evening Steve would strum his guitar and I would sing the blues. A really good memory remains in my mind of these times, and I think there are still some photos in existence that show these impromptu jam sessions were more often than not fuelled by some excellent and exotic ales.

The other thing that really defined our friendship was a very keen but healthy competitive edge. Those people who know both of us will know something of the nature of that competition. It didn’t really matter what the sport was, there was always a full blooded encounter between us…
·        Squash (I knocked one of his teeth out with my backswing, he peppered my body with the squash ball if I strayed too far in front of him on court)
·        Marathon tennis sessions in Corfu that drew crowds because neither of us was prepared to concede a single point willingly.
·        Swimming competitions. He was good at swimming, I couldn’t swim and he once challenged me to a diving competition, then when he found out about my inability, he took great pleasure in taunting me horribly  
·        Golf (a wild slice in his early golfing career caught me square in the back of the leg as I was looking for my ball)
·        Impromptu dancing competitions in night clubs around South London

Time moved on, and Steve met and married the lovely Julie and together, they started their family, the tall feller Ben and his beautiful sister Abi. I was pleased to be made to feel very much a part of his new family.

At the same time, Steve started to develop a successful career in the property management and financial services industry. This success was based entirely on his own work ethic, his exuberant personality and his wicked sense of humour. These qualities seemed to endear him to and charm the pants of most people he came into contact with. I think it speaks volumes that his business at its height was a hugely successful concern, with 9 or 10 offices across the area, bearing his name. As far as Steve was concerned, his name stood for “we do things right around here”, and he was very fierce about guarding his reputation in this regard. Employees or directors who failed to uphold these values did not usually last that long at his company. Personnel management was old school and robust, but the company prospered as a result.

In 1997, I too got married to my wife Louise and we were very pleased that Steve, Julie and his family, became part of my extended family, and were able to join us in those celebrations. As usual, he was at his most charming, effusive and humorous on my big day and even my Mum (not normally impressed with many people, or my friends in particular) commented that he was such a lovely man and that she wished she were 40 years younger.  

Steve Julie Ben and Abi got to know my sons Harrison and Max very well. In fact when Harrison was born, Steve decided to nickname him Paddington on account of our family name being Blair. In recent years we haven’t seen quite so much of each other as perhaps we should have. Raising kids isn’t easy, work these days seems to be all consuming, and generally getting on with life seems to eat up a hell of a lot of one’s free time.

However, I think we all need to make a big effort to find the time to see those that you love and care for. I guess that’s a lesson we can all learn, and we shouldn’t continue to excuse ourselves, so to speak. Despite this, I’d like to think that good friends understand these pressures and challenges of life, and we try to pick up with friends wherever we left off the last time we met, because true friends live in our hearts and minds always.

I didn’t know anything at all about Steve’s illness until Julie called me with the devastatingly sad news of his passing. This week I read Steve’s online blog and that shook me even further. Typical Steve really, he didn’t want me to know about (much less witness) his deteriorating health condition. He wanted me to remember him in fine form battling against me in whatever sport we had chosen - and I cannot really blame him for that. It is indeed how I will remember him.

I’d like to offer my heartfelt thanks to Julie and his wonderful kids for looking after him so well during his illness. Can I also say a big thank you to those friends here today who supported him through his illness.

Rather selfishly, I am saddened that I didn’t get the opportunity to say goodbye to my friend before he passed away. I hope that my few clumsy words here do him the honour I feel for him in my heart.

So how do you sum up a man such as Steve Henry Goodfellow. He was a loyal, hugely social, friendly, up for a laugh, competitive, exuberant, successful and loving kind of guy. An all round good egg and I loved him like a brother. I’m proud to say that I knew Steve Goodfellow and that he was a good friend of mine. Like so many here today, I will miss him deeply.

I keep looking up in the sky for the brightest star Steve, because that would obviously have to be you, shining down on us all.

I’d like to finish by sharing this small bit of prose by David Harkins that really spoke to me. I hope you are similarly affected.

You can shed tears that he is gone, or you can smile because he has lived

You can close your eyes and pray that he'll come back, or you can open your eyes and see all he's left

Your heart can be empty because you can't see him, or you can be full of the love you shared

You can turn your back on tomorrow and live yesterday, or you can be happy for tomorrow because of yesterday

You can remember him and only that he's gone, or you can cherish his memory and let it live on

You can cry and close your mind, be empty and turn your back, or you can do what he'd want; smile, open your eyes, love and go on.


Thank you
Donovan Blair
7th April 2011

Abi's Speech


I found this almost impossible to write. I thought the words would flow easily: our family has spent the whole time since Easter Sunday reminiscing about dad and his cheeky ways. We have laughed as much as we have cried, which is about right, seeing as dad was never one to feel sorry for himself. He always looked on the bright side. He was a firm believer that there are only two types of people: drainers and chargers. He was a charger through and through.

 But actually selecting some of these anecdotes and trying to sum my dad up has proved difficult. He lived life to the full, and never took no for an answer. Who else would heckle John Terry and get himself a mention in a Chelsea program, even after he had lost his voice? Who would get away with drunkenly upturning the entire table at the Villa Medici without so much as a slap on the wrist? Who would have the audacity to just swan onto the private boat to the Cipriani in VeniceWho would get their child to call her beloved sheep-shaped slippers ‘pasanda and cleftico’ for a year before she realized the ruse? He had a way about him that meant he could get away with anything, and he certainly made the most of it.
  
From a daughter’s point of view, he was an amazing father. I hold my hands up and admit that he spoilt me rotten; he read me Winnie the Pooh or Paddington Bear until I fell asleep; took us on amazing holidays to exotic places; encouraged and facilitated my never-ending studies; and even supported my decision to do a winter season. I kept him updated via email and blog about my adventures in Meribel, for which I was rewarded by his characteristic and witty replies, along with a scattering of jokes, which got me told off by my boss on a number of occasions for snorting at reception.

He also kept me updated about the day to day activities of my family.
He was so proud of my brother, who has done things exactly as dad always said he would, and who was always his favourite jam-partner and Chelsea-mate.
 And he was so in love with and grateful to my mother, who stood by him through everything. My parents have made me believe, without any shadow of a doubt, in the reality of ‘soul mates’.

So no, it isn’t fair that he got ill. But in many ways we are lucky. It was characteristic of dad that the first things he programmed into his light-writer were ‘this is my Stephen Hawkins impression’ and ‘pass me the Guinness’. Everytime he was knocked down he bounced right back with a joke. He showed us how to laugh through the shit as well as the good times, and taught us to cram as much as we can into our lives while we have the chance. He certainly did.










Wednesday 27 April 2011

Stephen Goodfellow

‘Steve’

 “I told you I was ill”

 Died suddenly on Sunday 24th April after a hard battle with Motor Nuerone Disease.

 The funeral will be held at 10am on Saturday 7th May at North East Surrey Crematorium, Lower Morden Lane, Morden, Surrey, SM4 4NU.

We will then all celebrate his life at Cuddington Golf Club, Banstead.

 All enquiries to W.A Truelove & Son Ltd., 31A High Street Cheam, Sutton, SM3 8RE, 020 8642 3300.

Friday 15 April 2011

THE RUSSIAN MULE

Vodka is the way forward. I have enjoyed drinking Crabbies alcoholic ginger beer of late and last week a fellow member at Cuddington advised me to try a Moscow Mule cocktail. It comprises lime, double vodka, topped up with ginger beer or ginger ale with ice and if you like, angastoura bitter. It is rather nice. I have also been having vodka soda with lime and ice, but last night I thought that the lime was getting to my throat, so I changed the lime to orange which worke people with mnd don't have too many pleasures and it seems that when you realise what you are still enjoying something else stops working and you have to find something elso to amuse you /keep you sane. So call me a pisshead if you like but it helps me sleep and keeps me sane.

THERE IS ONLY ONE ENGLAND CAPTAIN

I am still a member of Cuddington Golf Club and recently Paul Clement joined. He is the assistant coach at Chelsea, the position formerly held by Ray Wilkins. Two weeks ago Paul brought Ashley Cole to play golf but I didn't see him. Yesterday he brought John Terry. When John was walking into the bar I played loudly " one England captain, there's only one England captain."
John Terry then brought me a signed mongrammed England shirt and a pair of England boots with his childrens' names on, Summer and Georgie. John was extremely polite and caring but it made me realise how vulnerable I look to people meeting me for the first time.

Friday 1 April 2011

A WEEK IN THE LIFE OF A RASPBERRY RIPPLE

Sunday : drank coffee at Costa. came home and sat in garden with Julie, Ben and Amy watching the drama unfold as the kitten was stuck 50ft up a tree. Sat on cabin verandah with Ben and Amy drinking early evening. Good day.
Monday : went to Costa and drank a whole caffe latte. Then home for emailing and a snooze, then to golf club where I was able to drink a glass of coke with ice with no choking. Good day.
Tuesday :at Costa first thing but found drinking hard and only managed one inch. Dave and Tony came round and we watched a Jack Nicholson film called About Schmidt, which was crap. I was conscious that I spent seven hours without moving anywhere so in spite of my pals visiting I was not happy. Found drinking hard that evening too. Bad day.
Wednesday :At Costa didn't fancy coffee so tried a fruit loop thickened. It was delicious but drank immediately before going in car with neck brace on. Coughed and choked all the way to Reigate where we were meeting Liam and Anna and Pauline and Leonard. Reigate Priory is a lovely park with a great cafe, lovely gardens and a large lake, and paths that are wheelchair friendly. On arrival Pauline was in her wheelchair in her car screaming at Leonard " you are a total and utter moron ".
She didn't think he had put the suspension down which is necessary before she can alight in her wheelchair.Liam and I were pissing ourselves laughing because we saw that Leonard had done it. As we walked into the park we heard Pauline apologise to Leonard, but I couldn't leave it there. In the cafe I, on my talking computer, asked Pauline to explain the difference between a normal moron and a total and utter moron. That evening we saw many friends at the golf club and I drank a lot of ginger beer. Good day.
Thursday :Costa where I drank half a latte. Then to St Raphaels hospice to spend time with other raspberries so Julie and I can have a break from each other and the hospice can get to know me in case I need to go in sometime. I was frustrated as my eyegaze machine wasn't working properly. To golf club in evening, choked on ginger beer a bit but got away with it. Not a great day.
Friday :1st April : Costa in morning where I managed a half cup of latte. sat down, I am always sat down but you know what I mean, and that's where I am now. Hope it will be a good evening, we have nothing planned but we will most likely think of something.

Monday 28 March 2011

SMELLY CAT PART 2

The nesting kitten doesn't so much fly, as plummet.

how to spend a Sunday afternoon. The peace was broken by Amy screaming that Millie who is only four months old, was 50ft up a tree behind the log cabin and actually in our neighbours garden. Amy called the RSPCA who didn't make any promises other than to tell the local branch. So we settled in to wait for Millie to come down. Ben and Amy had a picnic. Millie miouwed
in distress from up the tree and we all helplessly watched on. Julie called Simon, the golf course manager at the course behind our house. He came down and had a look but said the cat was too high and as it's a fir tree it would be dodgy to put a ladder up against it and he doesn't have one long enough.
Then, after an hour and a half an RSPCA man turned up. He looked in the various trees and then Amy pointed to where Millie was and he said " OH MY GOD "
We tried the Fire Service earlier but were told they would not attend a cat in a tree until it had been up there two days. Anyhow, the RSPCA man said he would call the Fire Service and see if he could get them to help. He did and five minutes later a shiny red fire engine was outside our house whilst Amy was in the cabin applying war paint and perfume, it seems she has a thing about firemen. Ben decided to splash on some after shave saying " might as well cover every evelntuality. The firemen brought in a ladder which was too short, so they called for a longer one. Meanwhile Millie was doing her bit by keeping up the distressed kitten noise. A second fire engine turned up with a bigger ladder. They went into our neighbours garden and a fireman with a yellow helmet climbed up. He was close to Millie and shaking the tree, whereupon Millie decided enough was enough and lept out of the tree and landed on her feet in our garden, watching and made straight for the cabin and her litter tray.
So four months old kitten took time from the course manager of Cuddington, an RSPCA man, two fire appliances, and entertained us /frightened us for five hours on Sunday afternoon, and that was her first time out of the house. action cat reverted back to Smelly Cat, but what will she do next time she is out?

IT IS A SMALL WORLD

My wife received a call from Ben who was at work, saying he could not believe it, but he had just received a call from Matt, a best friend of Colin, my brother-in-law, who currently lives and works in Boston USA
Colin introduced me to Matt at Highbury when Arsenal were playing Chelsea some years ago [ when Arsenal used to win trophies ]. Colin advised that Matt was an Arsenal season ticket holder, but he really is a Man United supporter. I remember taking the piss relentlessly about that and Matt, if you are reading this, please forgive me. I remember my point was that Man United were top, Arsenal were second, and Chelsea were third, I think. I asked Matt who he wanted to win in the match we were about to watch, and he said Arsenal. I said " but if you support united surely you should want Arsenal to lose. He said " Arsenal are my second team and I don't like Chelsea. "
He had a season ticket for Arsenal because Manchester is too far and he liked to go to Highbury with Colin.
It turns out Matt had been told about my mnd and my blog by Colin and he was reading my blog entry in which I described what Ben does in recruitment for banks in the City. Matt had Ben's name and number, as he has a good job with one of the banks, and he phoned Ben and asked if his surname is Goodfellow and his dad is Steve. Matt explained that Colin and he had played a few rounds of golf together including a Pro-Am at Cuddington. We always had a great laugh. I remember that Matt was best man at Colin's wedding to Sam. The closest I came to being a best man was when I attended a wedding at a nudist camp. I missed being best man by an inch.
I hope Ben gets on with Matt as well as I did and maybe they will even do some business together.

Saturday 26 March 2011

THE KIDS ARE ALRIGHT

well my daughter came home for four days and we did some things, like going to see Chalet Girl, a new film, at the cinema. It is a chic flic but I enjoyed it and I owed my wife and daughter one as I got them to watch Due Date a few months back. It wasn't that bad except for a scene involving a masturbating dog
Anyway it was lovely having her home and we all went out for a curry on Wednesday. That is Julie and I, Ben and Amy, Abi and TAF [ The Arsenal Fan ], otherwise called Tom.
we went for a walk in Nonsuch Park and Abi took control of my wheelchair and showed me a beautiful sunset.
Ben took me to see Chelsea play Man City and Chelsea won two nil, which I think puts them back in the race for the premiership.
So the kids are looking out for the old man.
I am constantly amazed at both of them. Since Abi has returned to her Alpine home she has thrown herself entirely into learning how to snowboard. And I looked out of my window yesterday and saw Ben and Amy on the lawn planting vegetables together with the cats playing around them. How things change. What next, will Abi join a heavy rock band? Will Ben become a scholar? Unlikely but who knows?

Wednesday 16 March 2011

PRODIGAL DAUGHTER RETURNS UNEXPECTEDLY

My daughter is doing a ski season in Meribel. The deal is November to the end of April with no leave to return home for any reason. In an email last week on my birthday I mentioned, perhaps insesitively, that it could be my last, and this upset her when she was at the hotel reception. Her boss queried it and decided she could have a break to come home for a few days. My wife was furious with me for the email but we are all pleased now that she is back. She arrived yesterday and flies back Saturday.

MY BIRTHDAY

It was my birthday on March 7th and we went to Brighton with my son and his Essex girl Squeeze, Ben and Amy. It was a nice sunny day and I enjoyed sitting in the sun facing the sea and the beach. Of course I couldn't join in with the eating and drinking but you have to make the most of what you have and I was able to enjoy the taste of my son's cider in small spoonfulls. Then we went on the Pier where Ben and Amy won toy dolphins on the games.

A WALK IN THE RAIN

I must say one thing about not being able to drink in sufficient quantity to satisfy my thirst effected me in a strange way recently. My wife and I have taken to walking from Kingston Bridge through Canberry Gardens alongside the river towards Ham. Two weeks ago we parked in Kingston centre and the heavens opened, it was raining persistantly. So we went for a coffee. After Julie asked me what I wanted to do and I said go for a walk. I felt I could do with the feeling of cool rain on my face. So I was wrapped up in rain gear and blankets and off we went. It was a long walk, for Julie, and we got soaked. With hindsight probably not a great idea for someone prone to chest infection but as Julie says,"Don't worry you are not dead yet. "

Tuesday 15 March 2011

MY MND EXPERIENCE

December 10th 2007:I and my son, Ben, went to the O2 to see Led Zeppelin perform their only concert in 16 years. It was outstanding and when they played Stairway To Heaven both Ben and I were in tears as it was to that song that Ben started learning the guitar. I often say apart from marrying my wife and the births of my son and daughter, Abi, I say that was one of the best days of my life.
December 10th 2008 :by far the worst day of my life. After seeing Dr Oliver Foster , consultant neurologist, for about three months he arranged for my wife, Julie, to see him at his office in Harley Street. Previously I had mainly seen him at Parkside Hospital Wimbledon. To begin with he told me I had hydrakephalis, basically water on the brain, operable by a shunt being inserted to carry water from the brain to the stomach. Dr Foster referred me to to an eminent neurosurgeon who examined me and said " I don't believe that is what you have and I am not prepared to do the operation. Back at Dr Foster's office in December 2008 : he sat my wife and I down and explained the surgeon's view and said he had concluded that my diagnosis was motor nerone disease. I said what does that mean and he said " it is incurable and you will get progressively weaker over 3-5 years. My wife began to cry.
We walked out of there in a daze and apart from arriving at Regents Park tube station round the corner from Harley Street, I have no recollection of the journey home.

The mystery symptoms began several months earlier than December 2008. In July my daughter asked my wife " Mum, is Dad an alcoholic? "
Julie answered " No, why do you ask that? "
" Because this morning his voice was slurred. "
I was unaware of that then but I had experienced some odd things that bothered me. For example at a golf club event on the terrace I was talking with Paddy and Mary O'Sullivan and I tried to climb over the back of a bench seat to sit beside Mary. As I climbed over my arm gave way and I fell into Mary which was a bit embarassing, although she is a good friend. In July I had a golf lesson with Mark Warner and I told him I couldn't hit the ball far enough. In September I went on two golf tours.
The first was to Bournemouth. Over the week I felt ok but Chris Oliver told me I didn't look myself, and on the last golf course to be played in the Bournemouth area, at the second green I inexplicably fell over. I was playing with Peter Hibbert and Keith Smith and I remember Peter looking concerned and coming over to help, and hearing Smiffy's voice saying " Pete, get that c*#* off my line I'm trying to putt. "
My next trip in September was to Le Touquet with Graham Young, Paddy O'Sullivan and Barry Grundy. Now I was unlikely to shine in the golfing stakes in comparison with those three but it was clear to me something more than golf prowess was affecting me. I was finding it hard to walk.
I played my last game of golf on 4th October 2008 as Captain of the English in the annual Celts v English match. That was before my diagnosis and I had no idea that would be my last game.
I had several visits to Oliver Foster before he diagnosed mnd and I was experiencing more and more alarming symptoms until the diagnosis in December 2008.
My ability to walk was becoming increasingly difficult and I was slurring more. Also my right arm was getting weaker. I continued to go to work after the December diagnosis. By March 2009 I needed a walking stick.
Shortly after that, by June, I needed a wheeled walking frame to move around and by October the same year I sold my car as I could no longer drive and became wheelchair bound. About the same time I was increasingly unable to speak coherently. And I was finding eating harder as the reason I couldn't speak was because my tongue muscles had become weak and that also affected my ability to manipulate food in my mouth. If that wasn't bad enough I was told I had other things to look forward to. Such as my swallow would go, meaning my muscles controlling swallow would weaken causing food to go down the windpipe and onto the lungs risking chest infection which is the primary killer of mnd patients.
Over the first few months of 2009 I was able to walk and talk reasonably well but from May that year I needed, at first a stick, then a three wheeled walking frame and by July a four wheeled walking frame. By Christmas I was needing the wheelchair all the time. During this period I was seeing speech and language specialists and doing twice daily exercise routines for my tongue and lips.
Over 2009 I fell over sixteen times, sometimes in the night when on my way to the toilet. Or in the shower.
I could drive my automated wheelchair until July 2010 following which I lost strength in both arms and since then my wife, son or daughter have to operate it for me. About September 2010 I gave up eating food and I take all nutrition through a tube which is inserted in my stomach known as a PEG.
Recently, March 2011, I have struggled with drinking because whatever I drink my swallow muscles have difficulty deciding whether to direct it to my lungs or stomach causing me to choke and cough followed by a serious chesty cough for a few days. Other things that occur with mnd are constipation from spending the entire time sitting down, having people constantly patronise you as you cannot talk and you are in a wheelchair, I have lost count of the number of times I have been patted on the head, or kissed on the head by well meaning male friends. But one of the worst things is not being able to communicate normally. my voice has nearly gone completely now and even my family can't understand me. Unless I use my talking eyegaze control computer that is. I am sure my friends at the golf club would say they don't agree, as I can still tell my jokes. It has made a lot of difference to me, and mnd is a crap ilness to have and the computer won't change that, but at least I can communicate with friends and family by email and I have a voice I can use, in fact three times in the past year I have made speeches to one hundred or more people.
It's hard to say what the worst thing about having mnd is, not being able to go for a walk in the garden, not being able to have a cup of tea and hold the cup yourself or,drink without choking and then getting a chest ratleing cough, not being able to make a phone call, at one time I would have said not being able to drive my car, now I would settle for having enough power in my right arm to enable me to drive my power wheelchair.Not being able to move in bed is uncomfortable and having to wait for my wife to get me up is very frustrating as I often wake up around two or three hours before her. Understandably as she gets exhausted taking care of me.
We are sociable people and often go out to eat , now that involves me sitting and watching whilst others eat and drink.
I am criticised by people who think my blog should be positive and I agree to an extent as people won't want to read negative stuff, but there is a need for greater awareness about what the disease does to people and only those with it can really say. I will post positive or amusing blogs but it is important that I and others like me share details of what it's like so we can start increasing fund raising for research to find a cure for this awful ilness which will kill me and my friends with it, and we know not enough people know about it.

Saturday 19 February 2011

family and friends are important

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.

Friday 11 February 2011

SHIT HAPPENS AND KEEPS HAPPENING

No, it's not enough " said the man in the sky, so he can't walk, talk, move his hands and arms, eat, or keep his head up because his neck is weak. His business folded because he chose the wrong partners, so he can't provide for his family as he always did. What does he still do that he likes? "
I know, he likes a coffee in the morning and a glass of ginger beer in the evening. Now he will get a bad chesty cough whenever he drinks. That will be good for a laugh."

Sunday 30 January 2011

FACTORY STORY

There is a factory in Essex which makes the 'Tickle Me Elmo' toys. The toy laughs when you tickle it under the arms.

Well, Michelle is hired at the 'Tickle Me Elmo' factory and she reports for her first day promptly at 8:00 am.

The next day at 8:45 am there is a knock at the Personnel Manager's door.
The Foreman throws open the door and begins to rant about the new employee.
He complains that she is incredibly slow and the whole line is backing up, putting the entire production line behind schedule.

The Personnel Manager decides he should see this for himself, so the 2 men march down to the factory floor. When they get there the line is so backed
up that there are 'Tickle Me Elmos' all over the factory floor and they're really beginning to pile up.

At the end of the line stands Michelle surrounded by mountains of 'Tickle Me Elmos'. She has a roll of plush Red fabric and a huge bag of small marbles.

The 2 men watch in amazement as she cuts a little piece of fabric, wraps it around two marbles and begins to carefully sew the little package between
Elmo's legs.

The Personnel Manager bursts into laughter. After several minutes of hysterics he pulls himself together and approaches Michelle .

'I'm sorry,' he says to her, barely able to keep a straight face, 'but I think you misunderstood the instructions I gave you yesterday...'

'Your job is to give Elmo two test tickles.

GROUNDHOG DAY

a normal day for me starts with me waking up in bed, in the same position I went to sleep in, and either waiting for my wife to get me up or the two nurses who come every morning. They use a hoist to get me into a shower chair /commode. They shower me, shave me and dress me and transfer me to my wheelchair. Once Julie has had her shower and got dressed we go to Costa coffee for about 10:35. Then at between 11:30 and 12:00 we come home and I get on the computer and emails. Recently in Costa I have been reading "the girl with the dragon tatoo" on my kindle for pc. At about 5:00 we go to the golf club for a drink. At about 7:30 we come home and watch telly until the nurses come between 11:00 and 11:30pm. Occasionally I get a treat to break the Groundhog Day feeling. We might go to see Chelsea play, which I enjoy, or we might go to a medical appointment at Kings College Hospital or St Georges Hospital, or else we go to Kingston, shopping. Now when I was healthy and could walk and talk I hated shopping, so imagine how much fun it is when you are in a wheelchair and can't talk. funnily enough it is not so bad as it makes a change from the norm and defeats the Groundhog. Except when I get left in shop doorways and the bra department of Bentall's. Some might think that's a good thing but, believe me, sitting there for twenty minutes plus various women hovering closely looking at underwear made me feel quite uncomfortable and a bit of a perv.

Friday 28 January 2011

FINANCIAL TIMES

You've read the papers about the Irish Bailout Package. ?


It is a slow day in a damp little Irish town. The rain is beating
down and the streets are deserted. Times are tough, everybody is in
debt, and everybody lives on credit. On this particular day a rich
German tourist is driving through the town, stops at the local hotel
and lays a €100 note on the desk, telling the hotel owner he wants to
inspect the rooms upstairs in order to pick one to spend the night.
The owner gives him some keys and, as soon as the visitor has walked
upstairs, the hotelier grabs the €100 note and runs next door to pay
his debt to the butcher. The butcher takes the €100 note and runs
down the street to repay his debt to the pig farmer. The pig farmer
takes the €100 note and heads off to pay his bill at the supplier of
feed and fuel. The guy at the Farmers' Co-op takes the €100 note and
runs to pay his drinks bill at the pub. The publican slips the money
along to the local prostitute drinking at the bar, who has also been
facing hard times and has had to offer him "services" on credit. The
hooker then rushes to the hotel and pays off her room bill to the
hotel owner with the €100 note. The hotel proprietor then places the
€100 note back on the counter so the rich traveller will not suspect
anything. At that moment the traveller comes down the stairs, picks up
the €100 note, states that the rooms are not satisfactory, pockets
the money, and leaves town. No one produced anything. No one earned
anything. However, the whole town is now out of debt and looking to
the future with a lot more optimism. And that, Ladies and Gentlemen,
is how the bailout package works.

I HATE WINTER SO HERE ARE SOME JOCULAR MUSINGS

THE LOVE DRESS

A woman stopped by, unannounced, at her son's
house.
She knocked on the door then immediately
walked in. She was shocked to see her
daughter-in-law lying on the couch, totally
naked.
Soft music was playing, and the aroma of
perfume filled the room.
'I'm waiting for Justin to come home from
work.' The daughter-in-law answered.
'But you're naked!' the mother-in-law exclaimed.
'This is my love dress,' the daughter-in-law
explained.
'Love dress? But you're naked!'
'Justin loves me to wear this dress,' she
explained.
'Every time he sees me in this
dress, he instantly becomes romantic and ravages
me for hours.'
The mother-in-law left. When she got home she
undressed, showered, put on her best perfume,
dimmed the lights, put on a romantic CD, and lay
on the couch waiting for her husband to arrive.
Finally, her husband came home. He walked in
and saw her lying there so provocatively.
'What are you doing?' he asked.
'This is my love dress,' she whispered,
sensually.
'Needs ironing,' he said, 'What's for dinner?'

Saturday 22 January 2011

FUNERAL FOR A FRIEND

for those who wonder Millie is she is a six week old kitten that belongs to my son, Ben and his girlfriend, Amy.
This week Julie and I attended a funeral for a 68 year old golf club friend. He was a Scot and he was a generous man in terms of hospitality to his friends, particularly outside the UK where he owned properties in Portugal and Thailand. But in England and especially at the golf club he lived up to the Scottish stereotype. He apparently died from a heart attack after taking too much of the cheap Thai equivalent of viagra. This is both tragic and ironic as he died a multimillionaire. I had to go to the funeral, not only to pay my respects to someone I liked and who was a chracter down the club, but also to see if they got the lid on his coffin.

Smelly Cat

On Wednesday we had a laugh because of Millie. She went in her litter box when Julie was outside on the phone, whilst I was inside on my own. Suddenly my nostrils were assaulted by an obnoxious effluvium.

I turned my talk volume up to 100% and screamed SMELLY CAT SMELLY CAT. Jules heard and came in laughing her head off and sorted it out. I emailed Ben and Amy that and they were still laughing when they came home that night. She really is a stinker since as I am writing this she has done another one and my eyes are almost watering. How can something so cute make such horrendous smells? Mind you, my daughter has made some stinks from time to time...

Sunday 16 January 2011

new update for 2011

Recently I have been remiss in updating my blog. This is because I was ill over the Christmas period and to be honest I couldn't be bothered. But I am encouraged to get on with it by a number of naggers. So here goes. I have been to football, to Chelsea that is. Normally my son, Ben, takes me but he was away in Poland skiing. So my wife, Julie, stepped up even though she doesn't like football. she was not impressed when it poured with rain at evening match against Bolton. I have to admit this was beyond the call of duty. As I sit in front of the front row I don't get the benefit of the stand roof overhang and so we got soaked, or rather Julie did as I was well wrapped up. Chelsea won 1-0 which was a relief as the team that started the season with such promise, going seven points clear at the top of the premiership, suddenly imploded and lost or drew with teams the like of which they were previously beating by three or more to nil. This was possibly a contributory factor in my lethargy as in my reduced mnd world football plays a more significant part. As if going to the Thursday evening match wasn't enough Julie took me again on the following Sunday to a match which Chelsea drew 3-3 with Aston Villa. Julie asked if she could bring a book to read and she says I said no but I don't recall that and I wouldn't mind really, I am just happy to see the games and Chelsea need me there. yesterday, Saturday 15th January, my son resumed accompanying me to football having returned from Poland and we had a good day watching Chelsea win 2-0 against Blackburn. Last Saturday Julie and I went out with Ben and Amy to the Star in Cheam for a curry. I enjoyed hearing about their skiing holiday exploits but not being able to eat anything with the delicious curry aroma was tortuous.