Tuesday, 15 March 2011


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.


  1. Hear,hear!!!! I agree, Steve. My latest poem is not quite as depressing but is 'up there'.xxx

  2. Thank you Steve for an insight into your experience. Please don't feel like you shouldn't be writing about the negative things, we all love the positives but it is important for us to understand the real life journeys and implications of such a terrible life-changing illness. xx

  3. Well, I didn't enjoy reading this, but I'm definitely glad that it was there for me to read. Keep it coming dad, positive or negative, I'll read and respond - It's more important for us to know how you are feeling, than trying to make you happy - nothing worse than some prat cracking a joke when all you want to break something now is there! x