Martin Johnson and the backwards phone

I traveled up to Twickenham with Maxine. I was lucky enough to be able to to get my hands on two extra tickets which allowed my to treat my nephews. They were really excited to be there and Ash could not contain his inquisitiveness. We kept losing him but soon realized we would keep find him in the Poker tent.
After an exciting but ultimately disappointing match Robert had managed to arrange a signing session for us. Martin Johnson was the first person out and he was chilled and pleasant. Robert tried to take a photo but had my phone the wrong way round. Jonno growled something about “you may want to turn that round” and we all ended up in fits….I will remember that moment for the rest of my life…but I promise never to mention it to Rob again!!
All the players were exceptionally courteous, kind and gave up their time with good grace. We had a joke with James Haskell(massive) and Matt Bannerhan (freakishly massive) and I could understand when I met Steve Borthwick(massisve) why he is so popular as a captain. Of course the highlight had to be meeting Jonny Wilkinson and Dan Carter. I mentioned Jarrod Cunningham to them both. Jarrod was a professional rugby player from New Zealand who played in the premiership in the early part of this dacade, before being diagnosed with MND. They both remembered him and Jonny talked about playing against him Both players signed a t shirt which will be raffled or auctioned off in May.

After a brief stop in a local pub we nipped back to Ascot where a party had been hastily arranged. Old friends turned up from as far a field as Newcastle and we talked long into the night. I am finding it difficult to communicate in big groups now, especially when the noise level goes up.

Each day my speech becomes noticeably worse. I keep thinking if I get a good nights sleep it will be better. I wake up and lay there each morning wondering if the whole thing has been a dream, The funny thing about this disease is I am in no pain so in the quiet of early morning I persuade myself that when I do speak everything will be allright. Invariably my wife wakes up and asks me if I am ok and I croak back and I know my thoughts have been an illusion.

My right arm is becoming noticeably worse but although I am losing strength the loss of muscle in the rest of my body is not noticeable yet.. My legs feel often as if I have run a marathon and my breathing becomes heavy after a brisk walk. Small things that we all take for granted are becoming major chores. I can no longer wash under my left arm or do my button fly jeans up easily. There are adaptations and changes that can be made so all these things are made easier and we are taking advice from specialists and fellow sufferers on some of these.

Yesterday I saw the neurologist. I talked him through my degeneration and we looked at each other forlornly. There is really not much you can say to each other about this disease.

I do believe that the ability to adapt and change will keep me strong. Why moan about what you can’t do….celebrate what you can do…I am still leading a fortunate life.



I feel I am progressing well with the bucket list. I have certainly raised awareness of MND in Plymouth with the help of the Herald . Conrad Sutcliff also wrote a nice piece in The Plymouth Sunday Independent. The next battle will be trying to do something that attracts the attention of the national press. I am working on that today.

Although not much money has yet been raised fundraising activities are progressing really well. The rugby boys did their first naked shoot for a calendar that will be out before Christmas. From all accounts it went brilliantly! After the initial shyness the lads really got into it and towards the end of the session a full scale 30 man naked game of rugby broke out! There is another shoot tonight and one for the veterans on Sunday. We thought it would be best not to let the youngsters see the effect a lifetime in rugby has on the body!

Chris Pascoe and his team are organizing the dinner and we are hoping to be able to announce the name of one of the keynote speakers in the next few days.

South Africa and Australia tickets have been booked and we are packing all our ski gear in the next few days. We were meant to be having three quiet weeks in Val d’Isere but I have invited so many people over that we have someone sharing the apartment for all but 4 days of the 22 we are there! I never liked quiet anyway! It is Chris’ ambition to ski a black run..I have told him that it wont be easy as he is only out for two days and has never skied before but he is determined so I will have to take him up and let him have a go.!

The next time I write will be from Val, I am hoping to prize Didier from his workshop to ski with me but this has never been easy. I will also update you with Chris’s progress.

Enjoy yourself, its later than you think
Simon

Living the dream