Afternoon, all. Well after last week’s blog and my forthright comments regarding the cause of most road accidents, i.e. human error, Jean and I had an interesting experience on Saturday night! All part of the mysterious world, we call “Daily life!“. Oooooho ooooh……

Returning back late from dinner at friends, I was driving when suddenly a deer ran across the road about 1 yard in front of us all in a residential area!! I calmly reacted being unable to brake because of an idiot behind me tailgating! I had but one choice and that was to ease off the accelerator and steer slightly away from the rudely crossing animal. As I diverted, our car clipped it’s legs as it disappeared to the left of us! Just what do deer think they are playing at?! He or she was nowhere to be seen! More on this subject later in this post when I introduce you to a new employee in the onein400 ranks! Yes, I now have additional talent to help me produce my weekly rubbish! Intrigued? You will be.

It’s been a busy week. That’s what life is all about, the hectic motions that keep us alive.

At the start of the week, it was time for a haircut. I do like my visit to the hairdresser’s. Who can resist a relaxing hair wash and massage all rounded off with… “Would you like the mint treatment as well?”

I also enjoy reading the magazines. However, I do have to politely ask NOT to be given the men’s magazines, which as we all know are as dull as dishwater! Don’t get me wrong, I am a man and love fast cars, tech and things but “jeesh” aren’t the magazines aimed at men awful!? Perhaps a new diversion/business for onein400?!

I still manage to walk with a stick throughout the hair salon, but do have to request a specific hair wash basin, ie the one next to the wall where I can grip to both sit and stand!

Exiting the salon, my hair all repaired, I ventured across the precinct to buy a Cornish pasty before my weekly massage in the afternoon. Mistake!! Luckily no pasty reappeared during the massage, but it was close, very close! Pasties are so tasty though. It’s worth the risk.

On Wednesday Jean and I ventured to Brighton to attend the launch of the new MND Centre/Network for Sussex. The event was held at the Am Ex Stadium, home of Brighton football club. Here I am after just parking up.

Once I had convinced the security guard that I was not David Beckham’s son attending a trial for the team, we were directed to the disabled parking area. The disabled spaces were about 500m from the stadium conference entrance and on google maps looked a nice flat walk. In reality there were huge slopes!! Contours are now barriers! Fortunately, a golf buggy was laid on to help us to the conference centre entrance and the staff were really helpful and kind.

“Why the sunglasses, Lee?”

I have to wear dark glasses now because Jean and I are honoured to have recently become the new “faces” of the MNDA West Sussex South Branch! So anonymity is vital.

I have asked where my application to be the “Legs” of the Branch has gone! I am awaiting their response.

There are now 21 MND centres in the UK which aim to bring, under one roof, the essential services for people living with MND and their families. A centre for MND is a bit of a difficult concept. Why? The very nature of the disease means mobility can be extremely hard and the location of a centre with the UK’s rather unpredictable road system does lead to management complications. Just like the wider requirements of the health service, innovative solutions are required. The purpose of the kick off meeting was to start discussions early on about exactly how a centre, real, virtual or both is going to operate. So it is going to be very interesting.

The event was hosted by the centre leader, Professor Nigel Leigh, one of the world’s foremost MND researchers and Neurologists. Nigel gave several research presentations, and touched just briefly on the USA “Right to try” movement. Why? Well I have mentioned this in an earlier post but put simply it is a movement for patients with life limiting conditions to be able to try any drug that has been proved safe, but not necessarily effective. Professor Leigh called this a challenge to the scientific process. I will go further and say it is, sadly, probably flawed. We have to follow proper scientific process otherwise the eventual cure could be possibly dramatically delayed as well as lead to many other preventable consequences. I have faith and belief in the scientific process which will eventually bring a cure.

However, the focus of the day was the Network/Centre plans and attendees worked in groups to feedback and comment on different aspects. I was part of a group consisting of people with MND and their carers. It was a great opportunity to work with professionals.

One of the key reasons I like to be involved in areas such as this and raising awareness is that I am acutely aware that I am already in a very very small group of people. I have now lived with MND for over 4 years. The harsh reality is that 80% die within 5 years, and over 50% within 2 years.  So it is my duty to represent the majority and fight for greater awareness and better care.

Without doubt, meeting other people with MND and their families was incredible. What a day. Thanks to the MNDA for supporting the event and to Nigel and his team for their inspiring work.

Being back in Brighton in early April reminds me of a strange, inexplicable and mysterious event about 10 years ago. It was, as I say the first week of April, and we were about to drive down to the Alps in France the very next day for some end of season family skiing. However, I was in Brighton having my relatively new car serviced. Whilst waiting for the car, I decided on the very sunny day, rather like this week, to pop into Halfords and buy a set of snow chains for the car. Onein400 is always prepared! As they say

“Fail to prepare, prepare to Fail!”

Anyway, on the short walk to Halfords, the weather changed dramatically and incredibly it actually snowed a bit! I kid you not, in early April!

I grabbed the snow chains needed, and proceeded to the tills, where upon the check out guy commented…

“Over reacting a bit mate, aren’t you?“

Strange, but true!!

The subject of snow links me to my next mysterious and slightly disturbing tale but with a key message for all of us.

About a decade ago at a company event in Las Vegas, a motivational speech was given by a mountaineer. Of course this guy had climbed Everest, but his talk was about getting on an expedition team for his very first climb many years before.

There is fierce competition to get on climbing teams and it has to be said that climbers are probably not the most altruist of human beings (sorry climbers). So he proceeded to recount a story about missing out on a place one year. However, there was a vacancy available for a camp cook! He didn’t hesitate and accepted. His reasoning? Someone always gets injured or more often dies on a major climb team! And that would be his chance to get on the climb! The moral of his story was to always take opportunities in life. Who knows what they might bring? I know this one was a bit macabre though! Incidentally someone did get seriously injured, and he climbed Everest that year! This is my philosophy on life and was reiterated by two people living with MND at the launch event who felt they were not told at diagnosis that they if they had any plans, to do them asap and not wait. They now had some regrets. Don’t have regrets, readers.

Finally this week, as hinted at, I would like to extend a warm corporate welcome to the one and only Sheesh Bragg. Sheesh (not her real name) has agreed to work for free as our cartoonist. Lord Bragg would like to state that this has absolutely nothing to do with the compromising photos he has in his safe, and Sheesh has freely volunteered her services!

Today, my wife Jean attended her Driver awareness course for that minor speeding misdemeanour she committed back in February. With our deer experience earlier in the week, I do wonder what courses deer actually attend regarding road safety?

Thank you, Sheesh. More from our new cartoonist in future blogs!

Until next week readers.