Hi readers. This week I continue with my theme for MND Awareness Month and take both a retrospective and future look at living with MND. So in this early week post, let us go back to the past before coming forward to the present date with my first guest blog announcement that is focused on awareness; a follow on to my Weapon of Choice post!
I was thinking about my blog the other day, which I have now been fortunate to have written for nearly 3 years!! On being diagnosed, a year before that, this was NOT something I would have imagined I could still be doing!! Soon perhaps my blog will be made into a movie?! Who would play me and Lord Bragg?
But seriously folks! Right at the forefront are my memories are the people affected by MND I have met either online or face to face since being diagnosed.
MND can hit anyone, any class, morons and intellects alike, rich or poor, Arsenal, Man Utd and Man City fans. In fact there will be no clubs whose fans are unaffected with the disease hitting 1 in 300.
I am going to mention just 5 people who I have got to know. All living with/or have lived with MND. Sadly 2 are no longer with us. Unfortunately/fortunately I have met loads more and you are all in my heart.
Early on I made the acquaintance of
Dagmar Nissen Munn from Arizona in the big old US of A!
Dagmar is the sort of person that everyone who gets to know her is absolutely fascinated and delighted. I wrote about Dagmar in the post Was that supposed to come out of my nose—enjoy. It is an absolute MUST read, with the amazing story of her father that shows you where her zest for life came from.
Dagmar and I have exchanged many long emails and messages. Dagmar, if I come to Vegas again we MUST meet up, it’s near you!!
Dagmar writes her own blog which is full of how to live your best life with MND (ALS), largely revolving around fitness and exercise and I can endorse everything she says. She also writes a short uplifting weekly article for ALS News Today.
Secondly, there was Ray Spooner. I wrote about his influence on me in One thing leads to another
Ray, who has sadly now died, was also a citizen of the US of A in Chicago, but was actually a Brit from London!
I stumbled across Ray online, and he was the absolute inspiration for me buying a recumbent trike.
You would not be wasting your time if you read more about Ray on his blog rayslittleride.com. It wasn’t a little ride!
He wrote every month and IT really should be made into a film, not my blog. It was all about his life and there always was a theme. Gripping stuff!
I will never forget him and his last post. Start at the bottom and enjoy a life of adventure.
Then there was Jim, a fellow resident of our village who phoned me two years ago to say he had also been diagnosed with MND!
Jim’s Disease progression was rapid and he was taken from us in April 2017. However, in the short year I knew Jim I made a great new friend along with his family. Jim was the sort of person you wish you’d met 20 years ago.
I remember him in my post Mr Blue Sky!!!
Back to the subject of Man Utd fans, another new friend is David Setters. A fellow MND advocate, we have found friendship in challenging the status quo with awareness. Despite supporting Manchester United he is alright!To be honest Dave, I don’t know how we met!! I think it was at a Parliamentary reaction in 2016, which I reported in Take a Little Trip Back…
Dave is still firmly with us. Like me, his support of football teams is an Achilles’ heel. Although, as an Arsenal fan having yet survived another year with this darn disease does mean I have been exposed to yet another season of complete and utter failure!! Thank you, lads!
Fast forward to now and June 2018, I have made yet another new friend, Dr Peter Scott Morgan.
Later this week, as part of the MND Awareness Month, Peter is going to be a guest blogger on my site! Oh yes, I am just like Michael Parkinson, I now have guests! I feel honoured.
Like me, he has MND. He was diagnosed in 2017.
Also, like me, he is passionate about life, and awareness of this disease.
He is currently standing to be a trustee of the MND Association (MNDA) this month, and for those who haven’t voted, Peter is EXACTLY the sort of representation we need on the board.
I will blatantly show my support for Peter! Vote Peter! Vote now!
He is bold, and would constructively inspire the association every day. Our superb association works tirelessly with our very best interests at heart, but it can’t be expected to plough the tough furrow alone. Peter, is the author of “Unwritten Rules of the Game” (http://www.scott-morgan.com/blog/life-before-mnd/associated-books/the-unwritten-rules-of-the-game/ )
His manner of thinking and reasoning could help shape the organisation as we move forward.
In particular, Peter is a strong proponent of Hi-Tech in helping the human species in living and thriving.
Considering the brutal fact that Bio-Technology and Medicine has bought us absolutely no (zero) advances for MND patients for over 25 years, the merging and blending of Hi-Tech with Bio-Tech is almost a foregone conclusion now.
Peter will give you an insight into his world, mine, and the lives of about 200,000* people today in the UK who will go on to develop MND in their lifetime and how Hi-Tech can help us thrive.
* yes you didn’t read incorrectly. 1/300 of us will develop MND in our lifetimes, so that’s 200,000 of us walking and breathing in the UK right now! Oh sorry, excluding Peter, Dave and I, as we already have it!
His blog is to be entitled,
“Weapon of Choice – Too?”
a sequel, or companion piece, to Weapon of Choice? my recent research post.
And just to bring things full circle, it turns out that Peter and I were at Imperial College in South Kensington, London studying at exactly the same time in the 1980s! A small world!
For those of you who may be surprised that Lord Bragg has not been mentioned, fear not. He is back as a sponsor of a new post in his role as owner of Bragg’s Auto Repairs. He is currently away in Russia for the World Cup where his software company is providing automatic and instant language translation services for referees!
Watch this space readers! The guest post will appear very soon and a regular onein400 post this Friday.