On the 29th of May , 2012 I (Mark Samson) was formally nominated in the category Reality – MND (Motor Neurone Disease ) Nomination into this category of life is unexplained. I have joined 5000 fellow nominees in year 2012. We are all here by no choice of our own. 5 of us will drop out of this category daily, having failed to make it past the post. So what are the characteristics of MND that qualifies for entry 
So I now want to “put down in words how wonderful life is ” (Elton John – http://www.eltonography.com/songs/your_song.html).
The words of this song ring through my head.
As part of the June 2014 MND awareness month, over the next few weeks I want to tell you about how my journey in this reality has been guided by special people and organisations in my life.
They have enabled me to be loved, comfortable, positive and relaxed. If you want to know more about me the person see ABOUT
In this category as in real movies, the movie has stars and you are introduced to them at the start. At the end of the movie , the credits roll by naming all those special participants. But in this case the movie is only complete when the lead has died. So the recognitions are only apparent at that instance. I wish to recognise all those right now.
Let me begin by setting the scene as it is now, 2 years into my official diagnosis (May 29, 2012) , 10 months after my first visible symptoms , left foot drop. I am currently wheelchair bound, no core strength from neck down. Use of my arms is limited. Use a ventilator for 12 hours a day. I can still eat soft foods, talk softly., wash myself . My wife, Gail , is my full time carer, wife.
The support I have is illustrated below and in my opinion in the times we live with no medical cure for Motor Neurone Disease (MND) is the most effective way to deal with this challenge
In my place
Family and friends
I am privileged to have really special support. Not all MND patients are fortunate enough to have this love, care, concern and comfort around them. They form the barrier between the reality of this disease and the mnd lead allowing me to live a family life. From my wife of 32 years who provides 24x 7 caring, love and comfort to my children , extended family and special friends , I cannot express my true love for them. These special people also need support, as I see them bottle up their emotions in my presence. I feel their pain and wish to tell them to take comfort that we have support out there.
Support organisations
Motor Neurone Disease Association (MNDA)
From the day I was diagnosed and I called the MNDA connect line, the support has been amazing. It was not long after my consultant told me to contact them, that the regional care supervisor , Helen Hawkins and the association visitor arrived at my home to talk to us. They provided us with an invaluable information pack and advise to set us up on this reality show. We joined our local MNDA Southwest Surrey branch. Participating in their activities has helped us keep a realistic view as well us the opportunity to meet extraordinary volunteers and fellow MND families. The MNDA work of funding clinics, research , equipment is a huge effort. All of this is funded through fundraising and volunteer work. We as a family have benefitted from this. They are part of our family now .
Hospice Phyllis Tuckwell
I i was referred to PTH by the Mnda association visitor. The thought terrified me. When I walked through the entrance my perceptions where immediately changed. The compassion, listening caring and help provided is beyond any persons expectation. The occupational, physio and complementary therapy provided to me and my carer (my wife) is a relief from the stresses and strains of MND. Again most of their existence is self funded and deserving of support.
NHS
Our experience with the NHS has been great, despite many reservations I have heard from other MND families. My consultants at Frimley Park hospital have provided us with all possible treatments , referred me to Oxford Mnd clinic where I participated in the DIPALS trial under Prof Talbot. Our GP and district nurse have also provided a good service. Ancillary services such as Wheelchair were great.
Social Services, Surrey Heath
It took a long time to get into the system . It needed help from MNDA and hospice. But once this was done , it went all smoothly.
Spiritual and faith (High Cross Church, Camberley)
The church community has been a pillar of strength, especially to Gail. Gail has volunteered as a pastoral visitor for past 5 years. Since my diagnosis , the support and prayer continue to be a source of strength and faith to the family. Whatever your faith, believes, religion respect , love and tolerance is core values to be learnt.
Motability
Little known charity that provides a unique service to immobile people. I acquired my wheelchair vehicle through them. It has provided us with a life enhancing function, which allows us quality of lifestyle.
Employers (Michael Page )
I have worked for them since 2008. My role as Group Finance Systems manager allowed me to work and meet many great people around the world.
I felt that I was working in a company that has been nominated in last few years as “top 100 company to work in”
From the time of diagnosis to my ‘medical leave’ the support and help have helped our family . They continue to support us .
My colleagues , I miss those great times we had. The work place was my second family.
If all companies demonstrated such an exemplary social care, it will make the world better.
Social Media and Technology
See link post. Click on title.
Samson & Motor Neurone 