Staying away from home with late stage MND is an absolute mission. Specialist accommodation is massively rare so I stopped looking for accommodation that has everything I need a long time ago. Instead I find places that have enough space and hire or travel with all my equipment. To give you an idea my packing list for this trip had 76 items on it...
Of course I can't physically help to pack any of that, and trying to control too much of the process is a very fast path to massive frustration. However its not easy to let go when so much of that equipment is essential to keeping me alive and cared for, I need to have a lot of trust in my care team and thankfully I do.
Then of course there are the people who will physically push me around the London Marathon. Taking responsibility for my care at the same time. Not only do they have to be physically fit enough to comfortably run 26.2 miles, they have to monitor me and provide any interventions I may need. Distance running is traditionally a solo pursuit, taking on responsibility for me as well is a heroic effort in my view.
Then there are the people who organise the administrative side, the logistics and the publicity. Making sure all my equipment is where it needs to be, everyone has their accreditation, and that we raise some cash for research and care too.
In total that covers around 12 people. The vast majority of whom are unpaid. Those who are paid receive a fraction of what they deserve (that's a whole other blog post) and go above and beyond to help me a
ttempt these ridiculous challenges. Those 12 people are just the tip of the iceberg, my family, friends, trustees and of course all the amazing people who follow and support the charity all have my heartfelt gratitude. I don't really know how I've created this incredible support, or why so many people are willing to give up their time and energy to support me and the charity. It's beyond anything I hoped for or anticipated when we started Stand Against MND and I'm humbled by it.
It gives me the will to carry on, a purpose. Helps me maintain a positive attitude whilst being assaulted by the most brutal disease. Thank you. Every single one of you.
If you feel inspired to help us fund more vital research, you can donate here.
Thank you so much for reading.
Sam x
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I’ve always believed I had a good head for business. My wife, Tina, and I built a successful company in the Netherlands over two decades. By the end of 2024, we were ready to slow down—early retirement, smarter investments, and time to enjoy life.
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Even when I dated my wife for years, cohabited with her and vetted her thoroughly and ensured her family accepted me to part of them, the fact that ferminity is mallaeble came to play out in my marriage. She had some close friends who were single and most are still single till date. They had a huge influence on my wife and that alone always made us had issues. Eventually she left me and i had to seek help from Dr Isikolo knowing he is capable of restoring the love and happiness we shared and to also get her back to me. I complied with everything Dr Isikolo told me and my wife came back home with regrets of paying attention to fake friends and we are happy together again now. You can read about his works on his page (https://isikolo-temple.com) or might as well text him via WhatsApp on: +2348133261196
In this heartfelt piece, the strength found in community and support while battling motor neurone disease is beautifully expressed. It makes a powerful point that shared compassion and care often strengthen resilience.
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