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
4365 comments
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HOW TO RECOVER LOST BITCOIN ONLINE
BITCOIN RECOVERY EXPERT FOR HIRE WITH DECENTRALIZED CODEX SECURITY It started with a recommendation from Britney, someone else in the crypto community who had faced similar challenges. She spoke highly of Decentralized Codex Security and their success in recovering digital assets. Feeling anxious about my own situation—locked out of my Bitcoin wallet—I decided to reach out to them, hoping for a solution. From the very first contact, their team was responsive and professional. I explained my issue, provided the necessary details, and they moved quickly to assess my case. What stood out was their clarity and patience throughout the process. They guided me step by step, demystifying what felt like an overwhelming technical ordeal. Before long, they successfully generated a new private key, restoring my Bitcoin access. It was a huge relief—a moment that turned worry into reassurance. But their expertise doesn’t stop there. I learned that Decentralized Codex Security also specializes in tracing stolen cryptocurrency and investigating fraudulent investment schemes. Their work goes beyond recovery; it’s about ensuring accountability and security in the digital asset space. For anyone in Canada or elsewhere struggling with crypto loss, fraud, or access issues, I can sincerely recommend Decentralized Codex Security. They are trustworthy, skilled, and committed to helping people regain what’s theirs. If you’re facing a similar challenge, don’t hesitate to contact them. There is a way forward. Decentralized Codex Security
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