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
3281 comments
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Good day viewers, I wish to share my testimony with all of you. I have daily 9 to 5 jobs, but while I work, I try my luck at playing instant Lotto. On this particular day, I decided to seek help online regarding tips for winning the lottery, and I saw many individuals testifying about Meduza spells. I reached out to him and informed him that I needed help to win the lottery, and he clarified the process to me, stating that after he casts the spell, it will take 48 hours for him to provide me the winning numbers, which I accepted. I followed all his instructions, and he provided me with the numbers to enter the Lottery. After the draw the following morning, I received a notification on the Lottery app on my phone indicating that I was the lucky winner of $273 million on the New Jersey Lottery and I’m here to extend my heartfelt gratitude to Meduza. If you seek for assistance in any aspect of your life, WhatsApp Meduza via +1 807 907 2687 or Email: lordmeduzatemple@hotmail.com
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