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
3409 comments
๐๐ซ๐ ๐๐จ๐ฎ ๐ ๐๐๐ฅ๐ข๐ง๐ ๐๐๐ญ ๐๐จ๐ฐ๐ง ๐๐ฒ ๐๐จ๐ฎ๐ซ ๐๐จ๐ฏ๐๐ซ, ๐๐ซ๐ ๐๐จ๐ฎ ๐๐ง ๐ ๐๐ซ๐ข๐ง๐ค ๐๐ ๐๐ข๐ฏ๐จ๐ซ๐๐ ๐๐ซ ๐๐ฅ๐ซ๐๐๐๐ฒ ๐๐ข๐ฏ๐จ๐ซ๐๐๐? ๐๐ซ๐ ๐๐จ๐ฎ ๐๐๐๐๐๐ง๐๐ ๐๐ซ ๐๐๐ฉ๐ซ๐๐ฌ๐ฌ๐๐ ๐๐ฎ๐ ๐๐จ ๐๐ก๐ ๐๐๐ฉ๐๐ซ๐๐ญ๐ข๐จ๐ง ๐๐ข๐ญ๐ก ๐๐จ๐ฎ๐ซ ๐๐๐ซ๐ญ๐ง๐๐ซ, ๐๐ซ๐ ๐๐จ๐ฎ ๐๐ข๐ฌ๐๐ฉ๐ฉ๐จ๐ข๐ง๐ญ๐๐ ๐๐ง ๐๐ก๐๐ญ ๐๐/๐๐ก๐ ๐๐ฌ ๐๐จ๐ข๐ง๐ . ๐๐จ๐ฎ ๐ ๐๐๐ฅ ๐๐ซ๐จ๐ค๐๐ง๐ก๐๐๐ซ๐ญ๐๐ ๐๐จ๐ง๐๐ฅ๐ฒ ๐๐ฆ๐จ๐ญ๐ข๐จ๐ง๐๐ฅ๐ฅ๐ฒ ๐๐ข๐ฌ๐๐จ๐ง๐ง๐๐๐ญ๐๐. ๐ ๐ซ๐ฎ๐ฌ๐ญ๐ซ๐๐ญ๐๐ ๐๐๐๐๐ฎ๐ฌ๐ ๐๐ ๐ ๐๐ซ๐๐๐ค ๐๐ฉ/๐๐ฑ๐ญ๐ซ๐๐ฆ๐๐ซ๐ข๐ญ๐๐ฅ ๐๐๐๐๐ข๐ซ, ๐๐ข๐๐ ๐๐ฌ ๐๐จ๐จ ๐๐ก๐จ๐ซ๐ญ ๐๐จ ๐๐ ๐๐ง๐ก๐๐ฉ๐ฉ๐ฒ. ๐๐ก๐ข๐ง๐ค ๐๐๐จ๐ฎ๐ญ that. ๐๐จ๐ฎ ๐๐๐ฌ๐๐ซ๐ฏ๐ ๐๐ญ๐ฆ๐จ๐ฌ๐ญ ๐๐๐ฉ๐ฉ๐ข๐ง๐๐ฌ๐ฌ ๐๐ง๐ ๐๐จ๐ฏ๐. ๐๐ก๐ข๐ฌ ๐๐ฌ ๐๐จ๐ฎ๐ซ ๐๐จ๐ฅ๐ฎ๐ญ๐ข๐จ๐ง
โฌ
dromoru46@gmail.com
โฌ
https://wa.me/message/2UQFBZC6LVJWN1
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