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
2206 comments
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Hello my name is Kelly from Mississippi USA i want to tell the world about the great and mighty spell caster called Prof Ibrahim my husband was cheating on me and no longer committed to me and our kids when i asked him what the problem was he told me he has fell out of love for me and wanted a divorce i was so heart broken i cried all day and night but he left home i was looking for something online when i saw an article how the great and powerful spiritual Prof Ibrahim have helped so many in similar situation like mine his email address was there so i sent him an email telling him about my problem he told me my husband will return back to me within 24hrs i did everything he asked me to do the next day to my greatest surprise my husband came back home and was crying and begging for me to forgive and accept him back he can also help you contact
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Hello everyone my names are Cindy Chacon from the united states, I want to use this golden psychic medium to appreciate Prof Ibrahim a great powerful spell caster for helping me retrieving back my relationship with my ex lover when she ended and turned back on me for quite a long time now (9 months ago). He performed an active spell for me and within 48 hours after the spell had been casted I received a text from my ex saying that she is sorry for the pains and tears that she had caused me and that she will not do such a thing to me again in her life. I was surprised but later accepted her back again. Anyone that is in the same line of problem or different one that wants to contact a spell caster should happily contact Prof Ibrahim now on this email address.profibrahim98@gmail.com or message him through his Whatsapp +27785149508 /visit his website for more services,https://africanacientspellscaster.com
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