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
https://raindrop.io/nondiamomd1/diamond-12-1-69-65405752
https://mastodon.social/@bluerocker01/115881312992440842
https://guyanahub.com/post/8250
https://guyanahub.com/post/8251
https://guyanahub.com/post/8252
https://diamondlnwpg168.com/
https://opensource.ieee.org/-/snippets/94
https://raindrop.io/nondiamomd1/diamond-12-1-69-65405752
https://mastodon.social/@bluerocker01/115881312992440842
https://guyanahub.com/post/8250
https://guyanahub.com/post/8251
https://guyanahub.com/post/8252
https://opensource.ieee.org/-/snippets/94
https://diamondlnwpg168.com/
https://raindrop.io/nondiamomd1/diamond-12-1-69-65405752
https://mastodon.social/@bluerocker01/115881312992440842
https://guyanahub.com/post/8250
https://guyanahub.com/post/8251
https://guyanahub.com/post/8252
https://opensource.ieee.org/-/snippets/94
https://diamondlnwpg168.com/
https://raindrop.io/nondiamomd1/diamond-12-1-69-65405752
https://mastodon.social/@bluerocker01/115881312992440842
https://guyanahub.com/post/8250
https://guyanahub.com/post/8251
https://guyanahub.com/post/8252
https://opensource.ieee.org/-/snippets/94
https://diamondlnwpg168.com/
https://superprofile.bio/thaipanor28971
https://superprofile.bio/thaipopdipdip
https://superprofile.bio/acadexthai
https://superprofile.bio/ohmyghost11
https://superprofile.bio/thaidivalavie
https://superprofile.bio/thaimuepuen
https://superprofile.bio/thaitakhon
https://superprofile.bio/thaiteeyairerkdaojone
https://superprofile.bio/mubankhokalok
https://superprofile.bio/myboo23278
https://superprofile.bio/4tigers
https://superprofile.bio/hostthai
https://superprofile.bio/thaiourhouse
https://superprofile.bio/bryanbellthai
https://superprofile.bio/lakkanwantai
https://superprofile.bio/thaiteeyod3
https://superprofile.bio/mortecucinathai
https://superprofile.bio/thaiomukade
https://superprofile.bio/returntosilenthillthaidub
https://superprofile.bio/undercrrentthaidub
https://superprofile.bio/mercythaidub
https://papaly.com/categories/share?id=1ba0e1ecf2e84fcfbf39b4a0fbd487ee
https://raindrop.io/herbertlawson034/hksdfksd-65809511
https://flipboard.com/@herbertlawson/bkdjidf-0fgke2tcy
https://x.com/paticianita/status/2013522664841715830
https://x.com/paticianita/status/2013659532736500116
https://forum.phuongnamedu.vn/threads/bcjsdisjsokf.205611/
https://contra.com/community/cmkmv2ndx00003576h13g575p
https://contra.com/community/cmkmv2yy400013576q5cd8rsk
https://www.ths.ac.th/question/nvksdvidsfds/
https://www.gemtracks.com/job/skdlfmsfdsdfds-91133/
https://connect.usama.dev/posts/65633
https://multy.me/KJtQ1
https://multy.me/OkVrn
https://ok.ru/profile/910136721401/statuses/157247979061497
https://herbalmeds-forum.biolife.com.my/d/373564-usidjfsidkfds
https://guyanahub.com/1761632407531195_103106
https://guyanahub.com/post/8446_https-superprofile-bio-thaipanor28971-https-superprofile-bio-thaipopdipdip-https.html
https://prasatnas.com/posts/258198
https://diendannhansu.com/threads/nvisjikdfcsdfs.889443/
https://community.wongcw.com/posts/1201522
https://www.TwosApp.com/696fbf4ddc598cbe569e3e07
https://forums.siliconera.com/threads/udkfsldfmksdf.142232/
https://bsky.app/profile/herbertlawson034.bsky.social/post/3mcupxbtee22j
https://bsky.app/profile/herbertlawson034.bsky.social/post/3mcupxxmlus2j
https://lebanonhub.app/posts/796871
https://mastodon.social/aubriella/115928724652775581 https://tooter.in/herbertlawson034/posts/115928727882571524 https://www.audacity-forum.de/index.php?thread/21733-dssgfdrgsdfg/ https://hub.vroid.com/en/characters/5912480403166706631/models/2555004316258391312 https://chobaolam.vn/threads/sijmlsdfdsfds.845331/ https://tempel.in/view/AEUs https://minecraftcommand.science/forum/discussions/topics/iajsdoaldsadsadsa https://start.me/w/86Lepa https://chouseisan.com/s?h=8457c543d07843d894d7949202f3ea0c https://nichey.net/post/328228_https-superprofile-bio-thaipanor28971-https-superprofile-bio-thaipopdipdip-https.html https://scrapbox.io/iusdhjfisdfsdf/iusjdfosdfdfd https://abrir.link/pSGlX https://matters.town/a/5mkq26o5w46h http://www.chokeng.co.th/webboard/topic/508978/ianhsudaisddd https://businessboostier.mn.co/posts/96751482 https://wokwi.com/projects/453692033887391745 https://medium.com/herbertlawson034/oisjdfsidlfsdfsdf-a6e290a747e4
https://hackmd.io/@0hu9d8Z2TC2u2bktU8K3Pw/Sy86DBTHZx
https://magic.ly/ikandksadasd/usijdfodfkfdjfdf
https://oplaste.readme.io/reference/bcskmdcksd