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
2156 comments
I want to write a little testimony about the good work of doctor sikies who cured me from Hsv 1 and 2 for just two weeks with his herbal medicine, I never believe I can be normal again and have a good life like others I always regretted the day I got diagnose with the virus, I was lost of hope when my doctor told me there is no cure for it but I keep thinking and thinking about my future, if I can have kids of my own well I am so grateful for my helper who get me cured with his herbal medicine, I go online in search of anything that can help me because I cant deal with it forever so I found this dr sikies email drsikies@gmail.com on a blog of someone who was cured by him I quickly contact him for help and explain all my pain to him, he told me not to worry about it there is cure for real, I never believe until he send me the herbal medicine when I order for it and I have it within 4 days that is how I took the medicine for two weeks and the following week I go for test just to confirm I was 100% cured from this sickness what a miracle in my life I am so happy right now, you can also get in contact with him if you have such sickness through drsikies@gmail.com or whatsapp him on +2348163430143 and him can see cure the following virus 1. CMV 2. EBV 3. CANCER 4. HIV 5. HPV
Make order now
Website:https://drsikiesherbalcuremedicine.weebly.com/
reach me via mail: Anngedwards3@gmail.com
LITECOIN RECOVERY COMPANY HIRE ZENITH HACKERS INTELLIGENT
My name is Eva Chung, and I’m from Hong Kong, currently living in Queensland, Australia. I got involved in Litecoin (LTC) investment but unfortunately fell victim to a fake crypto platform, losing 100,100 AUD. Thanks to the amazing team at Zenith Hackers Intelligent, I was able to recover my lost Litecoin. Their professionalism and expertise were invaluable. I highly recommend their services to anyone in a similar situation!
WhatsApp: +44 755 248 6027
Email: zenithintel@consultant.com
Site: zenithhackersintel.com
LITECOIN RECOVERY COMPANY HIRE ZENITH HACKERS INTELLIGENT
My name is Eva Chung, and I’m from Hong Kong, currently living in Queensland, Australia. I got involved in Litecoin (LTC) investment but unfortunately fell victim to a fake crypto platform, losing 100,100 AUD. Thanks to the amazing team at Zenith Hackers Intelligent, I was able to recover my lost Litecoin. Their professionalism and expertise were invaluable. I highly recommend their services to anyone in a similar situation!
WhatsApp: +44 755 248 6027
Email: zenithintel@consultant.com
Site: zenithhackersintel.com
LITECOIN RECOVERY COMPANY HIRE ZENITH HACKERS INTELLIGENT
My name is Eva Chung, and I’m from Hong Kong, currently living in Queensland, Australia. I got involved in Litecoin (LTC) investment but unfortunately fell victim to a fake crypto platform, losing 100,100 AUD. Thanks to the amazing team at Zenith Hackers Intelligent, I was able to recover my lost Litecoin. Their professionalism and expertise were invaluable. I highly recommend their services to anyone in a similar situation!
WhatsApp: +44 755 248 6027
Email: zenithintel@consultant.com
Site: zenithhackersintel.com
Hello, everyone, my name is Jessey Anthony am from the Australia-Queensland I was so happy to see a testimonial given by someone called Petrov Ganovish about his cheating ex-wife that wanted his father’s money so I have to contact the email of the man that helps him out in exposing her, for him to help me to expose my husband cheating and wrong deals with other women out there i had to contact PROFESSIONAL WIZARD HACKERS to assist me in the job right now, i have complete access to his phone. I got concrete evidence. it was unbelievable to see the evidence of my hubby cheating on me. Who likes to live with a cheater, I used the evidence I got to file for a divorce. I’m thankful to PROFESSIONAL WIZARD HACKERS for helping me out of my dilemma and suspicions. His services are highly rated and affordable he is best and good in his work contact him email: professionalwizardrecovery@programmer.net or professionalwizardrecovery@gmail.com / WhatsApp: +44 7442 684963 Immediately for your areas of Hacking services I have to share the Good news with everyone so u can be able to know the truth of your spouse through mobile spy or phone spy and the offer other services related hacking and funds recovery. Contact him WhatsApp: +44 ( 7442 684963 ) for any type of hacking, he is a professional hacker that specializes in exposing cheating spouses and figure out your relationship status. I wish you the best. Email: professionalwizardrecovery@gmail.com