So how was it for you?  Part 2 - Safety First

So how was it for you? Part 2 - Safety First

Before I start my story of the race I want to tell you about some of the changes we needed to make this year, and the reasons behind them. A year is a long time with MND, so whilst I count myself fortunate that my progression has been relatively slow over the last four years, there have still been changes, and those changes definitely meant that this year's attempt carried a much higher level of risk than 2023. Buckled wheels frankly, were the least of my concerns.

Over the preceding 12 months I've become weaker and more prone to fatigue (didn't think it was possible!), with the weakness primarily manifesting itself in my bulbar muscles. Those around my mouth and jaw. The symptoms this presents which caused concern were:
1. I can no longer swallow so am more prone to choking episodes
2. I can't control my saliva production so at home I need regular (every 10-15 minutes) suction otherwise I can choke on my own spit
3.I can no longer hold my jaw closed so without support the air from my ventilator goes into my nose and out of my open mouth, forgetting to enter my lungs
4. Whilst I can still verbally communicate my speech is quiet and slurred
5. Clearing my chest of secretions can be more difficult than in the past

So then... all that considered... still up for a marathon? Don't see any reason why not!

The first thing was to try and get myself in as good a state of health as possible by: sleeping a lot (failed miserably), keeping my chest healthy (success), and always staying fed and hydrated (success). Two outa three ain't bad.

Next is to get practising and experimenting with my saliva suppression medications. The goal being to try to find the right combination to produce as little saliva as possible. Which for me turns out to be a travel sickness patch behind my ear, a single eye drop under my tongue and liberal application of Nivea lip balm... Who knew?!

Keeping my jaw shut is achieved firstly through the use of the unnecessarily exotically named "Miami" neck collar. Oh what I would give to have been a fly on the wall in that marketing meeting. For the record wearing the collar doesn't give me a sense of being ready to share a beach or a fashionable nightspot with the beautiful people of South Florida, but maybe that's just me. Anyway we combine the collar with home made chin and neck straps.

Communication is a tricky one because London is a loud event and I certainly can't shout over the crowd when I need assistance. So I get my problem solving hat on and start researching Walkie-Talkies. I find some that are light enough to run with, have an excellent battery life, can be permanently connected to an earpiece, and have the VOX function which allows me to broadcast to Tom just by speaking, no need to push a button.


Finally we need to take my suction machine round the course with us, but the battery life isn't the best. The new flat bottomed buggy along with a portable power bank so we can stay powered up soon solves that problem.

 

Take the Dream Team through how to use all of the equipment, then sort out a series of yes/no questions so I can effectively communicate what I need in a noisy environment. I think we're going to do this thing!

If you feel inspired to help us fund more vital research, you can donate here.

Thank you so much for reading.

Sam x

29 comments

When I lost my money to online scammers through crypto investment, I never thought I could ever retrieve back my money again but I decided to give it a try after my Inlaw introduced me to this incredible honest hacker that she had worked with to retrieve back her bitcoin when she mistakenly sent it to a wrong wallet address when trying to make payment to someone, so when I brought up the issue of me loosing money to an online investment in a dinner at my place she was curious to hear how it happened and it turned out she still had the hackers contact which she provided me with later on, I reached out to them the next morning and provided the transaction hash, wallet address of the scammers and the website, I was surprised after receiving the first half of my money within just 48 hours and the rest is being traced back to the second wallet address I made payment to, Jamesmckaywizard and his team brought back my hope of living back to life because I never thought of what I could have done if I wasn’t able to recover this money back, this includes my retirement funds, I’m so grateful to the team for their effort and good service, if you’re encountering same issue kindly reach out to them on the provided details bellow:
Email: jamesmckaywizard at gmail dot com or WhatsApp +31… 657…. 4462….48.

Mega Nico

Visual Hacker that always gives a perfect job. I needed a Hacker who can help me recover my investment plans, When they denied me the withdrawal of my investment, I saw a testimony about a Great Visual Hacker by name Jamesmckaywizard i didn’t waste time so I contacted him on jamesmckaywizard at gmail dot com or WhatsApp +31657// 446248. He asks for the necessary information and proof that i was scammed, I sent it to him within a maximum of 48hours he was able to give me all the breakdown of my funds and he recovered my funds successfully. I was finally able to purchase my dream house and I would want anyone in need of a competent hacker to reach out to them for various type of Hacking. Mobile spy, Phone Hacking, Bitcoin Hacking/Recovery, Account Hacking, Snapchat Hacking, Instagram Hacking. He is the perfect HACKER

Smart Progress

🔊Selling Fullz/ leads/ Database
Freshly updated 2025 available in bulk quantity

USA-UK-CANADA FULLZ
💳USA DL Photos SSN + Selfie
💼 Business owner leads
💸 Payday leads
💵Sweepstakes
💰 Loan leads
🎰 Sweepstakes
🏠 Home owner leads
👲 Employee leads
🏦 USA Bank leads
📧 Email leads
🕵️ Personal detail info USA/UK/Canada/Australia/Spain/Germany…etc
☎️ Phone number leads
📩 Email combos
🏫 Mortgage leads
🪙 Crypto database
🎰 Casinos database
📈 Forex database
📊Stock Market Trader leads
💎All Premium data Available

#fullz #usafullz #canadafullz #SSNFULLZ #SSNleads #UKfullz #ninleads #ninfullz
#fullzusacanadauk #deadfullz #kidfullz #youngageleads #dlscanusa
#realdlusa #realpassport #usadlscans #canadaDL #UKDL

Contact us for deals & discounts
What’s App –> (+1605)–846–1870
TG Chanel –> t.me/bigdatatrader
Tele Gram –> @ Fullzpros
Email –> Harrynelson03 at protonmail.com

Harry

My husband left me for another woman a few months ago and ever since then my life has been filled with pain and agony because my husband was my first love whom I have spent my entire life with. A friend and also a colleague from work told me he saw some testimonies of a spiritual counselor called Doctor Muna, He can bring back lover within some few days. Ridiculously, I laughed it out and said I am not interested. But for friendship’s sake, she consulted this God sent man on my behalf and to my greatest surprise, Immediately after 12 hours, my husband called me for the very first time for over 7 months saying “I miss you babe and I’m so sorry for everything I made you went through” I couldn’t say a word but cried over the phone and hanged up. We are back together and living Happily together again. To be honest, I still can’t believe it, because it’s highly unbelievable. Thank you DOCTOR MUNA for bringing back my love and also to my SELFLESS FRIEND. Laura, who interceded on my behalf. For anyone who might need help of this wonderful spiritual counselor, here is the email address: marvelspelltemple@gmail.com, Also add him on WhatsApp: +2347035449257

Carrie Alfred

I’d like to recommend the Morphohack Cyber Security team if you ever intend to recover your Bitcoin, USDT, or other crypto assets.
I happen to be one of many people who lost their crypto assets after a distasteful experience with a fake crypto investment scam. They kept requesting more deposits in order to “grant” me access to my wallet. If not for the intervention of the Morphohack Cyber Security team, I would have lost everything completely.
Morphohack intervened on my behalf and began what seemed to be a full recovery process and a cyber attack on these con men.

I’m putting this out here to share my plight and encourage others to act quickly and contact Morphohack if you happen to be in a similar situation. Do not believe that by paying more, you’ll be granted access to your wallet by these investment scammers. Instead, contact the Morphohack Cyber team to help you recover your crypto assets immediately.

Their contact email is as follows: MORPHOHACK@CYBERSERVICES . COM

Warm regards,
Ross Colby
Kent, Connecticut

Ross Colby

Leave a comment