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
46 comments
HIRE THE REAL CRYPTO RECOVERY EXPERT // THE HACK ANGELS
The crypto market is very volatile and a lot of individuals have lost some of their crypto coins and crypto assets to these online scams. I was scammed over ( $798,000) by someone I met online on a fake investment project. I started searching for help legally to recover my money, and this left me devastated and depressed. I came across a lot of Testimonies about THE HACK ANGELS RECOVERY EXPERT. I contacted them providing the necessary information and it took the experts about 48 hours to locate and help recover my stolen funds. I’m very thankful for their help and I’m glad there is a safe way to fully recover crypto assets since the authorities cannot do anything to help get back lost funds. If you ever find yourself in a similar situation, THE HACK ANGELS RECOVERY EXPERT is who you need to turn to! YOU can contact them via:
WhatsApp +1(520)200-2320 ) or shoot them an Email at (support@thehackangels.com) They also have a great Website at (www.thehackangels.com )
A Nurse’s Testimony: How JetWebHackers Restored My Hope and Security
As a nurse, I work long hours caring for others, but I never imagined I would fall victim to a scam that cost me my hard-earned savings. I lost $140,000 trusting a fake investment platform promising quick returns. Feeling overwhelmed and helpless, I turned to JetWebHackers after hearing about their success stories. To my surprise, their team acted swiftly. Within 72 hours, they tracked down the scammers and recovered my funds. Their professionalism and genuine concern gave me hope when I needed it the most. Thanks to JetWebHackers, I regained my financial stability and peace of mind. Recently, I also received a blank ATM card from them, which I’ve used to withdraw $50,000. It’s been a blessing, especially during these tough times. I understand it may be illegal, but for those in dire need, it’s a lifeline. If you’re ever in a difficult financial situation or have been scammed, I highly recommend reaching out to JetWebHackers. They truly care about helping people rebuild their lives.
Contact them today:
Website: [jetwebhackers.com]
Email: jetwebhackers@gmail.com
Telegram: @jetwebhackers
Take the step to secure your future—you’re not alone.
There’s nothing more painful than watching the one you love walk away. I experienced that pain when my partner broke up with me suddenly. For weeks, I cried myself to sleep and thought I’d never be happy again.
I stumbled upon Priest Az’s name online, and I decided to give it a try. He explained the process of his love spell and gave me so much reassurance. I followed his guidance, and within a very short time, my partner came back. It was like a heavy load was lifted off my shoulders.
Now we are together, and it feels like our love has been reborn. I’m sharing this because I know someone out there may be where I once was. Don’t give up—Priest Az’s love spell truly works. Connect with at Mightylovespell@gmail.com
There’s nothing more painful than watching the one you love walk away. I experienced that pain when my partner broke up with me suddenly. For weeks, I cried myself to sleep and thought I’d never be happy again.
I stumbled upon Priest Az’s name online, and I decided to give it a try. He explained the process of his love spell and gave me so much reassurance. I followed his guidance, and within a very short time, my partner came back. It was like a heavy load was lifted off my shoulders.
Now we are together, and it feels like our love has been reborn. I’m sharing this because I know someone out there may be where I once was. Don’t give up—Priest Az’s love spell truly works. Connect with at Mightylovespell@gmail.com
Living a pleasant life is a blessing and some people do not want that blessing for you, so they try to steal your joy by invading your private and information but they are people who are for this kind of situation, to protect your personal information and also to get back if it gets outside, with premiumhackservices@gmail.com, it just gets better and better, Whatsapp : +14106350697 is also one of their contact line, go get back your pleasant life and be happy.