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
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