Taking Part in a Clinical Trial
Hello peeps and welcome to the first of my blogs about the Neuromodulation trial. First, a quick introduction to me – I’m Tara Stewart and on July 29th 2014 I fell off a horse and landed awkwardly and unluckily on my head at an angle that snapped my neck at C6/7, dislocated 13 vertebrae and bent my spinal cord into an ’s’ shape.
Obviously, this was less than ideal as a way to pass a Tuesday morning and saw me add time in a coma, time on a ventilator and LOTS of time in a spinal unit to my bucket list. If you’d like to read some more about those ‘adventures’ then you can find my A Fox Lake blog here: https://www.buckinghorses.co.uk/a-fox-lake-blog/the-beginning/
I left hospital in April 2015 in a wheelchair and classified as an incomplete C6/7 tetraplegic with “no hope of recovery” according to my consultant but, stubborn to the last, I have since thrown myself into lots of physical rehab.
Six years of that has seen me recover strength and a small amount of function but nothing material enough to make me independent so I was delighted to get the opportunity to be experimented on with electricity for a year to see what happens.
My First Week
My first week consisted of three days of being assessed which involved a combination of lots of tests. I sucked and blew into a spirometer to test my lung function, attempted fine motor functions like moving small pegs, turning keys in locks and attempting to attach smaller and smaller nuts onto screws, stuck out my arms at various angles and had physios lean on them to see how strong I was, performed a high-risk water pouring manoeuvre in which all nearby were in danger of getting soaked and last but not least, underwent a full ASIA assessment.
For those who don’t know the latter, this involves a doctor taking a sharp and a blunt instrument and then sticking both of them in you in a random order in random places all over to see what you can feel and whether you can tell the difference between sharp and blunt sensation – or as I put it “Ow!’ and “Blunt” sensation. It is quite sharp. Movement is also assessed. I was declared as unusual and patchy by the doctor. Make of that what you will. Officially I classed as an ASIA C.
The trial consists of 120 stimulation sessions combined with rehabilitation exercises and I will be assessed again after 20, 40, 80 and 120 sessions. Disappointingly, from a dramatic point of view, the electrical stimulation is delivered through electrodes on the skin rather than a bolt through the neck and lightening, Frankenstein style.
As I’m a tetraplegic, we are stimulating the spine in the cervical, thoracic and lumbar areas with the level depending on the exercise we are doing. Below is a clip of the electrodes being attached to my neck and some photos of me doing various exercises. I’ll be giving a monthly update as to what we’re up to and how it’s going here on the site for anyone who’s interested.
Similarly, if you have a spinal cord injury and are interested in taking part in trials yourself then please visit www.scitrials.org which lists all the official and proper clinical trials taking place in the world as well as listing eligibility criteria and location.
Until next time.