Twenty Sessions and Counting
Hello again, dear Reader. Welcome back to the next excerpt of Tara’s Trial in which I will attempt to bring you up to speed with how the first weeks have gone and provide amusing, accompanying photographs at which you can laugh heartily.
So, where were we? I believe I left you with news of my “patchy” ASIA test and details of all the assessments I underwent as a prelude to actually starting the trial. Armed with this baseline, I presented myself the following week slightly nervously but ready to be actually “neuromodulated”.
As a quadriplegic, my blood pressure is comically low – often in the 80s or even 70s when 90-120 is considered ‘normal’ - so we usually have a bet on what mine will be before we start. The tension is ratcheted up by the fact that both blood pressure machines are notoriously febrile and usually display several error notices before deigning to give a reading. One even went completely off piste last week and reported that my BP was 160.
Ordinarily this might occasion a certain amount of consternation and a hasty 999 call but as I was busy regaling everyone with a review of the previous night’s pub meal at the time we merely shrugged and redid it. 94 concluded the machine less dramatically but more accurately on the second go. I am also always asked whether I give my consent to continue and I never tire of joking ‘no’ although the humour of this waned rapidly for everyone else, if, indeed, it was ever funny to start with.
Getting Set Up
Once we have got these bits out of the way we then attach the electrodes. I always have two rectangular, grounding electrodes on my hip area and then up to three small, round ones placed over my spine most often lower cervical, lower thoracic and lumbar – say C7, T11/12 and L2/3.
We then run the electric current through the relevant areas for each exercise so if I am doing hand and arm work we stimulate the cervical spinal area or if I am doing combined leg and torso work both thoracic and lumbar currents will be on. The stimulation itself is started low and then slowly turned up but the aim is never to have it high enough that it is producing involuntary movement.
Instead the target is to have the current excite any remaining nerve connections in my spinal cord in order for me to potentially be able to develop and utilize them more. I have seen interviews from other neuromodulation trial participants in the US who report that they are able to make movements with the stim on that they cannot with it off but this has not been the case with me – nor, when I asked – with any of the others in this specific trial.
Instead, apart from the sensation when the current is first turned on, I am generally not aware of the stim at all once I am doing the exercises, unless the electrode connection is a bit dodgy and then I get a sharp ‘fizzing’ pain and have to have either a new electrode or a taping down of the existing one.
Each two hour session is generally broken down into half hour segments with a different body area being worked on per half hour. The trial specifies 45mins of neuromodulation over the course of each session so there is plenty of time to ensure we hit that time target whilst moving to different bits of equipment or grabbing a quick break.
Every time we try to work legs, torso and hands/arms but can vary that if one exercise is going particularly well – or badly – as long as all areas are worked on across the week. Obviously, us quads are more intensive area wise in the trial as we need hand and arm work which the paraplegic participants don’t have.
Neuromodulation trials on just hand and arm function are planned shortly in the UK so keep your eye on the SCITrials.org page if you want to take part in something similar.
The Next Stage
At the end of my first twenty sessions, I have now done my first assessment which was a partial version of the full set of tests at the start. Whilst not aware of any particular changes in either motor or autonomic function at this stage, I did apparently do the same or slightly better on these tests – a fact I found hard to believe because I actually DID manage to chuck water all over myself and a physio this time round – sorry about that. I now have another twenty sessions and then a full battery of assessments again, including another ASIA. I’ll be back to update in due course.