After two months of doing what’s best described as intensive Pilates on my fingers, seeking to wake up tiny, frozen muscles, I have reached halfway in the research trial. Last week came the big day: stage two, in which electric pulses were put on to bridge the damage in my spinal cord.
I was, I confess, tense – more about getting there on time and not letting anyone down than any personal anxiety. This is an important trial and I felt a corresponding responsibility. I was also conscious of a sense of expectation, my own as well as that of the therapists.
Everyone knows that scientific trials are strictly structured, controlled and dispassionate. Anecdotes are just that; evidence is all. No emotion, imagination or bias. I am – literally – just a number, my body’s reactions something to be translated into data for crunching into percentage points.
But we’re all human and we hope for good outcomes. Hope makes everything worthwhile, especially just now when we desperately need good stuff to happen. And that’s why several researchers had gathered in the room watching as the device was attached to my neck.
Getting my hair out of the way was an embarrassing faff. It’s Covid hair, huge and wild, and my hands and arms, improved though they are, aren’t capable of tying it back in a scrunchie. (Ooh, make that a goal!) I no longer possess a scrunchie. Instead I took the therapist a woolly headband, which soon descended onto my eyebrows like a skier’s in a blizzard.
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I was also secretly worried about the skin on my neck. With perfect timing, I’d developed a persistent itch, which I’m praying is stress and not scabies. I’ve been clawing at the bits of my body with full sensation – that’s everything above the top of my shoulder blades: hairline, neck, shoulders, upper chest and arms. I’ve lashed on every emollient known to man, woman and baby’s bottom to soothe it, but I still wake up scratching. The worst thing, I can’t even inspect the back of my neck in a mirror.
So I held my breath as I leant forward, dreading being told my skin was damaged. But no, I passed. They counted my cervical vertebrae, located the damaged C6 and C7, and positioned sticky electrode pads above and below. They also put one on each hip bone. And then they pressed the button on a tablet to switch the device on.
The concept of sending electrical messages from the nerves above a spinal cord injury to the nerves below is cutting-edge stuff. Neuroscientists and software engineers from the international company Onward, which is running this trial, were behind recent news footage of two paraplegic men (with broken backs) walking independently after electronic implants in their spines.
With the trial I’m doing, Onward is extending its work to tetraplegics (with broken necks), using external stimulation to improve hand and arm function. They plan to go further and do neck implants; to work with newly injured patients; and ultimately to develop commercially available devices.
Quite a lot to play for then, as the therapist ramped up the electronic pulses and I started to feel a throbbing on my neck. It wasn’t uncomfortable, just quite intense. My neck prickled. Peering from under the headband, I was acutely aware of six pairs of eyes fixed on my fingers as I started to span, pinch and grip.
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Nothing wildly dramatic happened and I sensed the briefest moment of collective deflation in the room. No immediate miracles. I have 12 years of spinal cord scar tissue to bypass. The therapist put the power up and down, searching for my sweet spot, studying my fingers. When she found it, my hands felt subtly softer, more flexible. I felt warmth on my hip bones.
Subtle is the key word. There were improvements. On the keyboard, I hit the notes with each finger in sequence marginally cleaner and faster than before. I squeezed plastic clothes pegs slightly more strongly. My fingers looked straighter. My blood pressure was higher.
Disability – always, always, always – is a world of very small gains. At home, off the device, I am definitely noticing more sensation in my fingertips, especially my left thumb. My toes are tingling more at night. I haven’t taken ephedrine for low blood pressure all week. I have two months of stimulation to go. Hang on to hope.
@Mel_ReidTimes
Melanie Reid is tetraplegic after breaking her neck and back in a riding accident in April 2010
