I’ve been fortunate to participate in multiple clinical studies since my stroke, nearly 5 years ago. In fact, I would say that’s probably the single greatest contributor to my continued progress in my rehabilitation. My 5th and 6th studies weren’t, in fact, clinical trials. They were pre-clinical trials of a robotic glove out of Harvard, known affectionately as the Gripper Glove.
The “glove” sits on the back of your hand and is made up of air tubes that alternately fill with air (which causes them to curl up, closing your fist) and then reject the air (which straightens your fingers). What this does, in the hour a day you wear this, is it gives a power lesson to your brain: 500-600 times of opening and closing per day! It’s effectively shouting to the brain, “LOOK! You can do this!”
What I Got From the Glove
My studies with the Gripper Glove were initially at MGH Institute of Health Professions’ Impact Practice Center (the IPC) with a physical therapist (PT) leading the session (this was my 5th study). And following this 5 months later was a home use study (my 6th study), where an occupational therapist (OT) came to my home to get me started, and then followed up with me once a week by Zoom.
Sometime during the home study I began to notice I was just starting to see independent finger extension! Any finger motion is difficult to achieve. And it usually is flexion (bending the fingers.) Extension is much trickier, because extension is a softer signal. If I try too hard, my flexors kick in and I make a fist. And independent finger motion is next to impossible (based on my type and severity of stroke.) But I had two fingers independently extending!
Dr. Kristin Nuckols
Kristin Nuckols was the OT from the Harvard group, and I was sharing with her my new-found skill. (Independent finger extension has always been a goal of mine. I played the bagpipes prior to my stroke, and I need to extend the fingers of my right hand if I’m to play again.)
“But it’s weird,” I told her. “My forefinger makes sense, but the other finger is my pinky!” The forefinger usually is the first of the fingers to respond to treatment. But the second is usually the middle finger, and then the ring finger, and then, if at all, the pinky. She thought about it and answered, “It makes some sense, I guess. The three middle fingers are all served by the Extensor digitorum muscle, where the pinky has the Extensor digit minimi all to itself.”
Kristin is a co-founder of Imago Rehab, in Arlington, MA. They’ve taken the Gripper Glove in short order from the lab to the street, and they’ve got some uphill pushing ahead of them. But I’m resolutely behind them, because of Kristin’s view of the stroke survivor-therapist relationship. She feels (as do I) that the ownership of the rehabilitation lies with the stroke survivor.
When you go into a clinic, the therapist is in charge. That’s the Clinical Model. The Home Health Model is one step less than the Clinical Model, because the therapist comes to you—but she’s still in charge. “I believe in,” Kristin explains, “the self-management of stroke. I’m just here to teach and advise. You own the stroke and the recovery.” (With a little bit of help!)
My view, after nearly 5 years of recovery, is exactly this: no one wants me to get better more than I DO! I’ll work with anyone, but I want to see that they care and that they are as earnest in their working with me, as I am with them. We can do this!