For as long as there have been human beings, they have had strokes. The phenomenon of stroke is not at all new and the etymology of the word takes us back over two thousand years to the time of Hippocrates, who used the term Apoplexy to describe a sudden onset paralysis he witnessed in people at that time. I imagine a world with no diagnostic imaging and no sure explanation for why anyone would become paralyzed, unable to speak and cognitively impaired in the blink of an eye. The word Apoplexy that Hippocrates chose is Greek for, “struck down with violence,” an apt definition of the reality of stroke.
On a Monday afternoon in January 2020, my Dad was struck down in this way. He was 61 years-old and on a ski vacation with friends, in the middle of a long run on a snowy mountain. I was in Toronto at the time, working in my new clinic which had been open for 21 days. The term apoplexy is helpful for me, in remembering that on that day the impact of stroke struck us both down quite violently.
The purpose of this post is not to relive the details of my flying to Kelowna, or our months together in hospital (stay tuned for the memoir on that!). Instead, I want to talk about what came after his 4 months in hospital, our isolated COVID-19 home-care, my frenetic need to learn as much as I could about brain healing in a hurry and his 32 straight weeks of in-hospital rehabilitation. This takes us to August of 2020, when he was discharged from all available post-stroke programs after squeezing every last drop of therapy out of the mainstream system. At that point, we were on our own.
The most helpful resource for me in teaching myself how to help him recover was a book called “The Brain’s Way of Healing,” by Norman Doidge. The book outlines different alternative approaches to brain healing, which is also called neuroplasticity. Neuroplasticity pushes the leading edge of our scientific understanding of how a brain actually works and what it can do to reorganize itself after injury. In the book, Doidge presents a variety of approaches and some potential stages in accomplishing neuroplastic change and helping an injured brain heal. It is based on specific cases that he studied closely, including people with Stroke along with other neurological issues like Multiple Sclerosis, Parkinson’s and traumatic brain injury.
Using the case study examples, Doidge highlights various approaches and particular clinics and clinicians who are leading the way in the application of neuroplastic principles with people who have run out of hope. Each example looks at different ways of using light, sound, attentive exercise or electric stimulation to support the brain’s ability to heal and change.
As I read, my Dad was a willing guinea pig for ALL these approaches. And yes, I did try them all. The one that got the best results for us was electricity. The book describes a device called PoNS (Portable Neurostimulation) that sends gentle electric stimulation through the tongue. This stimulation is thought to travel through the nerves of the tongue and stimulate the brainstem in an area very closely related to the vestibular nuclei- which play a major role in our ability to balance, process sensory information and coordinate movement. Studies showed that people who wore the tongue stimulation while doing balance and walking exercises seemed to regain capacities that their brain injuries or disease processes had long ago diminished.
It was a global pandemic and at the time my Dad was very cognitively impaired, unable to communicate and hemiparetic (paralysed on his right side). What did we have to lose!?!
I found a clinic in downtown Toronto called P3 Integrated Health and drove him there from Thunder Bay for a two-week PoNS Therapy Intensive. This intensive period was followed by 12 weeks of at-home exercise with the device and the support of the Toronto clinic via Zoom. The program was expensive, a huge investment for us, and we had no idea what we could even expect to get out of it. But PoNS therapy offered us something we couldn’t find anywhere else- hope.
When we arrived on the first day, Dad was wearing a sling on his arm that held his right shoulder in place. He could walk short distances with a cane and used a wheelchair for longer treks. He wore a brace on his right foot and leg to keep it from dragging while he walked and though he was mobile, we moved very, very slowly. We had been told by his therapists in Thunder Bay that there was nothing more to be done for his right arm or hand and we should consider Botox injections to make the spastic muscles on that side go flaccid. This approach is used on paralyzed limbs to make them easier to maneuver for caregivers when helping a person get dressed or wash. He had no sensation, awareness or use of his right arm at all.
The two weeks of therapy at P3 were intense for him. He did two hour-long sessions per day with a nap and a lunch break in between. The main focus of his program was to bring life back to his right arm because that was the area of his body that had progressed the least- and it worked.
By the end of the second week, he was aware that his right arm existed- a huge part of healing a brain is teaching it to pay attention to things it has learned to ignore. He could feel various points along his arm if you touched them with his eyes closed and to everyone’s joy and surprise (especially his), he could move his shoulder and bend his elbow. He left the clinic with no brace on his shoulder and able to lift his hand up to his chest. Based on where he was when we started, this basically felt like a miracle and the improvements in his arm seemed to translate into other noticeable improvements in things we had practiced less in the clinic, like balance, understanding instructions and formulating words. These changes indicated to us something more than repetitive training to bend an arm was taking place; his brain was healing.
I took him back to Thunder Bay (on an airplane so we didn’t have to do the 14-hour drive again) and we worked together to teach the rest of his care team how to practice PoNS with him at home. He has been doing PoNS with the support of friends and family 6 days a week since. He is the most diligent and persistent human I know, even though he’ll tell you he, “Can’t remember anything.” He remembers PoNS and he asks to use it by saying the word he now uses for therapy, which is, “Jobs.”
What I know about post-stroke recovery, having watched it from the front row, is that there are no miracle cures. No quick fixes. No going back to how things were before. My Dad’s stroke was very severe, and he still struggles every day. He has post-stroke complications that continually keep us guessing. He may never actually be okay again. Or as he puts it, he will never be, “Normal.” Walking is hard, talking is hard, getting through a day is an exhausting and exceptional amount of work. There are setbacks. It is scary.
What I also know, is that in our situation we didn’t need quick fixes or miracle cures- we needed little moments of hope. We needed a sense that there was still more out there for him. That his life could be just the tiniest bit better. And most importantly, HE needed to see, know and feel that he was capable of change.
That’s what PoNS gave us. The device took his recovery, which had been labelled “plateaued” by every other practitioner and re-activated it. It let him see that he could still learn things. He learned how to feel his arm, how to move it, how to practice his balance and body control. He did it with the support of the device and a really diligent team of practitioners and family. But HE did it- and that budding sense of capacity meant the world.
And what happened to me you ask? Well, the little moments of hope were contagious, and I took the steps to have Original Health and Wellness become a certified PoNS clinic in November 2020. We are actively treating PoNS Therapy patients throughout the pandemic and I revel in the opportunity to provide the same potential impact on other people’s lives as the device has had on mine. I am also back in school, in the early stages of a stroke-specific master’s degree in Kinesiology, to study the effects of PoNS therapy on balance and perceived quality and life outcomes for other chronic stroke survivors. The desired outcome here is to increase awareness and accessibility of these types of treatments to other families running low on hope. My own tiny steps on the road to recovery.
Today is my 34th birthday. It has been 457 days since we were struck down and I’m writing this update to declare, that thanks to a heap of effort, a mountain of support, a ton of resilience and an ocean of love- we are both still standing- and doing some pretty cool things in the world after stroke.
For more information on any of this:
· “The Brain’s Way of Healing” by Norman Doidge https://www.penguinrandomhouse.com/books/308751/the-brains-way-of-healing-by-norman-doidge-md/
· PoNS Therapy Website
https://www.ponstreatment.ca/?fbclid=IwAR1ynf-wvG-YdDbdkMUpSIeAUtKSMK-GQ6ESfvCT65FpHJMktbFrSZfTiYY
· Original Health PoNS Therapy https://originalhealthandwellness.com/pons-therapy
· P3 Integrated Health https://p3.health/professionals/
· Jill’s Ongoing Work https://www.linkedin.com/in/1jillbodak4ourhealth/
