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A Personal Wish For Health Monitoring

What if we could automatically detect unusual health problems through monitoring our eye health at home? This would revolutionize how patients are monitored through their healthcare system and is something I believe could really help my parents to remain independent for longer.

My dad was someone who never really got sick, didn’t have as much as a little sniffle. He loved to work hard, play hard and was a big life of the party. He was an avid golfer and loved to take care of his garden. That was how I remember my dad up until 10 years ago. I was pregnant with my second child living in the UK, and my mom had come at the end of my pregnancy to help me from Niagara Falls, Canada, where I had grown up. We were on a skype call with dad when he was showing us new trousers he had purchased with excitement, as we noticed he had lost a little weight. We didn’t think anything of it but within days, he told us that he started having double vision and couldn’t drive. By the time my daughter was born and my mom flew back home, he was doing very poorly. His vision had not improved but instead it had gotten worse. His eyelids started to droop, he lost control of his neck muscles, and started to have difficulty swallowing. Within a couple of months, he lost about 15 kg in weight and was living on nutritional drinks.

Coincidently, my husband and I were about to move to Canada from the UK, a plan we were working on for about 2 years. We shipped our stuff, packed up our two kids—a 4-year-old and a 3-month-old baby—and flew to Toronto. Instead of my dad, we were greeted at the airport by one of his friends, and on the car journey he said to me in a quiet tone, “Don’t say anything to your dad." Being in the UK, I had known dad wasn’t feeling well but when I arrived at his house, I couldn’t believe my eyes. There was nothing of my dad and he couldn’t lift his head to properly say hello to me.

I went into hyper-mode and utilized my maternity leave as an opportunity to find his diagnosis and have him seen by any expert I could get a hold of. Within weeks of our arrival to Canada, he was diagnosed with Myasthenia Gravis, a non-curable disease that affects the neuro-muscular junction. This started his long journey down multiple treatments: plasma exchanges, high dose of Prednisone, thoracic surgery, and radiation therapy. My profession as a Medical Physicist helped me to guide his journey through this system but really, it became obvious that I was completely relying on my judgment, memory, and organizational skills to communicate with the healthcare providers. Unfortunately, 7 months into his treatments he suffered a severe stroke, which changed the course of his recovery journey. He became severely disabled.

This really rendered my mom down to an emotional wreck but with no choice and with my husband and I having jobs in Toronto, my mom became a full-time caretaker for dad. I made the journey to their place, about 1.5 hours from my house in Toronto, every weekend for 3 years. I lived on an eggshell where I wasn’t sure how they were doing during the week, and even on weekends, I was always trying to piece together what was needed for both mom and dad. While doing this, I was also informing my brother who lives in Vancouver of their status. What could have been hugely helpful is some way of being able to monitor dad, not through verbal communication but through some type of “health” device that is easy to use and automatically monitored.

After 5 years of this, my parents made the move to Toronto and now live a 5-minute drive away from my house. It has taken a long time for us to find “our norm” but we feel things are stable. I am able to meet my parents’ wishes of living independent, which is balanced with our support from 5 minutes away. We have had a few incidences along the way since my dad’s stroke in 2013: multiple late night trips to the emergency room, short hospitalizations for both mom and dad at different times. Our lives had changed throughout this journey. Our family became tight-knit, where I have become my dad’s healthcare navigator and my brother became their “financier” as my mom taking care of dad on her own meant she had very little time to do anything else. We don’t always do everything right, but what we have concluded over the years is that “independence” is very important for all of us. To be about doing things on our own, making our own decisions, and doing things in our own terms for longer would be a wish as I age. How can we do this well? I think a regular, easy-to-use, automatic health-monitoring system that can be used at home will provide healthcare providers with objective data that can be scrutinized against a baseline. What could that do? It could allow people to live more independent lives. It could help caretakers like my mom and me to communicate better. At some point, everyone will need more help but, until then, I would love to see more healthcare monitoring being done at home. I feel like we are getting there. I would love to have this for my dad.

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