I write this blog, hoping that family/caregiver(s) of a stroke victim (or if you know someone who suffered from a stroke), can find resources quickly to maximize the stroke victim’s chance of recovery. Timing is critical post-stroke. Getting treatment early, within the first few months, can make a huge difference for the stroke victim.
I have been researching and looking for new chances for my dad for the past five years. Everything that comes along is truly a second chance for my dad, and I embrace it dearly.
The day I will never forget
I still remember the phone call from my mom on November 4, 2013. I was sitting at my office desk. I don’t normally get phone calls from my mom during the daytime, so I worry that something is wrong. My parents lived in Montreal and I was in Toronto. Finally, she spits it out, that my dad was in the hospital. Not only that, but already one day passed since he was there. I was so angry that she waited to call. She told me that he had a stroke, but that everything was ok. Of course, I was in a panic and couldn’t believe my ears. I was pregnant at the time and balling my eyes out.
Background: my dad has always had high blood pressure, but it was not properly treated. He is also the type to stress over everything. So his stroke was likely due to high blood pressure.
My sister called the hospital to get more information. The nurse said that he had a hemorrhagic stroke and was in extremely critical condition. There was bleeding in his brain in a very complex area (a pathway to many areas) on the right-side. My sister and I set out to Montreal that evening by car, driving in the rain, crying the whole way about the unknown. My other sister flew to Montreal from Calgary the following day.
Hanging onto life
My dad was in intensive care when we arrived at the hospital. The neurosurgeon had put in a shunt (a tube basically) to drain the fluids from his swelling brain. The shunt was inserted through a hole that they had drilled in his skull. He lay on the hospital bed, lifeless with tubes all over his body and in his throat. He also had a tracheotomy at some point because he could not breathe properly (or something like that). It was too early to know what would happen to him because he was just hanging onto life at that time.
He stayed in intensive care for almost 3 months. His neurosurgeon told us he had full left-side paralysis and may never walk again or use his left arm.
As his condition improved, we found that my dad was super lucky. He did not have any real speech difficulty and had little trouble eating. He also retained his long-term memory. And did not lose any right-side mobility.
In the clear
After he left intensive care, he continued to stay in the hospital for many months. Finally, he progressed to the in-patient rehab. Of course, with publicly funded hospitals, patients are rushed to leave as soon as possible.
Making living accommodations
My parents lived in a three-level apartment, of course on the top floor. The only access to the apartment was by stairs. My mom was in denial and thought the other residents could help to lift my dad up two flights of stairs. Of course, we were violently against this, but being in Toronto it was difficult to help with making arrangements.
We were lucky to find a senior’s home on very short notice, with elevator access and a cafeteria on the ground floor. We moved my parents in upon my dad’s discharge from the hospital. The social worker helped to arrange social assistance three days a week, plus an extra nurse to administer Fragmin (anti-blood clot vaccine) into his stomach once a day. My parents needed extra help. My sisters, my cousins, my uncles and myself, all took as much time as possible to help my parents in Montreal, but it was not sustainable. My parents really needed 24/7 help.
The big move to Toronto
My sisters and I, finally convinced our parents to make the move to Toronto. Because my sister had a main floor full bathroom, my dad went to stay with her; and my mom stayed with me. It was a very tough period. It was stressful dropping my mom off every morning at my sister’s place, so she could stay with my dad while we went to work, and picking her up every night. You wonder why my mom did not stay at my sister’s place? Well, her situation could be its own blog! In a nutshell, my parents needed physical separation from one another.
Treatment
Upon my parents’ move to Toronto, my dad began his out-patient rehab therapy at St. John’s Rehab in Toronto. A wonderful facility with really caring staff (a big hello and thank you to Betty and Mitch, if you read this). (www.sunnybrook.ca)
OHIP allotted 3 months of free treatment. By the time he finished there, he could stand and balance himself a bit. That means that he got some movement back in his left leg. Hooray!
A lot of hard work
Despite my dad’s stroke, he was very positive. To this day, he still works hard at his recovery.
I was very lucky to find Neurocore Physiotherapy and Pilates Centre (www.neurocore.ca), which happened to be about 15 minutes from home and just a few minutes away from work. My dad began intensive twice-weekly sessions at Neurocore. Thank you to the amazing co-owner, Carol, my dad’s physiotherapist, Michelle, massage therapists, Robbie and Hubert for all the work they put in over the years.
On top of that, he went out weekly for acupuncture sessions.
Over the past few years, he has tried physio, massage (with registered massage therapist), acupuncture, MyndMove and FitMi.
Devices of Interest
My dad is much stronger after all the treatments. Today he can walk (albeit with some difficulty). He has not recovered mobility in his left arm, but has sensation and can move his entire arm from the shoulder – so I am not giving up!
A few years after his stroke, I was lucky also to come across another device called FitMi (www.flintrehab.com). Flint Rehab is based in the USA, but can ship devices to Canada.
FitMi is a device that has two pucks that interact with a tablet. The idea is that through repetition, you can increase neuro-plasticity in the brain (basically the ability for the brain to find new pathways if there is a repetition of movement). You repeat exercises on the screen, and it gives you a score (for motivation). At least this way, between physio/massage/acupuncture, he could work by himself at home. I am not sure if this device has made a huge difference, but was definitely worth a try.
Today
I am getting teary just writing this blog. I have been with my dad this whole five years, taking him to most of the therapy sessions. I have seen his progress and backward steps as well. During the winter months, I have arranged for on-site treatment for physio/massage, but this year it was not possible due to tight scheduling at the clinics. Then my relative came across something called neurofeedback and found a place that was again – minutes away from my office – like a gift to us. The place is called Optimum Edge (www.optimumedge.ca).
My dad just started a ten-block treatment. His is doing intensive twice-weekly sessions to increase the chances of progress. He has completed two sessions so far, plus we got one free session/consult. On the first consult session, his arm was locked into position (so kinda like an “L” shape with elbow tight and fingers curled in) and I could stick a piece of tissue paper between his arm and his body and the tissue would not fall. The day of the first actual session, I could no longer put a tissue between, because his arm was looser and away from his body.
After the second session, he said he slept for 11 hours on one night. For someone that slept terribly before, this was a breakthrough. I noticed other small changes, such as being more mentally aware and engaged in conversation. My dad also reported that during the session his fingers were super loose.
The idea with the neurofeedback machine is that music helps to re-balance/heal the brain. You listen to music through earbuds and hear static sounds at certain intervals. Anne and Reid at Optimum Edge, were gracious enough to let me try a session as well. I didn’t really notice much, but maybe my creative juices are flowing like crazy now! I feel that I can write forever…
My dad also uses a machine called Dynavision at Optimum Edge, which has little squares that light up at various places around the board, and you focus on pressing them as fast as you can within a time-frame. You are supposed to focus on a centre square at the same time and read off the numbers that disappear in a flash. This machine is supposed to help with peripheral vision, concentration, the speed of processing things and stimulate the brain accordingly.
Full steam ahead
I really look forward to seeing changes in my dad over the next few weeks.
My only advice to everyone out there: manage ones’ health before it is too late.
What to look out for…
Great news! A device called PoNs has just been approved for use in Canada. Apparently, there are currently two clinics in Canada (British Columbia and Montreal) that are authorized to use the device. But there is a huge wait-list right now. Based on what I read – the hope is for about 20-30 clinics to open up across Canada. Check out www.heliusmedical.com
2020 update: PoNs device has been approved for use in Canada. You can look for an authorized PoNs clinic near you.
Here’s to staying positive!
Thank you for continuing to look after Baba and not giving up hope. It is much appreciated ?
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