Fitness & Health - My Strokes
Treatment and management
My Diary ...
October 10, 2025 - I woke at 8:20am the morning before my 64th birthday when my alarm went off and tried to turn it off and realized my left arm wasn't working. Then I tried to speak and couldn't so I immediately realized I was having a stroke.
Cheryl was nearby and called 911 and within an hour I had completed a CT Scan at VGH, determining that I did not have a brain bleed, so they administered Clopidogrel, an antiplatelet medication. A further MRI showed that I had my stroke in the right pre and post central gyrus regions, responsible for things like motor control and sensory input for the body's muscles, including speech. It also showed damage from prior strokes to my left and right cerebellums, responsible for other motor control functions like eye movement and balance. An Echocardiogram with bubble injections showed a PFO (hole) in my heart, the likely route that the clot to my brain travelled.
I regained most of my left side functions by my birthday and was discharged that afternoon. I felt tired, fuzzy headed, and weak.
October 17, 2025 - I was fitted for a heart Holter monitor for a 24hr period. No a-fib was seen.
October 20, 2025 - I had a transesophageal echocardiogram (TEE) - an ultrasound of my heart that gives detailed information about how it is working. A small tube-like probe was passed through my mouth and down into my esophagus. It confirmed the PFO patent foramen ovale.
I was referred to a structural cardiologist for a PFO closure surgery and put on a waitlist.
October 30, 2025 - I have been trying to stay active without raising my HR above 125bpm and avoiding lifting any weight above 15lbs due to my PFO. I am also not allowed to play my Flugelhorn as the pressure from blowing can cause shunting of blood thru my PFO. Most days I have managed 10K steps. Generally I have felt pretty well but still feel weaker than pre-stroke. I have been getting various body sensations like tingling and the occasional sudden 'fade' which has been concerning but could be related to the brain healing. My Drs are concerned I might be experiencing recurrent strokes.
November 8, 2025 - I had a Jacksonian Focal Seizure while watching TV with my family. It started with tingling in my fingers and then spread up my arm and caused sudden left arm jerking. I felt a surge of electrical energy through my body and then had more pronounced body movements. I was taken back to VGH where they performed another CT scan and then diagnosed my siezure, putting me on Keppra, an anticonvulsant medication and then discharged me the next day. I am now scheduled for another MRI and an EEG.
The new meds have calmed my down somewhat, reducing that feeling of nervousness that comes and goes.
November 11, 2025 - I had another Jacksonian Focal Seizure while watching TV after a very active day. It was on my right side, starting at my finger tips, spreading to my neck and side of my face. Then I had some left arm jerky movements again.
I have messaged my Neurologist about it, asking about whether increasing the meds is necessary.
I will have a more low-key day tmw and see if that helps keep the symptoms at bay. I am getting used to having these strange body sensations (tingling fingers, cramping of my hands and arms) and hope they are just the brain healing up. There is a risk that the stroke may cause Epilepsy - that would be a bummer.
November 12, 2025 - I have decided to part with my new Tesla as I am no longer able to drive. When I am cleared to drive again (6+ months) we may shop for a new electric city car. We can likely get by with one car for a while though ...
I am secretly happy to be getting rid of the Evil Elon car!
November 13, 2025 - "How are you feeling?" That is obviously a question I get asked every time I interact with someone. The answer is not that straight forward as my brain injury is somewhat unique and its impact is variable ...
Like all stroke survivors I am generally tired and a bit slow. My brain is trying to heal and it needs energy to do so. Too much stimulation or 'thinking' or 'effort'/stress can quickly tire me out. And my meds have side effects. My blood thinner can make me a bit dizzy, and my anti seizure meds slow me down a bit too.
My stroke effects my sensory circuits and I get strange body sensations: tingling in my feet, hands and arms, sometimes my muscles get tight and a slight burning sensation develops, and sometimes I get what might be called mini seizures where my finger tips will start to tingle and then it spreads up my arm to my face and then I get involuntary arm spasms - not rhythmic but random - jolts of electrical energy. The feeling can be almost whole body - a heightened sensitivity that precedes the jolts.
I try and ignore the tingling and the muscle tightness but sometimes I just need to stop what I am doing and rest. There are no real patterns to it: sometimes I feel almost 100% normal and other times I am depleted. That said I have managed several 1-2 hour social interactions without problems and enjoy the company and support from people. I just can't do too many of those back to back in a single day.
I am adjusting to my new seizure meds and I know my brain is trying to heal and part of that will be strange body sensations. I don't understand why a right side brain stroke would also affect the right side of my body but some neurons from the precentral gyrus do go straight to the same side of the body (a small percentage). I will be asking my Neurologist about this as it is more typical for stroke survivors to have sensations only on the opposite side (for me left side of my body).
I am looking forward to my brain EEG to see what it can tell us about my strange body sensations and spasms. My follow-up MRI will also be useful to determining if I have suffered any further mini-strokes since Oct 10th. Finally, I await my PFO closure operation which will allow me to resume more strenuous activities as well as playing my Flugelhorn again.
I made the following presentation on Nov 4th to help people understand strokes and my journey a bit more: My_Stroke_Presentation 1 -_Nov_4_2025.pdf
I will also put together another presentation that is more focused on seizures and my brain impairment and will post when completed.
November 14, 2025 - As promised, here is my 2nd stroke info presentation - focused on brain impairment science: My_Stroke_Presentation_2 -_Nov_14_2025.pdf
November 18, 2025 - I ended up at VGH ER again this morning after waking with no feeling in my left hand and numbness down my left leg and face. This was after 2 really good days where I started to think that I was truly on the mend. The VGH ER staff enabled the 'hot stroke' protocol again which got me thru the CT Scanner and a thorough evaluation by the Neuro Stroke team very quickly even though the ER was literally overflowing with patients and they were generally short of key staff such as lack of blood draw services. I was blessed with 2 IVs - one on each arm so they clearly saw fit to prioritize me.
My body generally recovered from its initial state by mid day and I was discharged with an increased dose of Keppra (the anticonvulsant meds) and a bump up in my priority position in the MRI queue (I was already booked for this coming Monday with a follow-on Neurology Apt Tuesday so those apts may not change). If they see evidence for re-stroking in the MRI they will likely also bump me up the queue for the heart PFO closure surgery. At this point they cannot tell without the MRI if I simply had a more significant focal seizure or a recurrent stroke. The Neurologist did say that my occasional body/limb spasms and tingling which have often occurred in the past few weeks is not ideal - that is one of the reasons why they want the Keppra dose bumped to 1g x 2 times daily from the 750mg x 2 prior level.
Cheryl & I have just arrived home from VGH and the initial thought is to dial back my level of activities as I have been pretty busy with engagements over the past week. Some walks are good but we will keep the duration down a notch or two and cancel a number of engagements that we have on the calendar for the following week or two.
November 21, 2025 - MRI completed yesterday - results pending
Follow-up Apt on Nov 25th with Dr Philip Teal, Director, Acute Neurology at VGH
Heart PFO Closure Surgery on Dec 9th with Dr David Wood, Head of Cardiology at VGH
Still titrating my anticonvulsant meds, looking to avoid over medicating (foggy head, strange dreams, odd body sensations at night) while getting as much relief from spasms/twitching as possible - a work in progress.
November 25, 2025 - Today Cheryl & I attended an appointment with Dr Teal, my Neurologist. We reviewed the MRIs (see attached image file), my symptoms and the path forward. Here are a number of discussion points made during the meeting:
* Dr Teal reported that MRI #2 did not show new stroke damage - but MRIs do not always show damage (for various reasons). He said I likely had damage from my Oct 10th stroke to my post-central gyrus regions (in addition to the pre-central gyrus regions) that was not indicated on the MRI, which could account for my sensory impairments.
* I reported that I have some continued impairments such as a completely numb left foot big toe and a slightly numb left index finger and a bit of numbness on the left side of my face that comes and goes, plus some other areas of my body where sensations are not normal yet. But things are progressing in the right direction as I am not experiencing any seizure-like symptoms and have improved energy levels.
*Dr Teal stated that I have a good prognosis as damage to the central gyrus regions, while impacting motor and sensory circuits, often heals well while strokes that affect the lower brain stem motor pathways can lead to challenging long term impairments
* My Keppra anti-seizure meds are working well - at some point after I have healed up from my PFO closure I can start to taper off it and see if any seizure-like activity resurfaces - the expectation/hope is that I will successfully get off Keppra but if not I could continue on the meds as necessary. I can get back to driving 4-6 months post my last seizure-like symptoms have stopped. A baseline EEG will be completed and then possible follow-on EEGs during the process. There is a long backlog for EEGs, hence the delay to date.
* I will likely stay on my Plavix blood thinner meds until my heart has fully healed up (Dr Wood, Cardiologist Surgeon to have input) - that will be determined after another TEE heart image is taken several months after surgery Dec 9th to confirm healing and closure is complete. I will need to avoid any activities that might cause bleeding in the interim period.
In summary it was a positive meeting and Cheryl & I are feeling more confident that I am on the right path towards a full recovery - it will just take time, perhaps most of 2026 to complete so patience and grace will be a prerequisite.
As far as rehab goes, being active and going about playing the piano and living as normal a life as possible is good for me. I am not in a category that requires extensive specialized physio care. That said I am starting up some mirror box hand therapy, and doing light weights and balance/strength routines this week. I find that doing slow hands-separate piano playing helps me work on some of the clumsiness I am currently experiencing while playing piano - other people don't seem to notice it but my hands don't feel fully connected to me at times and don't always do what I want them to do.
Onwards and upwards. Next major step is my PFO closure Dec 9th ... let's hope it doesn't get delayed for any reason.
December 8, 2025 - Tomorrow I am scheduled to undergo my heart PFO closure surgery at VGH at 10:45am, which is being done to reduce my risk of re-stroking (see PFO Closure document for a description of the procedure, risks and outcomes). The procedure itself has a risk of causing another stroke or heart attack of 0.1% while Dr Wood has stated that my overall risk of re-stroking over the next 5 years will drop from 5.4% to 1.8% after PFO closure so the risk-reward ratio is strongly positive. I should be discharged late in the afternoon tomorrow.
Thank you to everyone for your support and kind words leading up to this procedure.
I will provide an update after the procedure is completed and I am back home. It will be a quiet month post surgery and then I should be able to start working out again in the new year.
December 9, 2025 - My PFO closure surgery was successfully completed without complications just now. About 1 hour of prep and another hour in the OR with 3 cardiologists and 4 support staff. Very high tech OR setup. Once the catheters were inserted the closure itself took around 20min. I could feel the catheters moving inside my femoral vein and also when it was in my heart. Strange!
One of the catheters was an ultrasound sensor and the other one was the instrument with the closure device.
Most of the pain and discomfort was due to iv insertion (4 attempts) and the freezing of the incision area. Some uncomfortable sensations when moving the catheters.
Some femoral vein bleeding post surgery that was addressed with a local injection of coagulant and pressure application. Should hold now.
No stroke or heart attack during the surgery and so far no atrial fibrillation so i am fully on my way to recovery!
Photo of my installed closure disks attached here …
December 11, 2025 - "All is well that ends well" - the quick summary is that >48hrs post surgery I am on the mend.
That said, Cheryl & I are depleted after 2 trips in the middle of the night to VGH ER, the 1st for femoral vein bleeding and the 2nd for heart inflammation (both addressed and mostly resolved - see below for details), plus Neurology & Cardiology follow-up Apts. We should sleep soundly tonight ...
Immediately post surgery the cath lab team at VGH had some difficultly stemming the bleeding due to the fact that I am on blood thinners. They used pressure application after injecting Epinephrine + Lidocaine to constrict the tissue in the area - and it worked, but later after discharge the bleeding re-started so it was up to the ER staff to perform the same process again and eventually send me home before sunrise.
Last afternoon I was obeying the discharge instructions to not bend my leg and basically lie down a lot and ate a sandwich, and then started to feel what I thought was indigestion, but it progressed fairly quickly to having painful heart beats and chest tightness so we called VGH and got advice to come back to the ER again. After some imaging and bloodwork one of the cardiologists that performed my PFO Closure reviewed everything and said that it is fairly common for the heart to have inflammation and in my case he said they had manipulated my heart tissue a lot so I just needed some anti-inflammatory meds and rest and I was again sent home before dawn.
The cardiologist apt this afternoon confirmed I am healing up well and that my inflammation is dropping, with much reduced pain, and that I should complete a full recovery - it will just take a bit more time.
I expect that after we get a good rest tonight I will start to return to normal activities, other than avoiding lifting anything more than 10-15lbs for the next week. After a month I will be allowed to do normal workout routines too.
To repeat: "All is well that ends well"
December 18, 2025 - I had an EEG (electroencephalogram) today at VGH – see Electroencephalogram-EEG for more info.
It was a really strange and interesting test, involving the placement of a few dozen electrodes around my head and then having me answer questions and be subjected to a range of flashing lights and other stimulus. They are looking for neuronal hyper-excitability / seizure symptoms. Given that I am taking anticonvulsant meds I wonder if the test will show anything?
Saturday I am back at VGH for an ECG/Holter monitor test – this time they are looking for signs of atrial fibrillation that might be caused by the heart surgery last week. I haven’t felt any, except for a few days post surgery for a moment or two here and there.
I found an interesting correlation between my heart inflammatory response post surgery and taking anti-inflammatory meds (just Ibuprofen) to manage it: when taking the meds not only did my heart stop aching but my focal seizure symptoms also declined markedly. When I stopped taking the Ibuprofen my symptoms came back strongly. It turns out that a stroke creates inflammation in the brain which can increase hyper-excitability and if there is additional inflammation in the blood stream from other areas of the body (in my case heart) that can aggravate the situation and make symptoms worse. Hopefully my whole-body/brain inflammation levels will drop way down over time and I won't end up as an Epileptic for life, but if that is my path forward there are a lot of meds to help me manage it and allow me to return to near normal living (1% of the population has it).
We wanted me to get the heart surgery as soon as possible to close my PFO but that surgery isn’t trivial in terms of its impact on my body and brain and I could certainly tell that I wasn’t fully at my best health given how the PFO closure procedure impacted me – making me feel weak and tired (and sore!). I got thru it after some complications and now I am 9 days post and I am starting to feel quite a bit stronger.
So how am I? My heart is feeling 90+% normal now and the incision area swelling and soreness is almost gone. I am still not allowed to be too active for another 3 weeks but I am walking daily and feeling progressively stronger. My left side weakness is still persisting so I need to be careful with things like stairs as my left foot is still partially asleep and my left hand doesn’t always work properly. Sometimes I feel someone has stuffed a sock in my mouth (words don’t always come out as intended), and I feel a little ‘dumb’ but these are relatively minor things. I am very lucky …
So here we are, at the edge of the Christmas/holiday madness, and I am just starting to feel like I can participate and be ‘present’ with family and friends, albeit at a 30-50% of normal capacity level to ‘hang in there’ with everyone. I can use the distraction and the warmth of family and friends, and so can Cheryl. Speaking of Cheryl, she has worn the brunt of the stress around all my health drama since October 10th and she too is coming into the festivities somewhat depleted. We are both trying to rest up and recharge.
Thank you for your love and support. Cheryl & I wish you and your family the best over the coming holiday period. We will have various combinations of immediate and extended family and friends with us over the next 2 weeks which should be really nice. We will host 16 people for Christmas dinner at our home (a pot luck event so we are not on the hook for that much prep) and will also have a low-key NYE event here.
I’ll provide an update mid January when I expect I’ll be much further down the path to recovery. Until then, Ho Ho Ho, Merry Christmas and Happy New Year!
January 10, 2026 - Today is the 3 month anniversary of my stroke and yesterday was the 1 month anniversary of my PFO Closure surgery so it is a fitting time to post an update on my recovery progress ...
My left side weakness and nerve function has really improved overall with almost no foot numbness or hand coordination issues which is really satisfying. I continue to battle a stubborn quadriceps pain/weakness that comes and goes which can strand me when out for a walk but by being patient and giving it time it resolves so I am confident it will fade over time. My vocalization of words continues to occasionally be interrupted but no-one else seems to notice it so I guess that is mostly a non-issue although it feels odd not being able to say something when I try to.
I celebrated my dual anniversaries by going out for 2 short e-bike rides Thursday and Friday, totalling 13kms. My balance was a bit suspect on ride 1 but ride 2 was solid and I felt confident in the woods. I experienced some mild heart pain when I got my HR to 140bpm which is not to be unexpected within the first 2 months post surgery - I promise to keep my HR within a reasonable range for the next few months at least. Next will be some easy weight lifting starting this weekend.
My brain played some interesting tricks on me after my ride #1 - it felt like my arms and hands were vibrating when I stopped riding but they weren't moving at all. The odd feeling went away after a few minutes and I didn't get that feeling after ride 2 so I think my brain is adjusting to doing things like working out for the 1st time since the stroke and will adapt.
I continue to have a love/hate relationship with my Keppra seizure meds as they have a powerful effect on my brain function, impacting my mood, energy levels, ability to focus on tasks, and quality of sleep. They obviously are keeping me safe from having more seizures so it is a decent trade-off but I'd love to get off them ASAP - however Dr Teal has said it is 1 year post seizures that any attempt should be made to get off them - we'll only know then if I need to stay on them for life. I think my brain will continue to adapt to the meds anyway.
Completely separate from my stroke/seizures has been a post left hip replacement Iliopsoas Tendonitis and right ankle Peroneal Tendonitis (likely related as my bad left hip put additional load on my right side). I have been waiting in the queue for Cortisol injections but these have been delayed because I am still on Plavix (blood thinner) until May so I have been using various techniques to massage and stretch the impacted muscles and tendons (Cheryl gave me a wonderful Theragun for xmas) and I have made great progress on that front as well: the combination of the stroke and the pre-existing Tendonitis really made getting around challenging but increasingly I am walking and taking stairs much more confidently so I can see a bright future of normal mobility in 2026!
Crossing my fingers I am out of the immediate danger zone re. further strokes and I am well on my way to a fully healed heart (it takes about 6 months). I will get another nasty TEE procedure done to image my PFO at the 1 year mark to confirm healing is complete but as of this point I can get on with my life again and do as much physical activity as I want - subject to bleeding risks from the Plavix.
Being a senior citizen life is never without something reminding me of my mortality and at this point I can say that I have a renewed appreciation for the many gifts and privileges that have been bestowed on me during my life. Perhaps one of the gifts has been having this stroke as I have gone deeper with many existing relationships and reconnected with old friends as as result of it. Thank you for your love, support and friendship!
I'll provide another update in May when I will have a new car and will be driving again ...
March 10, 2026 - Today is a triple anniversary: 3 months since my heart surgery, 5 months since my stroke and 1 year since my dad passed away, so I thought it would be appropriate to provide an update and give thanks for several things …
My heart has continued to heal up well and at this point I only get slight aching when pushing my HR to >150bpm while biking. In another 3 months I will be off the Plavix blood thinner drug and I’ll be able to fly on planes, play my flugelhorn, and push myself as hard as I’d like to with exercise. I am thankful for the quick scheduling of my surgery and the successful outcome.
My stroke has left me as a ‘differently abled person’ who is always glad for a hand to hold while navigating uneven surfaces and stairs. My brain-body interface is different now: overly sensitive to sensations and non-linear with the activation of some muscles, resulting in challenges with balance and coordination. I have leaned into a comprehensive rehab program and continue on my path to a stronger and more physically confident self, but I am thankful for the functionality I have now and realize things could have turned out much worse. As the old saying goes “none of us are getting out of here alive” and I am committed to accepting my new self and the journey I am on.
Related to the stroke is the Keppra anti-convulsant drug I am on – I am in the process of titrating down as I do not function well on it (impacting things like balance, energy/focus and sleep quality). My aim is to get off the Keppra within the next month or 2 as long as I don’t re-start having seizures.
The past 5 months have been the toughest hill for me to climb in my life so far and I am very thankful for the support and love of my family and friends who have been there for me. It means a huge amount to me.
When my dad passed away a year ago I was on a bit of an adrenalin push to get things taken care of on many levels. With my stroke I have been thinking a lot about my life and its purpose and intertwined with those thoughts are ones related to my upbringing and the many advantages and supports that were provided to me along the way: dad was ambitious/driven so we had to get used to his focus on work but he made sure we were ‘all in’ with our music, go-karts and mini-bikes, fitness, education, travel and more. He mellowed out as a grandpa and became a gentle and happy old man until the end. I think I can make that transition too by transitioning into old age gracefully and with a smile.
For those of you who wish for a deeper dive into my journey from an educational perspective around having a stroke, seizures, a heart PFO, disinhibition and spasticity from Interhemispheric Imbalance, and how that can impact things I have a PDF document here you can read: My_Stroke_Presentation_3 - March_10_2026.pdf
Thank you again and love to one and all.
Derek