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Senator Ben Ray Lujan suffers cerebellar stroke

This morning I awakened to the news that a US Senator from New Mexico, Ben Ray Lujan, had sustained a stroke in his cerebellum last week, diagnosed after he presented to the University of New Mexico Hospital with dizziness. Of course, the media was making it into a political Senate 50/50 split issue (and in a divided nation, this certainly seems to get the ratings these days), but I was thinking – I wonder if he is relatively young, as so many of my cerebellar stroke patients have been. And he is – 49 years old.

Which had me wondering if he could have had a vertebral artery dissection. Or was prone to forming blood clots because of an underlying condition. Or has a patent foramen ovale (a PFO – a tunnel between the right and left atria of the heart that is thought to permit blood clots to more easily reach the brain, rather than being filtered out by the lungs). I really don’t know what caused his stroke at this point, as I only know as much as is being released to the media, but I am concerned for him.

Reports are stating that he underwent “decompressive surgery” as part of his treatment. This means he developed enough severe swelling in the cerebellum that his doctors were concerned that the swelling could compress his brain stem and create a life-threatening situation. A decompressive suboccipital craniectomy involves surgically removing part of the skull on the back of the head to allow the cerebellum to swell outward, rather than pushing on the brain stem in such a tight, confined space. I won’t post an image here in case it causes anyone discomfort, but if you click here you can watch a video at the Neurosurgical Atlas website to see a demonstration.

Typically, patients who are diagnosed and treated early with cerebellar strokes do “well.” But what does “well” mean? In the world of stroke survivors, doing well usually means living independently, walking, talking, and eating. Many of my patients have told me that while they are back to independent living, they have not made a “full recovery.” They feel off-balance, particularly if they turn too quickly. Or they struggle with fatigue. Or headaches. Or double vision. Or some combination of the above. Sometimes cerebellar stroke patients can even have difficulty speaking because of language impairment, a condition known as aphasia. When I saw the statement from Senator Lujan’s office about him being expected to make a “full recovery,” I had my doubts, but I sincerely do hope that he has a very robust recovery and can celebrate the milestones along the way.

With a cerebellar stroke that is large enough to require a decompressive suboccipital craniectomy, the situation can become rapidly fatal without recognition and treatment. I am glad that he sought treatment and was appropriately diagnosed and treated. May his stroke also serve as an example to others about the importance of good, early stroke care.

Early morning thoughts about cerebellar stroke patients

I awoke to the sound of my 13 month old son on the baby monitor at 3:01AM today. His nickname is Baby Shark, and therefor the baby monitor is known as the “Shark Cam” in our house. And as happens with sharks, he seems to be getting a lot of new teeth these days. I don’t remember my own teething experience, but I imagine it isn’t pleasant to have hard, pointed objects bursting through fresh gum tissue, and not having enough frontal lobe development or life experiences to understand the pain. Poor little guy.

Once I comforted Shark and got him back to sleep about an hour later, I started thinking about the natural thing most moms might ponder at 4AM – cerebellar stroke. Doesn’t everyone contemplate this neurological phenomenon at that weary hour?

I thought of the cases I have encountered over the years of patients who seek help for dizziness, nausea, and vomiting, who are then sent home from the ER, diagnosed with more benign forms of vertigo or migraines, but are dead three days later from severe cerebellar swelling. They are some of the saddest cases neurologists encounter because they are so tragic. And they can occur in young people. What can begin as neck pain (from a dissected vertebral artery) can rapidly become a catastrophic event resulting in death.

To those of you out there who are forever changed by a cerebellar stroke – whether you are a cerebellar stroke survivor, have a survivor loved one, or have lost someone you deeply loved to a cerebellar stroke, know that I am thinking of you this morning. The young adult with neck pain that became dizziness, vomiting, and instability. The person with atrial fibrillation who tried to do everything right to prevent a stroke but had one anyway. The person who didn’t necessarily do what was advised, had a stroke, and now lives with regret and limitations. I’m thinking of all of you this morning with empathy and care.

Life is so complex, isn’t it? It’s robust, miraculous, and yet hangs in a fragile balance. Every single day’s dawning does not guarantee we will see its conclusion.

As I put my sleeping young son back to bed this morning, I marveled at how perfect he seems. His little hands and toes. His sighs. And even all of those teeth that are erupting.

He has his whole life ahead of him. How long will that be? I hope very, very long.

I Am A Doctor On The Internet, and I Am Covid-19 Vaccinated

Recently, it hit me.

I’m a doctor. And I’m “on the internet.”

But I don’t have a YouTube channel. Well, I technically do, but the only videos I have posted are of my cat, and of my daughter doing an excellent cover of Imagine Dragons’ “Thunder” when she was three years old.

But back to being a doctor who is “on the internet.” I have had a blog for years, and have even written a book! Perhaps I get a say in the whole Covid-19 vaccine debate too then?

Then again, maybe it isn’t my medical degree, my four years of residency training, my year of fellowship subspecialty training, my 11 years subsequent to that that I have spent as a practicing neurologist, my having been on faculty at Duke University, my having written a book, my having published my research in peer-reviewed journals, or even my having actually witnessed a patient with Covid-19 dying in front of me that gives me credibility. It seems that the greatest credibility a physician can have with the public these days is having a YouTube channel. But here goes anyway…

Recently, I heard the rumor that people who have been vaccinated against Covid-19 can shed virus and infect unvaccinated people. The physician in me said, “Huh?!” I thought – Covid-19 vaccines do not involve injections of live virus, and therefore viral shedding does not occur. It seems that when incorrect information is conveyed and then repeated amongst the public, when I ask for a source, I often hear, “I read about it from this doctor on the internet.” When I attempt to state my opinion, typically the response is, “Well, this guy is a doctor, and he says…” And then the opposing side is given to me. And then I think – the guy online is a doctor, and I am a doctor. So what gives? Thousands of doctors can advocate for vaccination, but if they don’t have an online platform, they are speaking into a void, it seems. It could be similar to why we become star-struck when we see a celebrity at a coffee shop, or worship professional athletes as opposed to the people who save our lives, or educate our children, or ensure that we have safe drinking water, or ensure that when we get on airplanes they won’t explode mid-flight. We idolize those who are on screens.

For anyone who has grown to trust me over the years through my blogging, I feel it is appropriate to speak out on Covid-19 vaccination, as a doctor who is also “on the internet.” I was here long before Covid-19 existed. And Covid-19 is a disease of clotting. And we have seen a lot of strokes in Covid-19 patients. The Stroke Blog is an appropriate place to discuss this topic. Additionally, I have spoken with patients who have recovered from strokes who then slide backwards in their stroke recoveries after becoming infected with Covid-19. My opinion is that everyone who can, and in particular patients with a history of stroke or who are at risk for stroke, should get vaccinated against Covid-19.

In 2016, I wandered through a cemetery in Pittsburgh, Pennsylvania with my family, looking for a section of final resting places of family ancestors. We located them, and I felt a metaphorical punch in the gut when I saw the number of miniature stones accompanying the larger, full-sized grave headstones, realizing that the smaller stones were what was left to declare that babies and small children resting in the ground beneath them had existed. And then I realized from the dates on the stones that all of these children had perished within several weeks of one another. A mother had buried four of her children within three weeks.

I have five children. The thought of four of them dying within three weeks is too awful to deeply consider. No more Gabriel, or Caroline, or Alexander, or Bethany. Ever again. Gone. The young people whose sweet voices fill my home would only be faint echoes of the past. How could I stand such a thing and continue on?

Quick research revealed to me that these children had died in the midst of a diphtheria outbreak over a century earlier. Diphtheria. A disease to which I had never given a second thought, other than having to learn about it during medical school. I have never seen a case of diphtheria. It effectively no longer exists in the United States due to two factors: vaccination and clean drinking water. What would the mother of those four children think of vaccination against diphtheria? Probably that it would be nothing short of miraculous.

When studying public health, there are two factors that have extended more human lives than the fanciest, high-tech surgeries or the most astonishing breakthrough medications. And guess what they are? Vaccination and clean drinking water. The truth is that children here no longer die of diphtheria, and that did not occur through accidental means.

To see so many people concerned about and resistant to vaccination against Covid-19 conveys to me that we are now a society (fortunately) that has not had to bury four of our children within three weeks because of a disease that destroys our families. We have not had to watch our children become quadriplegic because of polio. We take for granted that, if our children do not end up in accidents, they will most likely live to become adults with their own lives one day. That was not always the case. My great-great-grandparents had 13 children; five survived to adulthood. It was reality. But, thank goodness, it is not our reality today. And the reason it is not our reality is because of vaccination and clean drinking water. We are lacking the perspective of our ancestors, and we are now not learning from the past.

Covid-19 has killed over 609,000 Americans at this point, and more than 4,100,000 globally (likely an underestimate – the true toll will not be known for years, I suspect).

As the title of this post reflects, I am sharing here that I am vaccinated against Covid-19.

I have never smoked a cigarette in my life. I have never experimented with illicit substances. I was that kid in high school who didn’t go to parties and never tried pot. I realize this is abnormal (and please know I am being gently self-effacing here, not judging the very normal experiences of most people – I am the outlier). But my point is – I have consistently tried not to put things into my body that I believe are harmful or dangerous (with the exception of cookie dough – not advocating for that here though). I would not have allowed anyone to inject a substance into my body if I thought it was harmful. And the doctor in me read about and studied the Pfizer and Moderna vaccines (the two that were available when I was vaccinated). I felt comfortable with the data. What I did not feel comfortable with was the growing death counts and long-term disability from Covid-19 infections, and wanted to do what I could to protect myself, my family, and our society. As a physician, I had the opportunity to be vaccinated very early on, and I knew that, outside of the patients in the clinical trials, I would be taking a bit of a leap of faith too, because I was not going to watch millions before me and wait and see what happened to them before getting vaccinated. I was comfortable going early.

When I received notification on December 21st that the Moderna vaccine was available to all medical staff at one of the hospitals where I was credentialed, I jumped at the chance. And on December 22, 2020 I received Moderna shot #1. On January 20, 2021, I received Moderna shot #2. Did I have side effects? Yes. It would be dishonest to claim otherwise. I believe that those who are still hesitant about Covid-19 vaccination believe that pro-vaccination people are not being honest and transparent, and I want to be completely honest here.

After shot #1 my arm was sore for about two days, more so than with a flu shot, but I was fully functional and felt normal otherwise. After shot #2, I began running a fever about 12 hours later, and then had intense chills that night. The following day I felt very sore, and the arm soreness was much worse than it had been with shot #1. I took some ibuprofen early the next morning, and it was pretty amazing, because things got about 80% better quickly, within about two hours of taking it. By two days after shot #2 I felt completely normal, and have felt normal ever since. I have spoken with other physicians who got the vaccine early and had similar reactions to what I experienced. I have talked with others who had zero side effects, almost as though they had never gotten it. My husband had some arm soreness that was short-lived and that was all. Fever is an immune response, and I look at my reaction as my immune system awakening, reacting, and now being on the alert if I come into contact with the virus that causes Covid-19.

We need to reach “herd immunity” (getting a critical threshold of the population vaccinated) to defeat Covid-19. We aren’t there yet, and that won’t happen as long as the issue of vaccination remains a polarizing topic. Respectful conversations have to be had. Fears need to be allayed. Listening should occur. The labeling needs to stop.

As for the question of whether vaccinated people “shed virus” and can infect unvaccinated people – rather than assuming that’s completely crazy and labeling people, there is actually a basis for that fear, although it does not apply to the Covid-19 vaccines. According to the Centers for Disease Control recommendations, if a person is immunocompromised (has a weakened immune system), it is advised that the immunocompromised person not change a baby’s diaper after a baby has had the rotavirus vaccine because the baby can potentially shed virus for a brief period. Also, after a baby receives the chicken pox (varicella) “live virus” vaccine, no special precautions need to be taken, but if the baby develops a rash after vaccination, the rash should be covered and the immunocompromised should not come into direct contact with that rash because there is a small risk of transmission.

The Covid-19 vaccines do not contain live virus. There is no evidence of “shedding virus” after vaccination, because there is no virus to shed since no virus has been injected. The Covid-19 vaccines involve alerting the immune system such that our bodies will defend us if we come into contact with the actual virus down the road. Being able to explain the difference to someone who is hesitant about Covid-19 vaccination in a calm and sound way is, in my opinion, a better approach than labeling that person and assuming there is no basis to his or her concerns.

I sincerely believe that, over time, more people will get vaccinated. Vaccines save lives. The current deaths due to Covid-19 that are occurring are in unvaccinated individuals are tragic, in part because they are now preventable. Most of you who are reading this, I have never met and never will meet. But I care about you, and I want you to have a fulfilling, fruitful, and healthy life.

Finally! A randomized clinical trial evaluating treatments for cerebral venous sinus thrombosis (CVST)

When the topic of stroke is being discussed, for the most part it is the concept of “blockages” developing within in the arteries of the brain – that is, the blood vessels that are carrying oxygen-rich blood *to* the brain to nurture its cells. These blockages can occur from the formation of blood clots, plaque build up, dissections (tearing of the lining of an artery’s wall and blocking blood flow), or a number of other rarer phenomena. Put simplistically, when these blockages occur, blood cannot supply a portion of the brain, and those brain cells, known as neurons, then die from the lack of oxygen and nutrients.

After blood cells have delivered oxygen to neurons, they then need to leave the brain to return to the heart, then travel from the heart to the lungs in order to pick up more oxygen, and thus repeat the cycle of oxygen delivery to the brain and other organs. Blood leaves the brain through drainage systems called cerebral venous sinuses (effectively large veins). Much less frequently than the development of blockages in the arterial system (about 2% of all strokes), blood can clot within these venous sinuses, resulting in what is known as a cerebral venous sinus thrombosis (CVST). When venous sinuses are blocked because of obstructions caused by blood clots within them, blood struggles to leave the brain and backs up, which can lead to brain swelling, bleeding, and in severe cases, coma and death. I discussed this topic in 2016 in the context of the US presidential election (click here if interested in reading more).

Venous sinuses within the brain drain blood and send it back to the heart. Image source: http://www.dartmouth.edu/~humananatomy/

The standard treatment for CVST has typically been to place patients on anti-clotting medications (known as “anticoagulation”), such as heparin, enoxaparin (Lovenox), warfarin (Coumadin), or more recently, physicians and healthcare providers are starting to use the newer anticoagulants such as dabigatran (Pradaxa), rivaroxaban (Xarelto), or apixaban (Eliquis). Most patients with CVST present to doctors or healthcare providers awake and thinking coherently, but can commonly experience severe headaches, blurred vision, and nausea and/or vomiting from the pressure that is building up within their heads as blood backs up and cannot drain. However, some patients come to medical attention with much more severe presentations, such as with difficult-to-treat seizures, severe confusion, or in comatose states. In this group of patients, at times doctors have gone with a more aggressive treatment approach, in which a wire catheter is inserted into the patient’s groin region and is threaded up to the site of the clot within a venous sinus of the brain to try to physically remove the clot. This is called a thrombectomy (“thrombus” refers to clot and “-ectomy” refers to the break up and removal). In some cases, t-PA, the “clot-busting” drug that can be used for arterial strokes, is infused at the actual site of the clot through the tip of the catheter in an effort to help dissolve a portion of the clot as part of the effort to physically remove it. Thrombectomy procedures have loads of data to support their use in carefully selected eligible patients who have obstructions in certain arteries of the brain, but had not previously been studied in a randomized clinical trial format in patients with severe CVST presentations.

Because CVST with severe clinical presentations are relatively rare, they have been traditionally difficult to study in order to determine whether these patients have better outcomes with only anticoagulation or with anticoagulation plus a more invasive procedure (thrombectomy and/or t-PA being infused into the clot, as described above). However, there is now a published clinical trial to offer some guidance in this scenario.

The TO-ACT trial was performed at eight hospitals across three countries, and was able to enroll 67 such patients presenting with CVST and severe clinical symptoms/findings. The primary outcome (the “final result” to see if the more aggressive treatment was a success compared to standard therapy) was to evaluate the number of patients at the end of 12 months who were normal neurologically or very close to normal, meaning they were fully independent and getting on with life. Thirty-three patients received anticoagulation plus they underwent thrombectomy, t-PA infusion, or both, while 34 patients only received only anticoagulation (no thrombectomy or t-PA). At 12 months, there was no difference in outcomes between the two groups. Going into the trial, the severity of symptoms/presentation was the same between the two groups of patients. Four patients died in the thrombectomy group, and one died in the anticoagulation only group, but the difference was not statistically significant (meaning, this difference could be due to chance, since the sample size was relatively small).

The authors of the study acknowledge that perhaps another larger study should follow. Let’s face facts, though – it is really difficult to enroll patients in a trial that is studying a relatively uncommon phenomenon. I personally find it impressive that this feat was able to be accomplished, and respect the persistence and determination among the investigators to bring this study to the finish line so that some guidance and insight could now be available into how to manage these patients. I have personally seen patients who show up in comatose states, looking very neurologically ill with CVST, who have done extremely well on anticoagulation, compared to how they appeared when diagnosed. I have seen others with “mild” presentations who have suffered with chronic headaches and other negative quality-of-life aspects that can really drag them down as they juggle life’s daily demands.

My bottom line with CVST is that earlier diagnosis is better. Once the diagnosis is made and patients are started on anticoagulation, the majority of people will go on to lead independent lives with their autonomy intact. It is a condition, unfortunately, that is frequently misdiagnosed, and it is tragic when the diagnosis is later made after seizures, coma, brain hemorrhage, or death occurs. Early diagnosis and treatment is perhaps the most critical factor in achieving good outcomes.

More evidence that Covid-19 is a disease of clotting

A paper appeared yesterday in The New England Journal of Medicine, adding to the growing body of evidence that clotting is a prominent feature in Covid-19, even if it isn’t always evident. People who develop difficulty breathing with influenza (“the flu”) or more run-of-the-mill pneumonias may look at first like they have similar shortness of breath to those with Covid-19, but this particular study details autopsy results of careful examination of the lungs in patients who have died from Covid-19 versus patients who have succumbed to influenza. The article can be accessed by clicking here.

For those without medical or scientific backgrounds, articles in The New England Journal can be difficult to decipher because of the medical terminology. However, it is worth translating for the public.

Perhaps the two sentences in the abstract (the brief summary of the study presented at the beginning of the paper to gain an overview) that stand out the most to me are: “Histologic analysis of pulmonary vessels in patients with Covid-19 showed widespread thrombosis with microangiopathy. Alveolar capillary microthrombi were 9 times as prevalent in patients with Covid-19 as in patients with influenza.”

Translation: The lungs of the patients who died secondary to Covid-19 had wide-spread clotting, nine times more blood clots and blockages in the thousands of small capillaries and blood vessels in their lungs, compared with the lungs of patients who died from influenza.

This could be why patients with Covid-19 go from talking to their healthcare providers in emergency departments to abruptly dying, and why so many who are on mechanical ventilators still don’t do well. It’s difficult to ventilate lungs that are full of blood clots. How can oxygen and carbon dioxide pass across the walls of blood vessels if these blood vessels are solidly, unabashedly blocked and blood is not flowing?

We have heard reports about young people with Covid-19 showing up with strokes. Reports of blood clots in arms/legs/fingers/toes are becoming more prevalent. This recent study confirms evidence at the cellular level that clotting is a feature of Covid-19.

Stroke emerging as complication of Covid-19

On April 28, 2020, a letter published in the New England Journal of Medicine describing blood clots in large arteries supplying the brain (known as “large-vessel strokes”) in young patients testing positive for Covid-19 brought media attention to this particular facet of a disease physicians, healthcare providers, and researchers are endeavoring to understand. (Click here to read the brief NEJM letter.) The letter’s authors have been treating patients with Covid-19 in the Mount Sinai Health System in New York City. They note that, on average, every two weeks their hospitals typically encounter 0.73 patients with large-vessel strokes who are under the age of 50, but within a two week period, they encountered five, and all were Covid-19 positive. It’s a small sample size, but the trend is concerning.

As time passes and more information is published about what this disease looks like in its various presentations, it seems to start in many patients as a respiratory illness, but when patients become ill with it, it is because it has transitioned into a disease involving blood clots and/or severe inflammation within the arteries. Report after report has emerged of patients who are awake and talking with emergency medicine physicians and healthcare providers, who then quite suddenly go into cardiac arrest and die. Stories of patients losing limbs and fingers/toes due to blood clots are emerging. Lungs are full of blood clots (pulmonary emboli) in many patients. Stroke is yet another complication of blood that easily and readily clots when the brain is the organ on the receiving end of that impact.

And now children, who were initially thought to be safe from Covid-19, with “mild” or no symptoms initially, are being reported as developing inflammation within their arteries and going into heart failure, in what is similar to a syndrome known as Kawasaki disease.

(Click here for a good mainstream media article summarizing various effects of Covid-19 in layman’s language.)

As for my own patients – what I am personally hearing from people who have experienced strokes in the past who have been infected more recently with Covid-19 is that they seem to be losing the progress they made previously through rehabilitation and time. Old stroke symptoms from their prior brain injuries are rearing their ugly heads again, and deficits that they thought were in their rearview mirrors have now arisen again. This can happen after a stroke with any bodily infection, whether it is a urinary tract infection or pneumonia, and is called recrudescence.

As businesses begin the reopening process, we are still seeing tens of thousands of new cases emerging daily in the United States, and the death count in this nation now exceeds 78,000. Mind you, this is the death count. We’re not talking about patients who survive Covid-19 with long-term scarring in their lungs, or those who have suffered limb amputations or disability associated with strokes. We also still do not know what the long-term toll of this disease is. It was only about seven months ago that this virus began infecting human beings, and we really don’t know what the long-term effects will look like a year, five years, or ten years down the road.

I’m not trying to be unnecessarily alarmist or cause panic. I care about our economy. I deeply care about jobs, livelihoods, and businesses. But as a physician, I am being real.

I also know that people who need to get back to work will not be successful in the work place long-term if they are trying to recover from the aftermath of strokes, or if they have long-term breathing problems because of the lung damage they have sustained. I am looking at the Covid-19 pandemic as a long-term battle, and do not want all of the sacrifices that have been made to fight it to be in vain if/when it just keeps returning.

I mentioned in my previous blog post that Dr. Anthony Fauci announced to the press in March that models were projecting deaths of 100,000 to 240,000 people in the US, and reporters argued with him in disbelief. They didn’t like it. They didn’t accept it. He basically said he hoped for a better outcome, but the numbers were what they were. We are getting closer to this estimated range each day.

We can feel emotionally impassioned, bored, scared, or beyond ready to resume life as we knew it only a few months ago.

But unfortunately, viruses don’t play by our rules.

Fear accompanies loss of control, in Covid-19 and in stroke

In 2012, I walked through a cemetery in Cashion, Oklahoma, eager to find the final resting places of my grandmother’s seven siblings and many other long since departed ancestors and relatives. My grandmother, Alta Jane Anderson, was still alive then, going strong in her assisted living facility in Houston, Texas at the age of 92, her mind as sharp as it had always been. She could talk March Madness brackets each year, still read a book every week or two, and never forgot the birthday of any of her children or their spouses, her seven grandchildren or their spouses, or of her 18 great-grandchildren.

When she suffered her ultimately fatal hemorrhagic stroke at 96 years old on my son’s third birthday, April 21, 2016, my aunt put her on the phone with me, and she said, clearly in pain and her speech heavily slurred, “Hi, Sweetie. Is Alexander having a good birthday?” How in the world did she have the mental clarity or compassion in that moment to ask me that, instead of being concerned for herself? To this day, she carries the distinction of being the person containing the most genuine goodness within her of anyone I have ever known.

My final visit with my grandmother, 2016

As I walked through this sleepy rural graveyard, I called Granny on my cell phone, unsure of where to begin in my search for departed family members. Her voice lit up at the sound of mine, as it always did when any of her family called, and then she verbally navigated me to the correct area to pay my respects. Granny was born in 1919, and as I saw the grave stone of her older sister, Lottie, and the year of her death (1918, at age 20), the reality of my grandmother having never met her older sister enclosed around me. Lottie’s three month old infant son was buried next to her, having perished only four days before his mother.

I asked my grandmother what took both of their lives at such young ages. Her reply sounded like something out of a dusty history textbook, from a time in the very remote past: “It was the Spanish flu.”

(Interestingly, this pandemic received its nickname because the Spanish press was free to cover the impact of this flu, not because it originated in Spain.)

After finding other family grave sites, I wandered over to a shaded area beneath the canopy of a beautiful tree, and Granny and I proceeded to have a conversation about the great influenza pandemic of 1918. She recounted her mother’s stories of how her family could not have a proper funeral for Lottie and her son because of the fear around group gatherings, and the fear others had of catching this deadly flu. Burials were significantly delayed because of the high number of deaths within a short period of time, and local undertakers became overwhelmed.

As I sat in the cemetery on that gorgeous Oklahoma spring day, I distinctly remember having this thought: Thank goodness we live in the age of modern medicine and don’t have to live through the heartbreak of such a pandemic.

After all – the influenza pandemic of 1918 occurred during a time when only black and white photos were taken, almost a decade before the first “talking” movie premiered. We had advanced so far past that era.

As I write these words today on April 15, 2020, 33 days after schools shut down in Durham, North Carolina and group gatherings suspended, stemming from the same fears of more than a century ago, they seem naive. Even as a physician at that time, I was operating under the assumption that modern medicine could protect us from another pandemic. I knew that clinical trials and the development of vaccines take years to complete, but at that time, it seemed even to me that our technology, medicine, and people could spare us from another such pandemic of large magnitude.

And I still certainly hope that is the case. That historic pandemic took the lives of at least 50 million people worldwide, 675,000 of which were in the United States when its population was smaller than it is today.

Yet, despite our modern medicine, and brave, highly educated, and experienced doctors and healthcare providers on the front lines delivering care, the mortality rate as of the latest reported data in the United States from Covid-19 complications is at 4.2% (26,977 deaths and 617,628 cases – likely an underestimate of cases but an overestimate of the percentage of infections who die, given the lack of testing in people with mild or absent symptoms).

There is a fear that accompanies the Covid-19 pandemic such that most people have not witnessed anything like it in their lifetimes. I have, however, witnessed it in mine, on the faces of patients for whom I have cared who have suffered strokes at relatively young ages. I have seen numerous individuals who unexpectedly, while going through life in their primes, are stricken with a disease they thought only possible in older or unhealthier people. In particular, when a specific cause for the stroke cannot be identified, many of them initially live in daily fear, wondering if and when it will happen again.

Their fear stems from the unknown, and from the lack of control they have in their situations. Many of these healthy young people have asked me, “How is my cholesterol doing?” When I would inform them that their cholesterol had nothing to do with their strokes, often the question that would follow would be something to the effect of: “So what can I do not to have another one then?”

When Covid-19 existed primarily in China, much of the chatter in the western world among younger and healthier people involved words to reassure themselves that they would be safe, such as: “It’s really only older people and people with weak immune systems who die from this.” While older and immunocompromised patients are in the higher-risk categories for perishing from Covid-19, it didn’t stop the alarm many felt when stories began emerging of healthy young people who had succumbed to the disease. The 30 year old school teacher in New Jersey. The 39 year old disc jockey in Florida. The 17 year old in California. Eventually we learned that up to half of patients ending up in intensive care were under age 65. This did not fit our current ideas about flu, pneumonia, or any other passing viral contagious diseases to which we have become accustomed as a society. How, then, to ease the fear and gain a sense of control again?

What I have witnessed in stroke care since becoming a vascular neurologist in 2010 has been very similar. How do we explain it when a healthy 25 year old dies unexpectedly and quickly from a stroke when she had her whole life ahead of her? Is there a way of ever feeling in control again after witnessing such a thing?

Recently, I observed Dr. Anthony Fauci, the now-familiar face of the National Institute of Allergic and Infectious Diseases, speaking at a press conference, explaining that models were projecting a “best case scenario” of 100,000 to 240,000 deaths in the United States from Covid-19 if social distancing continued. Members of the press immediately launched critically into him. What they seemed to be saying was…we don’t accept that. That’s not right. He kept looking back at them, reiterating that the numbers were suggesting this, that he hoped for a better outcome with continued social distancing, but this is what the numbers suggested at that time, and that he was merely the messenger of this news. They argued with him. They didn’t like it.

As I watched, I thought – so many people in this country have not faced death. They have not seen the fear on a patient’s face as he or she wonders if today is his or her final day. This is the first time in the lives of millions of people when they have truly had to confront the question of how much time they have remaining, and they, understandably, find this distressing.

I have written before on The Stroke Blog about how I try to live my life to the fullest each day, not knowing if each day will be my last, because I have seen so many young people who think they have decades in front of them, only to find themselves struck unexpectedly with disability or death. It led me to a telemedicine career in 2018 so that I could savor my days with my children while they are still young, so they can remember their mother if that last day does arrive earlier than expected. It has led me to reflect on why stroke-related deaths in “young” celebrities impact us emotionally. Two years ago, stroke survivor Brett Patterson shared his story of searching for answers as to why he had a brain hemorrhage in his 20’s. He would be the first to tell you that he lives each day now with gratitude and perspective since that time, understanding that each day counts.

Silver linings exist in each human tragedy, as difficult as they may be to find. In the case of the Covid-19 story, perhaps a silver lining is bringing perspective to millions about the fragility of life such that we can learn to appreciate our days here, and understand what young stroke survivors have already known about the importance of making each day count. It’s the understanding that we can and should follow the recommendations of public health officials to prevent the spread of the virus and save as many lives as possible, but to find joy in the everyday-ness of life. Knowing that the ordinary is extraordinary. Having a conversation with a neighbor. Dining in a restaurant. Taking kids to school. Birthday parties. Working. Life.

Tomorrow is not guaranteed to any of us, global pandemic or not.

“Puckett Will Park It”: Reflecting on Stroke In Young People During the World Series

I was born in Houston, Texas, and have fond memories of going to the Astrodome in the 1980s with my grandfather to watch the Astros play baseball. They knew that orange was the new black way before Netflix existed, as did their fans. This year, needless to say, I excitedly cheered them on this year’s impassioned team during the World Series, and while they ended short during game 7, man – what a fun journey. Congratulations to the Washington Nationals on a hard-earned victory, and to my Astros on a fantastic season!

As I have watched games this year with my baseball-enthused fiancé (who became my husband on October 12th, thus my new last name!), I began reminiscing on World Series from years past. In particular, I remember watching the Atlanta Braves (the popular team in my area as I was growing up in South Carolina) take on the Minnesota Twins. It was another seven game wild ride, with the Twins as the victors ultimately in game 7. I could not go away disappointed, though, because over the course of the Series I grew to like the Twins. In particular, a player named Kirby Puckett captured my attention. Fans in the stands held up signs that read: “Puckett Will Park It.” When he retired from baseball in 1996, his batting average was the highest of any right-handed hitter since Joe DiMaggio. He was strong, enthusiastic, and brought his A game when it mattered. He was inducted into the hall of fame in 2001 (his first year of eligibility).

After reminiscing about Kirby Puckett’s years in baseball, I asked my at-the-time fiancé, “Whatever happened to Kirby Puckett?”

He replied: “He died a while back.”

Whoa! Say what?

When I took to the internet to figure out what happened to Kirby Puckett, I learned that he died from a hemorrhagic stroke at the age of 44, thought to be due to high blood pressure. His health had declined after leaving baseball, and stroke did not have mercy on him simply because of his relatively young age. He was the second youngest baseball player inducted into the hall of fame while still living (Lou Gehrig being the youngest). Having been an elite athlete earlier in life was not enough to save him from the devastating effects of stroke or the diseases that increase the risk for it.

For those of you with hypertension (high blood pressure), I implore you to follow up regularly with your healthcare providers. High blood pressure may not “hurt” in most cases, but unfortunately the first real symptom of it can be a stroke, heart attack, kidney failuure. Hypertension is the number one modifiable risk factor for stroke (meaning – the top condition leading to stroke that we can actually do something about; age is the top risk factor, but nobody has figured out how to stop the clock yet).

High blood pressure is not to be ignored, and it is not to be taken lightly.

Stroke awareness arrived early this year

On the evening of February 13, 2019, I awoke from a deep sleep and could not feel or move my entire right leg. I recognized that it belonged to me, but when my brain would command it to move, nothing happened. It just laid there, a significant portion of my body, not responding.

I did not have a stroke.

Several weeks earlier, when I jumped over an inlet of water on the beach, as I landed my right leg bent sideways (ouch!), and I felt my knee effectively come apart. Sorry if this is gross, but it’s the truth – I could feel two bones (femur and tibia) separate when I landed, and then snap violently back together. I was instantly filled with dread, wishing I could hit the rewind button and not have made that jump.

The same thing happened to me during my regional track and field meet my senior year in high school 22 years earlier after a landing-gone-bad during the long jump event. At that time, I had torn my ACL and MCL (two ligaments that provide structural stability to the knee) as well as my meniscus (the cartilage cushion for the knee). It required surgical reconstruction, six weeks of immobility after surgery, and then months of extremely painful rehabilitation to return to walking/running. When I landed on the beach in the same way as I had landed during that fateful long jump in high school, I thought – surely I haven’t torn my ACL and meniscus again. What are the chances?

It turns out that it’s pretty common to tear a grafted ACL after an earlier ACL injury. As a physician, I believe I learn something new every day. The MRI the following week confirmed that I had torn my grafted ACL and my meniscus while also fracturing the top of the tibia (known as the tibial plateau – a common fracture to sustain with an ACL tear).

It is not melodramatic to say that I had moments of terror at the thought of going through surgery again. When I underwent surgery at 18, I had not yet become a neurologist, and had not seen a multitude of strokes that occurred in healthy patients while they were under anesthesia for procedures, but now I had. I feared I was going to awaken during surgery. I feared that I would develop a wound infection after surgery that would spread and that bacteria from that infection would start growing on my heart valves and in my brain (physicians can make horrible patients, by the way). I feared that I would experience a complication during surgery beyond what anyone thought possible and would end up in a medical journal as a case report. I had listened to the “Dr. Death” podcast – what if the surgeon did something completely awful to my knee and I was never able to walk again? My perspective was heavily biased, because I was so much more aware of the worst-case-scenarios this time around.

My fiancé continued to reassure me that I would be okay, and that I would return to running by the spring. He clarified that he would help me after surgery while I couldn’t drive for six weeks, and while I couldn’t get up and down the stairs in my house.

Anyway – I underwent surgery on February 13, 2019 to have my Humpty Dumpty knee put back together yet again. When I awoke from anesthesia 22 years earlier, almost immediately I experienced tremendous pain, and then severe nausea from any pain medication given to me. I don’t know if the pain or the nausea was worse. This time, though, I felt absolutely no pain upon awakening, because I felt nothing in my leg. A femoral nerve catheter had been placed by the anesthesiologist, effectively putting my leg to sleep. It was a surreal, bizarre feeling to have lost all sensation and movement in a limb essential for walking. For three days, I felt humbled every time I could not get myself onto a commode or could not shower or bathe without substantial assistance. I could not perform my activities of daily living (“ADLs,” we call them in the stroke and rehab world).

This loss of autonomy and independence sent me into a deeply reflective state as I recognized what my patients who have survived their strokes experience. I had the great privilege of knowing that once the nerve catheter was removed I would regain movement and sensation in my leg. Stroke survivors lack that guarantee. Some of it may return, or it may not. I had confidence that in the coming days/weeks I would be bathing, toileting, and getting around independently, that this was a temporary inconvenience. Stroke survivors lack that confidence. While my fiancé was a wonderful source of support in caring for me, being so dependent on another person when independence has been a given is frustrating. I felt guilty for being an imposition to him, even though he assured me he didn’t see it that way. How guilt-ridden so many stroke survivors must feel when they are in that position, potentially for years or even decades.

Fortunately, none of the worst-case-scenarios happened. Dr. Jonathan Riboh performed my surgery at Duke, and there were no wound infections, misplaced hardware, and no strokes while under anesthesia. This past week he gave me my clearance to start running again, and as I felt repaired knee carry me reliably during my run this morning, deep gratitude filled me to the brim. My knee seems to be in fantastic shape, perhaps even more stable than it was before my beach mishap! Thank you, Dr. Riboh.

Dr. Michael Kent, my anesthesiologist, not only ensured that I did not awaken during surgery, but that I woke up after surgery in good shape, and that I did not endure the excrutiating pain that had made me so miserable 22 years earlier. His placement of the nerve catheter also gave me a lesson in stroke awareness that, despite spending my days evaluating and treating stroke patients, had its own uniqueness to it. Thank you, Dr. Kent.

How often does a physician get to walk in the shoes of her patients temporarily, to feel what it truly is like to lose use of a limb? I recognize that I did not experience trouble swallowing, neuropathic pain, the loss of my dominant hand, the ability to speak, or any number of other disabling deficits that so many stroke patients face. But I remain grateful for the experience all the same.

May is Stroke Awareness Month. I encourage stroke survivors who feel comfortable doing so to share their stories as a way to raise awareness in their communities. Stroke is number one cause of long term disability in the United States and the fifth leading cause of death. We have highly effective therapies for treating strokes when we are able to treat patients early, before the brain has been significantly and irreversibly injured. The later a patient arrives at the emergency department, the less likely it is that his or her stroke can be treated. Awareness that symptoms such as a facial droop, difficulty speaking, slurred speech, and loss of movements/strength in an arm and/or leg could mean a stroke is occurring often makes the difference between calling 911 and staying at home to wait it out.

Love Is: Why Luke Perry’s Death Disturbs A Generation

Have you ever had the experience of going five, ten, maybe even 20 years and not given a single thought to something, only to find that when it pops up on your radar again, it repetitively re-enters your world in an almost surreal way?

I am having that experience right now with a television show that was incredibly popular when I was in middle school and high school called Beverly Hills, 90210. I arrived in Honolulu, Hawaii a month ago for the International Stroke Conference, and as I was checking in at the hotel, I noticed a blues and jazz club entrance in the hotel lobby – The Blue Note. I did not have anything on the agenda for the evening. My father had just turned 70 in December, and surfing the waves on Hawaii’s North Shore had always been on his to-do list. His flight was due to arrive very late into the night. After checking in, I walked to the kiosk to buy a ticket to The Blue Note, and learned that Vanessa Williams was the singer performing that night!

Excuse me for a moment, but AAAAAAAHHHHHHH!!!!!!!!!!!!

Those who know me best understand that I am quite possibly bordering on obsessive when it comes to music of the ’80s and early ’90s, and nostalgia for that time period, no matter how ridiculous some aspects of those years may have been, runs deep within me. Don’t get me wrong – I savor the present and have a “Carpe Diem!” mindset, and don’t dwell in the past, per se. But I was only a kid then, and man I loved music and TV growing up! I have attended a lot of concerts of ’80s and early ’90s artists and bands, but had not had the opportunity to hear Vanessa Williams perform, even though I very much wanted to do so.

Vanessa did not disappoint. I had the privilege of reliving my childhood through her songs from a serendipitous front table at the base of the stage in the intimate venue of about 120 fans (apparently people had been watching The Super Bowl earlier in the evening?!). Save the Best for Last, Colors of the Wind, The Sweetest Days… but it was Love Is that hit me emotionally for some reason. With the opening notes, my mind immediately leapt back to the Beverly Hills, 90210 soundtrack, the pictures of Luke Perry that some girls had in their lockers, and how much I enjoyed hearing that song on the radio during 1993, a pivotal year as I transitioned from middle school to high school.

After the show, despite being extremely exhausted at this point since it was about midnight in Hawaii and I had flown from North Carolina that day, I was up for hours more, reflecting on middle school days. The joy of newfound independence and responsibility that came with having a locker. The rejection from someone I thought was a friend. Being 5’7″ tall in seventh grade but dancing my heart out at school dances even if I was taller than all of the guys. Learning from some of the most wonderful teachers imaginable. Laughing until I cried. Crying until there were no more tears.

That’s middle school. Or at least, that was middle school before social media and the internet.

I then stayed up even longer, reading online about Shannen Doherty’s battle with breast cancer, and Luke Perry’s acting career since his days as Dylan McKay on 90210. My dad then arrived just before dawn, and we had coffee together while watching the sunrise. What a great start to the trip!

About a week later, on the long journey back to North Carolina, I heard two people in the Seattle airport discussing the television show, Melrose Place. (For those of you who are unaware, it was a spin-off of 90210). Again, strangely, after not giving 90210 a single thought for at least 25 years, there it was in the forefront of my consciousness. Weird? Or just a coincidence?

Then, yesterday I learned, as did the rest of the world, that Luke Perry unexpectedly died at age 52 from a “massive stroke.”

Wow.

Unfortunately, I see young people who are disabled or killed by strokes with relative frequency as a vascular neurologist, and focus much of my effort around advocating for young stroke survivors (thus, this blog). It is sobering when I no longer feel surprised when a young person arrives in an emergency department with a stroke. The media is treating stroke in young people as “rare,” but it is not.

And yet, for some reason, despite being fully aware that stroke can strike the young and the old, I was surprised when I heard this tragic news about Luke Perry.

Why?

Perhaps it’s because 90210 had already been floating around in my mind since hearing Vanessa Williams perform Love Is.

Perhaps it is because I thought of my middle school-aged self during Luke’s reign on 90210, and I was so young, naïve, and innocent then. I had never seen death. I may not have even known what a stroke was then.

Or perhaps I felt stunned because Luke wasn’t really 52 in my mind. His presence on our television screens was one of youth, and that youth persists in my visual memory of him. He stayed young, even as time moved on off of the set.

Luke’s death is different than many celebrity deaths, because it touches on a vulnerability. Someone still in his prime years, young, and in a way, forever young in our minds, had a stroke. If it happened to him, it could happen to anyone.

But then again…he was 52. Is that young? Yes, I think it is, but it’s not 20 (although young stroke survivors know that one is never too young to have a stroke, but hopefully you will take my point here). Luke Perry was 52. And he died from a “massive stroke.”

And then another thought occurs…I was only in middle school when he was on billboards, in commercials, and on television; I was most definitely on the younger end of the 90210 generation, but despite being on that younger side, a few months ago I turned 40! How is that possible? 90210 (in its original form) was only on TV a few years ago. Was 52 young to me when I was 20? It certainly seems to be young now that I’m 40.

Wait. About the original 90210 being on TV only a few years ago. Make that…28 years ago that it premiered. Where did that time go? There has been much to show for it, but still…wow.

Luke’s death forces members of a generation to face the reality that we may feel young and act young, but we are getting older. Yet, it also demonstrates in the harshest of ways that people who are young can lose their lives very quickly to stroke. I have often written on The Stroke Blog that tomorrow is not guaranteed to anyone. I stand by that assertion.

I sincerely hope a day will come when we can rid the world of this awful disease.

Rest in peace, Luke Perry.

Where did I go?

Since completing my vascular neurology fellowship in 2010 and entering practice in North Carolina, I have had the great privilege of evaluating, caring for, and guiding-through-stroke-aftermath hundreds (perhaps thousands at this point) of young stroke survivors. When I reflect back on the trust that so many young adults whose lives have been forever changed by a disease they never expected to strike have placed in me, it is both humbling and invigorating, and I will forever be grateful for each and every one of these encounters, for I have learned something new from every unique experience.

I made the decision to leave my full-time job last year, and provided a six month notice indicating such in June 2018. Since making the decision to embark on a new career path (more on that in a bit), I have received numerous emails, Facebook messages, calls, and texts from friends who also know young stroke patients I have met – wanting to know why I left and where I went, if I went anywhere at all. I hope I can successfully offer an explanation here.

To start, I will share some of what my professional life looked like prior to my decision to change course. These words will also hopefully convey what the lives of many physicians are like. Our academic calendars in teaching hospitals run from July 1st through June 30th. During the academic year of July 2017 through June 2018, I was on call in some form 24 hours a day, seven days a week, for 26 weeks. Put another way, every minute of my life for half of my life that year I was on call. Overlaying this, patients I had seen in clinic would call with questions, send electronic messages, request that paperwork be completed. Just about every night, after running nonstop all day long while on call, I would get to my “in basket” late at night. I lost count of the number of times I fell asleep sitting upright with my computer in my lap, only to be awakened at 2AM by another page.

During weeks when I was not on call, I evaluated patients in the clinic setting, taught students and residents (both activities that I loved at their cores), carried several administrative titles with responsibilities, attempted to catch up on weeks of email from on call weeks, attended meetings, and if there was time, tried to write. Then, in there somewhere, I also had four young children who craved my time and attention.

Please don’t misunderstand my tone – I am not complaining, but merely describing my existence behind the scenes. While I thrive on caring for patients with strokes, and I cannot imagine any other profession I would rather have, after the years of intense on-call hours consuming 50% of my life each year while also yearning to spend time with my children, trying to maintain relationships with those I love, and fueled by a desire for decent sleep again, I reached a point of recognizing that I needed more balance. For years I could not admit this to myself. After all, I had never had a stroke, so my fatigue could not possibly rival the suffering of my patients. And I had many colleagues in both my field and in other areas of expertise who lived similar existences (or worse – years ago, I had a colleague in a procedural specialty who was on call 100% of the time when he was in town, which was about 46 weeks a year).

Year after year, I kept going, until last year, the year of being on call for half of my waking and sleeping hours. Eighteen of those 26 weeks of that particular year were hospital on call weeks, which meant I was physically in the hospital caring for patients on both weekdays and weekends. Over the years I have missed or been noticeably late for countless rec league basketball games, sports practices, piano and violin lessons, and swim meets. My children used to groan when my pager went off at dinnertime or while I was reading bedtime stories with them, but I knew things had to change when the groans stopped with each pager alert and instead they remained quiet with dejected facial expressions. It was almost like the final stage of their grief – acceptance.

As I detailed in a previous post (if you are interested, click here), one of the wonderful experiences I gained during my time at Duke was becoming familiar with Duke’s telestroke network. Briefly, the idea behind a telestroke network is to place a neurologist at a stroke patient’s bedside in communities where neurologists would not otherwise be available. When I would receive a telestroke page, I would sign onto a computer, securely video conference with the patient in whom stroke was suspected, and partner with the emergency medicine or internal medicine physician at the hospital requesting help on which steps to take to properly and rapidly treat the patient. It has amazed me that so many hospitals across the United States who have never had access to neurological care for stroke patients can now have a neurologist at the bedside within minutes under this model. Patients in these areas are receiving IV t-PA (the “clot-busting” medicine) at much higher rates because of this access, and those who are eligible for thrombectomy (a procedure in which a large blood clot is removed from an artery) are being selected for transfer to hospitals where this service is available.

I have had many a patient encounter in the outpatient clinic setting that has led me to feel sadly remorseful as I ponder why a patient did not receive IV t-PA when it seems from the person’s story and medical chart that it should have been an option, but it was not administered in those first critical hours. Why didn’t an eligible patient receive IV t-PA? Why didn’t an eligible patient undergo thrombectomy when numerous clinical trials have shown how beneficial it can be to long term outcomes? Frequently it is a matter of lacking quick access to neurologists who are comfortable evaluating these patients and backing up emergency medicine providers in implementing these interventions.

As I pondered last spring how to achieve more personal balance while also continuing to treat stroke patients, I began to consider the reality that so many patients are disabled or not disabled based on what happens in those first critical hours, and that I could have a phenomenal impact if I focused my time on working with telestroke networks. I could evaluate hundreds, if not thousands, of patients each year, help emergency providers distinguish between stroke and conditions that mimic stroke, treat eligible stroke patients with IV t-PA, coordinate getting eligible patients to sites to undergo thrombectomy, and so much more.

As I investigated the possibility of performing telestroke work full-time, I found a number of hospital systems seeking vascular neurologists to provide telestroke care. Among them was Sentara, a healthcare system comprised of 12 hospitals and numerous outpatient clinics in Virginia and North Carolina. As soon as I spoke with the medical director of the telestroke program at Sentara, I knew I wanted to be a part of it. I also became aware that my medical school alma mater, the Medical University of South Carolina (MUSC) was seeking to hire more vascular neurologists for its telestroke network. I was already part of the Duke telestroke team, and months after my notice of resignation from my full-time position there, we worked out an agreement for me to continue to provide telestroke coverage.

In addition to having the opportunity to provide a lot of care to a lot of patients under this model, I also knew it would give me flexibility – the ability to work from home, to control my hours such that I could prioritize time with my family, and to limit the stretches during which I was on call so I could sleep regularly. So far, the journey has been beautiful. I have sincerely enjoyed telestroke work thus far, and feel that balance has finally been achieved.

When I find that I have free time now, I am using it to write. I had started writing a book in 2017 on cerebral venous sinus thrombosis, but my work load and rigorous on-call schedule had prevented me from completing it. I’m back on track with it, expecting to publish it by the end of 2019. The Stroke Blog is up and running again. Amanda Anderson (my co-author, former patient, and friend with whom I collaborated on Carotid and Vertebral Artery Dissection: A Guide For Survivors And Their Loved Onesand I are in the process of outlining another question and answer guide for stroke survivors. Many people have passions that drive them, and writing has always been one of mine. Without writing, I feel that a void develops in my life.

For those of you who were my patients, I wish to communicate the following: First, thank you again for your trust. Please know how much I learned from you, and how deeply I appreciate the encounters we had. I truly loved tracking down the sources of your strokes, working on action plans with you for how we were going to prevent further strokes, and determining how we were going to address symptoms from your stroke aftermath. Caring for stroke patients in a clinic or a hospital grew into my passion for advocacy for stroke survivors because of what you were willing to bravely share with me. Caring for stroke survivors is much more than just a job to me.

At this point, I am not in a new outpatient clinic or an environment to do outpatient work. However, I am very interested in starting an online telemedicine practice to provide this very service for young stroke survivors. I have seen what telemedicine can do in the format of telestroke networks, and can only imagine the possibilities with an online e-medicine practice. We think of medical practices as residing in a bricks-and-mortar building, where patients transport themselves or are transported by others to this building during traditional business hours, wait in a waiting room (sometimes for hours if the office is running behind schedule), and receive a limited amount of time with a specialist provider. I want to change that.

Imagine that you have an appointment with a specialist who is 200 miles away at a big hospital, and all you have to do to physically see and speak with that person is log on to a computer or bring up a phone app. If the physician is running behind, he or she texts you to say he or she is behind, and instead of sitting in a waiting room for minutes or hours, you go about your day at work or in your home. When it’s your turn, he or she texts you, you sign on, and the visit starts. No travel time, no parking hassles (huge deal for stroke patients), no hotel room or airplane flight or additional gas in the car. No taking the day off of work or having to find someone to watch the kids. Does this have potential? I think it does.

To summarize the answer to the question of…where did I go?

The answer is…I am still here, although my path has changed. And I am very much looking forward to what each day brings. You have all taught me that life is precious, time is a gift, and nothing is to be taken for granted. I have witnessed wonderful mothers and fathers who are younger than I am now with their lives abruptly and unexpectedly cut short by stroke. If my life were to suddenly end, my great hope is that my children will know how much I loved them, and will cherish the time we had together.

Despite how much we attempt to keep the risk of stroke for ourselves as low as possible, none of us are immune from having a stroke tomorrow.

Tomorrow is not guaranteed to anyone.

And that includes me.

Reflecting On Stroke Anniversaries

Usually I associate the familiar phrase “The days are long, but the years are short” with the raising of children. It’s astonishing how exhausting days are with the sleep-deprivation that accompanies caring for newborn babies, chasing toddlers, or correcting a sassy pre-teen, but then – BAM!! – they are grown. Where do the years go when the days can seem so long? And as difficult as raising young children can be, when looking back on the challenges, there is an almost surreal quality to it.

It occurred to me recently that my patients have expressed to me this same sentiment with the process of stroke recovery. The long days in the hospital, then the acute rehab process early on with exhausting therapy sessions, then outpatient therapy while trying to return to life as “normal” when a new normal has arisen, and the previous normal no longer exists…wow. These days can drag on and seem absolutely interminable.

But then, the one year anniversary after surviving a stroke eventually arrives, then the two year anniversary, and then – five years have passed. The stroke anniversary remains etched in minds and hearts, and carries its own special significance. When the anniversary passes each year, it can bring many emotions.

  • Fear – “Will it happen again?”
  • Grief – “I miss the person I used to be and the life I used to have.”
  • Discouragement – “My doctor said I will stop improving after a year – does this mean I won’t continue to get better?”
  • Encouragement – “Look how much progress I have made!”
  • Victory – “Five years later, I’m making it each day – stroke isn’t going to stop me.”

(That whole you-won’t-improve-after-a-year thing is ridiculous, by the way, particularly in younger patients. Every person is unique is his or her recovery, and I have seen young patients still showing improvement three years later.)

Having heard and witnessed so much devastation that arises from stroke, I began feeling confused over time as some patients began sharing gratitude for their strokes. Grateful? For a stroke? How could that be? And as I have listened, the reasons have been numerous:

  • “I never would have chosen to have a baby if I had not had a stroke – it forced me to re-examine what I wanted in life.”
  • “I appreciate the little things so much more now than I did before my stroke.”
  • “I met the love of my life at a stroke support group.”
  • “I was so stressed out at work before my stroke and was burning at both ends. The stroke forced me to slow down and re-focus.”
  • “Before my stroke my house had to be absolutely perfect. The other day I found my two year old son coloring on the living room floor, and I was so grateful for him that it didn’t bother me.” (I have to remember this one patient’s story on a weekly basis.)

Perhaps this is what I find so inspiring about stroke survivors – the resilience in these statements, the search for the silver linings, and the way they keep going after unexpected life-altering events.

The Stroke Blog has been relatively silent recently as I have attempted to find my own sense of balance. Writing has always been a passion, and unfortunately it took a back seat to many other competing obligations over the past year. In the new year, though, it has moved closer to the front, and for that I am immensely grateful. I will be updating you on many topics, and look forward to the ongoing journey.

Here’s to a new year!