What I Learned from My Concussions & my APOE4 genotype.

I’ve bashed my head a few times. Sometimes much worse than others. I’ve had at least three good ones, but also a few smaller ones along the way. I also have two APOE4 alleles, which only 2–3% of the population have. This is the genotype that is popular in Alzheimer patients. I have always been dedicated to my health. Here is how things went.

The first good concussion was when I was in dance class as a kid and I did a russian (looks like this) off the inner tube and went so high I turned in the air and landed on my upper back and hit the back of my head so hard on the mat I took a jacket and screamed into it. I don’t remember much else about it. It was the 80s.

My second concussion was a failed mechanical while cycling about 10 years ago. It was wet and cold. I stood up with hands in the drops, and shifted into the big ring to race my friend down the street and the chain popped off the front chainring. I lost control of the bike and rode right into a ditch face first. The handlebars dug into my chest and the front of my helmet bashed in my forehead pretty good. I was unconscious for about 30 seconds. When I woke up the entire neighborhood was standing around trying to help me. It was terrifying. People were asking me what happened and I could fully explain in detail– except I kept repeating myself. I was also seeing “stars” mainly out of my right eye for about 20 minutes. Otherwise, I was ok. I may have cracked my sternum because sparring in Taekwondo proved painful in subsequent weeks. I got up from the ditch and rode three miles back to a parking lot and had a friend pick us up and went home.

I read about not cycling for two weeks after a concussion because of the increase in chance for another crash. I couldn’t handle it. I rode anyway about a week later. I was feeling fine anyhow. Except I crashed again. This time I didn’t hit my head. I miscalculated the speed at which I was going around a curve, downhill, on an unfamiliar road. There was a dip in the pavement and at 35mph my bike and I went airborne, and landed rubber side down. I tried braking and that was when I hit the pavement. I hit with my arms first, my shoulder next and slid down 10% grade hill on my back with my bike on top of me. My new $300 Castelli winter cycling jacket and tights were shredded. I broke my clavicle in four places and a couple of ribs. I crawled over into in a ditch and tried calling friends who never answer their phone because calling someone is “weird.” They may answer with a text an hour later. “Did you try to call me today or was it a butt-dial?” I finally got someone to take me to Zoomcare because I wasn’t sure if my college health insurance had kicked in yet. They X-rayed me, saw my broken clavicle and told me I should go to the hospital. I had surgery and now I have a titanium plate. I couldn’t ride for weeks. Except I did. On a trainer. I thought if Ted King could do it so can I. At least it wasn’t another concussion this crash.

My third concussion was also from a cycling crash a year before COVID started going around. I adopted a dog from a shelter and she was the fastest dog in town at the dog park. I wanted to train her to run next to me while I rode. When training I used a kid’s bike for easy stop, start and I could use my tennis shoes. She got to be pretty good going 8–10mph next to me while I held her leash; she loved it. This was until she saw a cute bunny. It was more enticing than listening to her owner (high-drive working class Doberman mix). She dragged me like a sled dog and when the bunny hopped onto the other side of the road, she followed and I had no choice but to hit my front brakes– the ones I had control over. I went head over handlebars and fell flat on the side of my face on the paved bike path. I hit my head, not hard, or so I thought. Except this time I just happened to NOT be wearing a helmet. (No dog or bunny was harmed). I always wore my helmet; I just didn’t this time because it didn’t seem like a big risk riding on a kid’s bike at 8 mph on an empty bike path and she was always so good. I wasn’t unconscious but I couldn’t see out of my right eye for about five minutes. I sat and let the adrenaline rush out of me and got up and rode three miles back to the car.

My husband drove me straight to the ER. “Follow my pen with your eyes…You’re fine. Here’s some painkillers. Watch for a concussion.” $1500. Except it was obvious to me anyway that I had a concussion. I went home. I couldn’t do anything for a few weeks but lie around. Except I’m stubborn. I couldn’t handle light or reading so I tried doing those things everyday until I got a migraine. Migraines would last all day. I couldn’t ride in the car without getting dizzy. I would walk around until I got dizzy and lied down. I tried getting on my bike on a trainer and could only ride 10 minutes before I had to go back to sleep. I decided I needed to keep my brain active so I learned Italian because I hate math. I decided to research my genealogy because I’ve always wanted to know more about my family history. I scrolled documents and read them in other languages. I took the 23andme DNA test mainly to learn about my heritage. It told me that I had 2 APOE4 alleles. “Wow, I’m so f*ked,” was my only reaction.

A neurologist gave me beta-blockers which made me feel like dying because my HR and BP are already so low. I couldn’t do anything but sleep. I quit taking medication. I hate taking pills.

I had electrical ‘zaps’ that I could hear inside my head. The neurologist thought that was odd but didn’t say much else about it. My MRI and angiogram indicated I wasn’t bleeding in my brain, and I wasn’t at risk for stroke. Five years later, once in a while I still hear a ‘zap.’

My speech was affected. I slurred a word every few sentences. I would catch myself and it was frustrating to say the least. I forget words to things and make them up as I go along still to this day. For example, mute became ‘nute.’ Things aren’t so bad now, but I still catch my self saying things like, “hot cream”= Tiger Balm.

I get brain fog. It’s pretty good really. I’m not sure how much of it is related to perimenopause or my TBIs, but somedays my brain just doesn’t want to function like it did. I have motivation issues, I get impatient and irritable more frequently and somedays I can’t even Google a topic.

Soon I began researching my Alzheimer risk. I listened to Dr. Rhonda Patrick’s findings on APOE4 and dementia. I listened to Peter Attia’s podcasts, I listened to Andrew Huberman’s podcasts. I find all of their work fascinating.

I learned that I am also at risk of diabetes on my father’s side (he’s on Metformin), and after reading Peter Attia’s Outlive book, I begged and begged my PCP to get me an LP(a) test when “your cholesterol is fine.” The test came back 10 times higher than what it should be. She didn’t know what to say. So now I know not only do I have to worry about my blood sugar, but my cholesterol as well and then just try not to have anymore TBIs. Not too hard since I’ve been vegetarian since high school.

I learned that the only proactive things that I can do– are ride my bike, sleep, eat low saturated fat diet, low in sugar, and eat lots of vegetables, keep learning things, and hope that I can offset dementia by a few years. I would LOVE to race my bike again, but with the risk of another concussion– it is too high. I will just race solo on Strava instead.

One thing I learned in all of this is that you have to OWN your recovery and that NO ONE will come and save you. Your PCPs won’t care, they will think you’re making things up, that you are trying to “play victim.” You just have to own it, be proactive and fight back. Yet, there is still a lot we don’t know.

Things that I do proactively in addition to eating a diet low in saturated fat and low in sugar, is that I quit drinking alcohol although I never really was a drinker aside from a glass of wine here and there. I still ride my bike, and incorporate sauna from time to time. I try to focus on getting ample sleep without interruption. I take a multivitamin, extra calcium (as my DEXA says my bone density isn’t that great from so much cardio), I take 2000–4000 IU of Vitamin D depending on the season, and 4000 mg of Omega 3 fish oil, a probiotic, and I just make sure my Vitamin B12 is up to par. I track my food intake with Cronometer and noticed that I don’t get enough choline, mainly found in animal products, so I just started supplementing with that. I also started supplementing with creatine this year. I try to get bloodwork done once a year. I am still trying to work in a strength training routine which is hard because cycling is so addictive. What else, I don’t know I just try to learn new things everyday.

If you read this and are a researcher, I am available for medical studies if you want me. Anything I can do to help aid in research of concussions or 2 @ APOE4 alleles or both.

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