Like a tangled up ball of yarn… getting the brain and the body to talk again… healing from post-concussive syndrome

I started rehab daily within a week after the car ran a red light and hit my side of the car. I did exercises for my eyes, my balance, the logic part of my brain, the memory part of my brain, and more. I did them continuously for four months from December to April. I did not want to use pain medication. I changed my diet to more plant based and nutrient dense. I stayed hydrated. I practiced/taught qi gong several times a week and meditated daily. I tended to my sleep hygiene and took supplements based on evidence based research. I did cardio every day and rested and took naps. I could feel myself progressing for four months. Then my healing hit a wall. I still struggled to focus and talk for more than an hour without head pain. My medical team did their best they could and we also hit a wall. (e.g.”go back to your life slowly and it will be zig zags of moving forward and set backs and moving forward and set backs of returning to your life. Be more confident. It is just what post-concussive syndrome is. It will just take time.”)

Two friends recommended Cognitive Fx. In late April, I went to a brain clinic that specializes in post-concussive syndrome that uses multiple diagnostic tools. At the clinic, I learned from the fMRI scans and the clinical assessments over 10 working days that many areas of the brain and structures in my body need to be tended to after the car accident. For example, I learned that my awareness and movement of my body in space were severely impaired and it might involve many structures and systems — the eyes, the vestibular/balance, cervical stability, pelvic stability, AND sensory motor. The communication is disrupted and like a tangled ball of yarn. This is why after the accident my feet turned inward when I walk, why I stopped moving my hands in sync with my feet, why I would stumble at certain points of qi gong, or why I had trouble walking up and down stairs at a normal pace.

And, it is severe. Like almost off the chart severe. Like the tail of standard deviation severe or 3-5 away from the average of patients. To the point, the staff at the clinic were being authentically kind and saying phrases like “give yourself grace” at the end of the 2 weeks.

Oof… this took a moment or many to take in. I cried in the bathroom. (Another post forthcoming about the emotional terrain, my husband Ray, Emily the cognitive therapist, and her dog George)

Ray and I returned home. And I rested. 5 – 10 hours daily at the clinic for 10 days was tiring and there were headaches and insomnia. Happily, I returned to gardening, qi gong, meditation, playing music, playing with our cat Boba, drawing. I found my sleep rhythm at home and could mitigate the headaches while boba hung out near me.

Now, it is almost a week later. And now, I can gently breathe into the sorrow AND the hope. I now can see that I have more information about how bad the accident harmed my brain AND I now have a team of experts designing exercises for my continued healing. (Everyone on the team — but special shout out to Braquel, Sotero, Jake, and Toshi). Whereas before I had no idea what was happening and limited medical guidance, I now have a path forward while being accompanied with concussion specialists from many disciplines who are all working together and communicating. (Another later post about access, equity and reimagining)

I will do daily exercises for the next 6 weeks with regular check ups… and it might take 3 months to a year or longer… because we have to heal many parts of the brain, the eyes, the balance, and the sensory motor separately and together. For example, the car accident impacted my cerebellum in the bottom back of my head known as the little brain. Based on different tests and trying different treatments over the two weeks, one factor might be that the cerebellum is disrupting the signals from brain and body. So, the physical movement and brain function below is one piece…

So below not only shows some of the things we practiced (not exactly because this is an old video) and some of the rationale if you are interested.

Next week, I restart the exercises and the tailored rehab program. Buckle up for this next phase…. breathing in, breathing out.

5 exercises neurologists recommend for optimal brain health

P.S. I also learned it is not only what exercises to do but also how the exercises invite another way of being….

“It is important to a small amount of exercises daily – consistent and to allow your brain to activate then rest, activate then rest. ” – Jory, Occupational Therapist, Cognitive FX

And this emphasis on the how not only is biomedical but also epistemological….and how we approach living in this moment (more on this in another post and what I learned from the other patients like Mike, Suzanne, Paul, Ryan, Lu Shan, Rachel, and more)

Doing consistent daily practices in small amounts changes our relationship to our brain, ourselves, and the goals. It widens it to include a different rhythm than working a 60 – 80 work week of intense brain activitity or grinding to try to return to a grind life. (Paraphrased) – Dr. Toshi, Neuromuscular Therapist, Cognitive FX