The second month of recovery was no different from the first. I had some small improvements in my symptoms, but they're all still hanging on. As of today, I've had a headache and nausea every hour of every day for nine weeks. My speech is slightly better, but still not good. I haven't regained any of my lost skills yet. My emotions are still on lock down.
You may be wondering how I can write these blog posts. It isn't easy. I am a medical writer by profession, and used to writing dozens of pages of data dense and highly technical text on a daily basis. These posts take hours to write and wear me out for days afterwards. I push myself to do it so I have both a means of communication and a connection to life I had before my brain injury.
Most people with MTBI recover within days or weeks of their injury. When that doesn't happen, it becomes Post-Concussion Syndrome (PCS). PCS can last for months or years, or forever. It is poorly understood, and recovery from PCS can be very erratic with many regressions. It's the reason why careers end after MTBI.
A visit to my neurologist at Week 6 confirmed that I hadn't recovered from MTBI, and my diagnosis was now PCS. I was devastated. My neurologist referred me for a neuropsychological evaluation to determine exactly where my deficits were, and to recommend a rehabilitation program to improve my brain function.
On August 12, I went to Bryn Mawr Rehabilitation Hospital for the neuropsychological evaluation that included an extensive interview and several kinds of neurological and cognitive assessments. The evaluation was in the morning, which meant I was fresh and not tired when I started. Best foot forward, and all that. I thought I did pretty well, and was a little surprised when the psychologist called me the next day to tell me I needed physical therapy for vestibular and fine motor control issues, occupational therapy for cognition and vision, and speech therapy.
Scheduling all these therapies is difficult. People take vacations in the summer...even people who provide therapies at brain rehab hospitals. My first sessions aren't until August 29 and 30. I'm very impatient and want to get started immediately...the sooner I start, the sooner I get my life back. The plan is to repeat the testing after 6-8 weeks of therapy to see how I'm doing, and if I'm ready to start transitioning back to work.
What I thought was a week off from work will now be more than 4 months.
I received the written report of the neuropsychological evaluation a couple of days ago, and I was horrified by what I read. My scores for some of the cognitive skills were in the 15th-20th percentile. I scored very low for verbal memory, reaction time, visual motor speed, processing speed, attention, visual processing, and expressive language. Cognitive efficiency (the speed to balance demands of speed and accuracy) was the worst, at 7%. My expected pre-injury baseline scores were well above average...in the top percentiles. And here I am now, with only a small fraction of my previous cognitive abilities.
I am a scientist and a writer, but the part of my brain responsible for those things isn't working. My analytical skills are missing. My verbal communication is poor. I cannot properly understand or develop strategies.
I am a scientist and a writer, but the part of my brain responsible for those things isn't working. My analytical skills are missing. My verbal communication is poor. I cannot properly understand or develop strategies.
The road just keeps getting longer.
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