Vertigo, ataxia, migraines, brain fog, weakness, difficulty swallowing. I was trying to become more aware of everything I was experiencing…everything. I think that only made things worse for a while. I began to recognize more and more symptoms. It’s no wonder this was so confusing to me and my neurologists. I noticed that I was avoiding eye movements. Looking around the room and attempting to focus on an object caused vertigo and pain behind my eyes. I began looking straight ahead in a narrow field much of the time, avoiding the pain and vertigo as much as I could. I felt a sensation of weight pushing down on my neck at the base of my skull. At the end of the day, when I would lie down in bed, my legs felt heavy and a little tingly; similar to how they feel the night after running a long race, like my nervous system is overly fatigued. To ensure that we weren’t missing anything, Dr. Mudivarthi referred me to a neurosurgeon in Redwood City. The neurosurgeon reviewed my MRI’s and could not identify any signs of disease or injury in my brain or spinal cord. I sought a third opinion from another neurologist at Kaiser, who concurred with my first two neurologists. Up to that point, we had tried everything that we could have. My Chiropractor also reviewed my MRI’s and X-rays, he also could not come up with a plausible explanation for my troubles. It seemed that my problems were neurological in nature, but the many different symptoms that I was experiencing didn’t necessarily point to one disease or disorder. In fact, they could have indicated many different neurological conditions.
Prior to the appointment for the nerve conduction and muscle function study, I tried to assure myself that everything would ultimately be fine, but that didn’t work very well. However unlikely it was that I had a motor neuron disease, my mind could not resist slipping into a place of fear for what the diagnosis could be. I was afraid of the possibility that I could be permanently disabled or be facing a life-threatening situation. Was it possible that all of my symptoms were the early stages of a serious disease or disorder? Was I going to end up disabled, and not be able to enjoy whatever time I had left? Would I become a burden to Tammy and my family? These were some of the questions that I was asking myself back then. Those questions almost seem irrational to me in hindsight, but with what I was experiencing at the time, I understand why I was so scared. Here I was, a longtime runner, personal trainer, a proprietor, employee of a gym, and working in a Physical Therapy clinic; and I could barely walk.
One night while I was closing up the front windows of our house and navigating around two chairs, I turned my head and my legs completely gave out. I crashed to the floor without warning. I had to pull myself up with help from the coffee table because I did not have the leg strength to lift myself. Nothing like that had ever happened to me. Helplessly falling to the floor, while simply trying to walk around our house, was demoralizing. I was already unable to run, or workout in any other way; and it was getting increasingly difficult to work, but now regular daily activities were becoming unsafe to perform. I began to fear that I would never completely recover. For the first time in my life, I felt like my body was failing me. Having to wait for the next diagnostic step was becoming harder by the day.
When test day arrived, I woke up pretty excited despite my fear. I wasn’t going to have to wait much longer to get the results of the neurological tests. However, had I known exactly how painful those two tests were going to be, I probably would have been dreading that appointment. Nerve conduction and EMG/muscle function studies involve probing various nerves and muscles with needles; applying electrical signals to the nerves and measuring the electrical activity inside the muscles while contracting them. This allows the doctor to evaluate the health of the nerves and muscles. Both tests combined for the most acutely painful experience I have ever had. Having needles inserted into my muscles, then contracting them as hard as possible, and having my nerves shocked almost directly, is something that is impossible to prepare for. Perhaps the worst part of the tests was that each individual pathway had to be tested several times to ensure that they were functioning well. The anticipation of each subsequent electrical shock, made me tense up even more than the last, increasing the pain sensation further. Unlike the MRI’s, the nerve and muscle function test results were determined on the spot. I passed both tests, in fact my nerves and muscles were functioning quite well.
Passing those tests may have been the biggest relief I have ever had in my life. Of all the possibilities I had feared, and with all due respect to all other long-term diseases and conditions, degenerative motor neuron diseases sound like the worst to me. The thought of wasting away and losing my ability to move is almost too hard to imagine, and I had been obsessing about that for days. The hope of a diagnosis, fear of what it could be, and disappointment of not getting the answer, had taken me on an emotional roller coaster. It had only been three weeks, and I seemed to be at the hospital doing a new test most days of the week. The constant attention paid to diagnosing my condition made it feel like months had gone by. The uncertainty remained, but my greatest fears had been allayed by passing the neurological testing. I still wanted answers, but it didn’t feel as if I needed to worry as much for the time being. Instead, I needed to focus my energy on trying to rest and recover.
Because my problems had gotten so out of hand, I had to start scaling back many of the activities that aggravated my symptoms. Because almost everything aggravated my symptoms, including work, I had to start carefully prioritizing when and where I spent my time working. At the time of my injury, I was working as a Personal Trainer at Body Kinetics in Novato, as a self-employed Personal Trainer with clients in San Francisco and an assisted living facility in Novato, and as a Physical Therapy Aide at a clinic in Mill Valley. I quickly learned that my job at the clinic in Mill Valley was the most problematic and expendable of my three sources of income. I had been considering going back to school for Physical Therapy, and my experience at the clinic was meant to help me determine if a career as Physical Therapist was going to be the right path for me. Physical Therapy felt like an ideal career choice, after having so many great experiences as a patient, in PT clinics around the Bay Area. I have had numerous running and work-related injuries over the years, and the Physical Therapists and Athletic Trainers I worked with were always critical in helping me successfully return to form as quickly as possible. Few things are as satisfying as helping a client achieve a major health goal or get their independence back by being able to function better in their daily life. I wanted to be able to help others overcome medical conditions in ways that I cannot as a personal trainer, while utilizing the skills I have developed as a Personal Trainer to achieve even greater outcomes.
The role that I had as a PT Aide at the clinic in Mill Valley required a great deal of multi-tasking, and many movements and tasks that triggered my ataxia. I found myself unable to handle multiple tasks at the same time; bending down to pick up a light weight or object from the floor caused me to lose my balance and I began having difficulty with my mental focus and mental fatigue. My thought processes were not working properly, it seemed to take a very long time to make decisions, and my ability to recall and store information was impacted. Those problems compounded throughout a shift, leaving me practically useless after several hours. I could no longer physically or cognitively handle all of the stimuli that the clinic placed upon me. Several weeks after my injury, it became clear to me that I could not perform the duties required of my position, and that I had to sacrifice my time somewhere for my own health. I was out indefinitely from working at the clinic. At 38 years old, I had already been concerned about going back to graduate school in my forties, and starting a third career with a large student loan debt. Having to step back from my potential preparation for a four-year Physical Therapy program, felt like the death of that dream. How was I supposed to be able to take the time to recover from my mystery illness or injury, spend several years preparing for graduate school, then spend four more years in a Physical Therapy program on top of that? My injury was now becoming a threat to the growth of my career.
Until I started to improve physically and cognitively and had more energy, I had to focus on my personal training business and employment at Body Kinetics. If I kept deteriorating, I would have had to go on disability, which would have taken a horrible toll on my client base. Because most of my income was coming from my personal business, I wouldn’t have been able to recoup most of my income through disability. Each personal training session that I trained, felt like half a day’s work; and I needed to make sure that I wasn’t over-working myself. I was faced with a conundrum, take a complete break, with very little income; or grind on, hoping that I would not significantly hinder my recovery. I chose to keep working. I did everything that I could to keep training my clients and to maintain as much of my income as possible. I was in survival mode and was doing my best to get by each day. My hope was to maintain just enough, until I began to feel better; and to eventually figure out the cause of what I was going through. The problem with that mindset was that I put all of my energy into my personal training sessions, and was often left without the energy to properly focus on my recovery. I couldn’t even comprehend what was best for me in the long term. Instead, I typically went home between sessions and zoned out and napped for several hours. Although I was resting, I wasn’t progressing at all.
I didn’t know when or if this quagmire I was in was going to end. I realized I was going to have to alter my life to accommodate my condition. But because the situation was so confusing and complicated, I did not have any idea how to adjust properly. My condition was not steady, it affected me in different ways on different days. It was hard to identify any triggers, because I always felt terrible. How much was I supposed to work through the dysfunction? How much rest and recovery did I need? Should I have been going on disability in order to rest completely? What was even wrong with me? I began to lose hope that I would find a cure. Looking back on it, pushing through my injury was clearly not the best way to recover. I might have recovered much more quickly if I went on disability and took a complete break from physical activity. However, disability felt like giving up too soon. Had I given up then, I doubt that I would have been able to make a comeback at all. Had I thrown in the towel that early, I would not have learned so much about myself. It was through this period that I learned how to be a survivor, emotionally. It’s also how I learned to appreciate the good days when they occasionally returned. Though I learned a lot through this period, it would be a long time until I would be able to allow myself to benefit by getting myself into a better place emotionally. Eventually, I realized that being in a better state of mind would be critical in my recovery.