Initial symptoms and diagnosis

My apologies for the long post!  Just setting the stage of what occurred (since it's the question I always get).

In February of 2014 I turned 60.  I had worked for Kaiser Permanente in Portland for over 20 years and was in the wonderful situation to be able to retire.  Financially I knew it would be somewhat of a challenge but I figured that I could work part time and pretty easily make ends meet.  So we took the plunge and I retired the following month. 

In January 2015 I started to have some strange symptoms – the first was that when I’d wake up in the morning and stretch I started getting cramps in my left calf.  Although this had happened occasionally in the past, this was occurring most mornings. 

Within a few weeks, when I’d stretch in the morning I started getting some clonus in my left foot.  Here’s an example of clonus on YouTube that can occur after a stroke Clonus Example (this is not me but it’s similar in how it appears). 

Although I knew I had not had a stroke, as a physician I knew that this was NOT normal.  However I didn’t yet understand what was going on. 

The manifestation of this was that when I walked, I was slow and cumbersome.  Susannah would ask me why I was walking so slow and I would respond – ”my left leg doesn’t seem to be working very well!”  Interestingly although I had trouble walking, my running was unaffected at the time.  

Like most physicians, I tried to ignore my symptoms ;-)

By early February I developed two additional symptoms – the first was that I started to get hyperreflexia in my left leg and arm (hyperreflexia is very brisk and intense reflexes).  Clonus and hyperreflexia are what’s called “upper motor neuron” symptoms (Upper Motor Neuron Symptom).  This can be caused by a number of things – perhaps the most common would be a spinal cord lesion or mass.  This obviously crossed my mind. 

However about this time I also started developing fasciculations – i.e.; muscle twitches.  Now most people get occasional muscle twitches (at least I had been having occasional muscle twitches for as long as I could remember).  However instead of “occasional” fasciculations, I started getting them in waves.  Here’s a video I made at the time of my left arm, hand and leg (the heavy breathing is because I’d just completed a 5 mile run). 

Fasciculations are what are called “lower motor neuron” symptoms (Lower Motor Neuron Symptom).  This means that the nerves traveling from the spinal cord to the muscles for some reason are not working.

With a little bit of medical detective work, I quickly figured out that ALS was a possible diagnosis (as a pediatrician I had never seen ALS because kids don’t get it).  It’s worth noting that ALS is one of many possible diagnoses – at this point I knew enough that I needed to get a complete workup.  So in mid-February I went to see my Primary Care Physician, who I’ll call Dr. C at the Kaiser Permanente.  Dr. C is a good friend of mine and an awesome family medicine doc.  She ordered some labs, scheduled an MRI and made a referral to Neurology.  As she was leaving the exam room I asked if she thought ALS was a possibility – she stopped in her tracks and just looked at me.  Then left the room without saying a word. 

To make a long story short – after 2 MRIs (MRI), an EMG (EMG) and multiple blood tests (I didn’t know I had that much blood to spare ;-) – on February 20, 2015 I was given the diagnosis of “presumed ALS” (I now fit the complete criteria for ALS so it’s no longer “presumed”).

Even though I “knew” the diagnosis before I got the “official” diagnosis – it’s was a complete shock to my system!  I was supposed to fly to the bay area that day to see my father.  I had to cancel my trip - which meant calling my sister and brother to tell them what was going on.  It was not an easy conversation as I had not even started to process my condition as yet. 

Over the next week my wife and I were on a complete emotional roller coast – even though I could see myself going through the “Stages of Grief” (Kubler-Ross Stages of Grief) – it didn’t change what I was going through.  The shock to my system was beyond anything I had ever experienced.  Every time I took a step with my left foot, I was reminded of my disease and death/disaster was foremost in my mind.

Then I had what I call a minor miracle.  I went to see Lusijah Marx for some counseling at the Quest Center for Integrative Health in Portland (Quest Center). 

Lusijah is a good friend of mine who had started Quest in the 1980’s counseling men with HIV/AIDS, using visualization as an approach to dealing with their disease.  I had been on the Quest Board of Directors for almost a decade until I stepped down upon my retirement from Kaiser Permanente in the spring of 2014.

Given what I was going through I went to see Lusijah as a patient.  Lusijah worked with me for about 1-1/2 hours.  She did a process with me called Eye Movement Desensitization and Reprocessing (EMDR).  Apparently EMDR is used for people with Post Traumatic Stress Disorder (wiki PTSD entry), although I had never been exposed to the technique before.  Using EMDR she had me close my eyes and visualize a wonderful, peaceful place – my “place” was a beach in Hawaii.  Then she would have me open my eyes and track her fingers as she swung them back and forth.  Then she would repeat the process.  This went on for awhile, with Lusijah asking me each time to visualize the place and to bring a sense of love to the place.  Eventually my “place” became a sense of love with Susannah and our son Lionel. 

After about 45 minutes she then asked me to remember the first time I noticed a symptom of my ALS and to bring that to my “place” and sense of love.  She then again had me open my eyes and follow her fingers.  Then to close my eyes and remember the next time I noticed a symptom.  We repeated this process until I had northing left.  To be honest I was exhausted by then but felt pretty peaceful. 

On walking out of the building I was again shuffling along having trouble walking.  Immediately I was reminded of my ALS but instead of feeling a sense of doom, I felt only love for my family!  I cannot adequately describe what a shift this was for me.  I had gone from a perpetual sense of dread to a persistent sense of love and contentment.  In hindsight, this was the first significant step in shifting my acceptance of, and peace with my diagnosis.