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.