|
A Brief History
In
August of 1996 Jen and I were in Mendocino,
CA celebrating our anniversary. We both got massages, and after I got
mine, I noticed some of the muscles in my back were twitching. I first
reported the twitching during a routine physical in January of 1997. My
general practitioner referred me to a Neurologist who I saw in May.
Because there was no muscle weakness at the time, he could only diagnose
me with “benign fasciculation” (twitching for no apparent reason).
In May of 1998 I noticed that my left hand
was getting weak. After a couple months of procrastination, I returned
to the Neurologist who told me he was fairly certain I had ALS. There
are no tests to confirm ALS. All they can do are a few procedures to
rule out other causes for the symptoms. They did a couple of nerve
function tests, an MRI of my brain, and they scanned for heavy metals.
When we came back to hear the results of the tests, the Doctor confirmed
the diagnosis, and sent us to an MDA ALS clinic in San Francisco for a
second opinion. They agreed.
I don’t think any of the doctors actually
told me the life expectancy, but I knew from internet research, it was 3
to 5 years from diagnosis. What most publications don’t tell you is
that these statistics only apply to people who choose not to accept life
support measures. I chose life over death.
After I noticed my left hand getting weak,
it then progressed to my left arm, right leg, right arm and hand, and
somewhere in there it became difficult to breathe. I used a Bi-Pap
machine (non-invasive ventilation) fulltime for about two years before
having to get a tracheotomy and ventilator in December of 2004.
The Bi-Pap and the vent are powered
directly
from my wheelchair batteries. The
time from diagnosis to going on a ventilator was about 5 1/2 years.
Most people with ALS do not choose to go on a ventilator or even
fulltime non-invasive ventilation.
Before I went into the hospital for the
tracheotomy, I had lost all movement in my body below the neck except a
little movement in my right shoulder. I used my right arm to push the
computer mouse around. After spending three weeks on my back in the
hospital, I lost the remaining muscle in my shoulder. Now I do digital
painting and other computer tasks with my head. It is actually faster
and more accurate than using my arm.
At this point, my breathing muscles are
completely gone. My mouth and throat muscles are too weak to prevent
food from falling down my trachea and into my lungs. These are the
reasons for getting the tracheotomy (and a feeding tube that goes
directly into my stomach). The tracheotomy is a hole cut into my
trachea below the vocal chords. They then insert a tube that makes a 90
degree turn and goes a couple of inches down toward my lungs. The
ventilator is attached to the outside end of the tube and it blows air
into my lungs. The problem is, without something to stop it, the air
would take the path of least resistance and go up my trachea and out my
nose and mouth instead of into my lungs. To address this issue, there
is a balloon around the tube in the throat that when inflated, seals off
the trachea. Because the seal is below the vocal chords, there is no
way to move air across the chords. This is why I can no longer speak.
For more stories about life on a vent, go to
Wayne Phillips' page.
I am very lucky. Because my progression has
been so slow, I have had time to get used to each change before the next
one hits me. This together with the fact that my wife and I share a
fulfilling, loving relationship, have allowed me to continue enjoying
life under circumstances that others find unbearable.
ALS has improved my life in many ways. I
used to be a work-aholic. I was so focused on my job and it’s
responsibilities, that I didn’t recognize the value of my relationships
with family and friends, or pause long enough to understand the beauty
and diversity of the human experience. I had also unknowingly stifled
my emotions in order to cope with the heavy load I had piled on my own
shoulders. Now that I have been slowly forced to relinquish my self
imposed stress, I have learned to really feel empathy for others, and be
more present in my own life. I appreciate life and feel so much more
alive.
Another wonderful gift has been the extra
time I have. This has allowed me to pursue my creative side through
digital painting, and explore any subject that interests me at the
moment, using special audio books for the blind and disabled.
My life is truly more rich and full now than
during any previous time. This experience has taught me the secrets of
enjoying life, regardless of your circumstances. I doubt if I would
have ever had my eyes opened to this knowledge if it weren’t for ALS. I
have lost the use of my body, but in return, my mind and spirit have
been set free.
The past and
future are but mental constructs. We can only really “experience” the
present moment. Your mind must be here and now to fully participate in
life.
Mike
|
