As I mentioned in the "About Me"
section, I contracted West Nile Virus almost a year ago, in October 2006.
To say that the illness has had a major effect on my life would be to make a
tremendous understatement. The next couple of posts tell the story of what happened when
I got the disease, and the days and weeks that followed.
On Wednesday, October 4, 2006, I stayed home
with what I thought was the flu. Around noon the following day, I noticed that
I was having difficulty walking. I scheduled an appointment with my doctor for
it the following day. On Friday morning, I was shocked to find that I had lost
the use of my left arm.
The physician's assistant whom I saw at my
primary care physician's office decided I had not had a stroke, since not all
muscles on one side of my body were affected. I took blood tests for various
viral diseases, including the West Nile virus.
But, of course, this was Friday, and the test results would not be ready until
the following week.
I stayed in bed most of
Saturday, October 7, with no change to the inability to use my left arm or the
difficulty I was having walking. Late Saturday evening, in trying to move from
the bed to a chair, I fell. At that time, I weighed about 380 pounds, so
we called 911 and asked the fire department paramedics to put me back in bed
(it took six of them). Early in the morning of October 8, I fell again. This
time, the paramedics transported me to Mercy Gilbert Hospital.
After being stabilized in the
emergency room, I was moved to the intensive care unit. By this time, I was
pretty terrified since I did not know what was wrong with me. The nursing staff
took very good care of me, and the doctors performed various diagnostic
techniques, including more blood tests. The results of those tests were
available Tuesday, when I was told I had the West Nile virus. You probably don't know much
about West Nile; I certainly didn't before
October 2006. There are links at the end of this post with authoritative
information from the Mayo Clinic and the Centers for Disease Control about the West Nile virus. Here's the short version:
the virus is spread by mosquitoes, after they've come in contact with sick
birds. Only about one in every hundred people who get the virus develops
serious symptoms which lead to an understanding they have it. Approximately 250 people had the virus in Arizona in 2006; eight died. I've met two
other survivors, both men, and each was affected differently than
I. One was on a ventilator for five weeks (which he doesn't remember),
and nearly died twice. He made a great recovery, regaining use of his arms and legs
after months of rehabilitation. The other's arms were fine, but his legs were
affected.
My first question after I was diagnosed was,
"What do we do now?" The answer was rehabilitation
therapy. It took 10 days for my Incredibly Understanding Wife to work out
the arrangements with the insurance company, but after 10 days in the intensive
care unit at Mercy Gilbert, I was transferred to the John J. Rhodes
Rehabilitation Institute, a part of the Banner Mesa Medical Center.
I was very lucky to get into the Rhodes Center . It follows an intensive rehabilitation
methodology, with three hours of physical, occupational, speech or cognitive
rehabilitation per day, including some work on the weekends. I thought the first two weeks of that
schedule would kill me, even though I was still spending 18 hours a day in bed. Eventually, I regained my strength, and began
to make significant progress. It seemed
as though I might actually returned home after about month of rehabilitation, but
then I had a setback.
At the beginning of November, I could no
longer do things with my right arm that I had been able to do since the illness
struck. I could not hold a phone to my
ear; I could not feed myself, I could not brush my own hair or adjust my
eyeglasses. The doctors told me I could
not go home, and would need further rehabilitation work. I began to panic, and wondered where I would
end up living the rest of my life. Visions of dark, foul nursing homes haunted me. Thankfully, Rhodes
anticipates these kinds of psychological issues. I had established relationships with a social
worker and a psychologist, who were very helpful in helping me keep my
perspective and understand my options.
Just after
Thanksgiving, I was transferred to Rehab Without Walls, a comprehensive day rehabilitation
facility in north-central Phoenix. As part of their evaluative process, I spent
two weeks at Rehab Without Walls' residential facility, a home in north Phoenix. After convincing the therapists that I could
live at home, with significant assistance from my wife in the mornings,
evenings, and overnight, I was allowed to return home on December 9, 2006.
The bus from Rehab Without
Walls picked me up every morning, and took me for six hours of therapy
sessions
each weekday. This involved more
physical, occupational, some speech, and a tremendous amount of
cognitive therapy. The physical and occupational therapists worked
to make my legs and right arm stronger, and used range of motion,
massage, and electrical therapy (all unsuccessful)
to try
to coax some movement out of my left arm. The only thing that works for
my left arm is water therapy - in the pool. I can move the arm.
The cognitive and speech therapists worked to make sure that I had not lost any
mental or verbal acuity. Thankfully, they
concluded that I had not. Gradually, the
cognitive and speech therapy sessions were reduced to once a week, then once every two
weeks, and we concentrated on physical and occupational therapy. I was the first patient my insurance company
had sent to Rehab Without Walls, and once it became clear that I was receiving
only physical and occupational therapy, the insurance company stopped paying for this comprehensive service.
I was able to
return to work beginning the last week in December 2006, using the telephone
and computer to work from home and from the Rehab Without Walls facility.
In April, I began
returning to the office one or two days per week. Beginning in May, I returned to the office
five days per week. I use a power chair
supplied by the insurance company, and I take the City of Phoenix Rapid bus from a park-and-ride location near my home to the State
Capitol, with a minimum number of stops in downtown Phoenix. My employer has been a tremendous support to me, and has allowed me to
hire a young man who is an administrative assistant as well as a licensed Certified
Nursing Assistant, who assists with my personal care during the day. Having someone of my rank within my
department testing the degree to which our facilities are appropriately
adjusted for those who are disabled has been an eye-opener. Door openers have been fixed, and doors have
been widened to accommodate my fairly wide wheelchair. Again, I could not have asked for more support
from an employer than I have received from mine. Since I also supervise a program which
provides services to the disabled, it has been doubly beneficial to me to learn
about how to live with a disability.
Overall, I consider
myself very fortunate. I have a wife who
still loves me, even though I'm more difficult to deal with these days both
physically and emotionally, due to the stresses of this illness. I have a tremendous group of relatives and
friends, who have done nothing but offer me continued support and encouragement. Those who work with me have cheered
me on, and continue to urge me to do more and better.
I think the reason
why I have been able to approach this misfortune in a positive way is first of
all because I am lucky enough to have been "wired" as a positive
person. For me, it isn't a question of
whether the glass is half-full or half-empty... in my mind, the glass is always
overflowing. As well, I have had a very
fortunate life experience, portions of which I hope to share with you in future posts to
this web log. I must remind myself every
day that it would be unreasonable of me to become spiteful or react bitterly
to this unfortunate event in the face of everything good that has happened to
me in the previous 55 years.
So, on we go...
facing and overcoming challenges, and making improvements as we go. Thanks for sharing the journey.
Mayo Clinic West Nile Page
Centers for Disease Control West Nile Page
Maricopa County, Arizona West Nile Page
Recently,
Ed the puppy came to live with Incredibly Understanding Wife and me. Ed is 10 months old, and is a Maltese-shih tzu
mix. He is as cute as can be, and seems
to understand intuitively that he is in charge of life as we know it. 
Recent Comments