On
August 8, 2009, I published my first blog post. In it, I came out of the closet
and announced to ‘the world’, or at least to the fifteen initial readers, that
I am willing to talk about Kennedy’s Disease (SBMA). I admitted I was a ‘rare
bird’ and there are thousands of others in this world that are members of this
family—many who are undiagnosed or misdiagnosed. When I wrote the article, I
never considered thousands of people would visit my blog. It was meant to be a
vehicle for me to be more open about this condition I live with every day.
My
wife tells me that if something needs a one or two sentence answer, I can find
a way to write an entire story on it. She’s right. I have always had the gift
of gab. She calls it a curse.
When
the blog hit a thousand page views and had dozens of comments, my head was
swimming. The first hundred thousand page views seemed to take forever, but
when it happened, I was flying high. Nothing could be better.
Seventy-six
months and 725 articles later, another major milestone was achieved—one million page views. Never in my
wildest dreams did I ever consider it a possibility.
According
to Google Analytics, the blog averages 15-17,000 page views every month from
readers around the world. And, I continue to receive 2-3 comments or emails
every day–many of which require an answer.
To
all who have supported my efforts to make Kennedy’s Disease something to talk
about, I thank you. You have blessed
my life in many ways. Thank you also for forgiving my spelling and grammar
errors. By reading my posts, you told me the message meant more than the mistakes.
Below
is an excerpt from the original post. If you want to read the entire post,
follow the link.
“I
have Kennedy’s Disease. There, I said it! Whew ... That wasn't so hard.
Kennedy's
Disease is an X-linked, adult onset, progressive muscle disorder. I often refer
to it as the poor man’s version of ALS. Kennedy’s Disease does not show up
until later in life and it gradually erodes your strength by killing off the
muscles and motor neurons in your body. Doctors classify it as rare disorder
and estimate that 1-in-40,000 men have it. There is no treatment or cure for
the disease. Living with the disease reminds me of the paradigm, “Is it more
difficult to face life being blind from birth or to lose your sight later in
life?” I realize that neither are good options, but is one worse than the
other? Is it more difficult to lose something that you had or never to have
experienced it in the first place? Realistically, what does it matter? You are
still blind ... or, in my case, physically handicapped.
Several
people have asked why Kennedy’s Disease is called a “disease” when it is
actually a defect in our DNA. When I looked up the word “disease” in the
dictionary, it provided a clearer understanding. A disease is “an impairment of
health or a condition of abnormal functioning.” Well, that explanation does fit
pretty well. Kennedy’s Disease is a condition of abnormal functioning of the
androgen receptors that fire the motor neurons. I still like the scientific
name of Spinal Bulbar Muscular Atrophy. Now that is descriptive and it does not
sound like something contagious. Does my being bothered by the word “disease”
just show an increased level of frustration? Why should it matter what it is
called? All I know is that I am still a “man,” but I no longer feel manly. I feel
emasculated because something was stolen from me that I prize. …”
