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Ray D’Alonzo, Ph.D., is Manager of Doctoral Recruiting & University
Relations and a former Associate Director of Research and Development at
Procter & Gamble Pharmaceuticals where he has worked for 30 years. He has
led research programs in bone metabolism, infectious disease, respiratory
disease, arthritis, and nutrition and has published scientific papers on a
wide variety of topics from the chemical composition of fats and oils to the
pharmacoeconomics of osteoporosis. Dr. D’Alonzo is the recipient of the
Chancellor’s Medal from the University of Massachusetts, Amherst, in part,
for his contributions to the development of new pharmaceutical agents. As
both a patient and scientist, he has made a personal effort to increase the
awareness of Chiari in the health care sector and to assist others afflicted
with the syndrome. He has published the story of his personal struggle with
Chiari in a book,
Contents Under Pressure, with 100% of royalties going towards Chiari
education, awareness, and research programs.
May 31, 2008 --
In the March
Ray’s corner, I indicated that I hoped to write about what constitutes valid
data in a future article. Well, I started writing an article that focused
on the qualities of data to determine if treatments work but stopped when I
realized how technical it was becoming. So, I would like to hear from my
readers if there is an interest and if there is, I will be happy to finish
it and publish in the next edition. You can email me at
dalonzo.rp@fuse.net.
In place of the
data article, I decided to write about determination and how important it is
when one is ill and seeking diagnosis and treatment as well as in
recovery. When I wrote my book, Contents under Pressure: One Man’s
Triumph over Chiari Syndrome, I used the word triumph because I truly
believe that recovering from Chiari is a great personal triumph and
sometimes not easily done. And, any significant triumph requires
determination of the highest order. For me, recovering from Chiari was more
difficult than graduating from college or finding a job. I couldn’t think
of anything more challenging that I had experienced personally. To me, even
though I never served in the military or participated in a war, I imagine
that beating Chiari is very much like facing a foreign enemy on the front
line of battle. To win on the battle field, it takes the desire to live and
a great deal of determination.
The topic of
determination and its importance came to my mind while I was running my
second ORRRC (Ohio River Road Runners’ Club) marathon just this past March
30th in Xenia, Ohio. Contents under Pressure basically
talks about my experience of going from marathon runner to wheel chair to
marathon runner. The book ends with me completing the 2005 Air Force
marathon following a long and difficult recovery from decompression.
Following the Air Force marathon I ran three more, my first ORRRC marathon
in Xenia, OH, one in Columbus, OH, and one in Athens, OH. While training
for my second Columbus marathon, I injured my right Achilles tendon from
overuse. The orthopedic surgeon characterized my injury as tendonosis as
opposed to tendonitis with tendonosis meaning the accumulation of permanent
micro scar tissue. The diagnosis was disheartening because I like to run
and because I had come so far after Chiari. I couldn’t believe that my heel
was taking me down after Chiari couldn’t. It seemed incredibly ironic.
I went to
physical therapy which consisted of transdermal electrophoretic cortisone
treatments, ultrasound treatments and lots of stretching. I maintained my
cardiopulmonary condition as best I could by using a stationary bike being
careful to flex my right ankle at a minimum. After a couple of months, I
began to do some light jogging. I slowly increased my jogging while
continuing to stretch and strengthen my right Achilles tendon. I slowed my
pace by about 1 minute per mile and worked on my stamina. After a couple of
months, I began to toy with the idea of running a marathon and devised a
training schedule to ready myself for the 2008 ORRRC marathon in Xenia.
Along the way, I caught the flu and then suffered from mid back spasms of
unknown origin. I had my back problem checked and I was cleared of any
disease (pleurisy, gall stones, etc.) or serious condition.
With all the
road blocks, I was uncertain of my ability to complete the race. I decided
to pace myself very carefully with the goal of finishing in 4 hours and 30
minutes. Conditions during the morning of the race were poor. It was about
39º F with a light drizzle and a steady strong wind. The first half of the
race required running directly into the head wind. I knew that what I
needed to finish was determination. After 10 miles of fighting the wind, I
began to draw on my past experiences requiring determination.
Determination is learned and remembering other instances of
determination is helpful in applying it again. Naturally, I thought about
my experience with Chiari and how difficult it was to run my first marathon
after decompression. I carried that thought with me through the wind and
even more so after mile 22 when my legs began to throb with each and every
step. I completed the race 7 minutes ahead of my goal and I pondered about
the true power of determination. Determination got me through the race with
grace. It got me through all the road blocks I faced in getting there. It
got me through finding a diagnosis, in finding treatment, and in recovering
from decompression.
I receive many
emails from other Chiari patients looking for help. I think a lot of these
individuals have determination in the first place or they wouldn’t have
found and contacted me. I attempt to advise them as best I can clearly
reminding them that I am not a physician and that they should always follow
the advice and treatment plan of their physician. I always stress the
importance of determination. Recovering from Chiari is very much like
running a marathon with all sorts of road blocks thrown in the way. The
patient must reach deep down into him/her self. Every time they turn around
there will be an opportunity to stop pushing the envelope. Patients need to
stay determined and resolve to find the right diagnosis and treatment and to
stay on the road of recovery. There is an element of conquering Chiari
that solely depends on self determination. It’s the patient
contribution to defeating Chiari. The doctors can not bring it to the
table. Research is not going to bring it to the table. It’s not easy but
all too often it makes the difference between a good recovery and existing
in an unproductive and disabled state.
Of course for
some, whose condition is truly overwhelming, determination may not be enough
but it’s an important step and one worth taking for without it there can be
no hope. For these unfortunate individuals no criticism should ever be
leveled as long as they continue to try. Always remember, one is only a
failure when he/she stops trying. Keep up the good fight or as our
founding fathers would say, “stay the course”.
-- Ray D'Alonzo
** If you
would like to share your comments, thoughts, or ideas with Ray,
please send them to dalonzo.rp@fuse.net.
Due to the volume and nature of email received, individual responses are not
possible. **
[Ed. Note: The opinions expressed above are solely those of the
author. They do not represent the opinions of the editor, publisher,
or this publication. Mr. D'Alonzo is not a medical doctor and does not
give medical advice. Anyone with a medical problem is strongly
encouraged to seek professional medical care.]
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