10/3/97
I appreciate very much your response to my posting on the mail list. Your
concerns and thoughts are certainly appreciated. Please allow me to tell you
more about Janet's PD case and what we did during the past four years. First
of all we live in the country of Panama, in the Panama Canal Area. I work
for the Panama Canal Commission and Janny was a high school
English/literature teacher for the Department of Defense School System. She
was diagnosed with PD in May of 1993 and we immediately traveled to the CA
Parkinson's Research Center in San Jose for a second opinion. Things went
quite well until October of 1994 when it seemed that the medication had very
little effect. Janny started experiencing severe pain and rigidity which was
almost unbearable at times. We traveled to Miami and spent 10 weeks there
with the NPF. Basically after 10 weeks which included three weeks in Jackson
Memorial Hospital under the care of Dr. William Weiner, two drug holidays, a
trip to Long Island, Cornell University Medical Center to see, Dr. David
Eidelberg for a PET scan with radio active isotopes to determine that there
was no blockage of the brain for the medication, we were told, sorry, there
is nothing else that we can do so go home and deal with it. During this time
frame in Miami we joined a great support group and learned about Pallidotomy
and Dr. Robert Iacono at Loma Linda University Medical Center. So we
returned to Panama and three week later were back in Miami for an
appointment with Dr. Bernard Grand to get a referred to Loma Linda with Dr.
Iacono. By this time we had talked by phone to five people that had received
a pallidotomy at Lome Linda and there experiences were so fantastic and
refreshing. We soon saw the pallidotomy performed live for 20/20 and by this
time we had a appointment with Dr. Iacono for evaluation in April. Janny was
admitted to a local hospital for one week in February for observation and
medication adjustment. In March I took Janny to stay with her parents in TX
while awaiting the appointment. I wanted to get her back to the states
during this time. When Dr. Iacono saw how severe Janny's condition was, how
young she was and the short time she had been diagnosed he asked her if she
would participate in a study that Loma Linda was about to conduct and that
the surgery could be scheduled for July 1995. We spent two weeks with the
Loma Linda staff and with Dr. Steven Barlow from the University of Indiana
that was conducting the study. The surgery was very successful and we felt
that Dr. Iacono truly saved Janny's life. The pain and rigidity was gone,
gone forever and never returned. We felt so grateful and thankful for what
had happened. The next year was so wonderful but the Parkinson's just kept
progressing and other complications became very noticeable, balance, speech
difficulties, chewing of food and loss of hand writing. My beloved Janny
passed in her sleep on the morning on June 25th, at our home in Panama. We
were to retire this December and move back to the states, something that we
had planned for many years. I now will retire on October 31 and make the
move. Because of this dreadful disease called Parkinson's and what it has
done to Janny, myself and out families I feel a need and commitment to do
everything in my power to fight this disease before it destroys others. I
plan to associate myself with some group that is committed to this fight.
This past February Janny and I organized the, "Janet Johnston Panama Fights
Parkinson's Bike Ride." This was the most rewarding experience that I have
had and it was very successful. We raised well over $5,000.00 that went to
the Dr. Robert Iacono Research Team at Loma Linda. I would love to organize
something like this in the states someday. We feel that we did everything in
our power to fight this disease and now I must continue this fight for
Janny. Because of her condition and the surgery I felt a definite need for
an autopsy. I made immediate contact with Dr. Iacono and he consulted with
the pathologist in Panama. Specimens were forwarded to Loma Linda for
research purposes. And now this brings me to the original question,
Parkinson's Sudden Death Syndrome. I have now received the autopsy report,
with photos, slides and more specimens to forward to Loma Linda. I have
discussed the report in detail with the Pathologist and there was no
irregularity with anything. The cause of death was attributed to sudden
death syndrome based on two reports and studies done by the Third Department
of Internal Medicine, Hiroshima University School of Medicine, Japan and
Department of Neurology, Juntendo University School of Medicine, Tokyo,
Japan. This report discusses, Prolong Qtc intervals in Parkinson's
disease-relation to sudden death and autonomic dysfunction. I am now in the
process of getting a copy of a electrocardiogram that Janny had at Tampa
General Hospital in July 1996 in hopes that it might now reveal something of
importance for Parkinson's research.
I realize that this is a long message and I thank you for your time in
reading it and if you have more comments for me please do not hesitate to
write to me. Janny was also a published childrens writer and writing was
her true love and she was dedicated to writing untill the very end. In a few
days I intend to post a couple of her poems in hope that someone will enjoy
them. She had also written a full length manuscript entitled, "Pallidotomy -
A Miracle For The Cynicle." I am also in the process of trying to market
her work.
Once again thanks for your time, thoughts and please continue to remember
me during this most difficult time in my life.
Sincerely,
H. Wallace Teal
