Block House captain’s life with Lou Gehrig’s disease goes on

Published 4:35 pm Friday, April 16, 2010

Exactly a year ago, Tom Mosca was given just three days to live.
The ravages of ALS had taken him to the very brink of death.
No one expected Mosca, the man so closely associated with the Block House Steeplechase, to be alive to see the 64th Annual Running of the steeplechase this year. But he is.
It was sadly ironic, Tom was taken to Hospice House care on the very same day
The trip in the EMS van to Hospice House itself was a disaster. Oxygen systems in the EMS transport van malfunctioned and by the time Tom arrived at Hospice, he was in bad shape and his family was getting ready to say goodbye.
Doctors who ordered his transfer to hospice care told his family and friends they expected him to live only 72 more hours.
But, Tom brought himself back to life.
Fast forward, one year later. Tom is back at home with his family, wife, Lorraine, and son, Tommy Junior.
“I really dont want to bring attention to myself,” says Tom today.
But his story is so remarkable; it might ignite a spark of hope in others whose lives and families have imploded due to ALS.
Tom, modest as ever, says he “just stumbled upon” Indocin, the medicine that appears to have given him relief from the debilitating symptoms of ALS.
“It definitely has stopped the progression,” says Lorraine Mosca, “he is able to move his hands and fingers more. He is able to breathe.”
“Tom was doing some research on the computer,” she goes on to say, “and we have some friends who are doctors and Tom just picked their brains and he became involved with an ALS support group in Charlotte. He learned about and started taking Indocin, a drug thats been around forever and is a tried and true anti-inflammatory.”
“Tom is an extraordinarily smart, strong man,” says Hugh Youngers, Toms Hospice volunteer patient companion, “Tom has a background in computer software and he just did the research and made his own decisions and took steps to help himself.”
The result is that Tom Mosca has become his own guinea pig. “What did we have to lose?” asks Lorraine. “No doctors would be willing to prescribe this. They need years and years of studies and published papers and approval and so on. It was frustrating, we didnt have years and years to wait.”
Lorraine believes the medicine has given Tom extra time with his family. “We were really saddened to learn that another ALS patient, a man diagnosed at the same time as Tom, who was younger, only 35 with two small children, has since passed away. So, we feel very blessed.”
Tom has also availed himself of the latest in technology. He has a laser device, a NavStar visor he wears that allows him to work on the computer with a minimum of help from others. The visor allows Tom to merely point his head and visor at computer icons and then activate them. “I joke that hes faster with his laser visor than I am with my fingers,” says Youngers. That ability has served Tom well and contributed to his ability to regain some of the highly productive life he led before ALS felled him.
Roughly four years ago, Mosca, the man who was primarily responsible for making the Block House Steeplechase one of the best known in the Southeast, found himself with a puzzling back pain that he tried to ignore for a while. When he finally got around to seeking medical help after an acupuncturist advised him that “something is really wrong here and you need to check it out,” he learned he had Amyotrophic Lateral Sclerosis, commonly known as Lou Gehrigs Disease, an incurable illness that eats away at the bodys neuromuscular system, while the patients mind remains sharp and aware.
For almost thirty years, Tom Mosca was the man most closely associated with the Block House Steeplechase. He promoted, managed, and ran some part of the Steeplechase for almost thirty years, serving as Director for 12 of those years. He was involved with every aspect of the Steeplechase, from arranging the parking spots to determining the entrants. He also worked with the Steeplechase in Charlotte, helping its founders set that race up.
Tom served as Chairman of the Steeplechase here until his illness forced him to retire, but not before he helped his successors learn every aspect of his former duties.
His wife of more than 30 years, Lorraine, retired early from her job as a teacher to take care of him.
At first the couple traveled, visiting friends and family all over the country and in Europe. But as Toms disease progressed, he was forced to stay home, eventually being confined to a hospital bed as his ability to move deteriorated. From that bed, Tom created an operations center where he monitored TV news shows and operated his computer. And, thats where he initiated the research on Indocin, the drug that has helped to halt the symptoms that were destroying his body.
A note on Indocin; its an anti-inflammatory that has been in existence for many decades. According to WebMD, Indocin is used to treat osteoarthritis, painful gout, and a variety of other arthritis-like diseases.
Using Indocin for treating the symptoms of ALS is off-label. That means it is not approved for ALS- symptom treatment, nor are there documented studies to support its use for those purposes.
But that doesnt matter to the Moscas, who are only too happy to have Tom back home, eager to capture every moment.The Tryon Daily Bulletin came out with the story of Toms life and his contributions to The Block House Steeplechase and the Tryon Riding and Hunt Club.

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