Mr. Speaker, I would like to enter in the Congressional Record a story from The Charlotte Observer about Joe Martin, a friend since college days, who was diagnosed nine years ago with ALS, amyotrophic lateral sclerosis. Today, Joe says,…
Mr. Speaker, I would like to enter in the Congressional Record a story from The Charlotte Observer about Joe Martin, a friend since college days, who was diagnosed nine years ago with ALS, amyotrophic lateral sclerosis. Today, Joe says, ``I do not have ALS. I had it.'' Joe wants to change the ``doomsday'' mentality about ALS, and show that people can survive, as he has for the last nine years. Joe, in fact, has not only survived but has published two books, an autobiography and a novel, and is at work on a third.
Many members will remember Rep. Jim Martin, who left Congress to serve as Governor of North Carolina. Joe is Jim Martin's brother. As you will see from the article, Joe Martin and his wife, Joan, are establishing a web page which may be of interest to Members with constituents who have ALS.
[From The Charlotte Observer, July 23, 2003]
Joe Martin Tackles His Next Cause
(By David Perlmutt)
He can't talk, he can't walk, he can't move a single body
part except for a finger, eyes and a few facial muscles, but
Joe Martin is on yet another crusade.
Nine years after he was diagnosed with ALS, amyotrophic
lateral sclerosis, the former bank executive and now novelist
wants to change the thinking about the disease that paralyzed
him and, according to that doomsday thinking, should have
killed him.
These days, he discusses his illness in the past tense.
Martin, 63, is living proof, he says, that people can live--
and don't have to die--with ALS.
``For any practical purpose, I do not have ALS. I had it,''
Martin responded by e-mail. ``* * * My survival is just a
fact, almost a foregone conclusion.''
Soon, he and wife Joan plan to post a new Web site that
takes ``positive'' messages to ALS patients--despite doctors
telling them they will die within two to five years.
``Joe wants people to get information that is positive,
instead of the sad news,'' Joan Martin said. ``It will talk
about living, never about dying. Joe tells people diagnosed
with ALS, `If you have a doctor who talks about dying, get
another doctor.' ''
Martin also plans to go after investment money for
technology he says makes survival an option--for example, the
ventilator, a little larger than a laptop computer, that
helps him breathe and a feeding tube that prevents him from
choking on food. Both have given him renewed hope that he
will live to be an old man.
``I knew all along we needed to change the way the world
sees ALS, but to what?'' he wrote. ``If the world concluded
that only someone with my money and connections could
survive, people with ALS would be more depressed than ever.''
Martin, a force in the past for better race relations, is
the brother of former N.C. Gov. Jim Martin and a retired bank
executive. The ALS Association, he says, argues that many
patients don't have his means and therefore ``we will give
them only palliative care, easing them toward death, then use
them to raise money.
``My passion is to save people from that deathtrap.''
Jerry Dawson, executive director of the Carolinas ALS
Association, said the group's primary mission is: ``To help
people live with ALS and to leave no stone unturned in the
search for a cure.''
It is fighting ALS through research and lobbying Congress
for research money, he said.
Martin was diagnosed in October 1994. The disease kills
nerves controlling arms, legs and muscles used to breathe,
swallow and talk. It has the highest mortality rate among
degenerative neurological disorders.
In 1941, ALS killed baseball legend Lou Gehrig, whose name
is tied to the disease. Patients generally die of respiratory
failure.
Martin believes ALS can do nothing else to him, since the
ventilator helps him breathe.
``He can't fall. He can't choke. He won't starve. And with
a ventilator, he can't stop breathing,'' Joan Martin said.
``. . . His eyes are never affected by ALS. So nothing else
can go wrong with him.''
Martin sees three barriers to survival:
Using Lou Gehrig as an icon of death: ``In the name of a
true American idol, `advocates' use false claims with
impunity . . .,'' he wrote in a recent letter to U.S. Rep.
Mike Bilirakis, R-Fla., who chairs a House health
subcommittee. ``How many people refuse treatment, accepting
that fate?'' The ALS Association's ``commitment to death
as the only remedy'': ``My crusade is to put the ALS
Association on a different track or put them out of
business. They or somebody else can raise more money by
telling the truth, without sacrificing lives.'' Dawson
said the association ``regards its work with people with
ALS . . . to be its most vital mission.''
Technology: ``Technology makes survival possible but not
attractive. Our Web site will encourage such things as
ventilators . . . and headbands that transform brain waves
into words.'' The average life expectancy after diagnosis, he
said, predates new therapies and ``assistive equipment.''
Though silenced, Martin has become a loud advocate for ALS
patients getting the treatment and equipment they need to
prolong life. In 1998, he, his brother and friends raised
more than $3 million to build the Carolinas Neuromuscular/ALS
Center at Carolinas Medical Center.
Dr. Jeffrey Rosenfeld, the center's director and CMC's
chief of neurology, agrees that if Martin's body doesn't
create a new problem--such as an infection--ALS can do little
more to him.
The center, Rosenfeld said, has adopted a philosophy of
aggressively treating symptoms before they become
debilitating . . Martin, he added, bought into that.
``I agree with Joe that if you're aggressive with the
management of the disease, you can most definitely change the
course of the disease,'' he said. ``. . . Joe has opted for
the benefits of every aggressive intervention available.''
Those interventions are available to everyone treated at
the Charlotte center, which pays the cost if the patient
can't. Rosenfeld said: ``At the center, the patients and
needs come first. The financial obligations come second.''
Martin is helped by a rare determination and his support
system at home, Rosenfeld said.
He's shown he can live with ALS. A year ago, he and Joan
traveled overseas, and in December to New York, where they
saw plays. He has written two books, one about living with
the illness, the other a novel. He's writing a second novel;
a computer allows him to type e-mails or faxes by focusing
his eyes on letters.
``What Joe wants to show . . . you can go to the movies,
you can see your grandchildren,'' his wife said. ``You can
live with ALS.''
In the past, Martin has crusaded for causes such as better
schools and race relations. He introduced ``Race Day,''
challenging Charlotteans to invite a person of a different
race to lunch and to live tolerantly.
Martin knows there is still much to be done, but for now he
is focusing on ALS.
Far from declaring victory, he became discouraged and upset
last week by the ALS death of friend Glenn Mason of
Charlotte.
``Glenn faced ALS with courage and thigh-slapping humor. He
was important to changing attitudes about ALS and his death
reminds us we have a long way to go.
``. . . I will accept victory when we make survival a
viable and generally available option.''