[Congressional Record (Bound Edition), Volume 149 (2003), Part 14]
[Extensions of Remarks]
[Page 19576]
[From the U.S. Government Publishing Office, www.gpo.gov]




                         TRIBUTE TO JOE MARTIN

                                 ______
                                 

                        HON. JOHN M. SPRATT, JR.

                           of south carolina

                    in the house of representatives

                        Wednesday, July 23, 2003

  Mr. SPRATT. 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.''