ALS: You Better Believe We Must Do More
By John M. Phillips
The Ice Bucket Challenge is all the rage (top 20). The “challenge” is simple: Once challenged, donate $100 or douse yourself with iced water, record it and pass the challenge on to others via social media. It all started with Pete Frates, a former baseball player at Boston College who has been living with ALS since 2012. He floated the idea and his former teammates, as well as other Boston-area athletes, who took him up on it. It was noticed and covered by local media and that attention, along with the social Web’s viral nature, launched it onto a much larger stage. The Law Offices of John M. Phillips were challenged by WJXT Jacksonville’s Nikki Kimbleton, and the Law Offices of John M. Phillips responded. See videos of both challenges below.
I was challenged by a dear friend, WJXT’s Nikki Kimbleton:
The campaign is clearly working. The ALS Association reports that it, and its 38 chapters, received $4 million in donations in just two weeks. Last year during that same time period, July 29-August 12, the association brought in $1.1 million. Great news for the 12,000 Americans who have the disease, which is devastating and ultimately fatal, and for their families and future generations.
Amyotrophic lateral sclerosis, or ALS, is a disease of the nerve cells in the brain and spinal cord that control voluntary muscle movement. It is also known as Lou Gehrig’s disease. Despite bearing his name, medical journals have questioned whether Gehrig’s demise -and that of some other athletes and soldiers that have long been thought to have ALS- might have been catalyzed by concussions and other brain trauma. Over the past few years, we have had over 15 victims in the NFL alone (including my friend Kevin Turner). Add in the 50,000 to 150,000 head injuries which occur per year to the children of America, and it is now time to have controlled panic.
This is very important because patients with significant histories of brain trauma can be considered for different types of treatment, perhaps leading toward new pathways for prevention or a cure. Meanwhile, ALS has no known cause and no known cure. This new “species” of ALS might have more options. Doctors at the Veterans Affairs Medical Center in Bedford, Massachusetts and the Boston University School of Medicine, the primary researchers of brain damage among deceased National Football League players, said that markings in the spinal cords of two players and one boxer who also received a diagnosis of ALS indicate that those men may not have had ALS at all. They had a different fatal disease, doctors said, caused by concussion-like trauma, that erodes the central nervous system in similar ways.
According to the ALS Association, up to 30,000 people in the United States currently have ALS, an incurably fatal disease among primarily 40- to 70- year-old men that results in the swift and steady atrophy of all voluntary muscle movements. The other statistic cites is that ALS affects 1 or 2:100,000 people. Symptoms can begin with “ticks” or breakdowns in the nervous system, such as shaking or immobilization of limbs and extends over the course of a few months or years to quadriplegia, paraplegia and death. Many people with ALS retain their full mental capacity, which at first is a blessing but later on becomes a real curse, as they are trapped in a shell of a body, communicating by computer generated speech guided by eye movement. The British astrophysicist, Stephen Hawking, is such an example. He has lived longer than most with a fully functioning, and some say genius brain, inside a body that has wasted away.
There is no known cure for ALS. The first drug treatment for the disease is a medicine called Riluzole. Riluzole may prolong life, but does not reverse or stop the disease from getting worse. The goal of treatment is to control symptoms. Baclofen or diazepam may be used to control spasticity that interferes with activities of daily living. Trihexyphenidyl or amitriptyline may be prescribed for people with problems swallowing their own saliva. Physical therapy, rehabilitation, use of braces or a wheelchair, or other orthopedic measures may be needed to maximize muscle function and general health. Choking is common. Patients may decide to have a tube placed into their stomach for feeding. This is called a gastrostomy. A nutritionist is very important to help prevent weight loss. The illness itself appears to increase the need for food and there is usually limited ability to swallow. The use of devices to assist in breathing includes machines that are only used at night as well as constant mechanical ventilation. Patients should discuss their wishes regarding artificial ventilation with their families and doctors. It can be horrible and is expensive.
Baseball legend, Lou Gehrig was its first prominent alleged victim, dying two years after his 1939 diagnosis. The Yankee’s legend had a well-documented history of significant concussions on the baseball field, and perhaps others sustained as a battering-ram football halfback in high school and at Columbia University. Given that, it’s possible that Gehrig’s renowned commitment to playing through injuries like concussions, which resulted in his legendary record streak of playing in 2,130 consecutive games over 14 years, could have led to his condition.
In about 10% of cases, ALS is caused by a genetic defect. In other cases, the cause is unknown. Nerve cells (neurons) waste away or die and can no longer send messages to muscles. This eventually leads to muscle weakening, twitching, and an inability to move the arms, legs, and body. The condition slowly gets worse. When the muscles in the chest area stop working, it becomes hard or impossible to breathe on one’s own.
ALS versus CTE
Researchers have found pathological evidence that repetitive head trauma -such as that experienced by football players- may result in a motor neuron disease similar to Amyotrophic Lateral Sclerosis (ALS), or “Lou Gehrig’s disease.” It is often identified with CTE – Chronic Traumatic Encephalopathy, a degenerative brain damage. CTE actually progresses undetected for years, silently eating away at brain cells, until it causes dementia and other cognitive problems.
A unique pattern of protein deposits has been found during autopsy studies of brains from 12 professional athletes who had played contact sports. Researchers have discovered CTE in the brains of more than 50 deceased former athletes, including more than a dozen NFL and college players, pro wrestler Chris Benoit and NHL player Reggie Fleming.
Known Victims – Sports
The media has published an estimate that 14 former NFL players since 1960 have been given diagnoses of ALS, a total about eight times higher than what would be expected among men in the United States of similar ages. However, we found that list and it is rather crudely generated. The truth is we have little idea how many have been affected. Worse still, how many guys played in high school and college only to vanquish mysteriously?
The known victims thus far are: Eric Scroggins (Linebacker at USC who played 3 games for the 49ers in 1982), O.J. Brigance (Linebacker out of Rice who played 11 years in CFL and NFL from 1996-2002)(featured on ESPN’s Outside the Lines, a must-watch story), Glenn Montgomery (Defensive Tackle out of Houston who played 7 years in NFL), Pete Duranko (Notre Dame Defensive End who played 7 seasons in AFL and NFL), Peter Demmerle (WR at Notre Dame who was drafted but did not play in NFL), Steve Smith (Penn State Fullback who played from 1987-1995 in NFL), Tony Proudfoot (Defensive Back from 1971-1982 in CFL), Bob Waters (former 49ers Quarterback, one of 3 members of the same team to get ALS, along with Matt Hazeltine and Gary Lewis), Matt Hazeltine (15 year Linebacker out of California), Gary Lewis (running back and 7 year NFL’er), Orlando Thomas (6 year NFLer from 1995-2001, who played Safety), Wally Hilgenberg (Iowa Linebacker, who played 16 seasons in NFL), and now, Kevin Turner (Fullback out of the University of Alabama, who played 7 years in the NFL). This list could go on for pages.
A few foundations have been formed and most of the athletes are working or worked to help the understanding and fund raising for ALS before their untimely demise, including the Glenn Montgomery Foundation and the Brigance Brigade.
The cognitive effects of brain trauma affect hundreds of former professionals and perhaps thousands of boys and girls across many youth sports, the NCAA and professional leagues. High school athletes reported having 50,000 to150,000 concussions per year across our country. Younger brains are more vulnerable to injury and unlike in the NFL, there’s often no one on the sidelines trained to diagnose brain injuries. These individuals often release liability, don’t experience manifestations or symptoms until their 30’s, and have little or no “insurance” to address this problem. What have we done?
Not only is brain trauma in sports can be a risk factor for this ALS-like CTE, but is causing early onset recurrent headaches, dementia, depression and other mental and physical problems For example, a 2005 paper found that Italian professional soccer players had developed ALS (now known as CTE) at rates about six times higher than normal. Studies have also linked service in the United States military to higher risk for ALS, possibly because of battlefield collisions and blast injuries.
Recently, the NFL indicated it is “considering providing aid” to help care for former players who are now suffering from Lou Gehrig’s disease. It is reported that Steve Smith received a lump sum form the NFL. They must step up now. The NFLPA must, as well.
After spending years doing considerably less about head injuries, concussions and sub-concussive blows, there has been more effort recently including requiring an independent neurologist to decide whether a player can go back to a practice or to a game. Head injuries were, and in some ways still are, treated no differently than a high-ankle sprain in some instances. Little lifetime protection and care is offered.
More than 150 former athletes, including 40 retired NFL players, have joined the Center for the Study of Traumatic Encephalopathy’s brain donation registry. Studies will continue.
Meanwhile, advances in technology must be implemented. A new helmet supposedly is aimed to prevent concussions. The company claims 15,000 helmets sold in 2009. 12 of those went to a high school in Alabama, according to a story in the Anniston Star. One of the wears indicated it, “makes his head feel like a football compressed under a school bus tire,” but the school also reports no concussions. At $350 per helmet, it is an expensive proposition at that level. However, there is no reason why the NCAA, Conferences and NFL aren’t chipping in to make sure the best measures are taken.
Victims of this plague have not even begun to be known. We all like that hard hits, but remember what brought the most tears during Emmitt Smith’s Hall of Fame speech? It was when he thanked Moose, his full back, his battering ram, that brought the most tears. It is the job of the fullback to sacrifice his body to open up holes and take the punishment on almost every play. At what cost we must now ask?
This challenge may be silly, but it raises much needed awareness. Do it, donate. You are hereby challenged.
Here’s to you, Kevin Turner. We love you.