What is ALS?
- Amyotrophic lateral sclerosis is a progressive degeneration of the motor neurons that causes nerve cells in the brain and spinal cord to stop working, taking away the ability to talk, eat or move.
- While some patients have seen their ALS curb or stop progress, the disease usually leads to death.
- It most commonly strikes people between the ages of 40 and 70.
- As many as 30,000 Americans have it at any given time.
- French neurologist Jean-Martin Charcot found the disease in 1869, but it wasn’t until 1939 that Lou Gehrig brought national and international attention to ALS. ALS is still commonly referred to as Lou Gehrig’s Disease after it ended the career of one of the most beloved baseball players of all time.
- The Ice Bucket Challenge raises awareness to ALS and hopes to collect funds for research and patient care.
- It calls on people to donate $100 or dump a bucket of ice water on their head and donate $10 within 24 hours before nominating someone else.
- Challenges have bene uploaded and shared on social media networks, where nominations are announced.
- Go to alsa.org for more information and to donate
Jeff Broxton celebrated his 56th birthday this week, but he couldn’t even get out of bed on his own. His voice is slowly slipping away, and he cannot scratch an itch if he has one.
The Covington resident was diagnosed with Amyotrophic lateral sclerosis (ALS), also called “Lou Gehrig’s Disease,” a rare progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord and has taken the Internet by storm in the past few weeks by prompting people across the country to dump buckets of ice water on their heads and donate money to raise awareness.
“ALS is so cruel because it takes away your ability to function on your own, but your mind is completely aware and you are just stuck in a body that can’t move at all,” said Broxton’s daughter, Jennifer Lawrence. No, not the “Hunger Games” heroine.
But she may be a hero in her own way to her family, all of whom help each other to take care of her father.
“ALS is not only devastating to the person who has it but also for family members,” Lawrence said. “I have watched my mom totally put herself aside and devote her every minute to taking care of the man who once was the one taking care of her. My mama is so physically and emotionally drained, as are me and my brother. My brother spends his nights with daddy so mama can rest and doesn’t get much sleep as he still tries to keep up with the duties around the house and yard that daddy once did, and I spend my days there running any errands mama needs me to do.”
Lawrence recently left her job as a hair stylist to devote her time to caring for her father.
“Some days, I stand by my daddy’s bed and just fight tears as I watch him stare out the window, probably wondering what the warmth of the sun feels like again or how the rain feels as it falls on your skin.”
Outpouring of support
ALS affects each person differently. Jeff Broxton is one of about 30,000 Americans who have the disease at any given time. According to the ALS Association (ALSA), the disease causes motor neurons to die, stealing the brain’s ability to initiate and control muscle movement. Patients in later stages of the disease may become totally paralyzed. The progressive degeneration of motor neurons can eventually lead to death.
The life expectancy for an ALS patient averages about two to five years from the time of diagnosis, but that time varies depending on the progression of the disease in each body.
Broxton was diagnosed two years ago. Lawrence said he was progressing slowly at first but has recently begun to see the disease take him over at a quicker rate.
There is no known cure for ALS. One treatment, riluzole, approved by the FDA in 1995, is an antiglutamate drug that has been scientifically shown to prolong the life of ALS patients, but only by a few months.
ALSA is a national non-profit that leads global research on the disease and provides assistance for people with ALS. Its most recent fundraising campaign, the Ice Bucket Challenge, called for anyone nominated to either donate $100 or dump a bucket of ice water on his or her head and donate $10 within 24 hours. Challenges have been uploaded to social media networks across the country at an escalating rate, and many celebrities have taken on the challenge. From Bill Gates building a tower with a rope to pull that unleashes a waterfall of ice water to Charlie Sheen pouring a bucket of $10,000 in cash, people have put their personal marks on the challenge, changing the game up and donating both more and less than the original $100 or $10.
As of Saturday, Aug. 23, ALSA has received $62.5 million in donations, compared to $2.4 million during the same time period last year (July 29-Aug. 23), according to the non-profit. Donations have come from existing donors and 1.2 million new donors.
Bart Buff, assistant principal at Eastside High School, and Jeff Cher, Eastside’s principal, challenged their students to raise $100 by lunch on Aug. 19. As a reward, they promised they would both dump ice water on their heads.
“They actually raised $200,” Cher said. “Since they doubled the goal, we elected to take the ice buckets at the end of both lunch sessions so all students could watch without disrupting class time.”
They, in turn, nominated members of the Newton County Board of Education (BOE) and other principals. The challenge took the BOE’s monthly meeting by icy storm when Shannon Buff, director of secondary curriculum, Sandra Owens, Alcovy High School principal, and Craig Lockhart, deputy superintendent of schools, took the plunge, suits and all. Samantha Fuhrey, Newton County School System superintendent, Shakila Henderson-Baker, BOE member and chair, and Adolph Brown, keynote speaker at Saturday’s Education Summit, remembered to take their shoes off for their dunk.
John Ellenberg, principal at Newton High School, said his students raised $310.
Covington Police Chief Stacey Cotton and Assistant Police Chief Almond Turner lived up to the challenge on Aug. 22, dumping before donating $650 from the “Police Who Care” fund.
"A very expensive disease to have"
And the money donated is not going to waste. Jennifer Lawrence said her family spent about $30,000 just to make their house wheelchair-accessible.
“Thousands more on different beds and chairs and an accessible van,” Lawrence said. “ALSA let us borrow a chair, but we couldn’t have it customized because we have hospice nurses coming in and helping, and insurance won’t cover the chair upgrade since the nurses come in.”
Robyn Lyons, owner of Images Hair Salon in Newton County, had to get an $18,000 customized wheelchair for her mother, Saundra Potts, who succumbed to ALS 10 years ago at age 58, and ALSA reimbursed her for what their insurance company did not cover. Lyons said her mother was diagnosed and passed away within nine months.
It started with a fall. When she was diagnosed, Saundra Potts had a 76 percent breathing capacity. Three months after her diagnosis, that capacity dropped to 46 percent.
“She started losing her voice. She couldn’t swallow on her own,” Lyons said. “She never lost her voice totally, but she could only whisper. She couldn’t walk, she couldn’t eat. Only her brain and her bladder were not affected.”
Lyons also lost her aunt, the oldest sibling in her mother’s seven-children family, to ALS two years ago. She was 77. While 90-95 percent of cases are sporadic, affecting anyone at any time, familial ALS can be passed down. Lyons said if she is diagnosed with the disease, there is a 50 percent chance one or both of her children will inherit the gene mutation and develop the disease.
“There’s no kind of feeling of hope. It’s hopeless. There is no hope. There’s no feeling that you’re going to be able to fight it because you know what the end is going to be,” Lyons said.
Her husband lost his brother to ALS at age 43.
Both Lyons and Lawrence said the outpouring of support from the Ice Bucket Challenge means the world to them.
“This is such a heartbreaking disease, and not many people knew much about it until this Ice Bucket Challenge came along,” Lawrence said. “I thank God so much for it and all the awareness it has raised and all the funding.”
“It’s a very expensive disease to have,” Lyons said. “For nine months, my world stopped turning. Anyone saying anything negative about it, I’ll be quick to say it will make a difference, even if it’s just to find a treatment.”