Natalie Palm Sappington and her siblings hoped it would never happen. But when Natalie started "tripping" and falling, deep in their hearts they knew.
"She said it was arthritis," said her husband, David Sappington, of Frederick.
Her siblings knew that wasn't it. Natalie knew it, too.
She was diagnosed with ALS -- a disease the Palm siblings know as a diagnosis with a death sentence. She would be the next family member to succumb to the hideous disease that took their father, mother, a maternal aunt and uncle, and a brother.
Sixty-five-year-old Natalie, the eldest of the siblings, died in October.
"She was very outgoing. She loved her Steelers," David said. "She liked to cook and sew, she loved her grandkids. She was a very devoted wife." He had known Natalie most of his life.
ALS, or amyotrophic lateral sclerosis, is better known as Lou Gehrig's disease, named for the baseball legend who was diagnosed with ALS in 1939. It's a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. Some patients become paralyzed in the later stages as the brain's ability to initiate and control muscle movement is lost. The muscles atrophy. The progressive degeneration leads to death.
Early symptoms often include increasing muscle weakness, especially involving the arms and legs, speech, swallowing or breathing. There is no a cure or treatment that halts or reverses ALS, but there is a drug that can slow its progression.
"There are lots of trials for new drugs," said Dr. Jeffrey Rothstein of the Robert Packard Center for ALS Research at Johns Hopkins in Baltimore. "Neurological diseases are all but impossible to halt or reverse because the brain doesn't regenerate itself."
Natalie had bulbar ALS, with symptom onset typically including the facial muscles, speech and swallowing, said her sister, Debi Peeks, of Mount Pleasant. In Natalie's case, it involved her upper respiratory system. She had a persistent cough and her voice became hoarse, said Peeks. By June the effects of muscle atrophy were evident in her upper body.
Natalie also experienced panic attacks, said Peeks. "I think it was because she was very afraid (it was ALS)."
A cruel disease
Their father, Charles "Dirty" Palm Sr., was diagnosed with ALS in 1980. He died about a year later. Five years later, a maternal aunt died of ALS. Then their beloved mother, Addie "Boots" Palm, was diagnosed. She lived with the disease five years. Three months after she died, her brother died of ALS. Three years ago, one of the Palm siblings, Terry, died of ALS.
With the family history of ALS, the siblings insisted Natalie go to the Packard Center, where many of the family members, including their children, are involved in a case study of the familial form of the disease. Familial ALS accounts for up to 10 percent of all cases. Up to 95 percent are sporadic, meaning they have no family history of the disease.
"The Palm family is very unusual," said Rothstein. From their mother, the siblings inherited the gene; with their father, it was sporadic ALS. The combination increases their risk and possibly the risk of their children of developing ALS, too. "If one of the offspring of Addie never develops the disease, their children won't develop the disease. You don't really know who has the risk.
"ALS is more common than people think," said Rothstein. "Out of every 800 men who die, one will die of ALS." Because the life expectancy of people with ALS is two to five years, there's not a large population living with the disease as there are with other diseases, such as muscular dystrophy, he said.
Eventually, patients become dependent on caregivers and are fearful of being alone. "Terry told me why it was -- he didn't want to die by himself. Not that he had a fear of death. Death was not a scary thing to him. It was how it was going to happen," said Jennifer Palm, Terry's widow.
The last note Addie wrote before she died said she was "tired. I love you. I want to die," said Peeks.
In the hours before Natalie died at home, surrounded by her family and unable to speak, she pointed to each then circled her heart with her hand to indicate "I love you."
"It's been difficult losing Natalie," said sister Kim Ambush of Frederick. "She had the big family gatherings and picnics ..." her voice trailed off.
ALS awareness is a family mission
The Palm siblings have become staunch supporters of the ALS Association, hosting and organizing walks and fundraisers.
Last October, they participated in the first Walk to Defeat ALS in Frederick. Natalie "walked" the three-mile course in a wheelchair with her siblings. She died at home 11 days later.
"When does it stop?" asked Peeks. "The scariest part for me is not knowing if it's going to be one of the children."
Last fall, they had a booth at In The Street for ALS. "We were surprised at the number of people who didn't know about ALS," said Kim.
The family also does an annual fundraiser selling delicate sculpted wood flowers and hand-made silk carnations around Mother's Day weekend at the Walmart on Md. 85 where Natalie worked. All of the proceeds go to ALS and last year they raised $3,500. Their mother, Addie, taught them how to make the carnations with paper.
On June 27, the third annual all-you-can-eat crab feast to benefit ALS will be held at the Cracked Claw in Urbana. Advance tickets are $40 for ages 11 and over, $24 for ages 4 to 11; and $50 and $25, respectively, at the door.
The annual Walk to Defeat ALS fundraiser will be held Oct. 31 in Baker Park. The Palm siblings' team is called Terry's B52s.
ALS doesn't get the publicity some other diseases do, said Kim. "We just want to keep it out there."
Quick Facts About ALS
ALS is a progressive, neuromuscular disease ultimately leading to total paralysis, including the inability to speak, swallow or breathe.
- Life expectancy after diagnosis averages two to five years without mechanical ventilation. About 20 percent live five years or more.
- Every day, 15 people are diagnosed with ALS. It is estimated that as many as 30,000 Americans may have the disease at any given time.
- ALS can strike anyone.
- The cause is unknown.
- There is no cure.
- May is ALS Awareness Month. Source: ALS Association; www.alsa.org