Losing brother to Lou Gehrig's disease inspires annual run
Wendy Ehlen could hear the raspy tone in her brother’s voice.
They thought he might have allergies. But then he developed muscle spasms in his biceps and soon the avid golfer could no longer hit a golf ball. A doctor asked him to stick out his tongue and it quivered at the back of his throat.
“The doctor said I think I know what you have and it’s not good,” Ehlen said, recalling when she learned her brother had been diagnosed with amyotrophic lateral sclerosis or ALS.
The progressive neurodegenerative disease, also known as Lou Gehrig’s disease, causes paralysis, but patients can still hear, see, smell and feel. The cause is unknown and no cure exists.
Ehlen hopes to change that. She is organizing the fourth annual 5K and 10K Run for a Cure on behalf of the ALS Association Greater Sacramento Chapter on Saturday, Jan. 7, along the scenic path of Miner’s Ravine in Roseville.
“Wendy’s passion in her lifetime is she wants to see somebody cured,” said her dad Norman DeGeest. “That’s an incredible goal.”
Proceeds benefit the global ALS research program and go toward providing support for people with the disease living in 24 northern California counties served by the local chapter.
These services include support group meetings, medical device loans, bereavement and grief resources, and educational materials.
Amy Sugimoto, executive director of the local chapter, says when a person is diagnosed with ALS, he is not provided with much information. So patients turn to her organization for guidance on “how to live a quality life for the remainder of their life,” Sugimoto said.
Her organization serves about 250 patients a year.
They run a satellite clinic to provide multi-disciplinary care in partnership with the Forbes Norris ALS Research Center. They rent a facility and bring in clinicians of various specialties so a patient gets everything addressed at one appointment — important, as mobility is difficult for an ALS patient.
The organization also loans medical equipment to patients, such as shower chairs, respiratory devices, transport chairs and wheelchairs that typically cost about $30,000.
“That’s huge for the patient because durable medical equipment is very expensive, even if you have insurance,” Sugimoto said.
Every 90 minutes, someone in the United States is diagnosed with Lou Gehrig’s disease. There are 30,000 people currently living with ALS in this country.
The fast-moving disease generally kills in two to four years, by destroying every muscle in the body, ending with the lungs and heart. As the motor neurons degenerate or die, the muscles weaken and atrophy, resulting in partial paralysis. The cause is unknown but believed to be a combination of genetics and the environment. In the United States, nearly 95 percent of cases are sporadic, meaning the cause is unclear.
Ehlen, who lives in Roseville, remembers her brother, Mike, as a “big, strapping guy.” He played sports and lived in North Carolina with his wife and children.
Mike was diagnosed in 2000 and soon lost his voice. Then he lost the ability to move his arms and legs. Healthy, Mike weighed 225 pounds. Near death, his weight dropped to 70 pounds.
“I’d pray he’d die in his sleep and be out of his pain,” Ehlen said. “That’s how horrible it was.”
He died of cardiac arrest at 42 years old in 2004.
The disease strikes people of all ages and ethnicities, but research has shown that people who have served in the military are twice as likely to have ALS as someone who has not. Veterans Affairs has declared ALS a military service-related disease.
Mike was a U.S. Marine who served in Lebanon in the early 1980s.
Several advancements in ALS research have occurred recently, but a cure is currently non-existent. The goal for caretakers is to prepare the patient to be comfortable.
“You want to take care of the patient, but you know what the outcome is going to be,” Ehlen said. “Doing the race is keeping hope alive.”
She organized the first race at the encouragement of her son, a long-distance runner. Her husband and daughter had volunteered for the ALS Association Greater Sacramento Chapter, but she resisted.
“You’re solely immersed in this disease when you’re going through it. It’s hard to go back into it,” Ehlen said. “When my brother passed away I was so mad.”
She realized she could stay mad — or do something productive. Last year, 750 runners participated in the run, which raised $18,000. She makes the run a positive event to show that “someone is still out there fighting for you,” she said.
Sena Christian can be reached at firstname.lastname@example.org. Follow her on Twitter at SenaC_RsvPT.
ALS Association presents Run for a Cure
When: Registration opens at 7 a.m., Kids Fun Run starts at 8:30 a.m. and 5 and 10K timed runs start at 9 a.m. Saturday, Jan. 7
Where: Miner’s Ravine path, start at Sculpture Park. Parking lot at 336 North Sunrise Blvd. in Roseville
Cost: Pre-registration is $30, race day is $35 and Kid’s Fun Run’s free
Info: Register at www.alssac.org