When Gene Pino was diagnosed with terminal Amyotrophic Lateral Sclerosis five years ago, he was devastated.
Pino experienced grief and denial as his family began to assist him. Eventually, his son moved back home, and his wife retired early from Albuquerque Public Schools to help ease the process.
Pino said he deals with anxiety and stress each day.
He is not alone.
“The prevalence of ALS in the U.S. is about 3.9 per 100,000 people; New Mexico's prevalence is about 5.2 per 100,000 people,” said ALS Association New Mexico Executive Director Joe Cordova, based on the 2014 population and current ALS statistics.
Dr. Eugene Lesser, neuromuscular physician for UNM's Department of Neurology, has worked with ALS patients for 25 years and currently runs two monthly, comprehensive ALS clinics, where 60 to 70 people are enrolled.
ALS, also called Lou Gehrig’s disease, is an acquired degenerative disease of important brain and spinal cord cells, which work in tandem to enable us to contract our muscles, Lesser said.
“Any muscle of the body, including those in the limbs, mouth, tongue and face can be affected,” he said. “Patients eventually die of respiratory failure when the breathing muscles become too weak to support adequate ventilation.”
On Sunday, Pino and others gathered at Isotopes Park, for the annual Walk to Defeat ALS, which aims to raise money for ALS research.
With wheelchair accessible routes, fundraising could be completed as a team, an individual walker or a virtual walker.
The fundraiser raised over $152,000 and donations are still being collected online, according to the ALS website.
Pino, a 1977 UNM graduate, said his team raised over $15,000 and received first place.
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“Our community has stepped up every year to raise more money for ALS research,” he said.
Due to physical health, this will be Pino’s last year participating in the walk, according to his team page on the ALS Association website.
With over 1,200 walkers in attendance, Cordova considers the walk a success and said funds will assist research and programs for New Mexican ALS patients and their families through patient service programs, such as Loan Closet, support groups and the UNMH ALS Clinic.
“The walk is really important to, and entertaining for, our families that participate in it,” Cordova said. “It’s a day that is centered around them, our families and supporters, yet also a day they can take a step back from their disease and just have fun.”
Lesser said families caring for a loved one affected by ALS undergo emotional, physical and financial tolls.
“Scientists are actively researching the cause of ALS in hopes that some type of intervention will be identified that will stop the disease from progressing, or which will even reverse the symptoms of the disease,” Lesser said.
After being diagnosed, ALS patients often stop working within one or two years, which decreases individual and familial income, he said. Daily self-care, such as bathing, dressing or brushing one’s teeth, becomes difficult.
As muscles weaken, ALS patients may require wheelchairs and auxiliary devices, choke on food or beverages, face an increased likelihood of pneumonia, use a feeding tube, use a BPAP breathing machines and mask, require antidepressant medication and possibly develop dementia, Lesser said.
“The emotional toll on spouses, children and other family members is also high, due to their witnessing the deterioration of a loved one, and due to their needing to take time off from work and other life activities in order to take care of the affected family member,” he said.
Pino said he appreciates the breakthroughs made by the Ice Bucket Challenge and the comfortable spaces provided by the technology at the Steve Gleason House in Louisiana.
“Nurses at UNMH have been fantastic. I still attend and tailgate at UNM home football and basketball games,” he said. “I retired in July, working on my bucket list and traveling, enjoying time with family and friends.”
The community can support ALS patients and research by visiting alsanm.org or alsa.org.
Elizabeth Sanchez is a news reporter for the Daily Lobo. She can be reached at news@dailylobo.com or on Twitter @Beth_A_Sanchez.
