Angels for those with ALS

It takes extraordinary people to care for those afflicted with ALS, also known as Lou Gehrig’s disease. That’s why Hospice of Spokane has named Pat and Cathey Priddy its Volunteers of the Year.

Dave McDougall, volunteer manager for Hospice of Spokane said of the couple, “They provide support beyond what most volunteers are comfortable with – they’ve made such a positive impact. How do you take something so profound and put words to it?”

Amyotrophic lateral sclerosis affects nerve cells in the brain and spinal cord, attacking voluntary muscle movement. Often the hands or feet are affected first, but the weakening paralysis spreads, eventually compromising speech and breathing. Approximately, 5,600 people in the United States are diagnosed with ALS each year. Most are diagnosed between the ages of 40 and 70.

It’s a fatal disease without cause, cure or prevention, and it exacts an agonizing toll on its victims and their loved ones. While the muscle weakness and paralysis are unrelenting in its progress, the disease doesn’t affect cognitive abilities. Therefore, ALS patients remain alert and aware of what’s happening to their bodies, though they eventually lose the ability to communicate.

McDougall said what makes the Priddys so special is that “they understand the disease on an emotional level.” That understanding comes from firsthand knowledge. In 2002, Pat’s sister, Cheran, was diagnosed with ALS. When the Priddys make volunteer visits, they offer the empathy of those who have intimate knowledge of the toll ALS takes. Recently, they visited the home of Fred and Caryl Marker. Caryl has ALS, and the Priddys are her Hospice of Spokane volunteers.

As Pat spoke of his sister and her illness, the room grew quiet. “It’s a bad disease,” he said. “Nobody should have to go through it by themselves.” He paused to pull a red handkerchief from his pocket. After wiping his eyes, he continued, “My sister had longtime friends abandon her – they couldn’t stand to see her like that.”

Though his sister died in 2005, his grief is fresh. However, he and Cathey have channeled their grief into helping others. In 2008, they, along with several others, formed ALSSO (ALS Service Organization). And 18 months ago, the couple took hospice training together. “They taught us how to deal with death and dying in a compassionate way,” said Cathey. “And hospice has been wonderful to let us work solely with the ALS community.” She said Hospice of Spokane has also embraced their fledging nonprofit.

In addition to a monthly support group, ALSSO offers practical help like building ramps, and installing lifts and bidets. And each month the group gets together to prepare meals for ALS patients and their families.

Fred Marker said he doesn’t know what they would do without the lift that Pat installed in his garage. It’s made getting Caryl into the car much easier. He appreciates the monthly meal as well. “It helps me because I’m pretty much chief cook and bottle washer now,” he said.

His wife smiled at him from across the room. “He’s doing a good job,” she said.

Caryl, 74, fell while playing tennis and found she couldn’t get back up. Then she fell in a sand trap at the golf course and again while shopping. She went to several doctors before she received the devastating diagnosis. “We both broke down in the doctor’s office,” said Fred.

As the disease travels its unrelenting course, Caryl said, “The symptoms change every week.” She’s lost the use of her legs, and her hands are getting progressively weaker. Even her voice is affected.

Caryl expressed gratitude for Cathey’s presence in her life. “She rubs my feet, polishes my nails and brings me soup,” she said. And when Cathey brings the soup, she makes sure it’s carefully pureed. Swallowing has become difficult for Caryl.

ALS can eat away at a patient’s dignity. When the couples got ready to pose for a photo, Caryl said, “Would you put my knees together? It doesn’t look very ladylike.”

Cathey draped a hand-stitched, personalized lap blanket over Caryl’s uncooperative legs. ALSSO members make the blankets for ALS patients. Reflecting on the ruthless progress of the disease, Caryl said, “I think this is as bad as it will get and then something else happens.” She misses simple pleasures like cooking for her children and grandchildren.

McDougall said the bleak prognosis of ALS patients can make finding suitable hospice volunteers difficult, which is why he so appreciates the Priddys and why the organization chose to honor them. “They step in and provide support without being fearful.”

When asked why they spend so many hours working with Hospice of Spokane and ALSSO, tears fall from both Pat and Cathey’s eyes. “Somebody’s got to do it,” said Pat.

Glancing at Caryl, Cathey said, “You get to hang out with people like this. The grace and the courage of how people deal with this disease – we get to witness this all the time.”