Four years after she lost her husband to ALS (also known as Lou Gehrig’s Disease), Emporian Keena Reeves is taking her story public.
Saturday is ALS Awareness Day in Emporia and also the annual Walk to Defeat ALS, which is the ALS Association’s signature event. The walk will begin at 8:30 a.m. in Jones Park in Emporia. ALS is short for amyotropic lateral sclerosis, which is a progressive, fatal neuromuscular disease that takes away the person’s ability to walk, speak, swallow and breathe. Life expectancy is two to five years after diagnosis. There is no known cure.
Reeves met her husband, Bob, in March 1978. They hit it off and married in July of that year. This year would be their 30th wedding anniversary, Reeves said. Bob Reeves, who spent 32 years at Didde Graphics, was diagnosed with ALS in July of 2001. He died in November of 2004. Before he was diagnosed, his arms and legs were weakening and he was losing his ability to grip things, Keena Reeves said. He was referred to a neurologist in Topeka, who diagnosed him with probable ALS. He received his official diagnosis at the University of Kansas Hospital.
Over time, Bob Reeves’ disease progressed. He had what is called “limb onset” and he had very low pulmonary function, Keena Reeves said.
“His breathing was impaired,” Reeves said, adding that her husband was atypical in the fact that he did not lose the ability to swallow, talk and eat.
When Reeves needed help with her husband’s care, their three children, Amanda, who is now 25, Bradley, who is now 31, and Tony, who is now 41, were there to help out. Keena Reeves said her husband was an avid duplicate bridge player, having played since college, and was the director of the local duplicate bridge club in Emporia. Reeves said the members of the bridge club rallied around the family.
“The only activity that he continued participating in until the last few weeks of his life was Tuesday night bridge,” Reeves said. “When he could no longer comfortably hold his cards, our daughter Amanda spent every Tuesday night going with him to bridge, holding his cards, and bringing him home. She called it ‘Tuesdays with Daddy.’”
Reeves also hired a CNA to come in for two to four hours a day. Hospice came in later as well.
“The end for him was very quick,” Reeves said. “He chose not to do anything to prolong the situation.”
During his care, Reeves was given morphine to help with the discomfort, but he chose not to be unconscious.
“He was conscious of everything,” Keena Reeves said. “He said he wanted to be able to communicate. He and I talked until about 3:30 in the morning the day he passed. He guided his own journey.”
Reeves said she decided to take her story public this year for the opportunity and healing.
“When you lose someone to ALS you are still part of the ALS family,” she said. “Your life is changed in a way you can’t ignore it.”
Activities Saturday at Jones Park will include the raffle of a quilt, table toppers and table runner. Tickets will be on sale at the walk at $1 a ticket or $5 for six tickets.
Proceeds from the walk and other events go to the Keith Worthington Chapter of the ALS Association. The association provides services to ALS patients including in-home consultation, care and research opportunities, mobility and communication equipment, support groups, educational materials and advocacy and public-policy programs.
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