Many caregivers of people with ALS feel caught in a desperate contradiction. Although they're kept busy with the physical care of their loved ones, they realize there's very little they actually can do against the disease. Slowly and inexorably, despite their best efforts, ALS marches on.
Louise Palumbo of Charleston,W. Va., felt that desperation strongly when her husband, Mario, received an ALS diagnosis in 1993. Mario, then attorney general of West Virginia, was running for governor when his speech started slurring. After the usual run of misdiagnoses, the Palumbos were given a label, a dismal prognosis and little else.
"Many of us [caregivers] have had to become advocates and do research on our own," Louise says. "This is a tough disease to be hopeful about. We need to know that there is something going on, something is happening — whether it ends up in a cure or not — we need to know that there is an effort out there."
Although Mario is immobilized and unable to communicate, Louise hasn't given up her hope for a cure. It's not an easy hope to sustain. To keep it alive for herself and other families coping with ALS, she started a weekly prayer chain to pray for a cure and to pray for ALS patients.
A powerful ally
Louise got the idea for a prayer chain after reading about research being done on the healing effects of remote prayer (healing that occurs as a result of being prayed for by others). She felt that prayer — in conjunction with meditation, visualization and conventional medicine — had been a powerful ally in her successful battle against stomach cancer three years ago.
So in a small e-mail posting on an ALS Internet message board several months ago, she suggested that people pray each month for a cure.
Response to that single e-mail was small, but like a seed on fertile ground, it steadily grew. First, 10 people in the United States contacted her about joining the chain. Then her minister made the ALS prayer part of his regular Wednesday prayer service, prompting her to switch from once-a-month to once-a-week prayer.
Then an international group, the Self-Realization Fellowship Worldwide Prayer Circle, heard about her idea and added the ALS concern to its weekly prayer circle, which encompasses people in 19 countries.
A source of hope
Louise is encouraged by the scope of research into ALS, and she sees prayer as another effort in the fight against the disease — "something that is happening that gives hope."
She admits that at times her hope is small, but it never disappears. The prayer chain "gives me a sense that I am doing something for my husband and something for myself," she says, quoting a philosophy she heard at the MDA/ALS Center at Carolinas Medical Center in Charlotte, N.C.: "I believe in people living with ALS, not dying with ALS."
Louise wants the prayer chain to continue to grow.
"I hope when people read this article, they will join us in prayer every Wednesday, praying for a cure and for people with ALS," she says.