Making a Difference in Your Community : Polio Survivor Group Seeking More Help

The suffering caused by polio is largely thought of in the past tense, but polio survivors bear painful testament to the present-day misery wrought by the disease.

Bound to wheelchairs and sometimes too weak to propel them, or dependent on leg braces and regularly in pain, polio survivors range in age from their late 30s to 70s.

“Most of these people are going through what’s called post-polio syndrome,” said Lee Seitz, herself a polio survivor who helped found the Reseda-based Polio Survivors Foundation. “That is a deterioration of the muscles that makes you unable to walk under your own steam; you’re in extreme pain; many develop breathing problems.”

Seitz, 68, contracted polio, which affects the spinal cord and causes paralysis of various muscle groups that sometimes atrophy and lead to permanent deformities, when she was 20. Her case is atypical because most people become afflicted with it as babies or young children.

The disease was largely brought under control about 1955 with the advent of a vaccine.

Frustrated by the lack of resources for people in her condition, Seitz joined with four other polio survivors in 1978 to found the nonprofit Polio Survivors Foundation.

“Our basic thing is to raise money through public donations to provide medical equipment and financial aid to any survivor of polio who needs our help,” said Seitz, who serves as president of the volunteer group. The group comprises mostly polio survivors and serves individuals throughout Los Angeles, Ventura and Orange counties.

Seitz says the foundation serves hundreds of polio survivors each year, providing motorized wheelchairs, leg braces, lift chairs (seats that mechanically lift people to a standing position) and breathing equipment.

“I just had a call from a man in Texas who needs leg braces,” Seitz said recently. “We can’t help him. We’re confined to this area. I just bought a bed for a woman who had to sleep in a wheelchair for a month and a half.”

Much of the equipment provided by the Polio Survivors Foundation is donated by the spouses or families of survivors who have died, Seitz said.

“A lot of people aren’t old enough to be on Medicare and if they do have any insurance it doesn’t always cover a lot of these things,” Seitz said.

Funding comes from donations made by service clubs and individuals. The group receives no government money.

Seitz says there is a large number of survivors in Southern California.

“A lot of them migrated to this area because they have no tolerance to the cold,” she said.

The foundation also has a support group that meets once a month.

“This is a frustrating, very terrible experience that people go through,” Seitz said. “Nobody knew they were going to have this syndrome and it has affected our lives dramatically.”

The group needs volunteers to help with filing, typing and working on a monthly newsletter.

Assistance is also needed to deliver equipment and run errands.

“We have many people who can’t do their own grocery shopping or get their laundry done,” Seitz said. “A simple run to the market would be wonderful.”

To volunteer, call the Volunteer Center of San Fernando Valley at (818) 908-5066.

The Northridge/Reseda-based group Project Headway (818) 407-1568 or (818) 993-4464, which provides group homes for individuals with severe brain injuries, seeks volunteers to assist with clerical duties as well as volunteer board members to help raise funds, act as officers and help develop business contacts.

The Office of Disabled Student Services at Cal State Northridge (818) 885-2684 needs volunteers to proctor tests for physically and learning-disabled college students. Duties include reading and/or writing academic tests in a one-on-one setting. Training is provided.

Getting Involved is a weekly listing of volunteering opportunities. Please address prospective listings to Getting Involved, Los Angeles Times, 20000 Prairie St., Chatsworth, 91311. Or fax them to (818-772-3338).