SALT LAKE CITY — Years ago, when Steve Amundsen's foot began to hurt, a doctor told him not to walk so much.
"Can you imagine where I'd be if I had listened to him," Amundsen said Thursday. The 62-year-old polio survivor suffers from post-polio syndrome — a degenerative condition of the crippling disease, marked by debilitating fatigue and weakness — but he doesn't let it get him down. He's heading into the unknown as he continues to age, but he's hoping to increase awareness of the disease so sufferers can help each other.
A study under way by University of Utah researchers turned up dozens of polio survivors, creating a database from which Amundsen hopes to start his work. He plans to create a Web site that will eventually link to other support groups nationwide, "bringing other post-polio sufferers out of obscurity and into a world of help and hope."
"You do your best to live a life pretty well, and yet as you get along in years, it starts affecting you again," he said. "It's left a lot of people thinking there is no hope, and I know I don't want to end up in a wheelchair. You can do something."
Doctors have been telling 78-year-old Fran Broadhead to make an appointment for knee replacement surgery, something she's become skeptical of as more information comes out about post-polio syndrome, which she also suffers from.
"I think it's the polio and not the knee at all," she said. "But I'd like to get an opinion from others who might be going through the same thing."
Amundsen is joining a local post-polio support group that was organized in the early 1990s by the Easter Seal Society of Utah and has been ongoing. The group meets the fourth Saturday of every month, at the Salt Lake County Complex, in Room N3005 in the north building, 2001 S. State. The meeting runs from 10:30 a.m. to noon. Only about six people regularly show up, and he believes that with as many as were affected with polio in the '50s, the attendance is "terrible."
"It's not a pity party, it's a way for us to interact and share stories on what has helped us, to get the word out and tell people to not give up," Amundsen said. He's hoping to help others who are like him to feel hope for the future, instead of giving in to unnecessary surgeries and other unproven treatment methods, some involving drugs that have undesirable long-term side effects.
"We need to be looking at all forms of health and therapy," he said. Over the years, as his pain grows more severe, Amundsen has been frequenting massage therapists, chiropractors and has been taking vitamin supplements, which he says are imperative because of today's nutrition-deficient diets. "It all helps."
Carol Held has been voluntarily facilitating the support group for the past 19 years, developing close friendships along the way and seeing how information can make a difference in the lives of survivors and their families.
"There's not a magic bullet for these types of things, so the next best thing is to give them coping mechanisms," Held said. A lot of participants, she said, benefit from the resources shared at the meetings, alleviating the fact that they think they're crazy because they're not getting the care they need for certain conditions.
Broadhead said she'd be interested in attending when she feels well enough, as she's curious "how others have been taking care of themselves."
"We're all at different stages, and I think the younger people might want to know about what we've been going through," she said.
When Amundsen first noticed that his leg and foot pain had returned, not many people or doctors knew much about post-polio syndrome, leaving him with few answers. Many thought that the disease disappeared when vaccines were introduced, first in 1955 and again in 1960. As more survivors started showing symptoms of muscle fatigue and weakness, more information became available nationally, but Amundsen said not many know where to go for help still.
He's hoping more will show up to the meetings, which would likely provide more resources for everyone concerned.
"We need to be more visible, it's important to have a voice," he said.
For more information on post-polio syndrome support groups, e-mail Steve Amundsen at samundsen@comcast.net.
e-mail: wleonard@desnews.com