Dr. Richard Bruno is Chairperson of the International Post-Polio Task Force and Director of The Post-Polio Institute and International Centre for Post-Polio Education and Research at Englewood (NJ) Hospital and Medical Center. His new book, The Polio Paradox: Uncovering the Hidden History of Polio to Understand and Treat "Post-Polio Syndrome" and Chronic Fatigue, will be published by Warner Books in June 2002. Please e-mail questions directly to him at ppsforum@newmobility.com.

Note: This column is for information purposes only and is not intended as a substitute for professional medical advice.

Q: I have been married for 35 years. My husband accepted my polio until PPS made me need to conserve energy. It took months for me to ask my husband to help do chores. He agreed but forgets to do what he promised, like take out the garbage and do laundry. I remind him but it doesn't help. I am afraid he is going to leave me.

A: Fortunately, we have yet to see a "post-polio divorce." Still, polio survivors worry about divorce for a good reason: their painful history of neglect, abuse and rejection by society and family members because they became disabled and needed assistance. This is why polio survivors with PPS don't want to look disabled or depend on others for help.

Polio survivors' fear of rejection is evident in two studies. Australian PPS researcher Mary Westbrook found that lifestyle changes most obvious to family members--asking family for help, buying special equipment and home modifications--were adopted by the fewest polio survivors in spite of these changes being rated as the most effective in managing PPS. Swedish researcher Anna-Lisa Thoren-Jonsson found that polio survivors refused about half of the special equipment recommended to help them, equipment that would make them look obviously disabled. It's no surprise that our 1997 study found that the Post-Polio Institute patients who use crutches or a wheelchair feel less adequate as family members.

It's also no surprise that acceptance by spouses and family has a profound effect not only on polio survivors' physical well being but also on emotional health. Researcher Margaret Campbell found that family support increases acceptance of PPS symptoms, while there are more symptoms of depression in polio survivors who have less social and family support. So it's essential that family members understand polio survivors' fear of rejection and accept lifestyle changes when they reduce physical activity, ask for help and appear "more disabled" when they use new assistive devices.

Fortunately, acceptance by family members is the norm. Family members typically agree to take on shopping, cooking, cleaning and laundry chores. Husbands actually volunteer to do these jobs, saying about their wives, "I have asked her to let me help for years. She just won't stop doing!"

The problem is there can be a lack of follow-through. Family members agree to help, and do help for a while ... but then "forget." This frightens, hurts and sometimes angers polio survivors. After all the emotional work it took for polio survivors to ask for help, and after family members agree to help and are helping, they sometimes stop ... and need to be reminded again and again. Why does this happen? We call it "The Lassie Effect." Polio survivors have trained family and friends too well and for too long to ignore their disabilities, even rebuffing offers of help. So it takes more than a few reminders to undo years of training in ignoring polio survivors' limitations and not providing assistance.

Unfortunately there's also an emotional problem when family members do help. Polio survivors often feel they have no purpose in life if they are not doing for others, that they have become a burden to their families. Some polio survivors confuse absolutely everyone when they start to feel better and take back the very jobs that family members were doing. It's hard for polio survivors to understand that the real burden for families is not taking out the garbage or doing the laundry, but seeing their loved ones in pain, fatigued and losing muscle strength.

There can be yet another emotional problem. Family members can sometimes be too supportive. Spouses will constantly remind polio survivors to sit down and take rest breaks, and they will ask if they've had their high-protein breakfast. This incessant hovering doesn't make polio survivors feel less frightened about rejection; it makes them feel more disabled. Neither gentle reminders nor well-meaning nagging can force polio survivors to eat breakfast, rest or stop them from painting the ceiling. Polio survivors must take responsibility for their own bodies by taking care of themselves and asking others for help.

These complicated ins and outs lead to the "Golden Rule" for friends and families of polio survivors: Know everything about PPS, say nothing and help only when asked.

Friends and families need to understand the cause and treatment of PPS, help with physical chores only when asked, and hold their tongues if they see the polio survivor doing too much. With information, communication and patience--with yourself and with your husband--you won't have the first "post-polio divorce."