Post Polio Syndrome; Bad Advice

[Kitiger, RN]

How many of you have had patients with Post Polio Syndrome? I had never heard of it until my Mom had it. Some of the care and advice she received was dead wrong.

We usually tell older people to keep moving, stay active, "use it or lose it", and "no pain, no gain." Keep moving and stay active; that's good advice. But with Post Polio people, we say, "Conserve it to Preserve it!" If an activity causes pain, excessive fatigue, or weakness, then it was too much. Next time, the person should do less at a time. For instance, if a one-mile walk leaves the person weaker or in pain the next day, that person could switch to two half-mile walks. If they keep pushing themselves to the point of pain, they will lose strength faster than they might have. Conserve it to preserve it.

Post Polio can only affect someone who had polio. It is a new weakness that often starts 20 or 30 years after the initial illness, or even later. It is more common in people who contracted polio as an adult, who were physically run down or stressed at the time they got sick, who were completely or almost completely paralyzed during the original illness, and who used an iron lung.

My mom had three out of four. She didn't use an iron lung, but they had one with her name on it in the hall outside her room.

People who worked their way back from near paralysis did so with sweat and tears. They were pushed to their limits and beyond. And all of their lives, they have had to work much harder than the rest of us just to do normal ADLs. These people learned to push themselves, to ignore their aches and pains, and just DO IT!

My Mom was in a nursing home with a broken ankle. She was never able to stand after that, although we did eventually bring her back to her apartment. One of the nurses in the nursing home thought Mom wasn't exercising enough, so she told Mom to push herself in the wheelchair to the dining room. The nurse wasn't about to do it for her. Mom took it as a challenge, even though it took her over an hour to make it all the way down that hall. When the food was served, she found that she could not lift her fork to her mouth. She couldn't lift her arms at all.

Yeah, that was too much exercise!

[twozer0, NP]

Sounds very similar to myasthenia gravis. Is there any correlation between the two? I found this link Post-Polio Syndrome Fact Sheet from the NIH but it didnt state that anything has been tried regarding acetylcholinesterase inhibitors to prevent fatigue. It did say that they were currently researching this. Maybe there could be some form of viable treatment in the future.

[Kitiger, RN]

The theory in Post Polio is that the polio virus destroyed some of the motor neurons, leaving some of the muscle fibers with no enervation. Some of the remaining nerves then sprouted "buds" to enervate some of the unconnected muscle fibers. Also, some of the motor neurons were damaged but not destroyed, and these recovered. This explains how some of the strength is regained.

We all lose motor neurons as we age. That's why a 40 year old does not have the same strength potential as a 20 year old. But with people whose neurons were damaged or destroyed by polio, the rate of decline is much faster. It's something like the way ALS weakness develops. Of course, with ALS, the decline is MUCH faster.

[Lunah, MSN, RN]

My great uncle had polio as a child and his parents were told he'd never walk again. Imagine everyone's surprise when he proved them wrong! It was kind of a shuffle rather than a stride, but it carried him well until he was almost 80.

[nynursey_]

My grandfather passed away about 4 years ago from Post Polio Syndrome. He had Polio as a child which left him with a deficit to his left leg causing him to be unable to bear weight on it properly, rendering it useless. He walked utilizing canes his entire life.

[NanaPoo]

We have to be careful about all the advice we give and make sure we understand the reasoning behind it.

I was once incredibly fatigued and couldn't seem to get up and do anything. My dad decided this was a "laziness" issue and if I'd just get up and get going then I'd feel better. We were on vacation and he was riding his bike for miles everyday and that was his Rx for me. He kept saying, "a body in motion tends to stay in motion." I tend to take advice from my dad very seriously and I ended up with very hurt feelings in the end. It turned out my potassium was less than 2.0. If I'd hopped on my bike for a 5 mile ride I'd likely had suffered an MI.

[BeckyESRN]

My great-grandmother was WC bound r/t post polio syndrome. Her son, my pappy, told me that when she first went to the nursing home, they had trouble not pushing her to do more. She was sharp as could be and looked like any other LOL, but once she over did it; "it" might not come back!

Hope you and your Mom get those nurses/aids on board. She'e lucky to have you.

[Kitiger, RN]

She was sharp as could be and looked like any other LOL, but once she over did it; "it" might not come back!

Exactly. Usually all I needed to do was to simply explain it. Sometimes I brought in educational materials.

My Mom died in 2004. I still miss her so. I took care of her as she got weaker; those times were precious!

I'm putting this out here to remind those who know about Post Polio Syndrome, and to teach those who - like me - had never heard of it. Polio still occurs in the United States, when people who have refused immunization come into contact with someone who is visiting from another country. I have a family member in her late 30s who had polio as an infant in Bangladesh. She will probably have to deal with Post Polio as she gets older. She has already found that she has to pace herself.

[Kitiger, RN]

My great uncle had polio as a child and his parents were told he'd never walk again. Imagine everyone's surprise when he proved them wrong! It was kind of a shuffle rather than a stride, but it carried him well until he was almost 80.

Did his parents push him to try ir did he di it on his own? How old was he?

[Kitiger, RN]

We have to be careful about all the advice we give and make sure we understand the reasoning behind it.

It turned out my potassium was less than 2.0. If I'd hopped on my bike for a 5 mile ride I'd likely had suffered an MI.

We have to listen to our bodies.