Postpolio

[mynah]

Sabin live virus vaccine was probably one of the greatest contributions to medical science, judging from the fact that polio was hardly part of our vocabulary in the 60s and 70s, whereas it had been a dread disease just a decade before. Salk's vaccine was a winner too - except that it was confined to the US. I believe nowadays they use a combination.

[lemit]

Good stuff! I'm learning a lot.

There's only one thing in Pyrotex's very good description of postpolio that I might disagree with. One of the symptoms, I learned from a sheaf of papers my therapist gave me that I think she got from a therapy newsletter, is sensitivity to cold.

I thought that was wrong for several months (I even asked my brother what that could possibly mean). Then I started cutting back on tramadol, naproxin, and acetaminophen, letting all of it get out of my system before I took a very minimal dose. I found out what sensitivity to cold meant.

I'm still taking a minimum of medicines and going through sensitivity to cold, as well as all the pain and stiffness. There are days I can barely walk. I need to stop going to lunches and meetings. I can't travel, which means I can't take care of my farm 700 miles away.

I think I'm eady to go back to a full load of pain medicines. I've had steroids injected into my back (between L5 and S1). I don't know whether to try that again or move on to the transdermal electronic nerve stimulation (TENS).

Wish me luck.

--lemit

[Pyrotex]

I wish you more than luck. I wish to give you some advice.
If you had polio, and are now suffering the symptoms you mentioned, then pain meds and steroids and TENS is not going to help you in the long run. It will just enable you to destroy what little is left of your muscular nervous system. This has been demonstrated in tens of thousands of case histories. Post-polio symptoms are trying to tell you that your nervous system is being driven past its ability to cope. It's breaking down. One by one, your muscles are going to fail, absolutely and forever.

Your best bet is to consult with a physical doctor who knows about polio and figure out how you can cut back your activities and stop destroying your nervous system. It's called a "strategic retreat". I've had to do it, and at 62, I'm still working a 40 hour week and have no pain at all. I switched from a manual chair to a powered chair. I switched to a van with wheelchair lift. I stopped playing table tennis. I take a nap (30 to 45 minutes) every other day, usually just after I get home from work.

Pain is your body's way of trying to tell you that shit is breaking down. Listen to it.

[mynah]

Sorry to hear that new effects may be felt after so many years. How do you experience sensitivity to cold? Do you experience exercise as helpful or harmful, or are some exercises helpful and some harmful?

[lemit]

I'm not sure I could describe the cold feeling, but I'll try. There's the feeling that somebody turned down the thermostat, which I've felt if the temperature doesn't get up to eighty this spring, and then there's the feeling of having something cold, metallic in contact with my skin. I don't know if that made sense.

I forgot to mention, and next week I'll see if I can get sources and links for this stuff, but one of those newsletter copies said that postpolio is like Chronic Fatigue Syndrome, so I've started describing it as Chronic Fatigue Syndrome with pain.

Thank you for your interest.

--lemit

[lemit]

Pyro,

I just reread your latest post. Something stood out that should have got my attention immediately. You suggest a "strategic retreat." You are the second person to recommend something like that. The first was my primary care physician.

Extricating myself from my parents' estate settlement, the remodeling of my house that I promised my parents I would use part of my inheritance on, and dealing with all the stuff in storage is going to be difficult, but I'm going to take my time. At least I now know what my goal should be: doing as little as possible.

When I got the steroid injection, the doctor told me I might need to slow down a little for a few days. When I told him a normal day for me is lying on the couch and watching movies on television, he decided I might be able to resume normal activity fairly soon.

Except for the extraordinary incumbencies on me right now, I might have trouble slowing down any more. Also, summer is coming. My cat insists I spend at least an hour a day lying on my back with her in the back yard.

It's a tough schedule. With my current responsibilities, I need to put it off for a while, but I'll probably put off the other stuff instead.

--lemit

[Pyrotex]

lemit,
sounds like you got everything under control.
Pyro

[lemit]

I forgot to mention that my therapy is working well enough that, although I do nothing between the fortnightly sessions, I have somehow gained strength every time I go back.

I think what that means is that I have sublimated my stretching and isometric exercises. My therapist, who has a reputation as a miracle worker and is in constant communication with my primary care physician and the pain specialists, tells me that eventually the strength in the appropriate muscles will help me deal with the pain. That's something to look forward to.

For right now, I know I don't have the reservoir of patience that pain-free people have. I try to deal with that. Writing helps. Humor helps. A sense of community and commonality helps.

But tolerance is not always as easy as my late parents would have liked. Maybe it's like exercise, something I need to do constantly without thinking. Sometimes the difficulty of the training required to think through acculturations and become truly tolerant probably makes me overcompensate. I hope so.

--lemit

[Pyrotex]

Well said.
My pain in my elbows and shoulders got so bad, the PT told me to take 16 Tylenol a day. I tried that for two weeks and it didn't help nearly enough.
My tai-chi instructor taught me how to breath and do very slow non-aerobic arm exercises. The pain totally disappeared in three weeks and never returned, as long as I kept up the tai-chi.

[InfiniteNow]

There was a story on NPR this morning about postpolio, and I thought of you guys.

You can listen to it at the link.



Polio Pioneer Helps Survivors Hold On To Strength : NPR

Dr. Lauro Halstead is one of only a handful of doctors in the U.S. who specializes in polio — and he speaks to his patients with authority. He was one of the first doctors to publish evidence of a startling medical problem: Twenty-five years ago this month, he presented evidence that people who'd had polio as children were reporting a new weakening of their muscles as they got older. It became known as post-polio syndrome. <full story, audio capture of what aired, and additional information at the link>