Postpolio

[mynah]

Lemit and Pyrotex, thanks for sharing your stories. There is a lot of information there about polio that is new to someone of my generation of South Africans: My parents grew up fearful of the dread disease, but I still remember lining up at the clinic as a small kid and getting my Sabin oral vaccine on a cube of sugar.

 

Some things about polio are not clear to me. From what I've read, most people who were infected recovered fully. In the case of those who appeared to be not so severely affected but who did develop complications, when, how and at what time did these manifest themselves? Just how does the virus affect the nervous system, and how common is the condition nowadays?

[Pyrotex]

Lemit and Pyrotex, thanks for sharing your stories. There is a lot of information there about polio that is new to someone of my generation of South Africans: My parents grew up fearful of the dread disease, but I still remember lining up at the clinic as a small kid and getting my Sabin oral vaccine on a cube of sugar.

 

Some things about polio are not clear to me. From what I've read, most people who were infected recovered fully. In the case of those who appeared to be not so severely affected but who did develop complications, when, how and at what time did these manifest themselves? Just how does the virus affect the nervous system, and how common is the condition nowadays?

Okay, I'm at the office, so here's the short version.

 

Polio myelitis is a virus, a rather large and simple virus. Actually, it is a family of viruses -- there are principally three types: one attacks the nerve endings that control voluntary muscles. The second attacks nerve nodes near joints and the spine, that pass signals on to voluntary muscles. The third attacks the tissue in the brain's medula oblongata (near the brain stem) that originate these signals.

 

The effects always start with body aches, joint pain, lethergy and high fever. This can frequently lead to coma for a few days, until the fever goes down. The victim can wake up none the worse for wear; or paralyzed in a few muscles (often in just one limb); or paralyzed in many muscles (often unable to breath); or dead. By this time, all viruses in the body have died.

 

If not all nerve endings to a muscle have died, the remaining ones usually multiply and thereby regain some use of the muscle. Recovery is never "complete", but recovery of more than half of the original strength is common. The so-called "non-paralytic" polio is where the victim had mostly type 3 virus, and the degree of damage is not obvious until many years later. Oddly, a severe attack of type 3 can in rare cases also lead to profound mental retardation -- almost a walking vegetative state.

 

If muscles are significantly paralyzed, they are often not symmetrically attacked. Muscles always occur in pairs that work against each other. Often, one will be attacked and not the other. This leads to joint and bone distortion as the victim grows. Surgery is required to reset the joints and bones. Spinal curvature (scoliosis) is common among polio survivors.

 

After only one or two years, the victim will typically regain 90% of all the strength that he or she will ever have from then on. Intensive exercise after this point only serves to damage more of the nervous system.

 

About 40 years after the initial assault, the victim typically suffers post polio syndrome (PPS). This includes sudden muscle weakness, joint pain and chronic exhaustion. This is not a recurrence of the disease, but essentially the equivalent of chronic stress disorder. A polio victim, in 40 years of "normal" use, will wear out the remaining nervous system twice as rapidly as uninfected people will. At this stage, it is important for the victim to cut back on strenuous exertion, aerobic activities, and stressful schedules, or run the risk of incurring further damage to the nervous system.

 

Note that polio affects voluntary muscles. Very odd, but it never touches the nerves leading to involuntary muscles (the heart, the bowels) and never touches the nerves of the sensory system (touch, pressure, heat). So, a victim may be unable to move anything below the neck, and yet will still be able to feel everything, control his bladder, enjoy sex and know when his butt is getting sore. The muscles to the diaphragm (breathing) are unique in the body as they are both voluntary and involuntary. The voluntary nerves may be destroyed, but the others are often sufficient for the victim to recover a partial ability to breathe, at least for a decade or two.

[Pyrotex]

Even if you survived polio -- even if you had a very mild or a very severe case -- taking the Sabine sugar cube vaccine was not a "waste". The vaccine protects against all three types of the virus. You may have been infected with only one, or perhaps two of the types. So, the vaccine immunizes you against the others.

 

Plus, the Sabine vaccine contained live virus. Its teeth were pulled, but the immunity was delivered by the simple process that the vaccine "infected" you with polio. No lie. It had been rendered benign, and so you would get no symptoms at all. Except for one: you become (temporarily) infectious. That's right, for a week or so after taking the Sabine vaccine, you are "hot" and others can catch the (benign) virus from YOU! Then they become immunized, and can even continue to pass it on to others. :)

 

The bottom line of this is, that if you succeed in only vaccinating, say, 75% of the population -- EVERYBODY becomes immune to polio! :)

How's that for a hat trick?

[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 **** 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. :confused:

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>

[Pyrotex]

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

Thanks bunches, InfNow! :confused:

[lemit]

I'm re-opening this thread because I need input.

 

I need heart surgery, mitral valve repair for a torn chordae tendinae (Chordae tendineae - Wikipedia, the free encyclopedia). The surgery (and surgeon) are described at: Heart Valve or Port Valve Surgery and Boulder Community Hospital. However, the surgeon shown there wants to do a sternotomy (Median sternotomy - Wikipedia, the free encyclopedia) on me, saying the Port Access surgery will compromise my lungs more than a sternotomy will.

 

Lungs are a problem for those of us with post-polio. For that reason, my physical therapist and postpolio therapist (and my optometrist) advise me to approach the surgery with caution. In case you're wondering, my optometrist had a post-polio friend who died under anaesthesia. I have been anaesthetized five times in the last three and a half years, but those have been short-term for fairly minor procedures--one of them a delayed esophageal dilation (Esophageal stricture - Wikipedia, the free encyclopedia) for which the anaesthesia was so short-term that it had worn off by the time I had the procedure. Two nurses, who were surprised later that I knew who they were, had to hold me down while the surgeon stuck what felt like a grain auger down my throat. I'm sure the anaesthesia for this surgery will be administered more inclusively, thus compromising my resparatory system more.

 

There are minimally invasive sternotomies, such as the ones explained at Minimally Invasive Heart Surgery Center : Mitral Valve Repair Reference Center. But I don't think that's what my surgeon wants to use.

 

I'd appreciate input from anyone with post-polio who's had major surgery, particularly thoracic surgery, or anyone who knows someone like that. Or anyone who has other information--or questions I haven't yet thought of.

 

Thanks.

 

--lemit

Edited August 8, 2010 by lemit

[Pyrotex]

I'm re-opening this thread because I need input...... I'd appreciate input from anyone with post-polio who's had major surgery, particularly thoracic surgery, or anyone who knows someone like that. Or anyone who has other information--or questions I haven't yet thought of....

Hello, lemit

 

Well, I had polio as a child, I've been in a wheelchair for over 55 years, and I've had serious bouts with post-polio symptoms. I too have certain weaknesses of the lungs, including a tendency to get pneumonia more often than I deserve.

 

My only surgery recently was to rebuild my left rotator cuff. I was under anesthesia for about two hours. But the surgeon talked with the polio experts at TIRR (Texas institute of Rehabilitation Research). It did take me a lot longer to come out of it, then they expected, but there was no permanent damage to my lungs or breathing. I think it was crucial to th success of my case that the surgeon and anesthesiologists conferred with polio experts.

 

Pyrotex

[mynah]

Lemit, this link may be helpful: Preventing complications in polio survivors

 

Good luck with your surgery.