For info about WE'RE STILL HERE! October 14-17, 2007, credible, check your facts:

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Staying positive gets the message across.
Explain to readers why we need to recruit more health professionals. For instance, polio survivors have specialized needs, thus we require special help. Also, having had polio can compound new age-related health problems. Finally, many who have championed our cause all these years are now retiring. We need to attract new individuals to take their place. A word of caution: Stay away from demonizing the medical community - this only causes readers to see us as whiners.

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A Few Words About Definitions

Don't get hung up on definition.

Polio conditions exist along with other diseases. Therefore, it is important not to get hung up on definition but to encourage polio survivors and their medical professionals to work together to find the causes of any symptom and provide treatment, i.e., medication for hypothyroidism, hypertension, diabetes, irritable bowel syndrome, etc., etc. An evaluation that too quickly determines that prior polio is the sole cause deprives survivors of potential treatments.

Expanding the Point

One of the nice things about living in Saint Louis is that it is centrally located and periodically polio survivors fly into or through the airport. Many call and we meet for dinner. Last Friday my gracious hosts were Baldwin Keenan and his wife. Baldwin asked me about the comment in the last PHI Communiqué that said post-polio syndrome and post-polio sequelae are not the same thing. I pondered whether I should write to all of you, and I was pushed over the edge by an email this morning that said, "the neurologist who did the initial testing is retired and both the new neurologist and my primary care physician are skeptical about the existence of PPS."

We all get frustrated when we hear that physicians say such things, but in their defense, they read the peer-reviewed literature where post-polio syndrome (PPS) is defined by four or five basic criteria. For our discussion here, the most important criterion is "Exclusion of other neurologic, medical, and orthopedic problems as causes of the symptoms."

Over the years leading researchers, physicians and task forces have dealt with the issue, and all have come up with similar conclusions. The point is that if you go to a physician who can find another cause for your pain or weakness or fatigue, then you don't have PPS. (This can also explain the discrepancies in the percentages of people said to have post-polio syndrome.)

I think this is good news for some of us. We get treated, we feel better, we continue our life. But some of us are not so lucky; physicians can't find a cause for the new weakness and fatigue. Post-polio syndrome is, at best, manageable and can be stabilized, but as of today it is not curable. It is not going to go away.

I am reminded of the lady who excitedly told me she had found the cure for post-polio syndrome - a thyroid hormone pill. Her doctor prescribed it and her fatigue was gone. The point is she had hypothyroidism, not post-polio syndrome. It is not necessarily a bad thing to visit a "skeptical" physician.

In the early 1990s a lady in our Saint Louis group had extraordinary fatigue "because of her polio" and she kept calling me. Luckily, one day I suggested she have a good physical. She went to her family physician who didn't believe in PPS. He diagnosed lung cancer, and within a year she was dead. It is not necessarily a bad thing to visit a "skeptical" physician.

The term "late effects of polio" refers to all the related consequences of having had polio, including sore shoulders from walking on crutches for forty years, for example, or back pain from walking on legs of unequal lengths. Although these consequences are frustrating, they are not a surprise or a medical mystery, and they are believable problems to physicians. In fact, medical professionals are in awe of what we have accomplished with muscle substitution and re-education.

The term "late effects of polio" was used by the Social Security Administration in 1987 when they established the ruling for disability (SSDI). In 2003, they revisited the ruling and renamed it "post-polio sequelae," a broader term like the late effects of polio. The percentage of people said to have the late effects of polio or post-polio sequelae will be higher.

In fact, I personally prefer the late effects of polio because that includes more people, and PHI is here to link all polio people, not just those who have a specific condition.

Why did I bring this up in the last PHI Communiqué? I encourage you to write letters to the editor ( and talk about our issues. One of the most pressing in your area may be the need for health professionals who understand our unique medical problems. But I am convinced that we will not recruit skilled people if we insult them first! So, I was just reminding you that not all docs who say "you don't have PPS" don't believe in it - they may rightly have found another cause, and I think that can be a good thing.

Joan L. Headley, Executive Director, Post-Polio Health International