| THE OBSERVATORY
By Gary Presley
“Why is it not God’s will that I am in this wheelchair?”
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| POLIO TIPS AND TECHNIQUES by Dr. Richard L. Bruno Last column, we talked about types of tremor, essential tremor being one, which is often treated with beta-blockers. Beta-blockers have been a first-line drug to treat high blood pressure. The problem for polio survivors is that the side effect of beta-blockers—and of most antihypertension drugs –is fatigue, something polio survivors don’t need more of. So, here are some suggestions to take to your doctor about drugs to lower your blood pressure that, hopefully, will not also put you to sleep: | POLIO TIPS AND TECHNIQUES by Dr. Richard L. Bruno If you’ve read our research, you know we’ve found evidence that a shortage of dopamine in neurons that activate the brain is related to polio survivors’ fatigue. Dopamine is the brain-activating neurochemical, but it also turns on the neurons that turn your muscles off when they’re not in use. Without enough dopamine, muscles turn on when they should be off, creating the rigidity and tremor of Parkinson’s disease. So, why don’t all polio survivors have Parkinson’s? With all the news about stem cells, what are their prospects for treating post-polio syndrome? [...] Today, with barrier-free codes allowing people with disabilities to be out and about, and disabled kids mainstreamed in schools, wheelchairs are no more exotic to most kids than iPODs. Unfortunately, there is still a problem with the older generation… [...] What you eat- Polio tips and techniques. When our patients eat protein at breakfast, lunch and dinner (and even have small, non-carbohydrate snacks throughout the day) they report an almost immediate reduction in nearly all PPS symptoms, especially fatigue. [...] In May, New York City honors one of the pioneers of the disability rights movement. By Amy Meisner-Threet Most people involved in the disability rights movement since the 1970s know the name Frieda Zames—not just in New York, where Zames lived all of her life, or even the United States, but all over the world. She was not large in stature, but her spirit and influence were huge. I did not have the privilege of knowing Frieda in life, but I have heard her name since I entered the disability community. I spoke at length with her partner of 32 years, Michael [...] | Polio Tips and Techniques By Dr. Richard L. Bruno I got a call from a very upset power wheelchair-using patient. She had gone for a mammogram the week before and just got a message that there was a shadow on her left breast and that she needed to come back for another mammogram. The next available appointment: Two months! She believed that the technicians couldn’t get her powerchair close enough to the X-ray machine to get a clear picture because they didn’t take the time to let her remove the powerchair’s joystick. After making a few calls, I got the patient [...] POLIO TIPS AND TECHNIQUES | By Dr. Richard L. Bruno It’s that time of year when taxes are due, and, as with the grim reaper, the tax man always gets his way. But, there are ways around the tax man with paths provided by the IRS itself. For example, when polio survivors travel to The Post-Polio Institute for evaluation, we remind them that the cost of airfare, hotel, food, ground transportation—even the expenses of someone flying with them as their “assistant”—are tax deductible. This is a surprise to many patients. Everyone knows that payments and co-pays for medical evaluation and treatment and prescription [...] Dr. Richard L. Bruno’s roadmap for obtaining Social Security Disability Income if post-polio keeps you from seeking or holding gainful [...] Dr. Richard L. Bruno continues his rant on “Bad Research” and unpublished medical research in “Bad Research Part [...] By Marjorie Cohen FDR–American Experience. PBS 2007. Filmed and Written by David Grubin. It was the summer of 1921 when Franklin Roosevelt, former undersecretary of the Navy and rising star in the Democratic Party, was stricken. He had visited a boy’s summer camp and left with a strange virus that rendered his legs useless to him. He was finally diagnosed with polio or as it was then called, Infantile Paralysis. It appeared that Roosevelt’s political career was truly finished. In the 1920s, polio, if not a death sentence, was a scourge on the populace. “Nice families kept their disabled children in a back [...] Dr. Richard L. Bruno rants on why “Most research submitted to journals is [...] Dr. Bruno on tips and techniques to help people deal with feelings that can prevent a physical disability from becoming an emotional one. [...] Why power wheelchairs are the way to go for post-polio survivors. Dr. Richard L. Bruno straight talks on the advantages of powered [...] By Dr. Richard L. Bruno When polio survivors first came to the Post-Polio Institute at Englewood Hospital and Medical Center in Englewood, New Jersey, 25 years ago, we discovered that the disease had a profound effect on learning and earning. The six subjects in our first post-polio research study made clear that polio survivors were very unusual. The subjects used power wheelchairs and had, not just bachelors, but also graduate degrees. It became apparent that polio survivors were unique, not only among individuals who had disabilities of equal severity, but also among nondisabled peers. Our polio survivors had risen high in their [...] By Dr. Richard L. Bruno The Centers for Disease Control has reported that 92% percent of US toddlers are vaccinated against polio. Ninety-two percent sounds good, until you realize that leaves more than one million US children unvaccinated. Between 2005 and 2006, polio vaccination dropped in 20 states and in 10 large cities. While any reductions in polio vaccination are troubling, the location of the cities and states where vaccination dropped is frightening. The cities are major points of entry into the US-New York, Philadelphia, Houston, and Seattle-where a nearly 4% drop was reported. It’s no surprise that toddlers living in poverty [...] By Richard L. Bruno The weather outside if frightful, and your toes are too frostbiteful. But, since you’ve no place to go… Wait. Who says you’ve no place to go? It may warm your cold polio feet on this blustery March day to know about a Norwegian study of 88 subjects diagnosed with “post polio syndrome” (PPS). Twenty-nine were said to be “control” subjects, even though most were getting “one or two physiotherapy and/or swimming sessions” a week. Fifty-nine subjects received therapy for PPS for four weeks, although the details of the treatment were not described. Therapy was said to be [...] By Richard L. Bruno When people talk about caring for someone with a disability, you often hear of caregivers getting burned out. When it comes to caring for polio survivors, it’s the polio survivor who often gets burned-not out, but up. Many polio survivors get angry when it’s suggested that they ask others for help. Actually, their anger is hiding a real fear. Most polio survivors had painful early experiences of rejection and emotional and physical abuse, often by family members, just because they’d had polio. Polio survivors learned early and often that they should look “normal” and act “normal,” never [...] by Richard L. Bruno You may be asking why there’s a new column in Action about polio, a terrifying disease of the twentieth century that was cured when a vaccine was developed in 1955. The poliovirus, which caused muscle weakness, paralysis and death, is gone, you may say. Unfortunately, the vaccine didn’t cure polio. And, the poliovirus is far from gone. The virus is alive today and paralyzing children and adults in Pakistan, Afghanistan, India and Nigeria despite a decades-long international vaccination effort. What’s more, 10 African and Asian nations that had been polio-free, thanks to vaccination, have had the virus reintroduced [...] |
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