The power of patients networking

Dave deBronkart learned that he had renal cancer in 2006. From his doctor and from many internet resources, he heard that his death was imminent. Then, he hooked into an internet network of renal cancer patients, where he learned about a scientific (but not well-known) treatment that offered him a chance.  He pursued the treatment and had a great result. He became an e-patient, a patient who became empowered because he acquired access to important data. Now, 4 years later, he gave the following TED talk, and you'll see that he's very much alive and kicking. I recent had a similar experience, though not in nearly as serious a situation as Dave's. I was diagnosed by two doctors with "tennis elbow." I don't play tennis, but I play the guitar, and I suspect that that strumming was the precipitating cause for me. About three months ago, before I noticed any problem, I assumed that tennis elbow was irritating, but that it quickly went away when you stopped engaging in the causative activity.   The two doctors I consulted told me otherwise. They said that tennis elbow lasted for as long as a year, or more, and that it can be disabling. They said that you simply take aspirin and rest it, that it is a long drawn out problem and that there is not much else you can do about it. I "confirmed" this first-hand, when I stopped playing the guitar for two months, but the condition did not get any better. I bought two types of arm wraps at the drug store and I wore one or the other for weeks. My arm remained extremely weak. For instance, I could not lift a heavy book with the affected arm. When someone shook my hand, I felt excruciating pain at the elbow. Like Dave, I refused to stop searching for a better answer. I took to the internet, and about three weeks ago I found what appears to be a cure. It's a rubber bar that costs $15: [caption id="attachment_18575" align="aligncenter" width="300" caption="Thera-Band FlexBar"][/caption] I've been doing the simple exercises for two weeks (click this link and watch the short video demonstrating the exercise); it's amazingly simple and it takes less than 10 minutes per day. My pain has decreased by 95% and my strength has probably tripled, even though I'm taking only one over-the-counter Naproxen per day. This is a scientifically-designed and tested remedy, which suits me fine.   In fact, the device and exercise was being tested in a double-blind study that was so incredibly successful that the experimenters stopped the study in mid-stream and gave all of the patients rubber bars.  It pains me to think of all of the victims of "tennis elbow" out there who are suffering with the pain needlessly because their doctors are telling them what my doctors told me. I have no interest in any form of voodoo, such as homeopathic medicine, and you'll hear a lot about these unscientific treatments on the Internet.  This post is not about unproven and unscientific remedies.  What you heard from Dave (and from me) is that there are often effective and proven remedies out there, and that you will not learn about from your doctor.  I agree with the main point made by Dave, that we need better methods for sharing information regarding successful treatments that are already out there.  E-patients, unite!

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Penance At Other’s Expence: The Hypocrisy of Anti-Choice

Rick Santorum exudes an unbelievable hypocrisy over abortion.  You can read the article here. Basically, Mr. Santorum has it in mind to use the law to prohibit a medical procedure his wife had to go through in order to save her life.  As the piece makes clear, in October of 1996, Karen Santorum underwent an abortion in the 19th week of pregnancy in order to save her life from an infected fetus.  She had a 105 degree temperature.  She would have died without the procedue. Santorum would make that option illegal.  Basically, his position seems to be that sacrificing his wife for the fetus would be his choice now.  This overlooks the fact that had they not done the procedure, the fetus would not have survived, either.  He would have lost both.  Sacrifices to his conscience, which seems incapable of the kind of triage humans must make all the time. Well and good, some people just can’t go there.  But this man is running for president.  He intends that his personal inability to cope be made a national policy of denying anyone the choice of coping. [More . . . ]

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“Retard” and other disability-insults.

The word "retard" possessed dual meanings for a long time. First used as a term for intellectual disability in 1788, the word took on a pejorative sense in the 1970s. For thirty years the two meanings curiously co-existed. Universities had "Mental Retardation and Developmental Disability" Departments and students who drunkenly called one another 'retards' for lobbing bad beer-pong balls, and the two existed in tandem. But once medical and social service experts finally disavowed the word 'retard', it vanished from official usage with amazing swiftness. The Special Olympics ceased using the 'r-word' in 2004, initiating the trend. In 2006, the (former) American Association of Mental Retardation changed its name to the American Association on Intellectual and Developmental Disabilities. By 2008, Special Olympics turned the abolishment of 'retard' into a full-time effort and launched R-word.org. The site protested the derogatory use of 'retard' (including a protest campaign against the 2008 film Tropic Thunder, which featured a lengthy discussion on 'retard' roles in film). Special Olympics and R-word.org also pushed for their fellow disability-service organizations to drop the term. In 2010, 'retard' was legally banished from the professional lexicon. On October 5 of last year, Obama signed "Rosa's Law", which banned the use of "retard" in all federal health, education, and labor policy. "Intellectual disability" and "developmental disability" became the approved nomenclature. Non-federal organizations followed hastily: in Ohio, Google directs you to the "Department of Mental Retardation and Developmental Disabilities", but the website itself has already been scrubbed of the R-word(even if the url still has the dreaded 'r' in it). It's official: 'retard' has no place in formal usage. Once a medical term for someone with an intellectual disability, it lives now only as an insult. One that means, roughly, unintelligent. Like moron, which began as medical terminology for one with a mental age of 8 to 12. Or imbecile, which meant 'a mental age of 6 to 9'.

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Melanoma is Sneaky

Much to my surprise, I recently was diagnosed with melanoma. Fortunately, I was suspicious of a skin spot, and showed it to a dermatologist. He shrugged and said, "probably not," but cut it off for a biopsy. A week later he called and told me to see a surgeon ASAP. I now am scheduled for minor surgery and further biopsy. The prognosis is, "Don't worry about it." Then a friend from high school shared this video with me, and told me that he's been inspired by my post to see a dermatologist to check out his spots. What you don't know can kill you. Had I ignored the spot, I might have lived another decade before it killed me. I knew a fellow who had a mole burned off, a couple of times, before someone bothered to biopsy it. By then, they gave him 6 months. But he was an athletic individual who wouldn't quit, and lived five years. But those last couple of years were hardly living, in terms of quality of life.

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Bernie Sanders: Slashing Medicare would be a death sentence for many

Senator Bernie Sanders asked some simple questions of those who seek to slash Medicare. For instance, what is it that they think would happen, because this is not simple an idle policy debate.

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