October 10, 2012

Why I Actively Manage My Health Care

The Bell Curve for Normal Distribution
In probability theory, normal distribution -- shown in the Bell Curve above -- is considered the most prominent distribution in statistics, used in natural and social sciences as a simple model to explain complex phenomena.

How the Bell Curve Helps Me Manage My Medical Care
Through the years, when I've gotten sick enough to seek relief, I'd go to a doctor and do what he told me to do. Or I'd take a commonly used (and widely advertised) over-the-counter remedy. No questions asked. 

Now that I'm dealing with more serious conditions -- aging, Parkinson's, prostate cancer, low back pain... the list keeps growing -- I've begun researching and thinking more about possible remedies. 

Until now, we've practiced medicine mostly by finding treatments for the majority of people who fall in the fat, middle part of the Bell Curve. Doctors have prescribed medicines and treatments for everybody, based on what seems to have worked for that majority.  

But I may not fall in the fat part of the curve, and the standard remedies may not work for me.

The Bell Curve and My Big Three Issues
Last week I posted a three-part series, reviewing recent checkups with the specialists who are working on my major health issues: prostate cancer, Parkinson's, and low back pain. In each case, the Bell Curve comes into play:
  • Prostate Cancer I had my cancerous prostate removed in January, 1995, but post-operative PSA tests showed remaining cancer cells. The semi-annual PSA tests since then have shown only slow growth in the cancer, except for a strange uptick this past year. My research shows that 10 to 30% of prostatectomy patients show recurring cancer, half of them within three years. So on a Bell Curve showing the probability of  a successful outcome from a prostatectomy, I'm someplace off on the left slope of that curve. But the very slow growth of cancer -- based on 17 years of PSA tests -- puts me on the right-hand slope of a Bell Curve of the probability of surviving with a post-operative recurrence of cancer. Lose one. Win one. 
  • Parkinson's Disease. I was diagnosed with PD four years ago. About half of the people who've lived with PD for five years or more develop signs of dementia. I was relieved at my regular checkup last week, when my neurologist said I'd be an "outlier" on the PD/dementia curve, because of the things I'm doing, like remaining busy and engaged, and actively managing my health care.
  • Back pain  So far, I've been on the wrong side of the Back Pain Remedies Bell Curve. When the back pain started as a result of a fractured vertebra after last August's car crash, my back doctor and physical therapist assured me that the vertebra would mend -- and the pain abate -- within four months. The vertebra healed, but the pain remained. The next diagnosis was arthritis in the bones. My pain doctor gave me steroid injections to relieve the pain by reducing the inflammation. He said the shots usually worked for two out of three patients with arthritis-related pain. No luck for me. I then tried acupuncture, reiki, chiropractic, massage, pain skin patches, pain med injections, and a medial branch nerve block. Unfortunately, I've fallen on the "wrong" side of the curve in all these procedures. Undaunted, my doctor and I continue to explore options to get me on the recovery side of this Bell Curve.
Other Examples of the Bell Curve in Medicine
It helps me to keep the curve in mind when I consider other medical issues:
  • Hype about dietary supplements  We're bombarded by claims for magic pills that will cure our ailments. Some of the hype comes from TV doctors who tout the latest fad supplements. Bloggers beat the drums, too... as I did -- in error -- for the magic powers of http://bit.ly/LRlYvu.  What I need to remember is that the anecdotal reports on  wonderful successes a few individuals are having with a particular supplement may well be true but these individuals probably are way out on the far edge of the Bell Curve and their experience has little significance for the rest of us. A classic example of this is the current craze for coconut oil as a remedy for Alzheimer's which has its origins in the report of Dr. Mary Newport on her experience using it with her husband who has Alzheimer's. This report , and the follow-up hype from her book and a few TV doctors, has thousands of us (yes, I was briefly on the bandwagon) buying coconut oil and consuming it (at 117 calories per spoonful!).  I recently had an e-mail exchange with Dr. Newport on whether others have been helped, which I'll report on later this week.
  • Finding the medication and the dose that's right for ME.  I've come to realize that Big Pharma and the medical community base their recommendations for prescription drugs and the recommended dosage on what seems to work for people clustered around the middle of the Bell Curve.  People who have tried using prescription drugs for depression are well aware that they often are outliers on the Bell Curve of probability for a particular anti-depressant working for them.  I had the same experience recently on trying to find a blood pressure medication that would work for me. My internist and I tried several meds until we finally hit upon one that worked for me.  But although it brought my blood pressure down nicely, it left me feeling fatigued and out of sorts.  I was ready to give up on this one until I decided to experiment with cutting it in half. Bingo!  Blood pressure is down; side effectrs are gone.  I have a feeling, backed up by some research reports I've seen, that the elderly often are outliers on the Bell Curve for the recommended dosage on many meds. I've also (with my neurologist's OK) cut in half my 1 mg. prescription pill  for Azilect/ (But I did this for cost-cutting reasons, not medical reasons
  • Cautions for my blog readers.   My awareness that I'm just one tiny pinpoint on the Bell Curve has taught me to caution my readers when I recount my experiences that what works for me may well not work for them. Too people are out there on the internet suggesting that something that happened to work for them is a panacea for the rest of us.We all need to realize that we shouldn't rely on these anecdotal reports, that we should carefully research any recommended supplement, prescription med, or course of treatment, and that we should closely monitor out body's reaction to any new pill or treatment.
Promising Hope for the Future --  Personalized Medicine
Thanks to new breakthroughs in genetic research, we are on the cusp of a whole new approach to health care.Rather than the current approach which is based on recommending for everybody what's been shown to work best for those around the middle of the Bell Curve, the emerging approach will be based on looking intently at my genetic makeup and my medical history and then designing a treatment customized for me. I want to do more research on this and report on it later.

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