December 22, 2014

Happy Holidays and See You Next Year (Which I Intend To Live as Though It Were My Last)

I had intended a quick and easy post for today -- a "been there, done that" to those now planning travel to Cuba. The post would have included mostly photos -- with minimal narrative -- of my terrific (but unlawful) trip to Cuba in 2000 with my Brit pal Terry.

But after spending an hour struggling unsuccessfully with my Picasa photo library, I gave up. More than that, I decided to spend the rest of this holiday season spending quality time with family and friends... not with my computer.

December 19, 2014

Elderly at a Much Greater Risk of Flu This Year

During most seasons, it is estimated that 90% of seasonal flu-related deaths and between 50 and 60% of seasonal flu-related hospitalizations in the US occur in people 65 years and older. Influenza can be a very serious disease for the elderly.This is because human immune defenses become weaker with age. So influenza can be a very serious disease for those of us 65 and older.

This year's flu season got off to an early start and predictions are that it will prove to be a big flu season, 

This Year’s Flu Vaccine Is Seriously Defective
Several viruses circulate during any given flu season. And flu viruses are always changing. Every three years we have a problem with the match between the vaccine and the strains in the current year’s virus.

The CDC announced recently that this year’s flu vaccine is missing a key strain, one that accounts for 48% of what’s circulating. That strain was discovered in March 2014, but the vaccine strains for the northern hemisphere, including the U.S., had been decided a month earlier. (The southern hemisphere vaccine will include this drain.)

Unfortunately, this strain that the vaccine missedm, historically has produced more serious illness. That means more will get complications, such as pneumonia, and require hospitalization and intensive care. And, unpredictably, building more deaths from the flu – – a toll that ranges widely from year to year, causing 3000 49,000 fatalities

So we face a double whammy—a rogue flu strain and it’s of the more severe type.

The Flu Vaccines Have Never Worked Very Effectively on the Elderly
According to the CDC, the flu vaccine reduces the odds of getting the flu by 70% to 90%. That statistic only applies to healthy adults. The efficacy of the vaccine on the elderly is much lower.

Some claim the government has buried a definitive study done a decade ago  because the science came down on the wrong side. It found that after decades and  billions of dollars spent promoting flu shots for the elderly, the mass vaccination program did not result in saving lives. In fact the death rate among the elderly increased substantially. Check out this CBS News video.

What Can We Do To Protect Ourselves?
Most authorities still recommend that you get your flu shot.  People who get the shot have better protection even where there is a mismatch. They often get a less severe case of the flu and they’re less likely to spread the flu to someone else.

December 18, 2014

My New Docs on My Meds: Blood Pressure, Yes. Cholesterol, No.

"Less is more" is one of my mantras. So is "anything worth doing is worth overdoing." I've spent much of my life bouncing back and forth between these mantras.

Last year, "less is more" drove me to ditch both my blood pressure (BP) and cholesterol (statins) meds. In both cases, I seized upon new recommendations from some medical authorities that the +75 elderly without coronary issues could stop taking these medications.

During the past month, I've talked with more doctors than I'd normally see in a year. I wanted a new internist who was also a geriatrician. I've also been consulting a variety of doctors about my recent dual blood pressure problem -- spikes that carry stroke risk, and sudden drops that bring the risk of falling.  

December 17, 2014

A Parkinson's Encyclopedia: News, Symptoms, Treatments, Diagnosis, Biochemistry, Causes, Prevalence, People with, Books, Organizations, etc.

My online rambles brought me to a website that includes everything you always wanted to know about PD but were afraid to ask.
For instance, who knew that the Amish in the American northeast have the second highest incidence of PD in the world, after rural illiterate Egyptians along the Nile River? Or that Albanians have the highest per capita incidence of PD, and Ethiopians the lowest? Or that country dwellers, redheads, welders and Caucasians all carry clearly increased risk of developing the disease?

The are also synopses -- with links to detail -- about PD symptoms, treatments, prevalence, diagnosis, causes (biochemical, toxic, genetic), and history. There's also a list of famous people with PD, strange facts about the disease, and lists of PD books and organizations.

December 16, 2014

Parkinson's Disease and Enhanced Creativity

A recent story from the Parkinson’s Disease Foundation has this headline: "Dopaminergic Therapy Spurs Creativity in People with Parkinson's Disease." The standard treatment for Parkinson's is levodopa, which boosts brain levels of the neurotransmitter dopamine, the depletion of which causes the symptoms of the disease.

The news comes from Tel Aviv University in Israel, where researchers conducted creativity analyses on 27 people with Parkinson’s taking dopamine, and a control group of 27 healthy individuals not taking dopamine therapy – matched with the first group by age and education.

"It began with my observation that Parkinson's patients have a special interest in art and have creative hobbies incompatible with their physical limitations," said Rivka Inzelberg, Tel Aviv University professor and study leader.

Not a New Connection
Inzelberg’s observations weren’t new. Through the years, anecdotal evidence has accumulated about Parkinsonians on dopamine therapy suddenly developing sudden bursts of creativity, like writing poetry.

But a key question has lingered about the dopamine-creativity connection. Is the new inventiveness a direct result of higher dopamine levels in the brain? Or is it an offshoot of the impulse control disorders (ICDs) frequently linked to PD medication, especially dopamine agonists? Those aberrant ICDs among Parkinsonians manifest most often as hypersexuality and gambling compulsions.

December 12, 2014

Reflections on the Five-Year Age Difference Between My Brother and Me

A few weeks ago when Buffalo was hit by a storm that dropped almost four feet of snow on the city, I called my brother Roger who still lives in our hometown of Ithaca, NY. I wanted to know how he was faring in the blizzard, forgetting that what hits Buffalo is often isolated "lake effect" snow. Cleveland, Buffalo, Niagara Falls, and other cities on the shores of the Great Lakes can be socked with massive snowfalls, while just a few miles away there is no snow at all.

That was the case this time. It hadn't snowed in Ithaca, but I was glad I called. I love my brother, but neither of us is very good at keeping in touch, by email or telephone. We had a nice chat when I called this time.

Roger is five years my junior. Carol, our deceased sister, was a year and a half younger than Roger. The three of us grew up in a rather small three-bedroom half-house. The Slatterly family owned the building and lived in the left side of the house. The Schappis rented the other half on the right.

Here's a photo taken on a visit to Ithaca recently:

215 (or was it 217?) Prospect St.
Chatting with Roger on the phone, I was reminded that the five-year age gap between us was a big deal for the first 20 years or so. Then that difference faded into insignificance. Now, it's becoming significant again.

December 11, 2014

Pfizer Offers Settlement to Parkinsonians Who Developed Sex and Gambling Compulsions

Earlier this week, Pfizer Australia confirmed offering a settlement to 150 people who claim to have developed addictions – especially to gambling and sex – after taking Cabaser (generic cabergoline), a drug for Parkinson’s disease (PD). 

Those individuals – who brought their class action suit in 2008 -- say they were not warned about the possible addictive side effects, for years a connection well-known in the medical literature. The Australian federal court is scheduled to rule on the case next year.

Patients said they’d never had compulsive issues before taking the drug, which is designed to enhance the availability of dopamine, sometimes thought of as a “feel-good” agent in the brain. An excess of dopamine is associated with risk-taking behavior.

Some of the people involved in the suit claim they became gambling addicts and lost hundreds of thousands of dollars after taking the drug. Others developed compulsive sexual or shopping activities. The unusual behaviors typically ceased after patients stopped taking the drug. Of course, discontinuing the drug brought a return of PD’s troubling symptoms... a difficult cycle.

For Years, an Acknowledged Link 
Drug companies and doctors have known for over a decade about the causative link between PD drugs and compulsive behaviors. Interestingly, in 2005 the Parkinson’s Disease Foundation (PDF) posted an article online -- "Gambling, Sex, and…Parkinson's Disease?" -- that suggested gambling and sexual addictions might even be symptoms of the disease itself, not simply a consequence of medications. The PDF also noted that PD meds could exacerbate the problems. Here’s how that article began:
Add impulse-control disorders such as pathological gambling and hypersexuality to the list of possible non-motor problems that can occur in individuals with Parkinson's disease (PD). Recent studies suggest that seriously disabling impulsive behaviors occur in three to five percent of PD patients, affecting individuals at all stages of the disease. The exact prevalence of such disturbances in PD is not entirely clear since the behaviors are often performed in secret, or because the association with PD seems improbable and is therefore never reported at doctor visits.

To further explore the connection between the PD drugs and these compulsive behaviors, researchers at the Institute for Safe Medication Practices in Alexandria, Virginia, analyzed 2.7 million serious drug side effects reported between 2003 and 2012 in the U.S. and 21 other countries. That's an impressive sample.

December 10, 2014

Regular Stress for Caregivers + Holiday Anxieties = Potential Disaster

My internet explorations recently led me to the Minding Our Elders blog by Carol Bradley Bursack, a writer who also contributes to the online journal HealthCentral.

The particular piece I found concerned caregiving – a role that fate has spared me. My mother died of a heart attack at age 73. My father died at age 83, reading a book in a backyard lawn chair after playing a round of golf.  Over the years, I've often commented when talking with friends about the final exit, that it would be great to leave the way my father did, but perhaps a few years later than 83. Well, I got my wish as far as age goes, but I don't have a lawn or a lawn chair. I'll settle for the rocking chair on my back porch, overlooking the garden.

The fact that I’ve never had to assume the role of caregiver to a parent doesn’t mean my nearest and dearest will travel that same path. Yes, I’m feeling pretty good for an 85-year-old with Parkinson’s and prostate cancer… and a few other issues. I hope, one way or another, to spare my families the anguish of dealing with a demented father.

From comments and emails I’ve received, I know there are caregivers among the readers here. This past year I have also served as a guest blogger for Aging Care, a website designed to connect and support caregivers.

I also know that caregiving is hugely stressful, a constant challenge exacerbated by the normal anxieties we all feel at holiday time.

So, I offer this piece from Carol especially to them… and to all the others who may eventually find themselves in caregiving situations. Many of Carol's observations below might also have use for anyone, anytime.

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Acceptance of Change Important in Alzheimer's Caregiving
My dad went into surgery with a smile and hope. He came out with severe dementia. Something unexplainable at the time had happened and Dad became a statistic - one of those "poor outcomes" we hear about. My head knew this tragedy was permanent, but my heart wanted my "real" dad back.

December 9, 2014

Doctor-Patient Communication and the New Technology

In the good (?) old days, the doctor I saw most frequently was my internist. I saw him most often for my physicals. (Today many authorities question the need for and cost of those physicals.) We'd spend a relaxed half hour chatting in his comfortable office before I went next door to his equally comfortable examining room. There, he'd perform a general checkup and send me off for the blood work, EKG, and other tests.

Today, my internist has shifted to a concierge practice. I'd have to pay a $1,500 annual membership fee -- in additional to all the other regular costs -- to continue this pleasant arrangement. For this and other reasons, I ended our relationship.

Now, I usually find myself talking with a doctor in an office cubicle. No desk. Just a stand for the ever-present laptop. We're together maybe 15 minutes, and there's little idle chatter.

Electronic devices are everywhere in my health care these days. I was reminded of this reality during the past weeks, as I hired a new healthcare team. I was struck by the variety of positions these doctors took toward the use of email.

Email and Texting
I'm comfortable with using email and actually prefer it to talking on the phone. And either of those communication types seems better to me than being forced to make office visits when an information exchange is really all that's required.

December 5, 2014

News Alert: Schappi Steps Down as CEO for His Medical Care, Becomes Chairman of the Board

Since I started this blog over five years ago, I’ve used the imagery of being the CEO of my healthcare to indicate my intent to be actively involved in researching  and managing my health. Recent developments have convinced me that it’s time to give up this active involvement.

In the corporate world, when the CEO steps down, s/he often remains involved as chairman of the board of directors, the team that sets the company's goals and directions. That's the job I want -- board chairman.

Many Factors Drove this Decision
  • I now have in place the two key healthcare professionals I need to manage my healthcare – the leader/internist (a geriatrician) and the neurologist who addresses the issues of an 85-year-old Parkinsonian. I have complete confidence in these two doctors, both of whom signed on just this month.
  • My earlier, more active role as CEO was doing more harm than good. After my PD diagnosis, I began regularly using the OTC supplement 5-HTP to address the three major non-motor symptoms of my disease: depression, insomnia, and constipation. I had used 5-HTP occasionally in the past with good results. This encouraged me to belive that at times I could, on my own, devise helpful treatments. But, as usual, I overdid this in a big way.
  • I was spending too much time on the computer, researching and writing for this blog. As with 5-HTP, I got carried away, spending huge chunks of each day at the keyboard in my office. In retrospect, I see I should have devoted much more time exercising and pursuing other activities I enjoy. My life fell out of balance.
  • I meddled in other aspects of my healthcare, changing and tweaking my medications. It backfired, especially as the aging process rolled along.

December 4, 2014

Stroke Risk: Coffee Reduces, Soda Elevates

I’m a coffee drinker. I enjoy it in the morning and again around 5pm after my nap.

As a result, I was pleased to see the latest news that coffee actually reduces stroke risk. That particular issue has been a worry in recent months as I’ve struggled with occasional blood pressure spikes that have driven my systolic (upper) pressure above 200… and into stroke territory. On several occasions, those soaring numbers have also driven me right into the emergency room at my local Sibley Hospital for observation.

Conducted by researchers from Cleveland Clinic's Wellness Institute and Harvard University, this most recent study also showed that increased consumption of both sugar-sweetened and low-calorie sodas was associated with greater risk of stroke, the foundation of vascular dementia.

The news – published in the American Journal of Clinical Nutrition and reported in the article "In with the Coffee, Out with the Soda" in the November 25 issue of the online journal Alzheimer’s Weekly -- is especially worrisome for regular soda drinkers. In the past, we’ve seen evidence that sugary drinks were linked to a variety of health problems, including weight gain, diabetes, high blood pressure, high cholesterol, gout and coronary artery disease. Now we can add stroke to that scary line-up.

On the other hand, drinking coffee – both high-test and decaf – was associated with lower stroke risk in this latest study. 

December 3, 2014

Six Tips to Communicate Better with Your Doctor

Just a week ago, I wrote about my fear of dementia. Estimates suggest that 50-80% of us Parkinsonians end up with some type of cognitive impairment.

And this week, I’m embarking on a new venture with a brand new team of doctors – a new geriatrician (acting as quarterback), a new neurologist, and a new end-of-life therapist. I described my enthusiasm for this new arrangement in yesterday's post.

Worries about dementia… new healthcare team…. It’s little wonder that an article published on November 30 in the online journal Dementia Today got my attention. It’s title? "Alzheimer’s and Communicating with Your Doctor."

After I read it, I realized the title really should be “Communicating with Your Doctor,” an issue of universal interest. The topic has certainly been front and center for me during the past few weeks.

During a recent initial interview with a potential new neurologist, she won me over when she asked me to stop babbling about tangential issues and just answer her questions. She reminded me of my daughter and my late wife: both assertive, outspoken women… just the kind I like.

That’s my main problem – too much information (TMI), too little focus, and way too many words. I know I must do a better job condensing and clarifying my thoughts with the members of my new healthcare team. It’s the most important thing I can do to help them help me. That... and becoming a better listener.

The same thing – TMI – frustrated my brand new geriatrician recently when I tried to tell her everything in a single email. She politely urged me to limit my communications in future.

I’m reminded of the advice a 10th grade journalism teacher offered a friend of mine many years ago: DELETE TO STRENGTHEN. I’d do well to follow that advice, as an 85-year-old with new doctors.

Here's are the six suggestions from that article about communicating with your doctor. They made sense to me; maybe you'll feel the same way.

December 2, 2014

Late in the Fourth Quarter, My New Healthcare Team Takes the Field

As you might guess from the football-themed title above, I’m writing this post on Sunday afternoon. The Redskins are losing yet another game, so I turned off the TV and turned on my computer to work on the blog.

For the first time since I was diagnosed with Parkinson’s disease over five years ago, I’m dealing with a serious health issue. It has two separate parts.

1) The Lows
Several years ago, I began experiencing sudden drops in blood pressure (BP) that put me in danger of fainting and falling. At first, the few incidents occurred when I was out and about in Washington’s midday heat and humidity. But this year, these episodes became more frequent, happening without warning at any time of day. My doctors seemed mystified. My research indicated the problem arose from something called neurogenic orthostatic hypotension (NOH), a relatively rare condition that occurs only with patients who have Parkinson’s or similar diseases. Lucky me.

2) The Highs
At the same time, I’ve been experiencing occasional BP spikes which have pushed the upper (systolic) number as high as 200 -- stroke territory. Unlike the random BP drops associated with NOH, the spikes occur only in the “off periods,” when one levodopa pill -- the standard Parkinson’s treatment -- loses its effectiveness and before the next pill kicks in. It didn’t help that my former neurologist had prescribed two pills every three hours, creating eight possible "off" periods each day.

On any day, I might experience a BP drop with a systolic reading below 80, and later a spike above 200. Needless to say, I am not happy with this scary situation... or with the lack of progress by my doctors to fix it.

There have been two professionals involved: 1) my neurologist and 2) a nephrologist (kidney specialist) regarded as a BP expert. They did not collaborate and had little communication with each other. Not an ideal situation.

I've had other reasons, too, for establishing a new primary healthcare team. After a careful process, it's now in place. I’m happy with my choices, and I'm eager to begin working with these new docs.