Alzheimer's: My Fears Tempered by Reality

Anyone who visits this blog knows I have a huge fear of Alzheimer's disease (AD). It may well be an irrational fear, but I know most of my senior friends feel the same way. Some of my closest friends have had the thought I've often expressed: if I knew I had AD, I'd choose "self-deliverance" before putting my family and friends through the agony of the "long goodbye."

Fear of the Unknown Reduced
In spite of the worry, I haven't really known -- personally -- many families dealing with AD. But two different incidents last week brought the issue a little closer to home. Note: I've changed the names here. Note also that this is being written while holed up at home waiting to see what Sandy has in store for us, so I may ramble even more than usual.

We Should Listen to Jacqueline Griffin, RGIII's Mother!

Ever since my 1955 arrival in Washington, I've been a Redskins fan. I'm not alone. This town obsesses about its football team. Even when the Nats, our baseball team, made it into the playoffs this fall for the first time in eons, we paid more attention to the impending introduction of Redskins quarterback Robert Griffin III. We hoped he'd lead the team back to the glory days of the 1980s under coach Joe Gibbs.

Griffin has lived up to the hype. An article in yesterday's Washington Post asked if fans had finally found "The One" -- "an athlete so brilliant, so likable, so rooted over time in the region's culture [that] he would lift the entire community." If you don't live here, you may think the assessment sounds over the top. Not us.

As much as I enjoyed reading more about RGIII, what impressed me most was the feature's portrayal of his mother, Jacqueline Griffin.  

Washington, DC -- "Chocolate City"
Though no longer true, Washington, DC was for years the largest U.S. city with a majority African American population. Its nickname "Chocolate City" came from the 1975 hit song by Parliament. Soon after April's National Football League draft, Griffin's parents were watching ESPN at home in Copperas Cove, Texas. An announcer referred to Washington as "Chocolate City." Here's how Jacqueline Griffin reacted:

I said, "What does that mean?" My husband started laughing. We love our race, don't get me wrong. We wouldn't change it for the world. But I had no idea that Washington was called Chocolate City. I was totally oblivious to that. So was my son. We just don't talk about race in here.

Vermont for Fall Foliage? DC Does Just Fine.

We've had a glorious week in Washington. Warm days, cool nights, and colorful fall foliage at its peak. It's my favorite time of year here, and the reason I could never relocate to Florida or Arizona. I love our changes of season. Well, maybe not the change from spring to summer.

In contrast to the distance I'd have to travel to see the Vermont foliage or even the nearby Skyline Drive, these photos were taken on the 10 to 15 minute drive from my house to the local senior center or the adjacent metro stop.

Washington is a city of trees. Driving in the Vermont countryside or along Virginia's Skyline Drive, you wouldn't see trees growing around utility poles making pretty pictures like these:

Drug R & D: Less Money, Fewer Products

Like most of my contemporaries, I'd like to see lots of new pharmaceuticals that might treat my afflictions... and I want to see them soon. But research and development (R&D) seems to have stalled, with billions of dollars yielding only a trickle of drugs. Many of the new products are just attempts to improve existing drugs, and show few advantages, if any. Meanwhile, Big Pharma's patents on blockbuster drugs (like the No. 1 bestseller Lipitor) are expiring. 

Some blame excessive regulation by the Food and Drug Administration (FDA). Others complain that players in Big Pharma are too bureaucratic. Developing a new drug in America requires lots of money (over $1 billion) and time (over ten years). I can't wait that long.

So, what happens between the researcher's "ah-HA!" moment and the product's appearance on the shelf of my local CVS? The Michael J. Fox Foundation for Parkinson's Research produced this video explanation that's informative and fun:

Change of Seasons - Change of Rocking Chairs

So, THIS is what my life has come down to. The key summer-to-winter marker for me is the switch from the rocking chair on the back porch to the rocking chair in the living room. Jeez!

No matter the season, I spend several hours each day sitting in one rocking chair or the other.

The Summer Rocking Chair... and View
Here's the porch rocking chair. It's a beat-up old thing, but it's the most comfortable chair in the house. The pillow and cushion are kind to my back.

Remembering Terry McGovern on the Death of Her Father George

All of the media coverage about the death of Senator George McGovern (D-SD) at age 90 has me remembering, with tears, his daughter Terry. Toward the end of his Senate tenure, McGovern and his family lived a few blocks from me. He was defeated in the 1980 election.

I began my recovery from alcoholism in March 1978 and started attending meetings of Alcoholics Anonymous. In those early years of recovery, I became friends with Terry McGovern, the third of the five McGovern children. She also was working on her recovery and attending many of the same meetings. Terry became a close friend of my housemate, a young man who was beginning his own recovery from alcoholism. As a result, Terry was a frequent visitor.

(An aside: When I identify myself as an AA member, I realize I'm violating AA's 11th "tradition" which states: "Our public relations policy is based on attraction rather than promotion; we need always maintain personal anonymity at the level of press, radio and films." However, I've decided that in today's more open climate, it's silly for me to talk about "my support group" when everybody knows I'm talking about AA. I certainly respect the right of others to disagree with my departure from this tradition.)

I knew Terry as a smart, funny, generous, tender young woman who was fighting hard for her sobriety. After her father was defeated in 1980, her parents sold their house here and moved back to South Dakota. Terry relocated to Wisconsin where I believe she had a sister. We didn't stay in contact.

On December 12, 1994, Terry -- then age 45 -- left a detox center in Madison, Wisconsin. That night, she downed several shots of vodka in a bar, stumbled outside, passed out in the snowy parking lot, and froze to death. I was devastated when I heard the horrible news.

Skype Is Big at Our House. How About Yours?

Saturday Mornings at Our House

On most Saturday mornings here, it's Skype time. Nimesh and Bhawana get on their laptops, launch the Skype software, and make calls to their families. These aren't regular phone calls; with Skype, participants on the calls also SEE one another during the conversations.

Nimesh and Bhawana usually make the calls using a laptop on our dining room table. So, on my way to and from the kitchen for Saturday morning coffee, I often stop to say "Namaste" to whoever has shown up for the call. Sometimes it's Nimesh's mother and father in Kathmandu, or his sister Sona in Australia, or his brother Ritesh and his wife Salina in China. I've known Nimesh's family for 10 years, so we're all old friends.

A few Saturdays ago, Nimesh had the inspired idea of using both his and Bhawana's laptops, plus a full-length mirror positioned on the dining room table. With that creative arrangement, Nimesh engineered a three-way DC-Australia-China conversation. Here's a photo he took of the event:

                           

I couldn't resist joining in:

Coconut Oil vs. Curcumin: The Verdict

After months researching the claim that coconut can treat Alzheimer's disease, I posted a wrap-up report yesterday. Most of the hype comes from anecdotal reports, not careful science. Even the Alzheimer's Association concludes that the coconut oil assertion is bogus.

I've highlighted before the stark difference between the unsubstantiated hype for coconut oil and the proven -- but unheralded -- benefits of curcumin, the active ingredient in the Indian curry spice turmeric. For milliennia, curcumin has played a role in ayurvedic medicine, and in recent years nearly 5,000 peer-reviewed studies have confirmed its usefulness in treating many conditions. (The case for curcumin isn't without its weaknesses, too, which I explain below).

But in today's media-obsessed world, a slick video about Dr. Mary Newport's personal story of treating her husband's Alzheimer's has generated much more interest in coconut oil than thousands of scientific studies have done to promote the potential benefits of curcumin.

Alzheimer's and Coconut Oil: The Bottom Line

My blog's traffic statistics show that the most-visited post by far is my February 12. 2012 report on claims that coconut oil is a remedy for Alzheimer's. That post has been viewed three times more often than any other. My second "most popular" post involves a study about "Souvenaid, a nutrient cocktail that might boost memory for people with early Alzheimer's. In third place on my "Hit Parade" is the update I wrote in April about coconut oil and Alzheimer's.

Clearly, I'm not alone in worrying about dementia and Alzheimer's. Millions of people -- patients, families, caregivers -- are dealing with the disease. And millions more -- like me -- hope that dementia is not part of their future. It's natural for reports of new remedies to generate widespread interest and raise our hopes. Most of us would prefer an easy option (like taking a few spoonfuls of an unproven substance, like coconut oil) to a more challenging option (like exercising, eating wisely, and leading an active, engaged life, physically and mentally -- choices that science has shown -- time and time again -- to be good for us).

So, when we see claims for a quick and easy fix, we must ask: is the hype supported by clear scientific evidence?

Care: Less is Often More

I'm addicted to trying new ventures, so I have to remind myself of the dangers of overdoing it. Fortunately, this neophiliac usually -- not always -- has enough self-awareness to remember KISS ("Keep It Simple, Stupid").

After experimenting with acupuncture, reiki, injections, medical pain patches, and chiropractic, I've returned to simpler but harder remedies: diet and exercise. After overdoing supplements recommended by a nutritionist, I'm down to two: a vitamin D supplement recommended by my internist, and curcumin -- the most-studied, most-promising supplement.

I always need reminders of KISS, and I found one in yesterday's Washington Post “Consumer Reports Insights” article titled “Too much care can do you ill.” Here are just a few of the key points:

• 46% of primary care doctors in America think their patients receive too much care. Only 6% say “too little.” 
• Doctors are driven by financial reward and malpractice threat to over-prescribe tests, medicines, and therapies. 
• The more doctors and specialists you see, the greater the risk of complication. Adverse reactions from various drugs -- prescribed by different physicians who do not collaborate on a patient’s care -- is just one common example. Patients often fail to tell one doctor what another doctor has prescribed for them. 
• Tests often signal false alarms which in turn lead to more tests, often of increasing invasiveness and danger. 
• The Journal of the American Medical Association (JAMA) estimates that overtreatment of Americans in 2011 created between $158-$226 BILLION in wasteful spending. JAMA put the waste that same year created by the failure to coordinate care at between $25-$45 BILLION. 

Two Sleeps Each Night May Be Better Than One

I've often mentioned that my favorite part of day now is the time I spend "meditating" around 5am. Only part of that time is spent in traditional breathing-in, breathing-out meditation. I stretch and do muscle tensing-and-relaxing exercises, while seated. I often just let my thoughts wander. This early-morning time is both relaxing and idea-generating. And I have no trouble going back to sleep after this break.

Now, thanks to a recent article by David Randall in the New York Times, I find I've accidentally reverted to what some regard as a normal, natural split-sleep cycle. For many years, we've been led to believe that the best sleep was a full, uninterrupted eight hours.

In the Times article, Virginia Tech history professor A. Rodger Ekirch said he found references to "split sleep" when he began studying sleep. A character in the Canterbury Tales, for example, decides to go back to sleep after her "firste sleep." A doctor in England wrote that the time between the "first sleep" and the "second sleep" was the best time for study and reflection.

Stem Cells: the Promise, the Cost, the Future

I like seeing the latest news about stem cell research. The amazing technology certainly won’t extend my own 83-year-old life beyond its estimated 90 years, but who knows what impact the science may hold for my kids, grandchildren, and great grandkids.

There’s lots to love about the idea of curing, not just treating, heart disease, Alzheimer’s, HIV/AIDS, diabetes, cancer, Parkinson’s, ALS, macular degeneration – and other conditions, like spinal injuries – without drugs or complicated surgeries, using only our own genetic material. It strikes me as the most elemental – and at the same time the most extraordinarily complex – medicine ever.

The great promise for stem cell therapy hit the headlines again last month when ABC’s morning TV personality Robin Roberts received a bone marrow transplant to treat MDS, a condition that affects production of blood cells. In a quick, five-minute procedure, Robin received millions of stem cells from her sister through a syringe. We should know soon if these new cells – guided by their own genetic coding -- properly found their way into Robin’s bone marrow and have begun to function normally.

Even with the successes and awesome promise of stem cell therapies, there are reasons why we aren’t reading about regular breakthroughs in the New England Journal of Medicine. Even the Michael J. Fox Foundation – our country’s most public proponent of stem cell research -- announced earlier this year that it planned to diversify its funds into other areas of medical exploration… areas it thought might yield more immediate results.

More on "The Art of Aging"

I started this week with a description of the memorial celebration for my dear friend Lili Crane, who died at age 94 this past July. I began with this quote from Eleanor Roosevelt:

Beautiful young people are accidents of nature;

beautiful old people are works of art.

Lili was a priceless work of art.

I'll end the week with a post about John Lane's wonderful book, The Art of Ageing. He was a Brit born in 1930, a year after me. Painter, writer and educationalist, he was also chairman of the Dartington Hall Trust, founding director of Beaford Arts Centre, and instrumental in the creation of Schumacher College.

His delightfully honest little book is the best I've read about the realities and rewards of old age. It ends as Lane remembers Pierre Bonnard, an artist who spent the Second World War holed up at home in the south of France: 

His was a simple, unpretentious life, but towards its end one saddened by deep sorrow. The deaths of some of his closest friends, followed by that of his beloved wife, brought him loneliness and great sadness. He also suffered from the cold and shortage of petrol, food and coal.

Here's a photograph Cartier Bresson took of Bonnard in the winter of 1944. The artist wears a coat to save fuel:

I Have a 50-50 Shot at Living Seven More Years. So What?

Writing yesterday's post made me wonder if there was a Bell Curve on life expectancy for an 83-year-old male, i.e., me. A Google search failed to produce a nice graphic, but it led me to a handy-dandy Life Expectancy Calculator from the Social Security Administration. 

The calculator asks only for your sex and birth date. Then, with one click, you get your estimated life expectancy... in my case, for American males aged 83 and four months. The answer: the average male my age can expect to live 6.7 more years, taking him to 90.1.

With that information, I could easily visualize the Bell Curve on life expectancy for someone my age.

The median peak is the average of 6.7 additional years (taking someone like me to age 90.1). The 2.15% on the far left represents those people who will die within the next year or so, while the 2.15% on the far right show those who will live to be 100 or more.

So Where Am I on this Curve?

My two progressive diseases -- Parkinson's and prostate cancer -- argue in favor of putting me on the left side of the slope. But I've also taken better-than-average care of my health over the years, so I'm inclined to think that these two counter-balancing factors place me close to the midpoint.

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.

Lili Crane - 1918-2012: A Work of Art

Beautiful young people are accidents of nature;

beautiful old people are works of art.

--Eleanor Roosevelt

Lili Crane was Michelangelo's Mona Lisa, Picasso's Avignon Women, and Andy Warhol's Marilyn Monroe, all rolled into one priceless work of art. I was fortunate to have her as a dear friend for 57 years.  

She died in July here in Washington, DC, after celebrating her 94th birthday with her large clan in Cape May, New Jersey. The memorial celebration of her life was held last Saturday in the large back room at Busboys and Poets Restaurant. It was a perfect venue, as you'll see below.

To fully describe her life would take a 500-page biography by David McCullough. But the program for Saturday's tribute offered this summary:

Precocious granddaughter, union organizer, theater-goer, 
proud Jewess, loving wife, bridge lover, staunch Democrat, 

great Mom, civil rights protester, literacy tutor, rebellious daughter, 
friendly neighbor, loyal friend, generous aunt, supportive boss, 
doting Grandmother, poker player, opera buff, sage adviser, 

anti-war activist, proud Great-grandmother, fun co-worker and Muse.

To which I'd add -- a role model for many on how to age with grace, dignity, and zest.

Lili was a smart, feisty, funny, outspoken, no-nonsense woman. I love smart, feisty, funny, outspoken, no-nonsense women. After all, I married one and fathered another (and my granddaughters and great-granddaughters seem to have inherited the gene.) Lili was a classic in this mold. As you can see, I adored her:

Barack Obama: The Unhappy Warrior

The "Happy Warrior" was the nickname Franklin D. Roosevelt used to nominate Al Smith for president in 1924 and 1928, though it takes no great leap of imagination to apply it to Roosevelt as well... and to Teddy Roosevelt, Harry Truman, Ronald Reagan, and Bill Clinton.

In fact, you could attach the moniker to many effective politicians who truly enjoy the political wars. Joe Biden, Hubert Humphrey and "Tip" O'Neil spring to mind. But it's harder to think of many happy Republican politicians these days. Ronald Reagan and Teddy Roosevelt could never have been nominated by the angry, mean-spirited people who have taken over today's Republican Party.

Mitt Romney came across better in last week's presidential debate than he has so far in this interminable campaign for a key reason -- he tried to act like a "Happy Warrior." I don't believe it comes naturally to him. But then I never thought playing a Tea Party Republican came naturally to him, either.

Barack Obama, however, demonstrated his most serious flaw as a politician and a president on Wednesday night. When I was an enthusiastic (and generous) Obama supporter four years ago, I never would have thought someone so smart and articulate would end up becoming the worst president since Jimmy Carter when it comes to making effective use of the incumbent's "bully pulpit," as Happy Warrior Teddy Roosevelt called it. Obama has let the ultra-conservatives dominate the media with their promises NEVER to raise taxes -- promises they haven't begun to explain realistically, using simple arithmetic, as Clinton deftly pointed out at the convention in Charlotte. Obama has failed to rebut the Republicans' nutty idea.

Perhaps more importantly, President Obama doesn't like engaging in the hand-to-hand combat or the wheeling-and-dealing necessary to get legislation through Congress. He doesn't seem to like most politicians and, as a consequence, they don't like him.  He treasures his family and close friends, and that appears to be enough for him.

Before my liberal friends jump all over me, let me confirm: I know it's essential that Obama win this election. I just wish I could be a happier warrior on his behalf.

But now I need to get ready for a house-warming party my granddaughter Emily is throwing in Baltimore this afternoon. A happy event that I hope will be enhanced by a Redskins victory.

Thank God there's lots of life to love and enjoy apart from our unhappy politics. Tea Party warriors, take note and get a life..

My Doctors and Me: an Update. 3) Back Pain

This is the final installment in a three-part review of recent visits to my three most important specialists. The first dealt with the latest in the semi-annual checkups I've been having for over 16 years with my urologist, Dr. Nicolas Constantinople, to monitor my prostate cancer. The second was an interview with my neurologist, Dr. Laxman Bahroo, during my last Parkinson's checkup.

Yesterday, I met with Dr. Thomas Heckman at Sibley Hospital's Pain Center to discuss my 13-month struggle with lower back pain. I'm still not certain what has caused it, and -- to put it mildly -- I'm eager to get some relief.

The Story of My Aching Back
Like so many others, I've been bothered by lower back pain and sciatica for years. But since working with a great physical therapist, Tom Welsh, for about five years, I've been pain-free... as long as I follow the simple exercises he recommended I do every day.

Everything changed when I totaled my car in August last year. I was taken by ambulance to George Washington University Hospital, where I spent several days in the trauma unit and was given all sorts of X-rays and other tests. The doctors concluded I'd injured my upper spinal column and prescribed a neck brace.

The pain was concentrated at a particular spot on the lower left side of my back, so I questioned the neck damage diagnosis. When I got out of the hospital, I went to an orthopedist who took new X-rays that showed a fracture on the L-1 vertebra.

That specialist said it would take about four months for the fracture to heal, after which I should be pain free. I went back for a checkup after four months, and new X-rays showed the vertebra had healed. But the back pain continued to emanate from the same spot.

He re-examined the X-rays and found a heavy accumulation of arthritis in the bones where the pain was centered. As a result, the orthopedist now attributed the pain to arthritis.

From the beginning, the arthritis diagnosis just didn't seem right. I had no back pain before the crash. The pain that started with the car crash remained the same. The only change was the diagnosis. Hmmm.

My Doctors and Me: an Update. 2) Parkinson's Disease

This is part two in a series of updates about recent visits to my three most important specialists. Tuesday, it was my urologist, Dr. Nicholas Constantinople, about my prostate cancer. Today, it's my neurologist, Dr. Laxman Bahroo, about my Parkinson's.

Dr, Bahroo is one of the staff doctors in the Department of Neurology at MedStar Georgetown University Hospital. My regularly scheduled appointment with him was Tuesday morning, when we discussed several topics:

Parkinson's and Alzheimer's and Dementia
Since serious cognitive impairment is my biggest fear, dementia and AD came first on my discussion agenda. Dr. Bahroo said the data indicate that about half of all Parkinson's patients develop dementia five or more years after their diagnoses. But he emphasized that both PD and AD/dementia are highly idiosyncratic. He knows patients who show signs of dementia within a year or two of PD diagnosis, but he knows others diagnosed more than 15years ago who show no cognitive issues. (The moderator of my Parkinson's support group has lived with PD for 25 years and is as sharp as can be.)

Since I was diagnosed exactly four years ago, I asked Dr. Bahroo about my chances for developing dementia down the road. I was reassured when he said my prospects for forestalling it were good. He's seen no signs of cognitive impairment in any of my checkups. I'm scheduled for another memory test in January; he administers such an exam at least once a year.

This Blog Is Declaring a Presidential Debate Holiday

It's 5 a.m. I just finished my morning meditation and decided to declare today a blog holiday. I have a post ready to publish (part two of the three-part "My Doctors and Me" series), but I'm saving it for tomorrow. I want a blog-free evening tonight, so I can watch the debate and hear the pundits babble.

My Doctors and Me: an Update. 1) Prostate Cancer

Over the past few weeks, I've had several regular checkups:

• 1) with my urologist about my prostate cancer, 
• 2) with my neurologist about my Parkinson's, and 
• 3) with my doctor at Sibley Hospital's Pain Center about my back pain. 

As a result, I plan to write about these three areas over the next few days. Today: an update on my prostate cancer.

Prostate Cancer History
I learned about my prostate cancer in 1994. After reviewing options with my urologist (Dr. Nicholas Constantinople), I chose surgery. I had the prostatectomy at Sibley in early January, 1995. (I celebrated my 65th birthday in 1994 and retired after 40 years from BNA on December 31, 1964. So, the operation was my first use of Medicare.)

Post-operatve PSA tests indicated that some cancer cells remained. Fortunately, prostate cancer usually grows slowly, which proved true in my case. Since 1995, I've checked in with Dr. Constantinople every six months for both the "finger" and the PSA tests. That PSA reading increased slowly, from near zero in March, 1995, to over 4 in March, 2011.

Suddenly and surprisingly, the September, 2011 number spiked to 9.4! Urologists become concerned about a patient's prostate cancer when PSA readings double over the course of a year or two. Mine had more than doubled in just six months!

Dr. Constantinople didn't share my sense of panic. I was ready to hear him recommend hormone therapy or some other aggressive treatment. Instead he counseled, "Let's wait and see what the number is at your regular visit next March."

I was very relieved when the PSA test result this past March came in at 6.0. After these odd variations, I was anxious to see what my September visit would show.

My Future Travels: Some Thoughts

In my last post, I reviewed my recent travel fitness. As my Parkinson's disease progresses, I won't be able to maintain the independent, do-it-myself variety of travel I've always preferred, particularly now that lower back pain is part of the mix.

I was wondering what's in store for me down the road when I picked up the The Art of Ageing by John Lane. It's a delightful, warm, inspiring little book by a Brit my age who seems to have shared my lifelong love of travel. Here's how he sees it now:

Years ago I took delight in traveling. There was my discovery of India, from which I have yet to recover; and the old, the traditional Japan, hardly less stimulating. In different years, I have traveled to Russia, Lithuania, Thailand, Morocco, Cambodia, New Zealand, Sweden, Australia, and the United States. I now find the contemplation of a few yards of autumnal hedgerow to be enough....

I am relieved to discover that although some facilities are closing down (packing up is probably the better description) other things -- inner things -- are quietly taking their place.  My relationship with the world is shifting from "outer" to "inner" concerns. Joy, silence, stillness and contemplation are becoming more important; making, doing, and rushing around becoming much less so.