July 31, 2015

Aging in Place: Solitary Confinement for Some Elder Orphans?

"Elder orphans" is the phrase du jour about aging. It describes seniors who are single or widowed; they have no children, at least in the area, and no support system. And they find themselves alone with no one to help care for them should they need it.

This group of “orphans” will increase sharply as baby boomers age, and as average life expectancy in America continues to stretch toward 80 and beyond.

Like most seniors, I want to “age in place” – a frequent topic on this blog. In the last two posts, I explored the prospects for the rest of my life. Will I be able to remain at home, or will circumstances force me to move into a senior residence?
My musings reflect my own wish to age in place, a desirable goal... for me. But many elder orphans -- and their families -- surely see things differently.

Independence or Imprisonment?
Aging in place can be dangerous, especially for vulnerable elder orphans. The risks they face are detailed in a case study by Maria Torroella Carney, chief of geriatric and palliative medicine at the North Shore–LIJ Health System

July 30, 2015

Where Should I Live in My Final Years? Option Two: Age in Place

Most seniors would prefer to age in place -- that is, remain in their own homes as long as possible. In fact, 90 percent of adults 65+ report that's just what they'd prefer.

Aging in place has been -- and will remain -- my choice for as long as possible. But the situation for an 86-year-old man with Parkinson's could suddenly change. If I fell and sustained serious injuries, I could require assisted living care at a senior residence tomorrow.

Here is the place where I'm aging... and have been aging since the fall of 1965. Maybe I should start planning a 50th anniversary party.

5023 Eskridge
Beloved backyard
Old Rocking Chair's Got Me
I spend as much time as possible sitting in the rocking chair on my screened-in back porch looking out on this scene. But I've remained inside for nearly a week, as Washington's heat and humidity have been especially bad. The older I get, the more the humidity wipes me out.

My Housemates Are My Second Family
I've often discussed the role serendipity has played in my life. In 2001, as I planned my first visit to India, my mountain-climbing son said, "If you're going to India, you really should go to Nepal, too." Since then, I've made a dozen trips to Nepal, and now several Nepali families living here in the Washington area are treasured friends.

July 29, 2015

Where Should I Live in My Final Years? Option One: Move to a Senior Residence

When I was first diagnosed with Parkinson's six years ago, I experienced an unusual side effect -- temporary insanity. I became convinced I needed to sell the house I love and move out of the neighborhood I love and into a senior residence. I shudder every time I think about how close I came to doing just that.

Late last year, I had a recurrence of my Parkinsonian insanity… at least I hope it proves to be insanity. I became convinced that 2015 was likely to be my last year on earth. That notion was likely a side effect of the struggle I was having with blood pressure (BP) spikes that drove my systolic (top) numbers above 180… occasionally above 200 -- definitely stroke and heart attack territory.

The BP struggle that continued through the first half of this year is now resolved. Click here for the first in a series of posts about this positive turn around.

The idea that I might be around in 2016 and beyond was further bolstered when my neurologist remarked during a recent consultation that the rate at which one's Parkinson's progresses at the outset is unlikely to change. My disease has been progressing relatively slowly.

So, I'm looking at my future through new rose-colored glasses. As a result, I’m taking a fresh look at what is probably the number one question for seniors like me who are still hanging on: Should I move into a senior residence or should I age in place?

I know what my answer is for today: age in place. But I know my situation could change. A sudden fall could send me quickly into a senior residence – the option we’ll consider today.

Choosing an Assisted Living Residence
The Washington metropolitan area has dozens of senior residences. Most of them are designed so residents can choose independent living and later move into assisted living. Some places also add a nursing care option or a facility for people with dementia.

Here are some examples of the choices available in the Washington area that appeal to me.

July 28, 2015

STIMband: Will a Simple Headband Reduce Parkinson's Symptoms with Controlled Electrical Impulses?

Will people with Parkinson’s (PWPs) soon have access to a headband-like contraption that administers carefully controlled electrical impulses to the brain, thereby relieving some of the disease’s most common motor symptoms?

A team of five graduate students from Johns Hopkins University think the answer is YES, in the form of a product called STIMband.

For six years, this blog has included many commentaries about treating Parkinson’s disease (PD).
  • Many posts concern the attempts of science to replace the dopamine – a key neurotransmitter – that the disease destroys, thereby compromising the brain’s ability to direct the body’s actions.
  • Many posts concern new drugs being developed to target just-identified biomarkers of PD, like a specific type of protein or plaque. 
  • Many posts pass along (I learned early in my blog experience NOT to recommend anything) information about over-the-counter (OTC) products that have worked for me… like the serotonin booster 5-HTP, which has been a great help in treating (or keeping at bay) common non-motor symptoms of PD, like depression, insomnia, and constipation.
  • Many posts concern information about botanical products that have been proven to support health generally and to reduce the risk of certain diseases. A prime example is curcumin, the active ingredient in the Indian curry spice turmeric. It has been used medicinally for millennia and subjected to rigorous testing. Based on the science, I’m a believer.
  • Some posts concern the importance of exercise in mitigating PD’s symptoms. There are many different kinds of exercise that reportedly bring great benefits -- like dancing, singing, boxing, and tai chi. If it involves movement, it’s probably been shown to be helpful.
  • A few posts have covered the latest news about invasive surgical procedures, like deep brain stimulation (DBS). This surgery is considered a “last resort” for people with advanced PD who no longer are benefiting from standard therapies.

There are risks involved with all these treatments. Drugs often bring negative, unintended consequences, like the bodily jerks and tics of dyskinesia. OTC products are frequently mislabeled or can cause serious adverse interactions with other drugs or supplements or just do not provide the overhyped benefit. DBS is serious surgery with risks of infection and stroke. Even exercise – the “treatment” that seems to make everyone’s “do THIS” list – can cause falls and injuries.

Back to those Hopkins Students and their STIMband
Guided by Yousef Salimpour, a research associate neuroscientist at Hopkins, the students created a comfortable, snug, easy-to-use headband – it goes on like a baseball cap -- that positions electrodes over the part of the brain that controls movement. In the comfort of home, the PWP presses a large red button, easy for a shaky hand to operate. The device then delivers a pre-programmed amount of painless electrical impulses -- for about twenty minutes a day -- at the intensity prescribed by the PWP’s doctor.

July 24, 2015

Consultation with My Neurologist: From Rytary to the Rest of My Life

If you have Parkinson's disease, you typically see your neurologist every three or four months for a checkup to see how you're doing, or -- more likely -- how you're deteriorating. After most of these meetings, I usually grouse to family and friends about not being able to have a nice chat about things on my agenda, since the neurologist is spending all his time entering data into his computer during our brief time together.

I recently mentioned my frustration about this issue, and the neurologist suggested, "Why don't you just schedule a separate consultation meeting?"

What a brilliant idea! I did, and we met last week.

I brought a list of questions and got answers to them all in less than half an hour. There was no chatter about families, vacations or books, like there was for years with a former internist. But I got good information, which I'll share here.

Rytary: Off to a Slow Start
Rytary was approved by the FDA in January as a new form of levodopa, the gold standard medication for Parkinson's disease. I'd heard that it can provide longer-lasting benefits and less "off" time than existing levodopa meds, both regular and extended release (ER).

July 23, 2015

Lincoln's Cottage: A Perfect Setting for Allen Weinstein's Memorial Service

On Wednesday evening, I attended a lovely memorial service for my pal Allen Weinstein. It was held on this lawn in front of Lincoln's Cottage.

Lincoln's Cottage: the Summer White House
I've lived in Washington since 1955 and thought I'd seen all its major historic sites. But I'd never been to Lincoln's cottage and only vaguely remember hearing about it.

The Cottage is on the grounds of the Soldiers' Home, about four miles north of the White House. During the Civil War, President Lincoln lived there from June into November to escape the city and the distractions of life at the White House. From my visit Wednesday night, the heat and humidity there seemed about the same as anyplace else in this swamp we call the nation's capital.

Lincoln journeyed on horseback between White House and Cottage, morning and night, usually unguarded. Today, the president travels by car in a heavily armored Cadillac. But he travels mostly by air. I can tell when he's flying to Camp David because I hear and see three helicopters in a row flying noisily over my back porch. (Obama, thankfully, uses Camp David much less than his predecessors.)

At the Cottage, Lincoln made several momentous decisions that defined his presidency. While there, he formulated his thoughts on freedom that became the Emancipation Proclamation... and mourned the death from typhoid of his 12-year-old son Willie. In July 1864, he and his family were evacuated from the grounds when nearby Fort Stevens came under Confederate attack.

In July 2000, the Cottage was designated a national monument and opened to the public. I've made a note to take one of the tours in the fall.

About Allen Weinstein 
The Cottage was perfect for Allen's memorial service. He was a history professor, author of history books, and our National Archivist until he retired in 2008 because of his Parkinson's disease.

July 22, 2015

News from the Alzheimer’s Conference in DC: A New Plaque-Busting Drug for Alzheimer’s and Parkinson’s?

There have been several interesting announcements at the Alzheimer’s Association International Conference (AAIC) taking place here in Washington, DC this week.
  • Alzheimer’s disease (AD) advances twice as fast in women than it does in men. That’s especially important since about two thirds of all Americans with AD are women. In fact, that speed of development may partly explain the gender imbalance.
  • A simple saliva test could identify AD much sooner. That’s important because earlier diagnoses are key to treating this disease, which inflicts so much irreversible damage for many years before it is even identified.
  • A new drug under development targets and removes various disease-causing plaques in the brain. The source of that new drug? A virus found in sewage. Sounds a bit like Alexander Fleming’s unlikely and serendipitous discovery of penicillin nearly a century ago.
This promising new plaque-busting drug is the focus of today’s post.

Plaque Attack
When proteins misfold in the brain, they eventually form plaques, which become the accumulating clumps of gunk responsible for several different neurological diseases, including AD, PD, and Creutzfeldt-Jakob disease.

The new drug – NPT088 for now – has already proved successful in breaking up plaques in mice affected with AD or PD. Memory and cognitive improvements in those animals were dramatic enough that developer NeuroPhage Pharmaceuticals intends to apply soon for permission to begin clinical trials on people, which could start in 2016.

What’s really different about NPT088? It seems to attack and destroy a variety of different plaque types linked to human neurological diseases… and not just the individual proteins that build up to create the plaques which eventually disable normal brain function. So far, potential therapies have targeted proteins as bio-markers, not plaques.

I’ve written often on this blog about the different plaques associated with the two diseases most on my mind: the Parkinson’s I have and the Alzheimer’s I fear. The graphic here – “Proteins Gone Rogue” -- shows which misfolded proteins are responsible for creating the plaques associated with the most common neurological diseases.

July 21, 2015

Want a Healthier City? Plant More Trees

Here's a new study I love! Conducted by researchers at the University of Chicago, it concludes that urban neighborhoods filled with trees are better for people's health.

An increase of 11 trees per city block was found to be "comparable to an increase in annual personal income of $20,000... or being 1.4 years younger."

The researchers had access to a trove of data about trees in the city of Toronto. They had the health records of more than 30,000 Toronto residents. That information included lots of "official" data -- rates of cancer, diabetes, mental illness, etc. -- as well as residents' perceptions of their own well-being.

Controlling for income, age and education, the research team was able to draw an interesting conclusion: that trees on the street had a clear impact on residents' health. While other trees also had an impact, "we found stronger effects from the trees on the street," a lead researcher said.

We've known for a long time that trees improve urban air quality by pulling ozone, particulates and other pollutants out of the air, into their leaves, and away from our lungs. The researchers suggested other possibilities, too. Simply being amidst greenery could improve mental health, which brings physical benefits. Perhaps people are more inclined to exercise -- to jog, walk, ride a bike -- in more pleasant, green environments.

July 17, 2015

Using My Blood Pressure Monitor to Help Manage My Levodopa . . . and More?

Several days ago, I wrote about recent health care experiments I've conducted. Well, here I go again.

This time, I'm trying to determine if I can use my regular blood pressure (BP) readings to help guide the timing of the levodopa medication I take for my Parkinson's (PD). The longer we take levodopa, the harder it typically becomes to get dosage and timing just right.

Already I'm finding that these readings, and particularly the brief notes accompanying them, may prove helpful in monitoring and managing other aspects of my health care as well

July 16, 2015

Please Join Me on a Garden Tour

But you'd better bring an umbrella. We've had 150 percent of our normal rainfall so far this year, so the garden is exceptionally green and lush.

The tour begins in my side yard, once shaded by a large magnolia and a double cherry tree, until the June 2012 derecho brought them both down. It's now a butterfly garden... and jungle.

Down the steps, you're in the backyard. That space was once entirely shaded by a huge, handsome hackberry tree. It's gone now, too; I may have over-watered it.

To recover from that loss, I hired the wonderful Janet Gaskins and her Landscape Design team to transform the typical grass lawn into what you see now. Over the years, we've added lots of plantings. But the basic design -- which I love -- is hers.

We also replaced the grass in the front yard with plantings. I sold the lawnmower to a neighbor about 20 years ago.

The whole setup is surprisingly low maintenance. I used to enjoy doing most of the gardening myself. These days, I mostly make suggestions to Joey, my part-time chauffeur and gardener.

July 15, 2015

Experimenting with Parkinson's Treatments: What Might Work for YOU?

In yesterday’s post, I described some recent “experiments” I’ve conducted – on my own, and not always with doctors’ approvals – to better manage my health and my Parkinson’s disease (PD).

I successfully ditched blood pressure medication, convinced that my own pressure irregularities were caused by something other than your standard, garden variety hypertension. I’ve learned that an extended release form of levodopa-carbidopa treats my PD better than the “regular” pills I’d taken for years. I learned I needed only about a third of the levodopa my previous neurologist prescribed. I’ve experimented – extensively -- with dosing and timing. I even figured I might use my own blood pressure readings to help determine when to take the next pill.

Dosage and timing are major challenges for people with PD. I see my neurologist every three months and he suggests what doses to take and when. But I know that I can experience daily and even hourly variances in my need for the meds. I'll talk more about that later..

The New Paradigm
I wrapped up my post yesterday with the acknowledgement that we are moving  -- that we must move – away from the old “one-size-fits-all” model of healthcare… the prototype in place for centuriess… and toward a more personalized medicine. The new, emerging model puts to use information that science could never provide in the past – genetic coding, etc – and recognizes that every person has her own version of a disease, and that every patient reacts differently to medications.

(That last part – that people have individual, unique responses to treatments – hit me over the head several years ago when I realized that the serotonin booster 5-HTP didn’t work the same miracles for other people that it did for me. It was an important lesson to learn.)

Imagine my surprise this morning when I ran across a July 6 blog post by Josh Middledorf with the title “Can anything be done about Parkinson’s?” It starts like this:

July 14, 2015

Oh, What a Beautiful Morning! Or is it?

I've been on a roller coaster ride this past week, dealing with my health and my Parkinson's disease (PD). My experiences illustrate the risks and struggles of someone who chooses to play an active role in managing his own healthcare and medical treatment.

I woke up this morning at 6am, after going to bed very early last night. I felt great, the sun was up, and the humidity -- for a change -- was down.

Three hours later, after mismanaging my Parkinson's meds, I felt lousy, and the TV weatherman was calling for more rain. So much for my beautiful morning.

Last Friday, I experienced a weird PD-related setback... the worst I've had. All morning, I felt weak and shaky. By noon, I didn't have the strength -- or sense of dependable balance -- to get out of my chair.

Fortunately, my housemate Bhawana was at home. I called her, asked for my cane, and I managed to get upstairs to my bedroom. I was out of it for the rest of the day. But I did manage to work with my insurance company and CVS to secure the medication I needed.

July 10, 2015

From Gay AIDS to Gay Marriage

I took this photo in October, 1996. For the last time, the entire AIDS Memorial Quilt spread across the vast Washington Mall. The man in the foreground is Frank Kameny, considered one of the most significant figures in the American gay rights movement. He also owned a house in the Palisades, my neighborhood in Washington, DC.

The quilt was a powerful visual reminder of the AIDS pandemic. More than 48,000 individual 3' x 6' panels -- most commemorating the life of someone who died of AIDS – – had been sewn together by friends, lovers, and family members.

In all the recent commentary on the remarkable increasing public acceptance of gay people, I've been surprised how seldom AIDS has been mentioned as a key factor in that dramatic turnaround.

July 9, 2015

How Theater and TV Boosted Public Acceptance of Gays

Theater and television have played key roles in the ever-growing acceptance of homosexuals. And most of the sharp turnaround in public perception has happened since the early 1990s.

Gay Mormons Have Helped
Two award-winning shows mark the beginning and end of this period. By a strange coincidence both portray gay Mormons.

'Angels in America: A Gay Fantasia

The first was Tony Kushner's Angels in America. Told in two parts over seven hours, this epic play about America in the age of AIDS offers sweeping arguments about American ethics and morals.

But it's also a very personal drama. A gay man deserts his lover when the lover contracts AIDS. That same man then seduces a married, deeply closeted Mormon who works in Roy Cohen's office.

July 8, 2015

Gay Marriages, Then and Now

The photo at left is one of the most famous of the 20th century. It was taken in New York City's Times Square by famed photographer Alfred Eisenstaedt on August 27, 1945 -- V-J Day, which marked the end of World War II. The image at right is a classic cartoon spoof from The New Yorker, suggesting where we are today.

Public opinion about homosexuality has shifted radically in the 70 years between these two images. Most of the change has come in the last 20 years.

My acceptance of my own homosexuality has followed a similar trajectory.

But last week's epic Supreme Court decision upholding the legality of gay marriages has certainly prompted unprecedented reflection on the topic.

In 1945, I graduated from high school. In 1955, I was kicked out of Cornell Law School after my second arrest occasioned by unlawful homosexual conduct while in an alcoholic blackout. In 1957, I married the woman I loved. In 1977, we separated as a result of my "coming out" as a gay man.

Gay Men and Traditional Marriages
My generation may be the last in which many gay men chose a traditional marriage. I didn't tie the knot just to add more camouflage to my hidden sexual orientation.

July 7, 2015

Patriotic Musical Celebrations: Washington's "A Capitol Fourth" and London's "Last Night of the Proms"

A Capitol Fourth -- Washington
This is the 35th year that PBS has aired the July 4 concert and fireworks. Back in my biking days, I'd often ride down to the concert on the lawn of the Capitol. Once the National Symphony Orchestra began the 1812 Overture, I'd hop on my bike and head for the other end of the mall to watch the fireworks, since I knew they'd start as that piece played.

I gave up biking when Parkinson's began to affect my balance. But I had given up biking to the concert earlier than that, since the security measures after 9/11 took the fun out of it.

I'm not a great Barry Manilow fan, but I enjoyed watching this year's show.

Last Night of the Proms – London
While I've enjoyed the Capitol Fourth concerts, they fade quickly from memory. Not so with the Last Night of the Proms, which I was fortunate enough to attend in 1987 thanks to my dear departed pal Richard Cooper. It was one of my most memorable experiences.

July 5, 2015

D.C.'s Palisades Fourth of July Parade -- We've Had a Gay/Lesbian Band for Decades!

I've lived in DC's Palisades neighborhood for over 50 years. As readers of this blog know, I love it. It's like living in a small hillside town. Yet it's just a 15-minute drive from here to the White House.

Every Fourth of July, we have a parade down MacArthur Boulevard, the Palisades' main street. Each year, I applaud as the HD Johnson van passes by. HD Johnson is my plumber. I'll bet no other city in the U.S. has a parade that includes the local plumber!

July 2, 2015

Rytary: Will My Insurance Cover It? Even If It Does, Will It Be Worth It?

Rytary is a new formulation of extended release (ER) carbidopa/levodopa. It differs from earlier ER meds because it contains special beads designed to dissolve at different rates in the stomach and intestines. Designed to provide longer-lasting benefit for those of us with Parkinson's disease, it was approved by the FDA in January.

My neurologist wrote me a prescription for rytary more than a week ago. But my CVS pharmacist said my insurance company wasn't covering it. Without coverage, the new drug would cost $978!

I'm covered by AARP MedicareRx Preferred, administered by UnitedHealthcare, the country's largest health insurance company.

My neurologist is on vacation, but should return by the end of next week. So I called UnitedHealthcare to learn how to secure coverage for Rytary. Here's what I discovered:

Formulary Exception For a New Drug
Rytary is now considered a "non-formulary" drug under my plan. To get that designation changed, we'd need a formulary exception. The insurance rep told me there were two ways to expedite such an exception.

July 1, 2015

My Pills and Me: Less Is More

Cleaning out my medicine cabinet

One of my big concerns these days is the overuse of pills -- supplements and prescribed meds -- by patients and doctors. "Less is more" is a favorite mantra whenever I write about medications.

Today we hear a rising chorus from healthcare reformers sounding the "less is more" theme for both medications and also medical treatments. Today, let's discuss the former; soon, we'll discuss the latter.

Dietary Supplements
Until a few years ago, my mantra was "the more, the better" when it came to pills.

The photo above was taken over two years ago when I tossed out my impressive stash of dietary supplements. 

I could no longer ignore the consensus of medical advice from my research and health newsletters. They agree that we get health benefits from all sorts of vitamins and minerals. But they also agree we're better off getting nutritional requirements from food, not pills. A supplement is useful only for people whose diets lack a specific nutrient.

Google "vitamins food or supplements" and you'll see the consensus -- food. For example, ConsumerLab.com poses the question: "Is it better to get vitamins from foods or supplements?"