December 20, 2013

Happy Holidays -- See You in 2014

This is the way the past year has been going here in the nation's capital:
                                

I'm looking forward to seeing these guys up close on my February cruise around South America:


But now I'm taking a two-week vacation from blogging. 

December 19, 2013

Helpful Tips for Critical End-of-Life Conversations

Only as her mother lay dying did Ellen Goodman realize she'd never had a real end-of-life conversation with her. By then, it was too late. Her mother was suffering from dementia.

The Pulitzer-Prize-winning columnist wrote:
The only conversation I had with my mother -- and this is often true of people -- is when she would see someone and say "If I'm ever like that, pull the plug." But there was no plug to pull.  
After all the years I'd written about these issues, I was still blindsided by the inevitable. 
The last thing my mom would have wanted was to force me into such bewildering, painful uncertainty about her life and death. I realized only after her death how much easier it would have all been if I heard her voice in my ear as these decisions had to be made. If only we had talked about it.
That was seven years ago. In 2010, Goodman and some colleagues -- with media, clergy, and medical professionals -- gathered to share stories of “good deaths” and “bad deaths” among their own loved ones. That exercise launched "The Conversation Project" to give families the tools to broach the difficult, emotional topic.

Gap Between What We Say We Want and What Actually Happens
The Conversation Project prompts us to think about having "The Conversation" by citing these findings:

December 18, 2013

"World Death Rate Holds Steady at 100 Percent"

In the past weeks, I've attended two memorial services for dear departed friends and joined the rest of the world in paying tribute to Nelson Mandela. And so I've wondered, how DO we deal with death and dying?

Let's consider these deaths:
  • Nelson Mandela: To be sure, he was a heroic, inspiring world leader. Still, the death of a seriously ill 95-year-old doesn't strike me as tragic, or even sad.
  • Vola Lawson: I knew and loved Vola -- former Alexandria city manager -- since 1956. She died of sudden cardiac arrest last Tuesday. I posted a remembrance on Friday and attended Vola's funeral on Monday. She was 79 and enjoyed a rich, full life. I cried when I heard the news of her death, and tears still well up when I think how much I'll miss her friendship. But I sense that friends who knew about our close friendship are surprised I'm not more grief-stricken.

December 17, 2013

Dissolvable Under-the-Tongue Apomorphine Strips to Resolve Freezing of Gait in Parkinsonians

A Canadian company -- Cynapsus Therapeutics-- is developing a thin, quick-dissolving strip for Parkinsonians who suffer freezing of gait (FOG). When they have a FOG episode, they’d simply put one of these strips under the tongue. The “rescue therapy” then takes effect within a minute and a half, according to the company’s product explanation.

Called APL-130177, the sublingual film delivers a quick dose of the FDA-approved drug apomorphine, currently available only in injectable form. This new delivery system – in final human trial stage – eliminates the pain, stress, injection site irritation, and considerable awkwardness that accompany the needle method.

It’s another piece of good news for PWPs, who have recently learned about the availability of a new ankle bracelet that senses the onset of FOG and delivers an audible cue to the wearer’s earpiece – a cue as simple as the word “walk.”

December 16, 2013

Two Christmas Toys To Fight Hypertension and Stress

My kids and I have agreed to stop exchanging Christmas presents. Hurrah!

So I decided to give myself two presents instead. With any luck, lower blood pressure and increased serenity will be the REAL gifts.

The December 2013 issue of the Mayo Clinic Health Letter included a report about portable, at-home medical devices that may help lower blood pressure. It featured two devices, with this caveat: some people might very well achieve the same results on their own without paying the $300 to $400 that each of these devices cost.

But I decided they'd make excellent Christmas gifts to me from my son and daughter.

Zona Plus -- A handgrip device
Gripping an object -- and holding the grip -- is a form of isometric exercise that may affect several body functions related to blood pressure. Such exercise appears to calm the fight-or-flight response and may allow blood to flow easier and with less pressure.

Zona Plus is a hand-held device that calibrates grip strength and guides you through two two-minute repetitions of continuous gripping on alternate hands. The instructions recommend doing the exercises five times a week.

The Mayo newsletter indicates that research on handgrip devices is limited, but evidence suggests regular use can result in a ten-point drop in both systolic and diastolic blood pressure. People with blood pressure at or above 180/110 should avoid isometric exercise until their bp is better controlled.

December 13, 2013

Vola Lawson: Happy Warrior, Great Friend



Vola Lawson
9/14/1934 - 12/10/2013

Vola, a treasured friend, died Tuesday night of cardiac arrest. I learned yesterday morning with the publication of her obituary in the Washington Post. We had one of our regular bridge games at my house last week, and we were scheduled for another next Tuesday. She almost always brought Willie, her beloved Jack Russell Terrier shown here in his favorite place: Vola's arms.

Vola and I met in 1956, when we had apartments in the same house in Georgetown. We became close friends, then kept in touch through our career-and-family years. In the past few years, we started seeing each other more often and rekindled the tight bond we'd enjoyed over half a century ago. I'm so glad we did.

December 12, 2013

New drugs -- "pharmacoperones" -- for Alzheimer's and Parkinson's?

Can a new drug that targets “misfolded” proteins cure neurodegenerative diseases -- like Alzheimer’s, Parkinson’s, and Huntington’s – as well as diabetes, cystic fibrosis, and inherited cataracts?

Scientists have known about misfolded proteins for years. Until recently, they assumed these misfolded proteins just didn’t work, accumulated, and caused disease.

Healthy protein molecules assume very precisely folded 3-D shapes. Mutations mess up those folds, and problems develop. The cell’s “early warning system” then moves the misfolded proteins to a different location within the cell. The misfolded protein isn’t destroyed in the move, only disabled.

Dr. P. Michael Conn and his team at Oregon Health & Science University have apparently developed a new type of drug – a pharmacoperone – that essentially rescues misfolded proteins, returning them to their original location and thus enabling them to resume their proper health-sustaining work inside cells.

December 11, 2013

What I Want for Me: Fewer Entitlements, More Taxes. It's Only Fair!

As I write, Congress is about to adopt a budget compromise that will avoid another government shutdown. But that action will only delay addressing the clash of generations. We're seeing a growing transfer of our nation's wealth from the increasingly disadvantaged young to the increasingly advantaged elderly. We're kicking this football down the field again. Some "progressive" Democrats in Congress are even proposing an increase in Social Security benefits. 

An 84-year-old lifelong liberal Democrat, I'm dismayed that many liberals insist on defending seniors' entitlements to the last dollar. It's a position that's politically expedient, but intellectually lazy. Even more stupid is the position of Republicans who vow never to increase taxes.

The Two Faces of Social Security and Medicare
Social Security was adopted because of the perception, accurate then, that the elderly were poorer and more vulnerable than everyone else. Though no longer valid, the view persists. And as senior power at the voting booth grows, politicians of all stripes fear touching Social Security and Medicare, the behemoths of federal spending.

December 10, 2013

NT219: New Promise for Treating Neurodegenerative Diseases?

Can a newly created compound that inhibits an element of aging really treat brain diseases like Alzheimer’s, Parkinson’s, and Huntington’s?

Scientists at the Hebrew University of Jerusalem, working with a new company that – no surprise – has already filed for a patent on the potentially profitable product, are betting, “Yes it can.”

Their findings were published last week in the journal Aging Cell ("A novel inhibitor of the insulin/IGF signaling pathway protects from age-onset, neurodegeneration-linked proteotoxicity"). The compound in question has a name: NT219. Its creators claim it impedes a particular aging process – without extending lifespan -- to protect the brain from neurodegenerative diseases.

Protein Build-ups in People Only as They Age
These brain diseases share several features: they seem to result from protein accumulations, and happen to people later in life. They don’t occur in much younger people, the way cancer does. So what is it exactly about the process of aging that makes people vulnerable?

December 9, 2013

Holiday Dinner Video Spoof and My Four Diet Basics



Love the spoof. I've done my share of fad dieting through the years. I've experimented with Atkins, low carb, vegan, and many others . . . looking for that quick and easy way to shed pounds. I've thought about starting a self-help group called "Five Pounds Overweight Anonymous" for the legions who go around saying "If I could just lose five pounds!" Trouble is: five pounds would no longer be enough for me.

At this stage in life, I've decided to relax and just follow a few generally accepted precepts for healthy eating. As someone who can still squeeze into the "moderately overweight" slot, I was delighted to post this report earlier this year:
The Mildly Overweight Live Longer! 
How about that? Researchers from the CDC and elsewhere pooled data from 97 studies from over a dozen countries, tracking nearly 3 million people (http://bit.ly/WhYBFf)
Here are some of the findings:
  • Overweight people had a 6 percent lower overall death rate than those of normal weight. (Data were adjusted for age, gender and smoking.)
  • For people over 65, the mortality benefit of carrying a few extra pounds was even better. 

December 6, 2013

And Now He Belongs to the Ages

Ritalin for Parkinson's? I'm Encouraged. But Will It Make Me Even Grouchier?

I saw a recent report that Ritalin, the drug used to treat ADD in children, might help Parkinsonians like me with balance problems and other PD symptoms. Searching the internet for more info, I found that Ritalin might improve fine motor skill by enhancing levodopa, the standard medicine used to treat Parkinson's.

Other studies indicated that the drug alleviated fatigue and helped with "freezing of gait," a common PD issue. Someone in my support group said he had used Ritalin and found it helpful.

Should I Take Ritalin?
I'm a strong believer that "less is more" when it comes to pills, prescribed or OTC. Every new pill increases the risk of bad interaction. I checked Ritalin against my current meds on Drugs.com and didn't see any red flags for potential adverse interactions.

December 5, 2013

Gloria Steinem: Immigration Reform as Solution to Critical Caregiver Shortage

Gloria Steinem, who received the Presidential Medal of Freedom two weeks ago, is now fighting for immigration reform. At first, it seems an odd cause for Steinem, best known as an activist for women.

Immigration Reform IS a Women's Issue
In an interview reported by the Washington Post, Steinem elaborated:
I want to correct the inaccurate image of immigration in the media. There is an idea that women's issues are over here and immigration reform is over there.
Three-quarters of undocumented workers are women and children. When the image in the media is potential terrorist or drug dealer or, at best, a male farm worker, it is an unrealistic portrayal of who immigrants really are.
We need to make sure that our news blogs and sources are more accurate about this imagery and what this nation needs as a workforce. There's an idea that high tech jobs, which culturally are still dominated by males, are more important than caregiving jobs, which culturally are still dominated by females. That is simply not true.
We live in a prosperous country and have a higher life expectancy and we need more caregiving workers. In the interest of accuracy and in supplying the expertise that this society really needs, I hope we can reflect reality in what we write into law.
Steinem expands on her theme in this video:

December 4, 2013

Parkinsonian Bum Arm = Shorter Blog Posts?

I hear a crescendo of voices shouting “Hooray!”

Parkinson’s Disease and My Right Arm
Most people -- including doctors -- recognize Parkinson's disease (PD) when they see the  tremor, which usually begins in one hand. But about 20 percent of us with PD don’t experience the tremor . . . an absence that often delays diagnosis, as it did in my case. That belated diagnosis four years ago came only after my kids, noticing that my right arm didn't "swing" naturally when I walked, urged me to see a neurologist.

Thanks to medication and exercise, I'm doing pretty well. But I see increasing signs of PD-related muscle stiffness and rigidity. The disease continues to target my right side, particularly my arm. A ligament tear three years ago weakened it, compounding the problem.

For the past couple of months, I've been frustrated by the many typos and other errors I'm making when writing on the computer.  I'm probably averaging six or more errors for each line I type. I'm trying to cut back on the time I spend on the computer.  This doesn't help.

The Damn Computer Keyboard Doesn’t Work!
Typically, when things go wrong, I look to assign "blame" elsewhere. So the computer keyboard was my first target; So I tossed it out and tried a new one. When that didn't work, I tried another. Here's evidence of how well that worked:


December 3, 2013

Alzheimer's / Dementia Rates DOWN!

I have Parkinson’s disease and prostate cancer. But I follow the news about Alzheimer’s disease (AD) with similar interest . . . maybe even more. Slipping into a fog – overwhelming my family with care and worry and dissipating my estate and their legacy  – is my biggest health fear. .

So I was happy to find some “good” dementia news.The New England Journal of Medicine reported recently that people are less likely to develop dementia today than they were 20 years ago, and that the onset of cognitive impairment seems to be happening later in life than before. (That last finding isn't a "home free" pass for me.)

Study co-author Dr. Kenneth Langa at the University of Michigan Medical School in Ann Arbor said:
We're very encouraged to see a growing number of studies from around the world that suggest that the risk of dementia may be falling due to rising levels of education and better prevention and treatment of key cardiovascular risk factors such as high blood pressure and cholesterol. Our findings suggest that, even if we don't find a cure for Alzheimer's disease and dementia, there are social and lifestyle factors we can address to decrease our risk.
His team suggested that two key factors explain the positive trend:
  1. People are getting more education, which stimulates the brain, and
  2. People are getting treated for – or avoiding – heart disease, a major dementia risk factor.

December 2, 2013

The BRAIN Initiative: an Update

This past April – to great fanfare – President Obama announced the Brain Research through Advancing Innovative Neurotechnologies (BRAIN) Initiative. The White House website heralded the project this way:
Today at the White House, President Obama unveiled the “BRAIN” Initiative—a bold new research effort to revolutionize our understanding of the human mind and uncover new ways to treat, prevent, and cure brain disorders like Alzheimer’s, schizophrenia, autism, epilepsy, and traumatic brain injury.
Needless to say, the news set the neuroscience community abuzz. For its reach and boldness, the project was described as “a moonshot for brain research.” As a person with Parkinson’s – a disease of the brain – I got pretty excited, too.

In the months since the announcement, questions have understandably arisen. Was the BRAIN Initiative too general? Was it adequately funded? Were research dollars safe? With various projects spread among different agencies and organizations, would results become fragmented and compromised?

November 27, 2013

Give Thanks Tomorrow (and Every Day) for Our Caregivers





November is National Family Caregivers Month and tomorrow is Thanksgiving. That makes two good reasons -- today -- to feel grateful for the caregivers in our lives.

At this point in my journey with aging and Parkinson's, I see only glimpses of the dark at the end of the tunnel.I'm still in pretty good shape, with few physical caregiving requirements. But I benefit immensely from the emotional support I get from my friends and my families -- the Schappis and my domestic partners.

One of these days, though, I'll be in the midst of the dark at the end of the tunnel and dependent on caregivers to help me physically and mentally. Each week at my Parkinson's support group meetings, I see friends in the later stages of the PD decline. I hear how much they depend on their caregivers -- spouses and/or professionals -- and about the challenges they face.
 

November 26, 2013

If We Cure the Accompanying Insomnia, Can We Cure the Depression?

This is the sixth in a continuing series about sleep.

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We’ve known for a long time that insomnia is a hallmark – among the most common – of depression. As recently as November 19, I wrote in this space about the two intertwined conditions, and quoted the Norwegian Institute of Public Health’s Børge Sivertsen, who lead a recent study of the connection:
We conclude that insomnia predicts cumulative incidence or several physical and mental conditions. These results may have important clinical implications, and whether or not treatment of insomnia would have a preventive value for both physical and mental conditions should be studied further.
It didn't take long to find out. And yes, there is now evidence, slim but growing, that treating insomnia also treats -- even cures -- depression. In many ways, these recent study results – and the possibilities they suggest – represent a major landmark in the long journey toward treating depression . . . a milestone not unlike the arrival several decades ago of wildly popular drugs like Prozac and Zoloft.

November 25, 2013

Late Autumn Beauty: Garden, Neighborhood, Life

The idea for today's post came during Sunday's 4am "joy of quiet" time. At 11am, I ventured outside with my camera, even if the wind chill factor WAS 15 degrees. I'm not complaining; I much prefer these cold days to the swelter of July. On this cold morning, I returned to my warm house feeling invigorated. In the summer, I come back feeling totally wiped out.

My Home Garden
The side yard still shows some color:


So does the back yard. On Saturday -- a "warmer" day -- I cleared the pond of leaves.

November 22, 2013

A Helpful iPhone Contact – “Medical Schappi”

I steer clear of giving advice on this blog, and prefer just sharing what works (or doesn't) for me. But here’s an idea that might be helpful. 

I added a contact to my iPhone: “Medical Schappi.” It's where I keep my basic personal and medical data: medical history, primary doctors, prescribed medicines, supplements, and a list of medicines that people with Parkinson's -- like me -- should NOT use.

When I'm asked to complete paperwork at a new medical office, I simply retrieve the “Medical Schappi” contact. I’ve shared this information with my housemates and family; they know an up-to-date version is always available on my iPhone and should be called to the attention of any medical staff in an emergency.

That last piece of info is important. A member of my Parkinson’s support group was given Haldol when he was recently admitted to the hospital. Haldol is probably the worst med for someone with PD, and my friend had a serious adverse reaction. That drug heads my "DO NOT USE” list below.

Here’s the format I use:

November 21, 2013

“When Alternative Medicine Becomes Quackery”

Yesterday, I discussed how the placebo effect makes some alternative therapies "work." The post's title was "The Remarkably Powerful, Highly Underrated Placebo Response,” a chapter heading from Dr. Paul Offit's excellent new book, Do You Believe in Magic?

The title of today’s post is lifted from the final chapter of Offit’s book. After describing how the placebo response makes many alternative therapies valuable, Dr. Offit cautions that “a sharp line divides those who practice placebo medicine from those who practice quackery.” That line is crossed in the following four ways:

1) Recommending against conventional therapies that are helpful.
A wildly irresponsible example occurred when TV doctor Mehmet Oz publicized Dr. Issam Nemeh’s claim that faith healing can cure cancer. Here's another: in 1995, holistic promoter Andrew Weil said Chinese herbal therapy showed more promise to treat HIV than conventional medicine.

In Offit's view, top prize for irresponsibility goes to TV doctor Joe Mercola, who -- among other positions -- opposes the pasteurization of milk, claiming it compromises the product's nutrition. In fact, pasteurization doesn’t destroy milk's nutrients; instead, it destroys dangerous -- even deadly -- bacteria like salmonella, E. coli, and listeria.

November 20, 2013

Alternative Medicine and the “The Remarkably Powerful, Highly Underrated Placebo Response”

The quote is a chapter title in Do you Believe in Magic? The Sense and Nonsense of Alternative Medicine, the excellent new book by Dr. Paul Offit, and the best I've read on this topic. Offit is the author of other books like Autism’s False Prophets and Deadly Choices.

Much of the book details how alternative medicine – an unregulated industry under no legal obligation to prove its claims or acknowledge its risks – can actually be harmful to our health. He explains how:
  • Megavitamins increase the risk of cancer and heart disease.
  • Dietary supplements have caused uncontrolled bleeding, heart failure, hallucinations, arrhythmia, seizures, coma and death.
  • Acupuncture needles have transmitted viruses and pierced hearts, lungs and livers.
  • Chiropractic manipulations have torn arteries.
Offit also takes on my bêtes noires: the media celebrity doctors -- like Oz and Mercola -- who promote alternative medicine.

But Some Alternative Therapies Work . . .
. . . thanks to the placebo response. Dr. Offit writes:
There’s no such thing as conventional or alternative medicine or integrative or holistic medicine. There’s only medicine that works and medicine that doesn’t. And the best way to sort it out is by carefully evaluating scientific studies -- not by visiting Internet chat rooms, reading magazine articles, or talking to friends.

November 19, 2013

Don't Miss this Interview

I just finished listening to Marione Ingram’s interview on The 51% Conversations with Creative Women. I've known Marione for 50 years. She and her husband Daniel are two of my most treasured friends. I've read her book "The Hands of War" that was published earlier this year. I thought I was fully familiar with her amazing story. Yet I found myself moved to tears listening to this interview. I urge you to listen to it  www.51percentconversations.com

Insomnia: Risk Factor for Heart Attack, Depression, Osteoporosis and More

This is the fifth in a continuing series about sleep.

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A study that included over 24,000 Norwegian workers from 1995-1997 and again from 2006-2008 revealed that insomnia is a risk factor for heart attack, depression, osteoporosis, and other conditions. Results from the study – which tracked participants for over a decade – were reported on November 7 by Science Nordic and published in the Journal of Sleep Research.

Norwegian and Finnish researchers determined that insomnia sufferers are twice as likely to be diagnosed with depression as people who sleep well. The osteoporosis risk increase by 87% for insomniacs, and the risk from heart attack is 50% greater than it is among sound sleepers.

In addition, the research showed insomnia connections with anxiety, fibromyalgia, whiplash, rheumatoid arthritis, arthrosis (age-related cartilage deterioration) and asthma. While the team found connections between sleeplessness and obesity, hypertension and stroke, those links disappeared after the scientists adjusted for other factors.

Norwegian Institute of Public Health’s Børge Sivertsen, the study’s lead researcher, said: “The link to heart attacks is particularly interesting. One possible explanation is that sleep problems raise the stress response of the body, which has a negative impact on the function of the heart.”

November 18, 2013

Will New Ankle Sensors Help Parkinsonians with Freezing of Gait?

Several posts on my Twitter feed recently mentioned a brief article on Scientific American's site with this title: “Could a Simple Ankle Sensor Help with Parkinson’s Symptoms?”

The particular symptom under consideration is “freezing of gait” (FOG), something that apparently affects – eventually -- about 60% of us with Parkinson’s. It’s not an issue (yet) for me, though several PWPs I know experience FOG regularly. When it happens, their feet suddenly seemed riveted to the floor, and forward motion comes to a halt.

FOG is more than a frustrating inconvenience; it can also lead to falls and injury.

The device is under development at the University of Alabama/ Huntsville and works this way: motion sensors are embedded in a shoe or attached at the ankle. When those sensors detect FOG, they send auditory cues to the PWP’s earpiece, perhaps a simple message like “walk.” The process seems awfully simple, but initial testing has apparently shown positive results.

Here's an image that was included in the researchers' patent application for their device. The nice lady is wearing the sensor on her shoe, listening to cues in her earpiece, moving forward, and smiling:


November 15, 2013

The Creative-As-Ever Martin Cruz Smith: "I've Had Parkinson's for 18 Years"




"Martin Cruz Smith Reveals a Twist in His Tale"
The New York Times broke this story on the eve of the publication last Tuesday of Smith’s newest detective story, Tatiana. Based on its interview with Smith, the Times reported:
Author of the 1981 blockbuster Gorky Park and many acclaimed books since, Mr. Smith writes about people who uncover and keep secrets. But for 18 years, he has had a secret of this own. 
In 1995, he received a diagnosis of Parkinson’s disease. But he kept it hidden, not only from the public, but from his publisher and editors.
The article is worth reading in full. But here are some of things that jumped out at me.

November 14, 2013

Which of These Aerobic Exercises Is Best for Me?

I've started a new round of weekly meetings with my physical therapist. She'll fashion a few exercises to address my specific issues, and -- I know -- she'll urge me to do some aerobic exercises. I used to get plenty of aerobic activity on my bike, but the balance problems that came with PD -- and aging issues, too -- put an end to my biking. I miss it very much.

I substituted long walks, which I enjoyed almost as much. Then a car crash two summers ago resulted in a fractured vertebra. The lower back pain I experienced after the accident slowed me down even more.

My PT designed exercises to address that back pain, and they've worked like a charm. I can't use discomfort any more as an excuse not to take those neighborhood walks. But it's getting colder . . . .

What else could I try?

How About A Dance Group?
They certainly were popular at the World Parkinson Congress (WPC) in Montreal last month.  Here's a clip from NBC New, reported by Chelsea Clinton no less:



But I'm a  klutz and never could dance. I'm also uncomfortable with group exercises; I'm convinced everybody is watching me and trying not to laugh.

November 13, 2013

Lasers and Dot Tests for Alzheimer's and Parkinson's

I left last month’s World Parkinson Congress in Montreal a bit depressed. The top researchers who spoke to us seemed to agree: there was nothing on the horizon that offered any real hope for a cure. Other WPC participants I know left Canada with the same impression. It seems there's a similar lack of promise in the Alzheimer's arena, too, although research there always seems intense.

This past week brought some brighter news. One research report offered a glimmer of hope for finding cures for both diseases; another suggested an interesting new approach for treating Parkinson's

"Photo Therapy May Someday Cure Brain Diseases"
That was the headline on one of the stories.

Researchers at Chalmers University in Sweden and Wroclaw University of Technology in Poland discovered they could use multi-photon laser techniques to distinguish between aggregations of proteins believed to cause brain diseases and properly functioning proteins.

Diseases like AD and PD develop when amyloid beta proteins aggregate to the extent they inhibit proper cellular processes. If the protein aggregates are removed, the disease is cured . . . in principle. Until now, the issue has been detecting and removing those aggregates.

November 12, 2013

Conventional Medicine and Alternative Medicine and Coconut Oil: Here’s a Fresh Perspective

Anyone who’s read my posts on this issue knows where I’m coming from. I distrust and dislike the overly hyped and overly commercialized approach to dietary supplements and other alternative treatments. But I’m not knee-jerk anti-supplements. Two supplements that I discovered on my own -- curcumin and 5-HTP – are mainstays of my health regimen. Another – vitamin D – was prescribed by my internist.

I’ve been on a “less-is-more” kick of late, and I’m trying to use this mantra to discipline myself to cut back in many areas of my life, including pill popping. I feel strongly, and most medical authorities agree, that the more pills I take, the greater the danger of adverse interactions.

I also feel, again in agreement with most medical authorities, that the billions of dollars we Americans spend on dietary supplements -- and on the latest “cures” touted on the internet or TV -- are largely wasted. Most of us can get what we need from diet and exercise.

I’ve been particularly (overly?) harsh about the coconut oil fad of recent years that has its origins in Dr. Mary Newport’s story of the remarkable turnaround she saw in her Alzheimer's-afflicted husband Steve when she began feeding him coconut oil four or five years ago. I devoted two posts to coconut oil last week since similar claims are now being made for coconut oil as a treatment for Parkinson’s.

I’m aware, and family and friends can attest, that I often overreact and careen from one side of the road to the other in my views, often missing the middle of the road. I’ve been hoping that this trait, usually annoying to others,would generate comments on the blog from those with differing viewpoints so that the discussions would be more balanced.

November 7, 2013

The Coconut Oil "Cure" -- First Alzheimer's, Now Parkinson's?

I’ve written often about the hype -- unsubstantiated by science -- that coconut oil cures Alzheimer’s disease.

Now, I'm finding reports that coconut oil can treat symptoms of Parkinson's. I was ready to bet the ranch that the same baseless "buy-our-product!" propaganda was driving these new claims.

It's a good thing I'm not a betting man.

But before I get to the coconut-oil-for-Parkinson's story, let me admit: I, too, once found a "miracle cure."

5-HTP: My Own Experience with a "Miracle Cure"
As my Parkinson's developed, I experienced depression, insomnia, and constipation -- all common non-motor symptoms of the disease. Only one thing worked for me: the OTC serotonin booster 5-HTP. 

In fact, it worked "like a miracle." My neurologist approved this use of 5-HTP and even recommended the product to newly diagnosed patients. I urged family and friends to buy and try it, too. I even started this blog to share the gospel of 5-HTP.

November 5, 2013

Connecting Fall Foliage, Cornell Football and the Ohio State University Marching Band

Yesterday, I wrote about our beautiful fall foliage. Watch now as I connect that post with a seemingly unrelated video I think you'll like.

I grew up in Ithaca, NewYork. Fall foliage there was spectacular, and I particularly enjoyed looking out at the colorful hills on fall Saturdays . . . sitting way up in Cornell's Schoellkopf Stadium, with the football action on the field below. Believe it or not, Cornell once had a national championship team. From Wikipedia:
Cornell defeated Penn State, 21–6, in 1938 to begin a school record unbeaten streak of 16 games. The Big Red compiled an 8–0 record in 1939 for its fifth national championship. The possibility of a Rose Bowl invitation that season was rebuffed by the university administration. The unbeaten streak came to an end in 1940 with the infamous Fifth Down Game. After the game, Cornell voluntarily forfeited to Dartmouth when review of film showed the Big Red had inadvertently used five downs. The ESPN College Football Encyclopedia named the game, and Cornell's honorable concession, the second greatest moment in college football history.
I was 10 years old back then. Unfortunately, Cornell football's glory days were long past by the time I watched them play. But I WAS in the stands in 1951 -- part of Schoellkopf Stadium's largest crowd ever -- to see the home team defeat defending Big Ten Conference and Rose Bowl champion Michigan, 20-7.


November 4, 2013

Fall at Home: A Beautiful One!


My apologies for the title's double entendre. An 84-year-old with Parkinson's shouldn't joke about falls at home. But as family and friends know, I'll joke about almost anything.

I love fall in this part of the world. And this year, I enjoyed seeing peak foliage twice. A month ago, returning from the World Parkinson Congress in Montreal, we spent two splendid days driving through the Adirondacks while colors were at their most brilliant.

Now the peak foliage has arrived in the Washington area. In my not-so-humble opinion, what I see here holds its own with the Adirondacks!

November 1, 2013

Insomnia: Marcia's Story

This is the fourth in a continuing weekly series about sleep.

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A site I check occasionally -- Patients Like Me -- has recently run a series titled "Are You Sleeping?" As part of that initiative, the site carried the following interview with "Marcia," who tells her own story about her struggle with insomnia.

Here's Marcia . . . and her story, directly from the Patients Like Me site:


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October 31, 2013

The Parkinson's Pen: An Earlier Diagnosis?


The internet was buzzing a bit yesterday with reports about a new pen that might bring earlier diagnoses for people with Parkinson’s (PWPs). When people write with this new device, state-of-the-art technology – so its developers believe -- can detect indications of PD sooner than previous diagnostics allowed.

Is that important? One of the messages I heard several times at the World Parkinson Congress in Montreal earlier this month was that – by the time most of us receive our PD diagnoses – most of the damage to our dopamine-producing cells has already occurred. From that point forward, we’re pretty much left with the messy business of damage control.

If PWPs can learn what’s happening in their bodies sooner – before other symptoms like tremor or rigidity occur… and before the dopamine production machinery is effectively compromised – the likelihood of prolonged normal function is increased. What’s not to like about that?


October 30, 2013

Could I Hire an End-of-Life Healthcare Enforcer?

Yesterday, I discussed a sad topic: how sick old people are subjected to endless, expensive, and useless medical procedures, even after they have specified in writing that they want no such thing. The documents they sign make it clear they want a peaceful, tranquil end to their days.

Second only to dementia, I fear being kept "alive," plugged into a machine that keeps the money meter running and prolongs my family’s misery . . . and mine. I’d be much happier spending my dying days in hospice care. Yet, this horror story seems to happen even to the most informed and knowledgeable patients and their caregivers. How can I make sure to get the "good death" I want?

Enter the Health Care Fiduciary
At the end of the New York Times article that prompted my comments yesterday, I saw a link to a blog post titled “Hiring an End-of-Life Enforcer.” It describes a new concept for the medical industry: the health fiduciary.

October 29, 2013

Our Last, Dying Days: How Will We Spend Them?

The New York Times' excellent blog The New Old Age featured a review yesterday of a new memoir that offers “yet another lesson in the barely noticed ways sick old people slide onto the conveyor belt of contemporary medicine, even if . . . they have always said they don’t want aggressive treatment.”

The book is The Fifth Season: A Daughter-in-Law’s Memoir of Caregiving. Author Lisa Ohlen Harris shared a household with her mother-in-law Jeanne for seven years. When Jeanne’s health deteriorated from COPD, Harris became one of 65 million American family caregivers.

Harris helped Jeanne file an advance directive declining extraordinary measures to preserve life. As they navigated the healthcare system during Jeanne’s final months, however, the two women realized that Jeanne's "final exit" wasn't playing out as she had specified in the written document.

The Fifth Season tells a story I’ve heard too often: how the evasiveness of doctors, the hopefulness of patients, and the reluctance of families to let their loved ones go all swirl into a tragic perfect storm, exposing sick, frail people to continuing and futile procedures they never wanted.

October 28, 2013

Who's to Blame for the Obamacare Mess? Obama.

I usually avoid political issues on this blog; I figure everybody is fed up with our dysfunctional government. But I've been so furious about the botched launch of the Obamacare website that I decided to make an exception and vent my anger.

First, My Anger with Obama
The political pundits are having a field day, debating who should be fired for this debacle. The lower-level government employees developing the website? HHS Secretary Kathleen Sebelius?

I think the responsibility rests with President Obama. This law was the major achievement of his first term and -- the way things are going in our "do-nothing" Congress -- it may well be THE signature enactment of his presidency. His name became part of the law's shorthand title; how it's implemented will surely affect his legacy.

The White House press office tells us that the president knew nothing about HHS's difficulties in prepping the website launch. That's not an excuse; it's an indictment. On something this important, the President should have demanded regular progress reports, and held briefings, from the very beginning of the process.

October 25, 2013

How Much is that Doggie in the Window?




He may be worth more – for your health – than you might think.

There hasn’t been a dog living in my house for a long time. But every couple weeks, during our bridge games here, a friend brings her Jack Russell Terrier. "Willie" runs arounds, snacks, and relaxes as we play cards. I really like having Willie in the house.

Then again, I don’t have to feed Willie, worry about him, keep him out of my garden, clean up after him, fret that his barking might bother the neighbors, or – the biggest concern for me – WALK Willie, especially on those cold, rainy or snowy mornings.

Still, my resident Nepali family and I have recently discussed – again – getting a dog. So far, we’ve decided against the addition, and I suspect it’s been the right choice for us . . . for now. But the November Wellness Letter from the University of California / Berkeley featured an article titled “Pawsitive Thinking” that raised the question one more time: dog or no dog?

October 24, 2013

Sleep and Parkinson's

This is the third in a continuing weekly series about sleep.

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According to a recent “PatientsLikeMe” survey, nearly 2/3 of all responders thought they had sleep problems.

For people with Parkinson’s (PWPs) – like me – the percent is surely higher. Insomnia is a typical issue for us, along with depression and constipation. I take 5-HTP – an OTC serotonin booster – every day, and that supplement helps me with all three of those roadblocks to well-being.

In a recent bulletin from the Parkinson Foundation of the National Capitol Area, Dr. Stephen Reich wrote:
I find it uncommon to encounter someone with PD who consistently sleeps well through the night and is not drowsy at some point during the day. It is important to appreciate that insomnia is a symptom, not a disease, and that the approach to treating insomnia is to determine its cause(s) rather than simply writing out a prescription for a sleeping pill.
God knows, I’ve gone the route of sleeping aids and paid dearly, as I’ve described in what I call my "summer from hell." 

October 22, 2013

Blood Pressure Log: Key Tool in My Health Management

Yesterday I wrote about my summer "sinking spells," which my recent research shows were caused by PD-related orthostatic hypotension (low blood pressure). I'm convinced I discovered that reason only because I've kept careful blood pressure records.

What's my BP log look like? Here's the entry for this past Sunday. It's interesting to me, and probably more confusing than usual:


(Please excuse the small, cramped handwriting (micrographia), a PD attribute.)

October 21, 2013

Parkinson's and Pills: New Problem. New Solution?

I experienced "sinking spells" this summer, and -- once again -- I've learned how important it is to be the CEO of my own healthcare and well-being.

The Problem
Every year, our summer heat and humidity bother me more; I feel wiped out when I leave my air-conditioned house on nasty days. This summer -- even though our weather was less horrible than ususal -- seemed the worst ever. If I worked in the garden or went shopping around midday, I'd feel weak, sometimes close to fainting. Several times, I needed someone else's steadying arm for support.

My Blood Pressure Monitoring
For several years, I’ve been taking 5-HTP, the over-the-counter serotonin booster that helps with depression, insomnia and constipation -- common PD side effects. But taking too much of this supplement has caused scary spikes in my blood pressure; I now take a minimal dose and monitor my BP at home.

October 18, 2013

SLEEP: How to Do It Better

This is the second in a continuing weekly series about sleep.

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I’ve described my battle with insomnia, a problem that nearly drove me to the brink during my summer from hell a few years ago. For the time being, anyway, I’m enjoying a reprieve, aware more than ever that a good night’s sleep lies at the heart of my general well-being.

There are lots of reasons why I’m sleeping better these days. One of them  -- I’m convinced – is my daily "joy of quiet" meditation.

Studies show that half of all older adults have trouble sleeping. Luckily for us, doctors and sleep experts offer loads of advice. I want to share some of those tips from three different sources today.

AARP’s fall Strive for Healthy Living pamphlet gets right down to basics:
  • Exercise regularly. About 30 minutes of moderate motion  most days of the week boosts your mood along with the quality and quantity of sleep.
  • Ban electronics from your bedroom.  TVs and computers can distract you from sleep. Backlit tablet devices emit light that lowers levels of the sleep hormone melatonin. (This particular problem was the subject of last weeks' post.)
  • Nap smartly. Try not to snooze between 3 p.m. and bedtime.
  • Use light therapy. Thirty minutes of natural sunlight during the day may help to properly sync your internal clock. As evening approaches, dim overhead lights.

October 17, 2013

The Montreal Trip: A Last – Colorful -- Look Back

You might think that attending the World Parkinson Congress (WPC) in Montreal, Quebec in the fall might have been a slightly “gray” experience -- all those thousands of people like me, with their own versions of the degenerative disease we share . . . the great city’s 17th, 18th, and 19th century old stone walls . . . the gray autumn skies . . . the damp wind blowing in off the St. Lawrence River . . . .

As it turned out, my time there was ANYTHING but gray. Mostly – even through some of the mind-numbing medical and scientific technicalities we heard -- the experience was colored by the dazzling optimism of people with Parkinson’s – and people taking care of people with the disease – living their lives, being hopeful about their futures, eager to share, listening, ready to learn. It was humbling and inspiring.

I’m going through all my notes now – and photos -- and reviewing materials from the Congress. I’ll keep learning through this process. But, looking back, I’ll remember how bright and colorful everything seemed to me . . . especially the amazing people I met.

The adventure began with a stopover in Ithaca, NY -- where I grew up -- and a visit with my terrific brother Roger and his son and daughter-in-law.


October 16, 2013

World Parkinson Conference: Exercise, Exercise, and More Exercise!


If there was a one major theme I heard repeatedly at the World Parkinson Conference in Montreal earlier this month, it was the importance of exercise. Sessions devoted to the topic drew great interest -- and participation -- from attendees.

My notes include remarks like these:
  • Your exercises are as important as your pills.
  • Exercise and drink black coffee.
  • Sitting in front of the TV sucks the life blood out of you.
Living Well With Parkinson’s

October 15, 2013

Curcumin and Alzheimer’s: Should I Up My Daily Dose?

My greatest fear is Alzheimer’s; I suspect most old people like me feel the same way. These days, when something out of the ordinary happens, I ask: "Is it just old age, or is it Alzheimer’s?"

I’ve been an avid traveler -- mostly solo -- for years, and I've always loved the planning part. In the 1980s, though, I didn't do much advance prep. I'd get my 15-day Eurail Pass, check in at the "travelers' aid" desk at each new railroad station, and find accommodations that fit Frommer's Europe on $25 a Day budget. 

As I got older -- and as the internet created new planning options -- I gave up "winging it" and started making reservations at hotels I found in Frommer’s for Europe or Lonely Planet for Asia. It was fun being my own travel agent.

But three recent incidents worry me:
  • In Europe this summer, I was eager to show my son and his companion a town I liked in the south of France: Saint-Rémy-de-Provence. So I made a reservation at the hotel I’d enjoyed there years before. When we arrived, I discovered I'd booked the wrong hotel AND the wrong dates! We lucked out, and ended up staying at the Hotel Gounod, a charming hotel in the town center. 
  • On a trip to Montreal earlier this month, I planned a stop in my hometown of Ithaca, NY, and booked rooms for myself and my travel partner at the Statler Hotel on the Cornell University campus. When we arrived at the hotel’s reception desk, "it" happened again: I'd booked the wrong night, and the hotel was full. We made a quick walking tour of the campus, then drove to another, perfectly acceptable hotel downtown.
  • Last week I was scheduled to participate in a workshop -- “Assessing Health Professional Education" -- sponsored by the Global Forum of the Institute of Medicine (affiliated with the National Academy of Sciences) here in Washington. I was looking forward to it. I arrived at 11:30am for what I thought was a noon event, and learned the session had started at 10:30 and was now over. Bummer!
Three goofs in just a few months? For a compulsively organized freak like me? Uh-oh.

A Good Checklist on 10 Warning Signs of Alzheimer’s

October 14, 2013

Coconut Oil for Alzheimer’s? A Sad Update on the Newports

I've repeatedly questioned the claims for coconut oil as an Alzheimer’s remedy. Those unproven assertions have raised -- and dashed -- the hopes for thousands of sufferers and caregivers. Much of the momentum for the "coconut oil miracle” has come from Dr. Mary Newport, a neonatalogist at a hospital in Tampa, Florida.

The Newport Story
Dr. Newport’s husband Steve was diagnosed with Alzheimer’s 12 years ago at age 51. In May 2008, she started giving Steve four teaspoons of coconut oil every day, and she soon became convinced that his symptoms improved dramatically as a result. 

Thus began her five-year campaign touting coconut oil. While she only saw improved symptoms in her husband's condition, she published a book in 2011 titled: Alzheimer’s Disease: What If There Were A Cure? That title suggested something dramatic, and her book has sold over 50,000 copies. 

This year, she was interviewed on the Christian Broadcasting Network. Its founder, televangelist Pat Robertson, has also hyped coconut oil, even suggesting that God may have His hand in the miraculous results.

October 11, 2013

Lake Pleasant, NY: Happy Surprise on the Less-Traveled Road Home from Montreal

So often in my travels, it's the unexpected -- the unplanned -- that become special highlights.

It happened again this past weekend, as we drove home after four days in Montreal for the World Parkinson Congress. After lunch on Friday in Lake Placid, and then a slow ride along uncrowded mountain roads... past Saranac Lake... Tupper Lake... Indian Lake... we stopped for the night at the Lake Pleasant Lodge in Speculator, NY, a town of about 400 in the southern Adirondacks.

Ever hear of Lake Pleasant? I hadn't. Planning the drive south through the mountains, I wanted to stop somewhere that was about four hours from Montreal. "Lake Pleasant" seemed to fill the bill.

In Lake Placid, I asked the waitress how long it would take to get to Lake Pleasant. She looked puzzled. "Never heard of it," she said. Hmmm. I wondered if I should have picked a more familiar stopover.

After checking into our modest, comfortable motor lodge, this view reassured me:


October 10, 2013

Sleep Problems: Computers Don't Help

I’ve seen so many articles about SLEEP ISSUES recently – via my email inbox or the mail-slot on my front door – I decided to begin a weekly series on the subject. After all, there are millions of us who struggle with insomnia, and it’s a particular problem for people with Parkinson’s, like me.

Today I want to discuss how using computers may affect our sleep. You’re looking at this blog right now, so . . . I’m talking to YOU!

The Light from the Screen
Through millions of years, our species has evolved by working during the day – hunting, gathering, growing food – and resting at night. As a result, our bodies developed the habit of producing the hormone melatonin when darkness falls. Melatonin induces drowsiness. So night comes, and we want to sleep. It’s a system that has served our species well for a long, long time.

Electric lights made life easier for us, and – it turns out – more complicated. The pattern that worked for millions of years – and for which the incredibly complex human body made special adaptations – was turned on its ear, with houses filled with nighttime lights.

Scientists tell us something else: the less sunlight we get during the day, the MORE we’re affected by melatonin-suppressing artificial lights at night. A million years ago, we’d have spent the entire day outside, in the sun, taking care of business. Now, we spend way too much time inside, further confusing and disrupting the natural sleep cycles developed through the millennia.

October 9, 2013

A Visit to My Boyhood Home in Ithaca, NY: Did My (and Others') Parkinson's Begin Here?



This photo was taken last week in Ithaca, NY, enroute to the World Parkinson Congress in Montreal. I'm standing in front of the half of the house my dad rented. From age 7 to 26, I lived here.  

I wanted to stop in Ithaca to get together with my terrific brother, who still lives in the area. So do his equally terrific son and daughter-in-law. It was great having dinner with them at the BoatYard Grill on Cayuga Lake. 

October 7, 2013

Americans Earned a C+ in Proper Medicine Use. How Would YOU Score?

A recent article on the HealthDay site reported that Americans scored a C+ in proper use of medications. Not a very impressive result.

The mediocre grade is the result of a survey by a pharmacists' group of more than 1,000 adults, aged 40 and up, who take medicine for a chronic condition. The survey asked nine questions about participants’ activity over the past year. Did they:
  • Fail to fill a prescription?
  • Neglect to refill a prescription?
  • Miss a dose?
  • Take a lower-than-prescribed dose?
  • Take a higher-than-prescribed dose?
  • Stop a prescription early?
  • Take an old med for a new problem without consulting the doctor?
  • Take someone else’s medicine?
  • Forget whether or not they had taken a medication?
How Would YOU Have Scored?

October 4, 2013

Meet Tim Hague, Sr. -- Amazing Race Canada winner and Person with Parkinson's

The surprise "special guest" at Tuesday night's opening ceremony at the World Parkinson Congress in Montreal was Tim Hague, Sr. A nurse, a husband, a father, and a person with Parkinson's, Tim WON the Amazing Race Canada with his son.

In his remarks to the conference crowd (over 3,100 people registered for this congress), Tim stressed the importance of perseverance. His victory in the grueling competition -- overcoming odds many thought were stacked heavily against him -- is proof that he and his son both possess that quality in abundance.
The one word that I came away with is perseverance. You never know where the next bit of luck is going to come from, what the next good thing is going to be. You can't give up. You have to persevere. Many thousands of people are putting their time and their energy into trying to find a cure and making life better for people with Parkinson's. A massive number of people are behind us, so don't give up.
Here's Tim talking about the race, his Parkinson's, and his family:

October 3, 2013

"Smaller: A Poem about Parkinson's" -- the Winning Video at the World Parkinson Conference

At Tuesday night's opening ceremony for the 3rd World Parkinson Congress (WPC) here in Montreal, we learned who won the WPC 2013 Video Competition: New Zealander Andy McDowell, with his entry titled Smaller: A Poem about Parkinson's.

Andy describes it this way:
This film was based on a poem I wrote 6 months after being diagnosed at the age of 43. I created it to help my two girls understand what was happening to me - and involving my eldest Lily (7) in the production was an amazing way to connect the dots. 
The defining message of the poem is that whilst Parkinson's has forever made me "smaller" in a physical sense I still have choice over the rest of my world. 
In a strange way PD requires me to be "bigger" to still be me and, whilst I can't speak for everyone, that seems to strike a chord.
Here's the charming three-minute video:

October 2, 2013

World Parkinson Congress Begins in Montreal, Canada

It's good to be back in Montreal, a favorite city. I'm here for the four-day World Parkinson Congress. Believe it or not, this is my hotel room at the Intercontinental -- a corner location on the 22nd floor:


I look out the window of my room and see this:

October 1, 2013

Parkinson's Update: Entering Year Five

I'm in Montreal this week for the World Parkinson's Congress, so it seemed an appropriate time for a quick update on my own Parkinson's disease.

Checkup Visit with My Neurologist
I got a regular check-up last month. My doctor -- after asking some questions and administering a few physical tests -- tallied the results using the Unified Parkinson's Disease Rating Scale. Points range from 0 (no disease) to 199 (worst possible). My score has typically been nine or ten. This time, it was again ten, so . . . I'm still enjoying the Parkinson's "honeymoon" period after four years living with -- and managing -- the disease. I'm lucky: I've had no seriously disabling symptoms.

But Is My Honeymoon Coming to an End?
Despite my neurologist's encouraging report, I've experienced some peculiar symptoms recently. Since July, I've often had sinking spells after lunch, particularly on hot, humid days . . . and especially when I'm working in the garden or otherwise exerting myself. In addition to the unusual fatigue, I've had balance problems and -- a few times -- came close to fainting.

September 30, 2013

Michael J. Fox: Sad To Say, His Interview Is More Fun To Watch Than His New TV Show

I don't watch TV, except for the PBS NewsHour and Redskins football. But I made a special effort to check out the first episode of the sitcom series that stars Michael J. Fox portraying what he is -- a nice family man with Parkinson's. I turned it off after 15 minutes, and it seems my reaction was typical.

I went online to see what the TV critics had to say. I thought Time Magazine had the best review. The headline and subhead summed it up nicely:
Michael J. Fox Is Better Than "The Michael J. Fox Show."
An extraordinary star returns in a very ordinary sitcom.
Critics not only watched the pilot with the rest of us; they received tapes of the show's next two installments. Time's critic was kinder than I was, saying that while not hilarious, the pilot "was very promising."
This doesn’t need to be a sitcom all about living with Parkinson’s per se; it’s a sitcom about a man re-changing his life. Is he the same guy after years home with his kids? Does he want to be? Does he still have what it takes at work? Will it be weird? That’s a fertile conflict; those are stakes. It’s something that can fuel story and character and, let’s hope, laughs.
Unfortunately, he says, that idea just disappears in the next two episodes and what we're left with "is what worked least well in the pilot, a mundane, dated-feeling family comedy that feels like it's missing its laugh track."

September 27, 2013

Parkinson's Disease Symptoms: Getting an Early Diagnosis

I'll be in Montreal, Canada next week, attending the World Parkinson Congress . . . and, I hope, finding some time to enjoy that great city. I'll visit Ithaca, New York -- where I grew up -- on the trip north. Then, after a slow ride south on country roads through Adirondack lake country and glorious fall colors, I'll visit Hudson, New York, where I was born.

This gathering in Canada reminds me that it was my own diagnosis with Parkinson's disease four years ago that launched this blog. It was a diagnosis that took some time in coming.

Before my PD was on anybody's radar, I was aware of several new physical developments:
  • My right arm wasn’t swinging normally, freely, when I walked. 
  • My balance seemed less steady.
  • My sense of smell had practically disappeared.
I had shared these observations with my doctor, who didn’t connect the dots. All three symptoms are early indicators of Parkinson’s. Several months later, a different healthcare professional raised the PD red flag.

My experience underlines the importance of being informed, and acting as one’s own wellness CEO. If I had known then what I do now, well . . . I could have made the diagnosis myself. But I didn’t know; most new PD patients don’t. Why should we?

September 26, 2013

Landmark Settlement Helps Us Get Medicare Coverage for Physical Therapy and Other Skilled Care

A settlement of a nationwide class-action lawsuit filed against the U.S. Department of Health and Human Services will make it easier for patients with chronic illnesses like Parkinson's, Alzheimer's, MS, or stroke to receive skilled care services at a nursing home, rehabilitation hospital, or at home.

Although not specifically stated in the Medicare law, the federal government for decades had adopted a "stability presumption" under which skilled care was automatically denied patients whose conditions were "stable" or deteriorating during the coverage period. Under that interpretation of the law, skilled services were covered by Medicare only if it could be shown that they would result in medical or functional improvement. Many patients, like me with Parkinson's, have long-term or debilitating conditions for which improvement isn't possible, although skilled care might prevent further deterioration or at least slow it down.

Six individuals and seven organizations (including the Parkinson's Action Network) filed a lawsuit challenging this informal policy guideline in the federal district court in Vermont. Last October, the parties filed a settlement agreement with the court, and on January 24, 2013, the court approved the settlement agreement.

September 25, 2013

OK, Boomers -- Look in the Mirror and Listen Up!

My favorite senior blogger Ronnie Bennett wrote a post last week about accepting our senior bodies. She included some great quotes from geriatrician Bill Thomas that led me to an article -- "Eldertopia'" -- he wrote a few years ago in AARP's The Journal. 

The Boomer Generation Needs to Look in the Mirror
Most of his article is directed at Baby Boomers, the 78 million children born after World War II, a generation he describes as having "a tumultuous beginning, a quiet middle, and an ending that is yet to be written." As a member of that generation, he sees Boomers just beginning to accept aging:
The postwar generation's dim but growing awareness of aging is beginning to generate intensely private concerns that people are reluctant to discuss openly. The shame-based approach to aging is heavily reinforced by an American mediascape that loudly and insistently proclaims: "You are young, Young is always better than old. Adulthood can last forever if you want it to." In public, we tell each other, "You are as young as you feel!" but in our most private moments we can feel the truth. We are aging . . . .
Admitting to the truth of aging is painful and difficult, but the admission must be made before we can begin the journey out of adulthood. The best place to start such an exercise in truth-telling is in front of a mirror . . . .
You must have an intensely personal and private conversation with your own true, aging, self. The time has come to look into the mirror and, finally, make peace with the changes you see on your face and feel in your mind and body, You are not the person you were 20 years ago. The fact is that those people vanished a long time ago.

September 24, 2013

How to Choose "Best Carbohydrate Quality"? The 10-to-1 Rule

A recent Harvard study offers a nifty way to decide whether or not a product meets a real “whole grain” standard: the 10-to-1 rule. As shown on the product’s nutrition facts panel, the ratio of TOTAL CARBOHYDRATES to FIBER should be LESS THAN ten to one.

Here’s the easiest way to do the math: multiply the grams of fiber by ten. That total should be GREATER THAN the carb grams.

Why 10-to-1? That’s the ratio of carbs to fiber in whole wheat flour.

It’s a good sign if an item on your grocery store shelf is labeled “100% whole wheat” or “100% whole grain.” Also look for the voluntary “Whole Grain Stamp” issued by the Whole Grains Council (which the Berkeley Wellness article rightly indicates is supported by dues from industry members). That stamp guarantess at least eight grams of fiber per serving. Here are two examples of those stamps from the WGC:


September 23, 2013

Is There Hope for the Middle Class while the Monkeys are Running the Zoo?

cmsboston:

25 Years of Going NowhereDan Wasserman, September 19, 2013.
On Saturday, the Washington Post ran the cartoon shown above (by the Boston Globe's Dan Wasserman). On Friday, the Post carried a story by Jim Tankersley titled "Jobless recoveries are here to stay, economists say, but it’s a mystery why." The author made these points:
  • The U.S. is stuck in its third consecutive "jobless recovery" stretching back to the 1990 recession.
  • Economists concluded that this pattern might well become the new American model for recessions and recoveries.
  • After an exhaustive series of tests, economists couldn't explain what's gone wrong.
Here's One Thing That's Gone Wrong

September 20, 2013

Views from my Meditation Chairs in Europe



“The meaning of life is having a spectacular view.”

Earlier this week, I explained how meditation enhances my well-being. Today, I want to share a final thought -- and a few photos -- about my treasured early-morning "joy of quiet."

I could meditate anywhere -- in the kitchen, the bathroom, the garage. All I need is a straight-backed chair and a pillow for my arm rest.. Silence helps.

So does a pleasant view. At home, when weather permits, I sit on the porch and take in my backyard garden and pond. The birds chirping as the dawn breaks -- and the little waterfall in the pond -- add a calming soundtrack.

I could never have survived my five weeks touring Europe this summer if I hadn't been sleeping well. And I slept well through that adventure, in part, because I meditated every day. Here are some of the things I observed during my "joy of quiet" time on the road.

September 19, 2013

#3 of My Big Three: Sleep "Prescriptions"


It's 11:30pm, and I'll post these thoughts in the morning. But now, I'll go to bed, and I will fall asleep without any trouble whatsoever, without popping any pills, and without any anxiety about being able to fall into a deep, refreshing sleep.

It has not always been like this. In the past, I've struggled with several severe, prolonged bouts of insomnia. Each had a different scenerio, and each a different solution.

My Battles with Insomnia
Booze. During my alcoholic years, my wife and I would drink two or three martinis before dinner and several glasses of vermouth before bedtime. So I usually had no trouble falling to sleep. But I'd wake in the middle of the night and have trouble getting back to sleep. My solution? Slurping down another glass of vermouth, placed strategically the night before under the bed where my wife wouldn't see it!


September 18, 2013

#2 of My Big Three: Meditation

I've been an avid reader of self-help books since 1978, when I joined Alcoholics Anonymous and discovered M. Scott Peck's The Road Less Traveled. That book about the paths to spiritual growth became a New York Times best-seller only five years later . . . and stayed on the list for the next 13 years.

The book became a bible for me -- and many others in my AA meetings -- long before it became a national sensation. We learned about it early, thanks to the Washington Post's Phyllis Theroux, who had discovered an advance copy in book review editor's office. She took it home, returned two days later, and demanded to review it. She later said she spent two weeks writing a piece "that would force people to buy the book."

After becoming a popular lecturer, Peck would ask his audiences if they'd been in therapy . . . in a twelve-step program or with a trained therapist. Most of his listeners -- like me -- raised their hands.

The Road Less Traveled was just the beginning. I still have an entire shelf of self-help books here, and many others I bought ended up in used book stores all around Washington. 

September 17, 2013

#1 of My Big Three: Exercise

Bouncing around Europe for five weeks this summer, I relied on the same Big Three I use at home to help with the challenges presented by my Parkinson's and my age:
  1. Exercise
  2. Meditation
  3. Sleep "prescriptions"
These routines make a huge difference in the quality of my life, so I've had no trouble "sticking with them" at home and on the road. "Diet" should really make it a "Big Four" (I'm good at home), but this summer's travel temptations got the better of me.I've taken off half of the nearly 10 pounds I gained.  Today, we'll start with #1:

Exercise

September 16, 2013

Traveling with Parkinson's: Part 3 ("Show and Tell")

Mesh Bags Are Great
I use mesh bags every time I pack for a trip. They keep me organized when packing and they make it easy to stay organized in hotel rooms or ship cabins. Here are the bags I used on this summer's European tour:


I got the Lenovo Ultrabook just before the trip. I'd used a Mac in Alaska, but it was heavier and bulkier and -- worst of all -- it proved to be too much of a new trick for this old Windows dog. The Lenovo was a better choice for me . . . once FedEx delivered the cord I'd forgotten to our Paris apartment.

September 13, 2013

Traveling with Parkinson's: Part 2

This is the second installment of my report on traveling with Parkinson's.

On The Way
It helps to print out boarding passes in advance: one less line to deal with at the airport. (I'm not as hip as my younger friends who get their boarding passes on their iPhones.) At the gate, pre-boarding gives me some extra time to stow my carry-on baggage and get settled in my seat.

The standard recommendation while aloft is to stand up and stretch every hour or so. Drinking lots of water really helps me avoid jet lag . . . and forces me to do some extra walking to and from the bathroom. I also walk the length of the plane several times. 

Whether seated in a plane, train, or car, I try to remember to do simple exercises, like toe taps and shoulder shrugs.

I used to pop Tylenol PM on long flights to help me sleep, but I never got the timing right. I'd take a pill and half an hour later -- just when I'd hoped to be drifting off -- the flight attendant would serve dinner. Now that I'm flying in roomier business class, it's easier to sleep pill-free on the plane.

September 12, 2013

Traveling with Parkinson's: Part 1

After my PD diagnosis four years ago, I wondered if I could continue experiencing the joy of travel. I hated to give up biking, and worried that travel would be the next casualty.

I've been reassured by an easy week in June on a cruise to Alaska and five fun weeks in July and August bouncing around Europe. But I recognize I'll need to adapt as time goes by.

I'm looking forward to another trip at the end of this month when a friend and I will drive to Montreal, Canada, to attend the World Parkinson's Congress. The programs should be interesting, and I'll meet many others who are living with PD. But the real selling feature was Montreal, a favorite city. The drives to and from should also be fun, especially through the Adirondacks, where fall foliage will be at its peak.

The Congress sponsors sent registrants a helpful article on traveling with Parkinson's. What follow is based on that article and my own experience.

September 11, 2013

Alzheimer's and . . . Gratitude? Two Views

I encountered two surprising reactions to Alzheimer’s last week: one from a man dealing with the disease, the other from a woman whose father is slipping away. The common element in their responses was something I haven’t really seen before in the consideration of this difficult illness: gratitude.

Gratitude from a Man with Alzheimer’s
The following comments graced David Hilfiker’s remarkable blog, “Watching the Lights Go Out: A Memoir from Inside Alzheimer’s Disease.” David is 68, a retired doctor, lives here in Washington, and shares his thoughts here: http://davidhilfiker.blogspot.com/.

Here’s what David wrote on September 3:

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Weeping in Church

September 10, 2013

Home Sweet Home: Beauty Inside and Out

The "Grand Tour" of Europe with four generations of Schappis was terrific. But five weeks away is a long time. I love my house, garden, and home family. I'm surrounded by beauty inside and out, as you'll see from these photos.

The Backyard Garden
Here's the oasis I see from the rocking chair on my back porch:


Nimesh and Bhawana kept the fish well fed in my absence:


The New Butterfly Garden
The violent derecho that blew through our region on June 29, 2012 took down a large magnolia and a cherry tree in my side yard. I've spent the past year transforming the former shade garden into a sunny butterfly garden.
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