December 31, 2016

Exercise: The Best Medicine for Parkinson's Disease?

Almost any exercise is good medicine for someone with Parkinson's disease, a new study confirms.

Although physical activity may seem impossible for some people with Parkinson's, the new research reaffirms what many specialists already believe -- that exercise can have a long-term impact, improving gait and reducing risk of falls, in particular.

The review measured the combined outcomes of more than 100 studies conducted over the past 30 years on the effects of exercise on Parkinson's patients. It showed that physical activity has clear benefits, specifically for strength, mobility, flexibility and balance.

The new review's author, Martine Lauze is a kinesiologist (body movement expert) who works with Parkinson's patients privately and is a researcher at the University of Québec at Montréal.

Lauze thinks the key to working with Parkinson's patients is taking a progressive approach. Perhaps people can simply start walking around the house until they're ready to walk outside. She says it's important to find the right activity for each individual, though that activity may not be perfect forever.

December 29, 2016

With Mixed Feelings, I've Stopped Taking the New Fountain-of-Youth Pill called “Basis”

That pill -- Basis -- is the first and only product so far from the new company Elysium.

In New York magazine,” journalist Benjamin Wallace calls Basis "either the most sophisticated fountain-of-youth scam ever to come to market or the first fountain-of-youth pill ever to work."

Elysium has not sought FDA approval for its product; instead, the company is promoting the pill extensively on Facebook and elsewhere as a "nutraceutical​".

I started using B​asis​​ three months ago, an unusual decision for me. I have regularly warned against taking FDA-unapproved magic pills promoted on TV by the likes of Drs. Oz and Mercola. But I was impressed by the advisory board of scientists working with Elysium, five of whom are Nobel laureates. The board also includes big names like the Mayo Clinic's geroscientist Jim Kirkland and biotech pioneer Jim Hood.

Click here for more on Basis, my decision to try it, and my initial reactions.

My Problems with Basis as a Mystery Drug
Typically, I’ll begin with half the recommended dose for any new pill, prescribed or over-the-counter. Scientists and researchers report that the elderly often are overdosed  and my experience confirms that.

 Basis comes with these instructions: "Take two (2) capsules every morning with or without food." I started with the full dosage but began to wonder if  I should take just one pill a day. Usually with questions like this I would go on the web   to see what the experience of others has been.

No point in doing that with Basis. The product has undergone only one limited clinical trial, and has thus far been used by a relatively small number of people.

December 24, 2016

Hydration and Electrolytes: Important for Everyone, Especially Old People with Parkinson’s Like Me

In this week's blog posts, we’re spending a lot of time in my bathroom.

On Monday morning, I woke up at 6:30 and -- as usual -- immediately headed for the bathroom, albeit more slowly than usual. 

My mouth felt very dry and my urine was darker than usual. These symptoms weren’t new to me; I knew they signaled dehydration. But this time, there was something else. My muscles were extremely stiff.

I stood at the bathroom sink for nearly half an hour, slowly sipping water and even more slowly attempting mini-stretches to loosen up the muscles. When I felt able, I spent the next half-hour doing my usual stretching routines.

At first, I thought my Parkinson’s was causing this uncommon stiffness. Later, I wondered if dehydration was the culprit. So I decided to do some research, and here's what I found.

Dehydration and Electrolyte Imbalance
Though anyone can become dehydrated, the condition is especially dangerous for young children and older adults. Many people, particularly seniors, don't feel thirsty until they're already dehydrated.

Dehydration is a particular concern for elderly people with Parkinson’s like me. The meds we take to help slow the progression of the disease can also raise the risk of dehydration.

Dehydration concerns more than just water. The condition can deplete the body's electrolytes. We obtain important electrolytes by eating different foods and drinking certain fluids. Electrolyte imbalance can result from a poor diet, from too much or too little exercise, and from dehydration.

What are the Major Electrolytes?
  • Calcium supports muscle contractions, nerve signaling, blood clotting, cell division, and the formation and maintenance of bones and teeth.
  • Potassium helps stabilize blood pressure, regulate heart contractions, and maintain muscle function.
  • Magnesium supports muscle contractions, proper heart rhythm, nerve function, bone building and strength, anxiety reduction, digestion, and fluid balance.
  • Sodium helps maintain fluid balance, muscle contractions, and nerve signaling.
  • Chloride supports fluid balance.

Dehydration, Electrolyte Imbalance, and Parkinson's Disease
If your electrolyte levels get too low, you could wake up one morning unable to walk. Of course, if you're a person with Parkinson’s, you automatically assume that PD is the cause.

December 21, 2016

I Must Keep Moving to Remain in Stage 3 of My Parkinson's Disease

Last month, I wrote about the five stages of Parkinson's disease (PD) and placed myself in stage three. On my good days, I might even say stage two.

But lately, I've seen some warning signs that I could be close to entering stage four. For me, the passage from stage three to stage four means saying goodbye to independent living and hello to assisted living.

In the first three stages, people with Parkinson’s (PWPs) can handle key life tasks on their own, although help from others is increasingly welcome. In stage four, PWPs become increasingly reliant on others.

I don’t have the typical PD tremor; I’m dealing primarily with the increasing stiffness and muscle rigidity, conditions that affect most everyone with Parkinson's. Should my time come to enter stage five, I’ll likely have very little use of my arms and legs. 

Last summer, I reported on the shock our Parkinson's support group members experienced when we saw a former member who had hit bottom. He sat in a wheelchair, unable to use his legs or arms. His wife/caregiver had hoped that visiting his old support group would stimulate his cognition. It didn't.

I plan to arrange my own “exit” before I reach that point.

Over the past ten years, my PD has progressed slowly. Most PWPs move gradually into stage three. But in the last two stages, decline usually accelerates dramatically. Movement becomes more and more difficult. This inactivity, in turn, creates increased rigidity and stiffness.

My ​Recent Warning Signs
I get up once or twice during the night to pee and take my PD medication (carbidopa-levodopa, the gold-standard PD med). Currently, I take one or two pills -- the extended-release variety of the med -- every three hours, up to seven times a day. My neurologists tell me I’ve reached the maximum dosage for this med.

I don't set an alarm to get me up in the middle of the night to take my pills. I just wake up about three or four hours after taking my bedtime pills. 

December 10, 2016

Can Curcumin Retard My Parkinsion’s Progress AND Generate New Brain Cells?


In my last post, I reported on a fascinating talk by a neuroscientist who explained how we can help our brains perform neurogenesis, the creation of new cells. ​She identified ten key nutrients that supported neurogenesis, and I was pleased to see curcumin on that list.

In an April 2012 post, I described my decision to start taking curcumin, the active ingredient in the Indian curry spice turmeric. Since then, I've written more about this subject than any other… with the possible exception of 5-HTP.

Curcumin vs. Coconut Oil
​M​any of those earlier posts grew out of my frustration at seeing all the hoopla about coconut oil as a "cure" for Alzheimer's -- and then, as the hype grew,​ as a cure for​ Parkinson's, too. The kicker? No scientific studies supported those claims.

On the other hand, curcumin has been the subject of more scientific studies than any other botanical​, but it hasn’t generated any publicity approaching the “coconut oil phenomenon.”

​The coconut-oil-for-Alzheimer's bandwagon finally ran out of steam in 2014. Dr. Mary Newport, that bandwagon’s drum majorette, abandoned her "miracle cure" theme in a post on her blog that was little noticed. This contrasted with the five million viewers who watched her interview on Pat Robertson's Christian Broadcast Network in the promotion of her best-selling book, Alzheimer's Disease:What If There Was a Cure?

Increasing Support for Curcumin
Interest​ in turmeric -- and its active ingredient, curcumin -- began decades ago when researchers started asking why India’s rates of colorectal , prostate, and lung cancers were so low. (Rates for these cancers in America are up to 13 times higher.) The scientists also noted that Indian peasants have one of the world's lowest rates​ of Alzheimer's. Why?

Over the years, many studies have shown that turmeric / curcumin can help prevent or treat many ailments, including:
  • a variety of cancers
  • ​inflammatory conditions
  • autoimmune problems
  • neurological ailments, including Alzheimer's and Parkinson's
  • cardiovascular disease
  • diabetes and diabetes-related neuropathy​
  • ​arthritis
  • ​depression
The main “problem” with curcumin has been its bioavailability, its ability to penetrate the blood/brain barrier. The turmeric / curcumin spice by itself has little bioavailability. But those low-Alzheimer’s Indian peasants also consume lots of black pepper, whose active ingredient piperine has been shown to significantly increase curcumin’s bioavailability.

December 6, 2016

You Can Grow New Brain Cells by Eating Chocolate and Drinking Coffee!

I've watched dozens of Ted Talks and found the one below especially interesting. 

Neuroscientist Sandrine Thuret offers research and practical advice on how we can help our brains better perform neurogenesis -- the creation of new cells -- to improve mood, increase memory formation, and prevent some declines associated with aging.

It's worth watching:


Midway in her talk, Dr Thuret briefly refers to a chart in the background that lists key nutrients  in terms of their positive and negative impacts on neurogenesis. I was intrigued by the chart and wrote down the names and rankings of the nutrients listed.Here they are:
The Good Guys
These nutrients support neurogenesis. I assume the capitalized items are the especially  good guys:

  • RESVERATROL
  • CALORIE RESTRICTION
  • BLUEBERRIES
  • FLAVONOIDS
  • INTERMITTENT FASTING
  • omega-3 - fatty acids
  • folic acid
  • zinc
  • curcumin
  • caffeine 
The Bad Guys
These nutrients appear to have a damaging effect on neurogenesis. Again, I'm assuming the ones  displayed in capital letters are particularly bad actors.

November 24, 2016

On Thanksgiving, a Special Nod to My Two Oldest Friends, My Two Newest Friends, and My Caregiving Friends

I have more genuine friends today than ever. I had many more acquaintances when I was working, and especially after I joined the AA and gay communities. I have fewer acquaintances today but more genuine friends who are loving and caring and remarkably diverse.

I have elderly friends and young friends, gay friends and straight friends, friends whose families have been in America for generations, and friends from the UK, the Netherlands, Nepal, Bangladesh, and the Gaza Strip.

I retired from BNA -- where I worked for 40 years -- almost 22 years ago. I still have good friends from those days.

I've written frequently about my friends, and I'm thankful for all of them. But I want to give special thanks today for my two oldest friends, my two newest friends, and especially my small army of caregiving friends.

My Two Oldest Friends

Jack & Marty
I had lunch last week with my two oldest friends -- Jack and Marty -- and their wives. Jack and Marty would want me to clarify that when I say "oldest" I don't mean most elderly. I’ve just known them longer than other surviving friends.

Actually, my relationship with Jack is the oldest (i.e. longest ). I've known him since 1950 when we were students at Cornell's School of Industrial and Labor Relations. We were acquaintances then, not really friends.

The real friendships date back to 1957, when we three lived in a house at 31st and Q Streets in Georgetown. The house still exists, but I think it has reverted to what it was originally: a single-family, three-story residence. When we lived there, it had been broken up into three separate apartments, one on each of the three floors of the house.

Our apartment was on the second floor. Two young women (from South Carolina, I think) rented the first floor apartment. Vola Lawson -- along with a strange woman we never got to know -- had the third floor apartment. We were all recent college graduates starting our professional lives in Washington.

The rooms in all three apartments opened onto the three-story central stairwell that was a feature of the house. This layout contributed to our feeling that we were part of a continuing, integrated house party. It was great fun, but it lasted less than two years. By the end of 1958, we had all gone our separate ways.

November 22, 2016

After That Election, What Is There to Be Thankful For? Lots! My Families Top the List.

I've always loved Thanksgiving. But this year, more than ever.

It's my favorite holiday because it's focused on family and friends without the over-the-top commercialism of Christmas. And, unlike Christmas and Easter, it's a holiday everybody can celebrate regardless of religion or lack thereof.

This happy holiday is particularly welcome this year, after 18 months of presidential campaigning that was more mean-spirited, hate filled, and divisive than anything I've seen in my 87 years.

Of course, there were some negative aspects to our earliest Thanksgiving. Here is a reminder:
I celebrated Thanksgiving in an old-fashioned way. I invited everyone in my neighborhood to my house; we had an enormous feast; and then I killed them and took their land.
– – Jon Stewart

Before writing today, I reviewed my earlier Thanksgiving posts. They tell you more than you could ever want to know about my families. This time, I'll just give you a few updates on my three families:
  • my genetic family,
  • my Kathmandu family, and
  • my Pokhara family.

The Schappi Family in China
My genetic family includes son Todd and daughter Ann; Todd's three offspring: Jessie, Emily, and Colin; Jessie's four children: Kaylee, Mckenzie, Camden, and Hannah; and Emily's two children: Emarie and Emyra.

I've commented before about my good fortune that we all live in the Baltimore-Washington area. This week, many of my contemporaries are traveling all over the U.S. -- even the world -- to celebrate Thanksgiving with their far-flung families. With one exception, all of my family will celebrate the holiday at my son's house near Frederick, Maryland -- about an hour’s drive from my house.

November 12, 2016

What's the Cause of My Recent Energy Surge? Maybe it's the New "Anti-Aging" Pill.

In my last post, I described my new routine -- trying to do stretches and exercises throughout the day. And on most days, I am also making the half-mile downhill walk I described in an earlier blog post. 

I'm an 87-year-old man who should have been diagnosed with Parkinson's 10 years ago. Most people my age – and most long-term Parkinson's patients – are usually just too tired to get the kind of exercise I’m enjoying these days.

I haven’t always had this kind of energy, either.

Several causes of past extended fatigue come to mind:
  • my “summer from hell” years ago,
  • my shingles attack last spring,
  • Washington’s record-breaking summer heat and humidity.

These past weeks of pleasant fall weather have certainly given me an energy boost, too. It just feels good to be outside.

So… the stretching, the exercises, the walking, and the autumn weather have all contributed to this recent burst of energy and activity. But there’s something else – the new "anti-aging” pill I started taking over a month ago. 

It's very strange for me to tout something like this. I’ve frequently urged others not to fall for the magic pill hype we occasionally hear from TV hucksters like doctors Oz and Mercola.

Yet here I am, promoting a dietary supplement I ordered online without a prescription. Here’s the pillbox description: "a daily health product designed to optimize and support your most critical metabolic systems," including
  • "DNA repair"
  • "cellular detoxification"
  • "energy production" and
  • "protein function." 

The pill is called “Basis,” the only product so far from Elysium, a new company. In “New York" magazine,” journalist Benjamin Wallace calls it "either the most sophisticated fountain-of-youth scam ever to come to market or the first fountain-of-youth pill ever to work."

November 10, 2016

I No Longer "Exercise." I Just Keep Moving.

Maybe I’m playing name games with “exercise” and “moving.” But I feel like what I started doing recently may really be slowing down the progress of my Parkinson’s disease (PD).

In the past, I’d tell myself "You need to exercise!" I'd think about scheduling 30 minutes later in the day and I’d wonder: Should I play one of my exercise videos or work out a program of my own, using my collection of printed exercise instructions?

I was pretty good about doing some type of exercise, convinced it was treating my PD at least as much as my meds. If I was a good boy, I’d exercise four or five days a week.

In time, I figured out which body movements from the videos and printed instructions seemed to help most. During the past several months, I’ve mostly “winged it,” avoiding the videos and printed materials, and instead spontaneously creating my own “routines” of stretches and movements that have proved helpful.

My home gym from the start has been my bedroom. The equipment? The bathroom sink, the railing at the bottom of my bed, and the Harvard chair. But now I exercise throughout the house and throughout the day. The kitchen has become a favorite venue. I use the counters and sink for stretching and doing standing push-ups. I get to work as I wait for the microwave oven bell to tell me lunch or dinner is ready.

Today, I ate lunch standing at the table in my upstairs office, where I keep a small refrigerator and microwave. While eating my Trader Joe's "Thai-style citrus chicken salad," I marched in place.

Before sitting in any chair in the house, I do some stretches. While seated, I try – but often forget -- to do some of those seated exercises I've learned.

November 6, 2016

Are the Meds You’re Taking Really Appropriate? A Reference for Older People

Most medications – both prescription and over-the-counter -- are not tested on older people. Nobody knows for sure what dosages are really appropriate for this demographic.

I've written about the subject before. I've noted that I usually begin with half the recommended dosage shown on the pill bottle whenever I start a new med.

Last week, I stumbled across a report on the internet that referenced an important source of information about the effects on older people of many well-known medications: the American Geriatrics Society's 2015 updated Beers criteria for potentially inappropriate medication use in older adults. Turns out it’s one of the most frequently cited reference tools in the field of geriatrics.

"As we grow older, at least one in six of us is likely to experience serious side effects directly related to the medications we take," said Todd P. Semia, co-chair of the AGS Beers criteria panel.

The main table in the Beers criteria includes a list of potentially inappropriate medications for most older adults. When I examined that list, I found one of my own prescribed meds on it -- nifedipine. My blood pressure (BP) doctor prescribed this drug for me to use when I get temporary BP spikes during my “off periods,” when the carbidopa-levodopa I take for Parkinson's disease is wearing off.

For all the potentially unsafe medications, the table shows the recommendation, the quality of the evidence supporting the recommendation, and the strength of the recommendation. For nifedipine, the recommendation was to avoid it; the quality of the evidence was high; and the strength of the recommendation was strong.

I'm not too concerned about this particular "red flag," since I take nifedipine only as needed, and never more than 1/3 of a pill. However, I had been taking it more frequently these days, since I'm trying to cut back on the carbidopa-levodopa... a reduction that can lengthen my off periods and raise my BP. 

November 1, 2016

The Five Stages of Parkinson's Disease and Me

Parkinson's disease (PD) strikes people in many different and idiosyncratic ways, leaving them to experience a broad range of symptoms. While those symptoms may be mild or severe, and while they may occur frequently or infrequently, PD appears to have five different stages. The time spent at each stage varies. And skipping stages – like moving from stage one right into stage three, for example -- is not uncommon.

Here are the five stages:

Stage one: During this initial phase of the disease, a person usually experiences mild symptoms, such as tremors or shaking in a limb. During this stage, friends and family can usually detect changes -- such as poor posture, loss of balance, or abnormal facial expressions.

I didn't have the tremor, and I still don't. The most noticeable clue was that my right arm would no longer swing freely. Observing this rigidity, my kids urged me to see a neurologist.

Stage two: In PD’s second stage, the person’s symptoms are bilateral -- affecting both limbs and both sides of the body. The person usually encounters problems walking or maintaining balance. Difficulty completing normal physical tasks becomes more apparent.

For me, the stiffness and rigidity mainly affected my right arm at the outset. While I now experience some malaise on my left side, the right arm remains the most affected limb.

Stage three: In stage three, symptoms can be rather severe, and may include the inability to walk straight or to stand. There is a noticeable slowing of physical movements during this stage.

Stage four: This stage of the disease is accompanied by severe symptoms. Walking may still be possible but is often limited. Rigidity and bradykinesia -- a slowing of movement -- are often visible. During this stage, most patients are unable to complete daily tasks, and usually cannot live on their own. The tremors or shakiness -- characteristic of the early stages of the disease -- may lessen or even disappear for unknown reasons.

October 30, 2016

Identifying Five Different Types of Parkinson's May Lead to Varying Treatments

I'm a member of the online discussion forum sponsored by HealthUnlocked for people with Parkinson's disease (PD). I wish I had more time to spend exploring the site and participating in some of the discussions. But I monitor it regularly because I often find useful information.

For instance, one of the members recently shared an interesting video of a talk by Dr. Michelle Hu from the Oxford Parkinson Disease Center. In that video clip, Dr. Hu describes how the center's work led to identifying five different types of PD.

Parkinson's is a uniquely heterogeneous disease. As a member of a weekly Parkinson's support group for the past seven years, I've been struck by the wide variety of ways in which the disease manifests itself.

Yet all too often the medical profession adopts a one-size-fits-all approach to treatment. Dr. Hu hopes that identifying PD patient subtypes will lead to more individualized -- and effective -- treatments.

The Oxford researchers identified about 700 patients recently diagnosed with PD. They were assessed according to:
  • Psychological well-being -- apathy, pain, fatigue, anxiety, depression.
  • Non-tremor motor features -- stiffness, rigidity, speech, balance, swallowing.
  • Memory and cognitive features

Five Types of Parkinson's Patients
Analysis of the data resulted in identifying these subgroups:
  1. Patients who were generally doing pretty well with only mild motor and nonmotor symptoms (30 percent)
  2. Patients with poor posture, gait, sense of smell, and poor memory (22 percent)
  3. Patients with severe tremor problems but otherwise okay (24 percent) 
  4. Patients with poor psychological well-being, and rapid eye movement sleep disorder (15 percent)
  5. Patients with severe motor and nonmotor disease and poor psychological well-being (10 percent)
If I had been tested by the Oxford researchers early in my PD, I'm sure I would have been classified as group 1.

I found Dr. Hu's talk interesting. Here it is:




October 27, 2016

The Barnes Museum: More Is Most Definitely Less, IMHO

I put my current feeling of revived energy and spirit to a real test this past Wednesday. With lots of trepidation, I had signed up for a one-day chartered bus excursion to Philadelphia to see the Barnes Museum, which opened a few years ago to house the incredible art collection owned by the Barnes foundation. 

The trip was sponsored by our neighborhood Palisades Village and several other "villages" in Northwest Washington. These villages are found in urban communities throughout the U.S. where older residents band together to help elderly neighbors "age in place."

My pal Marianne picked me up at 8:45am. We drove to the parking lot for DC's Lord & Taylor store where we boarded our bus for the three-hour drive to the museum in Philadelphia. 

We spent almost five hours at the museum. I got home about 9:30pm, pretty exhausted... but pleased I'd gotten through the long day without any real trouble.

Background on the Barnes Collection

The Barnes Foundation was begun in 1922 by Albert Barnes, a wealthy scientist who collected what is now considered an incomparable collection of post-impressionist and modernist art. 

Valued at about $25 billion, the collection includes 181 Renoirs, 69 Cezannes, 59 Matisses, 46 Picassos, 16 Modiglianis, and seven van Goghs. Barnes collected this European art before it was popular in America, and he collected the best of the best. With the help of educational philosopher John Dewey, Barnes founded the Barnes Foundation as an educational facility in Merion, PA, near Philadelphia. 

The Barnes collection was primarily used as an impressive teaching aid for students. The Foundation admitted a limited number of public visitors two days a week, but visitors were second-class citizens compared to the students.

Barnes protected his vision for the collection in his will. The art could not be sold, reproduced, loaned, or traveled. The school would continue. There were slight concessions to public visitation, resulting in attendance of about 60,000 per year.

October 25, 2016

My Prostate Cancer: I Wish I'd Chosen "Active Surveillance" -- not Surgery -- in 1995

Most men in Sweden with low risk cancers are now opting for surveillance rather than quick invasive treatment… and more American men should make that same choice, according to a recent report.

Combined with my personal experience, this news is just the latest in a series of reports that have convinced me that the quality of my life would have been greatly enhanced if I had not decided to have surgery after my 1994 prostate cancer diagnosis.

Study of Men in Sweden
In a study of nearly 33,000 Swedish men diagnosed with very low risk (stage T1) prostate cancer between 2009 and 2014, those subjects who chose “active surveillance” increased from 57 percent to 91 percent during those years.

"For men who were diagnosed with low risk prostate cancer, it is important to know that active surveillance is an accepted way to manage the cancer," said lead researcher Dr. Stacy Loeb, assistant professor in the urology department at NYU's cancer center in New York City.

"There is no rush to get treatment -- low risk prostate cancer can be safely monitored," she said. "Some men will eventually need treatment, but others will be able to preserve their quality of life for many years."

In the United States, the majority of men with low risk prostate cancer choose speedy treatment, which can have side effects like urinary and erectile problems, Loeb said.

I can confirm that.

Active surveillance isn't wait-and-see, she explained. It involves regular blood tests and biopsies to gauge growth tumor growth. Should those tumors grow to the point where treatment becomes necessary, then it's time for surgery or radiation.

British Report on Risk of Dying
A recent British trial showed that ten years after men were diagnosed, the risk of dying from prostate cancer was the same whether they initially chose monitoring or opted for surgery or radiation, Loeb said.

October 23, 2016

Updates on My Peripheral Neuropathy and So-Called Orthostatic Hypotension


I was diagnosed with Parkinson's disease (PD) in September 2009, seven years ago. I should've been diagnosed several years earlier, but I’ve never had the tremor -- so characteristic of the disease – that makes early diagnosis easier.

I'm 87 years old, and I’ve probably had PD for 10 or more years. In light of those realities, I'm not doing too badly.

You wouldn't have gotten this upbeat assessment a couple months ago. The attack of shingles in March was a discouraging setback, compounded by Washington's hottest summer in history. Our founding fathers made a lot of brilliant decisions, but building the nation's capital in a swamp wasn’t one of them. With each passing year, I find it increasingly difficult to deal with the summer heat and humidity here. When those numbers go up, my energy goes down. There were even times this past summer when I was barely able to stagger around the house.

It's a different story today. I just took a break from the computer and asked my housemate Nimesh to drive me to the top of the hill on the road leading down to our house. I then got out of the car and took the half-mile walk down to our house… a stroll I take most every day now that the weather has changed.

In my last blog post, I ran a video of me taking this walk. Being able to walk half a mile downhill probably doesn't sound like much of an accomplishment to you. But it is for me.

Treatment of My Peripheral Neuropathy
In September, it occurred to me that my walking difficulties might not simply be a result of my Parkinson’s. I wondered: Might some undiagnosed peripheral neuropathy (PN) be a contributing cause? My neurologist ran some tests, which – sure enough – revealed a moderate to severe case of PN. The accompanying blood work showed a vitamin B12 deficiency, typical for people with PN. My doctor recommended a daily 1000mg dose of vitamin B12. Within a few days, I was feeling ready to take my down-the-hill walk.

It could well be that I’ll see even more improvement in the future. I had forgotten that the blood work also showed a significant surplus of vitamin B6 (my 58.5 ng/m was way above the normal 2.1 to 21.7 ng/m range). So I stopped taking a B-Complex supplement and now hope to see even more improvement.

October 22, 2016

My Blog Holiday

I'm back.

I haven't posted anything for almost three weeks, the longest holiday I've taken since starting this blog seven years ago. I needed the break.

For me, the new year begins in the fall. For 20 years as I moved from childhood to adulthood, the fall was the start of the school year… the center of my life in those days. I guess I haven't really shaken that pattern.

My recent blog-free weeks were like a summer vacation. And where did I go on my summer vacation? To Facebook, to follow the commentaries on this horrible presidential election. Not a happy vacation destination choice.

I could also look at the past few weeks and think that I took sick leave – not vacation time – for about half of every day.

Why? Starting sometime in September, I've been leading a double life.

For the first half of each day, I feel pretty good. Then about mid-afternoon, unwelcome changes set in. My mood darkens, and by bedtime, I often feel seriously depressed.

October 9, 2016

Vitamin B12: Treating My Peripheral Neuropathy?


Back in March, I started a new exercise routine. I'd ask whoever was driving me around on errands to let me off at the top of the hill leading down to my house. Then I'd walk home down the hill -- about 1/2 mile -- without using my cane or walker. OK, it's not a marathon, but it was great exercise for me.

Then came the shingles attack, followed by the Summer from Hell, when Washington's heat and humidity left me with barely enough energy to walk around the house.

Even with September's cooler weather, I still didn't feel up to this challenge. But in the past week, I began taking the 1000mg of vitamin B12 prescribed by my neurologist to deal with my newly diagnosed peripheral neuropathy (http://bit.ly/2dqEa7p.) Within a few days, my gait seemed to improve, so I decided to see if I could resume making this downhill walk after a six-month hiatus.

I was delighted to discover I could. This past week, I've taken the walk four times. Last Thursday, I had a doctor's appointment just over the District line in Bethesda, Maryland. I was feeling good, so I decided to walk the three or four blocks to the District line. Encouraged, I kept walking another five blocks before I finally called Uber. But I recovered quickly on the ride home, and even asked the driver to let me out so I could make that familiar downhill stroll back to the house.

October 2, 2016

Peripheral Neuropathy: An Overlooked Adverse Effect of Long-Term Use of Carbidopa-Levodopa for Parkinson's

“Did we miss something? Is it conceivable that for 40 years we have overlooked an insidious long-term levodopa treatment adverse effect, such as neuropathy, in idiopathic Parkinson's disease?" -- from the online journal "Neurology

"This intriguing study demonstrates a somewhat unexpectedly high prevalence of peripheral neuropathy in Parkinson's disease patients…. Peripheral neuropathy in Parkinson's disease could substantially contribute to gait disturbances and disability in some patients with Parkinson's, and prevention of peripheral neuropathy would be an important advance." -- from the online journal "Medscape

Toward the end of this past “Summer from Hell,” I started to wonder if some of the malaise I was experiencing might be due to something other than Washington's summer heat and humidity. As I mentioned in a recent post, one of my questions was: “Might I be experiencing peripheral neuropathy (PN)?"

A test last month by my new neurologist confirmed that I did have PN. Blood work also showed a vitamin B12 deficiency, not unusual for people with PN.

Normal values for vitamin B12 are 200 to 900 picograms per milliliter (pg/mL). Older adults with vitamin B12 levels between 200 and 500 pg/mL may also have signs of vitamin B12 deficiency. My reading was 346 pg/mL

When I started researching this subject, I was surprised to find studies like the two cited at the top of this post. I hadn’t known that Parkinsonians like me who are longtime users of carbidopa-levodopa (brand name Sinemet) often end up with peripheral neuropathy.

September 19, 2016

My Kathmandu Family Returns to Nepal To Celebrate Nivah's "First Feeding"

As I wrote in my last post, my love affair with Nepal -- which started in 2001 -- has generated two sets of relationships that are so close and loving that I think of them as my "Pokhara family" and my "Kathmandu family."

Last time out, I gave an update on the Pokhara family. So today here's:

My Kathmandu Family
This family connection was born in a bookstore in Thamel, Kathmandu's tourist district. All my trips to Nepal -- over a dozen of them -- began and ended with a few days in KTM.

Every day I was there, I'd buy the latest edition of the International Herald Tribune at the same family-owned and operated bookstore.

I got to know the family quite well. The younger son, Nimesh, came to the U.S. to attend Truman University in Kirksville, Missouri. He worked in Ocean City, Md. during his college summers and often spent a few days at my house on his travels back and forth.

After getting his undergraduate degree at Truman, Nimesh enrolled in an MBA/Finance program at American University. AU is within walking distance from my house. So Nihesh stayed here.

He continued to reside here at the house as he began a career at the World Bank in downtown DC, an easy commute from the house.

From Friends to Family
Through these years, Nimesh and I became good friends. But I didn't think of us as family. That relationship began in March, 2012, when Nimesh married Bhawana in a traditional Nepali/Hindu ceremony in Kathmandu.

This was also a traditional marriage, since their parents had made the initial arrangements. But there was a modern twist: both sets of parents encouraged the couple to spend a lot of time getting to know each other. The parents said they wouldn't insist on the marriage if the prospective bride and groom didn't feel it would work.

Bhawana was finishing up her studies in an MBA/Finance program at the University of Wales satellite school outside Mumbai. She and Nimesh spent hours talking on Skype. As this picture shows, the arranged marriage became a love marriage.


Often during those happy festivities, I was treated like a member of Nimesh's family. One of the first things that happens in Hindu weddings is the trip that the groom makes to the wife's home for the "engagement." For upscale weddings in India, the groom often makes this trip riding an elephant.

September 16, 2016

My Pokhara Family's Comings and Goings

As readers of this blog know, I've had a 15-year love affair with Nepal and its people. It started with my first visit to Nepal in March, 2001. My London pals Terry and Patrick and I added a few days in Nepal at the end of our tour of India in February, 2001.

Our brief time in Nepal was divided between Kathmandu -- the crowded, bustling capital -- and Pokhara, the beautiful lakeside city surrounded by snow-capped mountains. Pokhara is the jumping-off point for treks in the Annapurna mountains.

I maintained email contact with several people I met on that trip. One of them, Ramesh Pariyer, invited me to return to Nepal in the fall and accompany him to his mountainside village for the celebration of Dashain, the country's biggest, longest, and most auspicious festival.

That journey was the most memorable and enjoyable trip in a lifetime filled with travel adventures. I returned to Nepal at least once -- usually twice -- every year until 2008, when my Nepal connection began to shift into reverse as more and more of my Nepali friends relocated to the U.S.

I now have many Nepali friends here and back in Nepal. Two of those local relationships have become so close that I think of them as my Pokhara family and my Kathmandu family.

Here's the Pokhara family enjoying an outing with me on the island in Pokhara's Lake Fewa. Left to right are Laxmi, Rahil, Ramesh, and the aging "white monkey," a moniker given to Westerners by some Nepalis.


And here they are more recently. The family is wearing Nepali attire, but the photo was taken near their apartment in Washington's Maryland suburbs. Above, Rahil was all dressed up to celebrate his third birthday. Below, he's as tall as his parents:


A Sad Farewell
Here's a shot taken a few weeks ago in my home office. With me are Ramesh's parents, who -- in their first trip outside Nepal -- had spent several months visiting Ramesh and his family in Maryland.

September 6, 2016

Peripheral Neuropathy and Parkinson's and Me

When I was diagnosed with Parkinson's disease (PD) in September 2009, my doctor prescribed the gold standard med -- carbidopa-levodopa (brand name Sinemet).

At first, I took two pills of the regular carbidopa-levodopa 25-100 three times a day, and the dosage has increased several times since then. Now, I take two pills of the extended release carbidopa-levodopa 25-100 seven times a day.

My disease no doubt will continue to progress, but I’ve reached the maximum recommended dosage of the drug. Recently, I've noticed that the Sinemet isn’t working like it used to. My "off periods" between doses have increased, and I certainly don’t walk as well as I did six months ago.

In addition, I'm having more frequent incidents of orthostatic hypotension and strange flare-ups of incontinence. Washington’s summer heat and humidity bother me more than ever, and -- for the first time -- I'm experiencing occasional bouts of depression.

I'm not a happy camper. Questions abound.

Is some of my malaise due to the lingering effects of my shingles attack? Since I’ve clearly had PD for at least ten years, are these troubling developments simply signs that the disease is moving into its final stages? 

Are things going on that my doctors and I haven’t yet identified?

Peripheral Neuropathy
That last question brings me to today’s topic. In rereading some of my medical records, I was reminded that one of my PD doctors had wondered whether I was experiencing peripheral neuropathy (PN) in addition to Parkinson's disease.

A Google search on PN produced this info from the Mayo Clinic:
If autonomic nerves are affected, signs and symptoms might include:
  • Heat intolerance and altered sweating
  • Bowel, bladder or digestive problems
  • Changes in blood pressure, causing dizziness or lightheadedness
I certainly recognize those bullet points.

September 5, 2016

Happy Days Are Here Again... Temporarily

Over this Labor Day weekend, we're finally getting a break from Washington's Summer from Hell. We have enjoyed a few days with high temperatures reaching only the low 80s, and nighttime lows in the 60s. But come Tuesday, the temperature is expected to climb back into the 90s, and by Friday we may be up close to 100 again.

But this respite -- and my response to it -- encourages my hope that my energy and spirits will rise when the temperatures finally drop. On Saturday afternoon, I spent more time on my back porch than I had over the past two months.

And more enjoyable time, too. I must've spent an hour watching a deer with a full set of antlers feeding on my Joe Pye Weed foliage, drinking from the waterfall in my pond, and settling down on the path in the back of the yard for a siesta.

As you'll see, my photography won't win any prizes. Fortunately, the finger I had over my iPhone's lens didn't completely ruin this shot of the deer emerging to drink from the waterfall.


Throughout this encounter, I wished I'd learned how to capture close-ups.


I got off my back porch rocking chair and out into the yard to see how close I could get to the resting deer.

September 1, 2016

Parkinson's Nonmotor Symptoms

Earlier today, I shared a terrific article from September‘s Mayo Clinic Health Letter, which provided an excellent overview of Parkinson’s disease (PD). I was especially interested in the information about the "support drugs” that might enhance the effectiveness of carbidopa-levodopa (Sinemet), the current gold standard med for treating PD.

As a follow-up, I want to share another Mayo piece about the flip side of PD -- its nonmotor complications. I’ve written often about this subject, especially how the serotonin-boosting over-the-counter supplement 5-HTP has helped me deal with three common nonmotor issues people with Parkinson’s often experience: depression, insomnia, and constipation.

Here’s that article.

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LIVING WITH PARKINSON'S NONMOTOR PROBLEMS

When most people think of Parkinson’s disease, the signs and symptoms that come to mind are movement (motor) related, such as tremor, slowed movement and rigid muscles.

However, there’s another side of Parkinson’s symptoms — nonmotor symptoms. It’s increasingly recognized that nonmotor symptoms or complications may be as prominent as movement-related symptoms in the effect Parkinson’s has on your life. The good news is that many of these nonmotor symptoms are treatable or manageable. Treating them can have a major impact on how active and independent you can remain as you manage the progression of Parkinson’s disease.

Taking Action
It’s important for your doctor to determine if nonmotor symptoms may be related to dopamine drugs used to control movement symptoms. If so, fine-tuning your dopamine drug regimen may be an option for improving many nonmotor symptoms. Sometimes, this works with no unwanted effects.

However, there’s a balance point where benefits of adjustments must be weighed against the downside of possible decreased movement control.

Excellent Mayo Clinic Update on Parkinson's Disease and its Latest Therapy Options

I subscribe to many health newsletters. These two are my favorites:

This month’s issue of the Mayo Clinic Health Letter leads off with one of the best descriptions I’ve seen of Parkinson's disease (PD) and its treatment. I was going to summarize the article but decided to run it in full, below. 

I didn't learn anything startlingly new from the article. But the section on supportive drugs used to extend the benefits of carbidopa-levodopa -- for those of us with more advanced PD -- reminded me it was time to check some of them out. 

Here's the full text:

PARKINSON’S DISEASE: FOLLOWING THE CHANGES

Parkinson’s disease is widely recognized but poorly understood by most people. It seems to be a bad disease, but then many people who can have it appear to be doing fairly well.

However, Parkinson's disease signs and symptoms progressively worsen, and the beneficial response to drug therapy is likely to diminish. In addition, Parkinson's disease can result in numerous other health problems — such as dementia, bladder and bowel difficulties, and sleep trouble. Working closely with your doctor can help you stay abreast of standard and newer treatment options as signs and symptoms change for you over time. It's true that people diagnosed with Parkinson's disease — most of whom are 60 or older — typically have many more active and productive years of life ahead of them. Drug treatment aimed at managing the better-known signs and symptoms such as tremor and difficulty with movement is often very effective for years.

Lost connections
The primary process that causes Parkinson's disease signs and symptoms is when dopamine-producing nerve cells in the brain die prematurely. Brain cells communicate with each other through chemical messengers called neurotransmitters. Dopamine is one of the main neurotransmitters in the brain.

In a healthy brain, ample dopamine is produced so that the brain cells can coordinate smooth and precise muscle movements. However, when dopamine-producing cells are lost, brain cells communicate abnormally with muscles, which can lead to impaired body movement.

August 28, 2016

Selecting a New Doctor? Here's How I Decide.

This year, I've changed my two most important doctors: my primary care provider and my neurologist. 

Here, in no particular order, are some of the factors I kept in mind while making those decisions.

Office Location
In light of my age (87) and my Parkinson's disease, the closer the office is to my house, the better. I'm fortunate to live in the Palisades section of Washington ("country living in the city" is how we describe it), where many doctors practice from several small office buildings (and most of these docs know one another – another advantage). Whether I use Joey (my part-time driver) or Uber, it’s a snap getting to these offices within 10 minutes.

My dentist and my dermatologist have offices just over the DC line in Chevy Chase, MD, and getting there is almost as easy. When I have to make trips to doctors’ offices in downtown DC -- along the K St. corridor or around Washington Circle -- it's more of a hassle.

Hospital Access
When I have to go to a hospital for tests or other reasons, I prefer Sibley Hospital. It’s the closest to me, and the only Washington DC hospital that earned three stars in Medicare's recent rating of hospitals. The neighborhood doctors I’ve chosen are more likely to use Sibley. I liked this facility best when it was a small, independent hospital, before it became larger, more crowded, and more bureaucratic as part of the Johns Hopkins network.

Doctors Affiliated with Hospitals
Several of the doctors I've used recently are affiliated with either Georgetown University Hospital or George Washington University Hospital. I've come away with the feeling that these doctors tend to be clock-watchers, eager to keep our visits as short as possible. I've talked with other people who’ve developed similar impressions of hospital-affiliated doctors.

Office Ambience
OK, call me an elitist snob, but I prefer walking into a doctor's office with a nice comfortable reception room and a receptionist who greets me with "Hello, Mr. Schappi." It doesn’t happen very often, which is probably why it makes such a positive impression on me when it does.

August 27, 2016

"Why me? I'm a general neurologist, not a Parkinson's specialist."

I decided to switch to a new neurologist.

When I had my first meeting with her, she began our visit with the question and comment above. We were off to a good start because she immediately got us sharing our views about the doctor-patient relationship.

After my 2009 Parkinson's disease (PD) diagnosis, I worked with a neurologist in the Parkinson's unit at Georgetown University Hospital. After a while, I switched to neurologist at George Washington University Hospital. Why? A PD neurologist at the Parkinson’s and Movement Disorders Center of Maryland (a clinic affiliated with Johns Hopkins University) thought the Georgetown doctor was overdosing me on carbidopa-levodopa (Sinemet), the key PD med.

All three of those doctors had an issue with my use of 5-HTP, the over-the-counter supplement that boosts serotonin and -- when combined with the carbidopa in Sinemet -- has a potential for increasing my blood pressure (BP). The Georgetown doctor listened… and accepted my explanation that 5-HTP warded off PD’s most common non-motor side effects: insomnia, constipation, and depression. The other two neurologist didn't pay much attention to my case for 5-HTP. I felt like they conveyed these messages:
  • They were in charge of my treatment plan, not me.
  • I should stop taking the supplement I knew worked so well for me.
  • I needed to continue with my blood pressure meds.
How I Explained My Pressure Spikes
My high BP readings they saw in their offices convinced them that I needed BP meds. They seemed indifferent when I explained that the readings I took on my own monitor at home usually fell within the new guideline of 150/90 for people aged 60+. And they didn’t seem especially interested in my observation that my BP spiked
  • during my PD “off periods," and
  • when I was in their offices (the common “white coat syndrome”).
I probably would have been beaten into submission were it not for my BP doctor, who worked with me on sticking with the 5-HTP while finding other ways to deal with the BP spikes. I told him I’d seen reports that some doctors thought that people aged 80+ without coronary issues could discontinue taking blood pressure medication altogether. As we discussed alternatives, he said, "I won't lose any sleep if you decide to stop taking the meds."

August 25, 2016

Dealing with Depression: Beet Juice Helps, but Nothing Beats Exercise

Last week, I began experiencing bouts of depression that were unusual for me. I was also seeing an uptick in my blood pressure (BP) readings, which was not unusual for me; for years, I’ve been on a BP roller coaster ride, with numbers all over the place. Those extreme pressure variations – with the consequences they bring – has been a regular theme on this blog.

I had used beet juice in the past to manage BP spikes, so I decided to give it another try last week. I drank my first glass of juice with coffee at my usual afternoon "happy hour." Then, about an hour later, I realized my mood was significantly brighter. When the same thing happened the next day, I decided to Google "depression" and "beet juice." 

Beet Juice and the Brain
I found reports that linked the two. Beet juice is a source of nitrates which have been shown to dilate blood vessels, increase blood flow to tissue, reduce demand of muscles for oxygen, and inhibit blood clots. Beet juice also is rich in red-yellow pigments called betalains, which display potent antioxidant activity. Beets are a good source of potassium and folate, both of which help regulate BP. 

Here are the two most-cited studies about beet juice:
  • study from Wake Forest University found that older people who drank 16 ounces of beet juice a day for two days showed greater blood flow to the frontal lobe of the brain, an area involved in skills like planning and problem-solving. A part of the brain particularly affected by Parkinson's, the frontal lobe is also associated with dementia and poor cognition.
  • 2015 study of beet juice and blood pressure found that older adults who drank a daily cup (eight ounces) of beet juice lowered their systolic pressure (the upper reading) by eight points on average, and their diastolic pressure by two to five points over four weeks. Results also showed Improvements in blood pressure functioning and arterial flexibility.

My Observations
I've continued to experience mood improvements after drinking beet juice. But I've also found that increasing the time I spend on tai chi and other exercises has an even greater impact on the depression.

August 18, 2016

Health Pot-pourri: Reading, Whole Grains: Yes. Antioxidant Supplements: Maybe Not

I subscribe to a dozen or more print newsletters about health care, and I get as many regular news updates in my email inbox. I make occasional reports like this one when I find items of particular interest.

Read Books, Live Longer?
Reading books is tied to longer life, according to a new report. Researchers used data on 3,635 people aged 50+ who had already answered questions about reading as part of a larger health study.

The scientists divided those people into three groups:
  1. those who read no books,
  2. those who read books up to three and a half hours a week, and
  3. those who read books more than three and a half hours every week.

Published in Social Science & Medicine, the study found that book readers tended to be female, college-educated and more affluent. Researchers then controlled for those factors as well as age, race, self-reported health, depression, employment, and marital status.

Compared with study subjects who did not read books, those who read for up to three and a half hours a week were 17 percent less likely to die during the next 12 years, while those who read more than that were 23 percent less likely to die. On average, people who read books lived almost two years longer than those who didn't.

Senior author Becca R. Levy, a professor of epidemiology at Yale, said the "survival advantage remained after adjusting for wealth, education, cognitive ability and many other variables."

Study leaders found a similar association among readers of newspapers and periodicals, but it was weaker. 

I need to get back to my bedside copy of The Boys in the Boat.

Eat More Whole Grains
If you want to live longer and healthier, you might want to munch on a slice of whole grain bread while sitting in your rocking chair reading a book.

August 15, 2016

Controversy over Medicare's New Hospital Ratings

Earlier this month, Medicare released its first comprehensive rating of hospitals. That review slapped average or below average scores on many of the nation's best-known hospitals, and awarded top scores to dozens of unheralded ones.

Medicare assigned one to five stars to the 3617 hospitals it reviewed. Only 102 hospitals got the top five-star rating, and very few of those are among the nation's best according to private rating services, like the one from U.S. News & World Report. In addition, very few of Medicare’s top picks are viewed as particularly elite by the medical profession.

Instead, five stars were awarded to relatively obscure hospitals, and to at least 40 hospitals that specialize in just a few types of surgery, like knee replacements.

Nearly half the hospitals -- 1,752 of them -- received average three-star ratings. Medicare gave the lowest one-star rating to 129 hospitals. In my hometown of Washington DC, five hospitals received only one star, including George Washington University Hospital and MedStar Georgetown University Hospital, both of which teach medical residents.

I was pleased that the top rating for a DC-based hospital (3 stars) went to Sibley Hospital (now affiliated with John Hopkins).  It is the hospital closest to me and my first choice when I have to pick a hospital to get tests or other procedures done. A few of the hospitals in D.C.'s Maryland and Virginia suburbs did get 4 and 5 star ratings. 

Medicare based its ratings on 64 individual criteria, including patient reviews and rates for death and infection. All criteria are shown on Medicare's Hospital Compare website.

The Trade Association Reacts 
In a statement, the American Hospital Association characterized the new ratings confusing for patients and families: "We are especially troubled that the current rating scheme unfairly penalizes teaching hospitals and those serving higher numbers of the poor."

Medicare acknowledged that hospitals treating large numbers of low-income patients tended to do worse in the ratings, which didn’t consider patients’ social and financial situations.

August 10, 2016

"Smart 911" -- Signing Up Is a Smart Move

Today I received an email from my Palisades Village with the August newsletter. It included information about “Smart 911,” which I’d never heard of before. It sounds like a great idea, and I just spent about half an hour signing up and entering my personal data.

I've placed 911 calls several times in the past few years. This new service will give 911 responders instant access to my medical information. During an emergency, it might be difficult – or impossible -- to provide that important information.

Our community newsletter described the service – and the sign-up process – very clearly, so I'll just reproduce it here.

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Smart 911 is a free service that allows a participant to create a safety profile that will be provided to 911 responders in the event of an emergency. A call to 911 from any of the phone numbers listed on the safety profile will automatically display the safety profile information to the 911 call taker. Smart 911 allows safety profiles to be created for all the individuals associated with the phone numbers listed on the profile. This system can be invaluable in an emergency by giving emergency responders instant access to medical and safety information.

To sign up for Smart 911, go to https://www.smart911.com. Signing up is relatively straight forward; if computers are alien terrritory, enlist a computer literate friend to help you with the process (there is no option for signing up by telephone). The online system will ask you to input your name, email, user ID, password, phone number(s), and address. You must verify your phone number by following the instructions on the screen; once you click on the verification "button," you will get an almost instantaneous call back on your phone, and will have to press "1" to complete the verification process.
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