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.