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.

<> <> <> <> <> <> <>

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

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

This is the fifth in a continuing series about sleep.

<> <> <> <> <> <> <>

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.

<> <> <> <> <> <> <>

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:

<> <> <> <> <> <> <>