Category: Medicine

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When Mom & Dad go wandering: dementia on a relentless rise

by Fran Johns

“MISSING,” the sign reads. “Distinguished-looking elderly man. 6′ 1” slightly stooped. Gray hair. Wearing dark blue sweater and gray slacks. Name: George; does not always respond. Suffering from mild dementia. Wandered away from the Laurel Village shopping center area. Please call 415-xxx-xxxx with any information.”

The sad, 8″ x 10″ flyer has appeared (once the words were slightly different, but it was clearly the same George) at the bus stop near my home twice in recent months. I kept the number in my wallet for a while, hoping I might spot him because I walk the city myself. But the difference is that I have on a warm jacket — it’s way too cold in San Francisco, especially after dark, for only a sweater — and I know how to get home.  I have wanted to call the number and learn whether George got home, but it seems intrusive.

Last year for the first time, as reporter Kirk Johnson writes in The New York Times, people like George and a 60-year-old Virginia woman named Freda Machett accounted for more missing-person alerts than children and adolescents. They are confused and lost, and often are not found in time.

Ms. Machett, 60, suffers from a form of dementia that attacks the brain like Alzheimer’s disease and imposes on many of its victims a restless urge to head out the door. Their journeys, shrouded in a fog of confusion and fragmented memory, are often dangerous and not infrequently fatal. About 6 in 10 dementia victims will wander at least once, health care statistics show, and the numbers are growing worldwide, fueled primarily by Alzheimer’s disease, which has no cure and affects about half of all people over 85.
It started with five words — ‘I want to go home’ — even though this is her home,” said Ms. Machett’s husband, John, a retired engineer who now cares for his wife full time near Richmond. She has gone off dozens of times in the four years since receiving her diagnosis, three times requiring a police search. “It’s a cruel disease,” he said.
“You have to stop thinking logically, because the people you’re looking for are no longer capable of logic,” said Robert B. Schaefer, a retired F.B.I. agent who cared for his wife, Sarah, for 15 years at home through her journey into Alzheimer’s. He now leads two-day training sessions for the Virginia Department of Criminal Justice Services.

How to deal with dementia is the most bewildering of end-of-life issues, whether for oneself or for a family member. Most of us would choose almost any other scenario for our last months or years, but the choice is often not ours to make. We can file advance directives (mine includes a “Dementia Provision“) and express our wishes and do brain exercises; still, one in seven Americans, according to most fairly recent reports, now suffers from dementia and the numbers are on the rise.

Here’s one interesting perspective. My greatly beloved brother-in-law, who recently relocated with my sister to a retirement community, has Parkinson’s. Though his mobility and function are diminished, the disease has yet to affect his mind. Several weeks ago he told me he no longer fears dementia. “I see people more and more with varying stages of dementia,” he said, “and I believe you can be happy.”

But you can also wander off.

More Wander Off in Fog of Age – NYTimes.com.

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Is your cell phone frying your brain?

by Fran Johns

OK, if you think it’s all just a lot of hysterical hooey about cell phones & radiation, you can click on to another page. But this op ed piece by public health expert Joel Moskowitz (with Diana McDonnell and Gene Kazinets) in the San Francisco Chronicle got my attention. Moskowitz is the Director of U.C. Berkeley’s Center for Family and Community Health.

A huge, 30-year study called COSMOS has been launched in Europe to determine whether cell phones cause cancer and other health problems. Meanwhile, policymakers in Sacramento are considering legislation to ensure people know how much radiation their cell phones emit. The wireless industry vigorously opposes such legislation. It argues that its phones comply with regulations, and there is no consensus about risks so people don’t need to know this. Our research review published in the Journal of Clinical Oncology found alarming results to the contrary.

We reviewed 23 case-control studies that examined tumor risk due to cell phone use. Although as a whole the data varied, among the 10 higher quality studies, we found a harmful association between phone use and tumor risk. The lower quality studies, which failed to meet scientific best practices, were primarily industry funded.

The 13 studies that investigated cell phone use for 10 or more years found a significant harmful association with tumor risk, especially for brain tumors, giving us ample reason for concern about long-term use.

Do federal regulations adequately protect the public? The 1996 Federal Communications Commission regulations are based upon the Specific Absorption Rate (SAR), a measure of heat generated by six minutes of cell phone exposure in an artificial model that represents a 200-pound man’s brain. Although every cell phone model has a SAR, the industry doesn’t make it easy to find it. Moreover, children, and adults who weigh less than 200 pounds, are exposed to more radiation than our government deems “safe.”

So just for fun, I got out the 107-page User Guide that came with my cell phone. Full disclosure: my cell phone is turned off unless I’m out walking or traveling; it takes pictures but it doesn’t do apps. Still, those 107 pages say it can do all the fancy Stuff.

On page 81 I found the SAR data. Even if I wanted to decipher the very small print, there is no way any of it would be meaningful to a lay reader. It does say that “Your wireless phone is a radio transmitter and receiver. It is designed and manufactured not to exceed limits for exposure to radio frequency (RF) energy set by the Federal Communications Commission (FCC) of the U.S. Government.”

I do try to trust the U.S. Government. But since they once sent my then-Marine husband double-timing out of a foxhole toward an A-bomb blast with a radiation tag hung around his neck in the ’50s, it would appear we have long been open to experimentation about radiation damage. (He survived. The animals positioned closer to the blast site did not. No one will ever be certain how much damage was sustained by those Marines wearing radiation tags… but then, who knew we’d keep right on storing bombs and fighting senseless wars anyway?)

Another what-can-you-believe? comes from CNN’s medical guru Sanjay Gupta in this line from a two-year-old commentary on potential cell phone radiation damage still up on his blog:

Over the last year, I have reviewed nearly a hundred studies on this topic, including the 19 large epidemiological studies. I urge you to do the same and read carefully to see what you think. Here is an example from a Swedish paper showing no increased risk of a brain tumor, known as acoustic neuroma. (see study) As you read the paper, you will find they defined a “regular” cell phone user as someone who uses a cell phone once per week during six months or more.

Once a week? Hello? Even in Sweden, even a decade ago, did anyone with a cell phone not use it at least once an hour? This very old study did have a timeless conclusion: “Our findings do not indicate an increased risk of acoustic neuroma related to short-term mobile phone use after a short latency period. However, our data suggest an increased risk of acoustic neuroma associated with mobile phone use of at least 10 years’ duration.”

Moskowitz argues that it’s time to revamp FCC regulations, pointing out that it is not just heat transfer but also variations in frequencies emitted that could cause damage.

Most of us know something about potential damage lurking in our Stuff. But we tend to be slow learners, and our regulatory agencies tend to be even slower. Having just lost a greatly loved sister, a long-time smoker, to pulmonary failure, Moskowitz’ concluding paragraphs hit home:

We should address this issue proactively even if we do not fully understand its magnitude. Our government has faced similar public health threats in the past. In 1965, although there was no scientific consensus about the harmful effects of cigarettes, Congress required a precautionary warning label on cigarette packages: “Cigarette Smoking May Be Hazardous to Your Health.” More specific warnings were not required until 1984: “Smoking Causes Lung Cancer, Heart Disease, Emphysema, And May Complicate Pregnancy.”

Should we have waited 19 years until absolutely certain before we informed the public about these risks?

Although more research on cell phone radiation is needed, we cannot afford to wait. There are 285 million cell phones in use in this country, and two-thirds of children over the age of seven use them. Manufacturers bury the SAR within their owner’s manuals, along with safety instructions to keep your phone up to an inch away from your body.

Nine nations have issued precautionary warnings. It is time for our government to require health warnings and publicize simple steps to reduce the health risks of cell phone use.

Why not?

Government must inform us of cell phone risk.

California/General interest/Health/Medicine/seniors/USA/World Affairs
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Cycling a relief for Parkinson’s?

by Fran Johns

That old saw about bike-riding as something one never forgets has taken on a new meaning. According to a report in the latest New England Journal of Medicine, cycling skills learned long ago can remain even when the ravages of Parkinson’s have destroyed most other abilities to get around… or even to stand without aid.

Dr. Bastiaan R. Bloem of the Radboud University Nijmegen Medical
Center in the Netherlands thought he had seen it all in his years of
caring for patients with Parkinson’s disease. But the 58-year-old
man who came to see him recently was a total surprise.



The New England Journal of Medicine

A video from the Netherlands of a 58-year-old man
with a 10-year history of Parkinson’s disease showed him freezing in his
movements after a few steps. Yet he was able to ride a bicycle.

The man had had Parkinson’s disease for 10 years, and it

had progressed until he was severely affected. Parkinson’s, a
neurological disorder in which some of the brain cells that control
movement die, had made him unable to walk. He trembled and could walk
only a few steps before falling. He froze in place, his feet feeling as
if they were bolted to the floor.

But the man told Dr. Bloem something amazing: he said he was a regular
exerciser — a cyclist, in fact — something that should not be possible
for patients at his stage of the disease, Dr. Bloem thought.

“He said, ‘Just yesterday I rode my bicycle for 10 kilometers’ — six
miles,” Dr. Bloem said. “He said he rides his bicycle for miles and
miles every day.”

“I said, ‘This cannot be,’ ” Dr. Bloem, a professor of neurology and
medical director of the hospital’s Parkinson’s Center, recalled in a
telephone interview. “This man has end-stage Parkinson’s disease. He is
unable to walk.”

But the man was eager to demonstrate, so Dr. Bloem took him outside
where a nurse’s bike was parked.

“We helped him mount the bike, gave him a little push, and he was gone,”
Dr. Bloem said. He rode, even making a U-turn, and was in perfect
control, all his Parkinson’s symptoms gone.

Yet the moment the man got off the bike, his symptoms returned. He froze
immediately, unable to take a step.

Parkinson’s has to be among the most bewildering of diseases, to the patient and caregiver alike. A very old friend of mine, former dean of a major theological school and author of a long list of acclaimed books, has had Parkinson’s for decades. He is fortunate also to have a wife with spine of steel and persistence of Job. More than a decade ago, when he was in a period of severe decline, she agitated for changes in his medications she felt needed to be made — and they subsequently left for an anniversary cruise to Scandinavia.  Some years later, after he had lost control of his mobility and most other functions it was determined that his Parkinson’s was not Parkinson’s after all, but “Parkinson’s-like symptoms,” and once again his treatment was dramatically changed. To dramatic effect. Having missed his sharp wit and ability to make conversation on earlier visits, the last time I was in their town the three of us enjoyed a long and hilarious lunch in a local restaurant.

If the old, familiar bicycle can be utilized to revive mobility and offer a new route to exercise and enjoyment, it will be very good news for Parkinson’s families.

For Some, Cycling Eases Parkinson’s Symptoms – NYTimes.com.

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How not to get Alzheimer's

by Fran Johns

Of all the Big Fears, for aging parents or our aging selves, Alzheimer’s probably ranks #1. So what if we could stave it off?

A new project, the Cognitive Fitness and Innovative Therapies, or CFIT, is trying to keep people at risk for Alzheimer’s intellectually and physically fit with quizzes and other cognitive challenges to see if onset of the disease can be delayed, perhaps indefinitely. The program, which is being advised by many famous names in Alzheimer’s research and treatment, also promotes diet changes and maintaining a social life to try to slow cognitive decline and lower the risk for Alzheimer’s.

View Interactive

Try some problems some people practice to delay the onset of Alzheimer’s.

The Wall Street Journal’s invitation to try a few of these Alzheimer’s-prevention exercises seemed tempting for this reporter, so I clicked on over. It should be noted here that although I hold undergraduate and graduate degrees from reputable institutions, they are in Art and Short Fiction. These exercises are not for the faint-hearted, or the right-brained. (Actually, after following a few more links and trying another quiz it was determined that my right brain/left brain dominance is split 16 to 16; this may be the problem.) Maybe they are for the MIT alumni.

Kenneth S. Kosik, co-director of the Neuroscience Research Institute at the University of California, Santa Barbara, launched CFIT with a center in Santa Barbara last year. Dr. Kosik recommends that individuals start efforts to prevent the disease in their 50s.

“By the time someone walks in my door with symptoms of the disease, it’s too late” to stop it, says Dr. Kosik, who plans to open four CFIT centers in New York and California. The idea behind the new research is that lifestyle interventions may delay or prevent the disease before symptoms appear—or slow the progression of Alzheimer’s once they do manifest.

The CFIT exercises seem to go a step — or perhaps a leap — farther than the SharpBrain exercises, which are also recommended by all sorts of people who understand brain function. (And seem, I have to say, a lot more like fun and less like Alzheimer’s prevention.) Any of them will keep you awake, and quite possibly stave off dementia.

The shift in thinking has been bolstered by public health efforts to prevent cognitive decline and delay or prevent Alzheimer’s disease, which affects some 5.3 million Americans. A 2007 report by the Centers for Disease Control and Prevention and the Alzheimer’s Association, a nonprofit group that funds research and supports advocacy and education, called for implementing findings on exercise and diet into actions people can do to maintain cognitive health. A CDC review of the scientific literature is expected to be released this year. The groups have been working together to gather data from individual states on the extent of cognitive impairment and meeting with state health officials to develop public campaigns to promote brain health.

Scientists don’t know exactly what causes Alzheimer’s, a progressive brain disorder that accounts for the majority of dementia cases, although genetics and age likely play a role. There are only four drugs approved for the disease, but these just treat individual symptoms and don’t stop the relentless course of the illness. New medicines are in testing but are likely to take years before they reach medical clinics.

This space highly recommends that you get started right away. We all want to believe it’s not too late.

Ways You Can Stave Off Alzheimer’s – WSJ.com.

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Medical marijuana: a painful issue all around

by Fran Johns

Courtesy of http://prospect.rsc.org/blogs/cw/?p=655She is 46, a breast cancer survivor for four long years, a regular user of medical marijuana. She told me — as we were introduced by a mutual friend and she was updating the friend — a horror story too ridiculous even for an ‘Only in California’ tale. Her name is not Emily, but I’ll call her Emily to protect the innocent.

Emily has a solid career in social services with a California nonprofit. For years their funding has come partly through federal grants. This has been fine with Emily’s regular use of medical marijuana, which is legal in California and which keeps her chronic pain — a result of cancer and several other issues — under control. She smokes one joint in the morning, and four at night. (An editorial caveat here: I’ve not tried marijuana, which is wise since I’m addicted to anything that comes down the pike, so I know from nothing about dosages, etc. I’m just repeating what she explained.)

Not long ago, a new project was offered Emily’s organization and she was named as its head. Only problem? Everyone would have to take the federally-mandated drug test. Only solution? get Emily off of the weed for six weeks in order for her to pass the test. She had done that, finishing it all and passing the test and starting the project, a few months earlier. It was not fun.

“In order to get through all this,” she said, “I was prescribed a total of six different pain-relief drugs which I took every day. They were expensive, but the only way I could have made it. So for six weeks I poured six different toxins into my system at an obscene cost, both financially and physically. But hey, you do what you have to do.”

Emily is now back to growing, and smoking, her own.

California voters, thanks to a ballot issue certified yesterday by our secretary of state, will decide next November whether to legalize marijuana for any adult use. The issue is being rather hotly debated elsewhere on True/Slant and I frankly have no idea where I’ll come down when the dust settles and I read the whole business. Friends tell me it’s fine, others tell me it’s addictive, the state needs the money, who knows where legalization and regulation could lead? Neither does much to curb alcohol abuse, but then, I quit drinking years ago so it’s easy to be holy about alcohol abuse; some of us can handle the booze, some of us can’t.

But all of us need pain relief. Marijuana is a proven pain-relief drug. Why in the world it should be denied those who need it boggles this increasingly boggled mind.

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Patients fight hospitals (& not just Catholic hospitals) for proper care

by Fran Johns

“Suppose I wind up being taken to a hospital,” said the lady with the penetrating blue eyes and a lovely, long braid over her shoulder. “How can I keep them from doing all those things I don’t want — ventilators, feeding tubes…?”

The lady with the lush braid was among a small group of retirement community residents with whom I spoke yesterday about end of life choices. None of them fear death. All of them fear aggressive, unwanted treatment. A colleague and I had been invited to talk with them about documents (advance directives, POLST forms, etc) and legal measures that can help insure a compassionate end. But the distressing reality is that there are no guarantees.

This is where we are with health care: patients having to fight against doctors, hospitals, systems — and directives from Bishops — for the right to die in peace.

A recent Kaiser Health News article (KHN is a publication of the Henry J. Kaiser Family Foundation and unrelated to Kaiser Permanente) cited problems arising from directives to Catholic hospitals about a variety of issues. The directives, issued in November by the U.S. Conference of Catholic Bishops, changed the policy on feeding tubes, for example, from “presumption in favor of”  to an “obligation.”

“This obligation,” the bishops said, “extends to patients in chronic and presumably irreversible conditions,” such as persistent vegetative state, who might live for many years if given such care. A feeding tube is not required, however, if it wouldn’t prolong life, would be “excessively burdensome for the patient,” or would “cause significant physical discomfort.”The directive raises fresh questions about the ability of patients to have their end-of-life treatment wishes honored — and whether and how a health care provider should comply with lawful requests not consistent with the provider’s religious views. Hospitals and nursing homes do not have to comply with requests that are “contrary to Catholic moral teaching,” according to longstanding policy that, as in the case of the revised directive, applies to non-Catholic patients as well.

As the women in our group yesterday understand, you can wind up with unwanted treatment in all sorts of circumstances, not just when you’re dying.

Dr. Lachlan Forrow, a Harvard University medical ethicist and palliative care specialist, expressed strong concern about the new policy, stressing its potentially broad scope. “That gets to be a very, very large number of people,” said Forrow, who heads a panel developing recommendations for the state of Massachusetts on end-of-life care.

(A)ccording to Catholic officials and outside experts, the directive may well apply to a wider range of patients, those that it describes as having “chronic and presumably irreversible conditions,” though the organization representing Catholic health facilities downplays the impact. Experts say this affected group could include those with massive strokes, advanced Alzheimer’s disease, traumatic brain injury and Lou Gehrig’s Disease.

If a patient or family didn’t want a feeding tube “and the reason they don’t want it is they basically want to die, then the Catholic institution would explain to them they can’t cooperate with that and they would have to go to another institution,” said the Rev. Thomas G. Weinandy, executive director for doctrine at the bishops’ conference, who helped draft the policy.

Weinandy said “obviously the public should know what the directives say,” and patients and relatives “can easily download the directives or get a copy.”

Oh, sure. The EMT people are loading mom into the ambulance, and you ask them to wait until you download a few pages of papal edicts.

In the days before she died two weeks ago (in a non-Catholic hospital) my sister Jane occasionally showed signs that, though sleeping, she might be experiencing pain. My niece, who was keeping round-the-clock watch over her mother, more than once asked the attending physician for additional pain medication and was told, in a “There, there now, dear” voice that “We can’t hasten!!” My niece is a tenured law school professor.

Doctors make a lot of fuss about that “First, do no harm” business in the Hippocratic oath. Is withholding pain medication because it might cause death a few hours sooner than later doing no harm? Is inflicting painful, unwanted and unwarranted interventions for some obscure religious reason doing no harm?

Catholic Directive May Thwart End-Of-Life Wishes – Kaiser Health News.

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Life, love and palliative care

by Fran Johns

My greatly beloved sister Jane died this morning, a peaceful end to 84 years of a life extraordinarily well lived. For a few days she had been on palliative care.

Palliative care. File that term away for yourself, your parents, your friends and family. It’s the new best thing, even though for centuries it was the old best thing: keep me comfortable and let life come full circle. For centuries we believed that life was a cycle: birth, Stuff, death. Some people’s stuff was better than others, but there was a general agreement that death happened, so it made sense to ease it along when the time came. Usually it didn’t take long. Often, if ease was not to be had, the family doctor invited everyone in briefly to say goodbye, closed the door and administered a shot of morphine.

Then we invented chemotherapy and ventilators and feeding tubes and miracle drugs and adopted the national attitude that one is supposed to live forever. Plus, we invented lawsuits. So dying turned into something horrid and often painful, something one is really not supposed to do. Physician aid-in-dying for the terminally ill became illegal; even talking about it gave Sarah Palin the death panel willies.

My sister Jane was a gifted artist who told me, a few days before she died, that she’d reached the apex of her career because one of her recent paintings was stolen from a show currently on view. (She was also delighted that others were selling well.) She was a remarkable mother, hostess, book-lover, friend, and about the world’s best big sister. The day after our last conversation she had respiratory failure (quit smoking, please, if you haven’t already) and began to die.

Jane was briefly on a ventilator, which I hated as much as she, but one does what needs to be done. Very quickly she moved from that to palliative care. Her husband, four daughters and assorted grandchildren gathered around to sing songs, hold hands, administer foot rubs, report to her remaining two sisters and innumerable friends that all was well.

This is not an argument against miracle drugs or aggressive interventions when appropriate, or even against feeding tubes and ventilators — although if you catch my children approving such things after I conk my head on the curb please remind them of my explicit instructions to the contrary. But it is an argument to confront mortality, complete your advance directives, talk to family and friends about your own wishes no matter how young and immortal you feel yourself to be, support compassionate and humane dying. Advocating for decent health care for the living wouldn’t be a bad way to start.

Palliative care is a valuable new/old thing. So are big sisters like Jane, although they are hard to come by.

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You can go home again — but should you?

by Fran Johns

Yearning to go back to your childhood? It may or may not work.

For many of us, memories of what seems such a carefree, safer time are linked to a place. And now, thanks to Google Maps and other sites, we can find – and sometimes physically revisit – those houses and territories at the center of a powerful, nostalgic pull. But, like adoptive children searching for birth mothers (and vice versa), the adventure carries risk. That site at the end of the rainbow might be psychological gold – or it can turn out to be a pot of mud.

Saturday’s Wall Street Journal featured a ‘Journal Report’ article and related story about the going-home phenomenon, including one particularly fascinating segment:

When John Beebe, a Jungian analyst in San Francisco, was invited to speak at a conference in China, he decided he would try to find the house he had lived in there as a child. His father had been a military attaché in the 1940s, and Dr. Beebe remembers living in a “rather grand” house before the family was evacuated and before his parents divorced.

But when he finally found the spot, the house was gone. It had been replaced, in his words, by “drab communist housing.” That visit—and watching “Empire of the Sun,” a World War II movie about a boy separated from, and then reunited with, his parents—triggered overwhelming feelings of grief, Dr. Beebe recalls. “Twenty-seven years of Jungian analysis, and I didn’t mourn my childhood until then,” he says.

“A lot of people haven’t fully left home,” Dr. Beebe says. “Some people need to go back [in order] to move on.” Others, while claiming to be “just curious” about seeing their childhood home, may have a deeper motive, he suggests: a desire to reconnect to the way they felt as a child before life—school, careers and families—required so many compromises. “In adapting to the world, we all lose some of our soul,” Dr. Beebe says. “When we make the journey back, we find some of our soul again.”

As the eminent Dr. Beebe happens to be a friend of this space, that sent us to the telephone to ask for free advice to pass along to readers about the pros and cons of returning to childhood in this manner. (Before signing off on the advice, Beebe said he “wanted to put in a plug for the amazingly good writer Kathleen A. Hughes” who authored both stories referenced above, proving out his own reputation as both acclaimed analyst/speaker and genuine nice guy. This space hereby strongly recommends you go out and buy Saturday’s WSJ.)

As far as the potential benefits of revisiting childhood space go, Beebe says that “for all of us, particularly as we get older, withdrawing the projections we make onto things that interfere with right relationships” can be very good. In other words, perhaps “our parents were not as tall as we thought.” Or that room so huge or that shadow so all-encompassing. “We all have a subjective relationship to childhood,” he explains, “and it kind of ties us to unreality. When we see where (our memory) was right, and where it was wrong, it somehow sets the soul at rest.”

As to the potential pitfalls of geographical/psychological returns, Beebe says that “memory is powerful, but so is reality. Certainly I was more upset than I’d imagined in China. In a way, I hadn’t grieved enough. These returns tend to stir things up; it can be shocking to be flooded with emotions and I didn’t expect this. I was taken by surprise, but ready.”

Making the return, and dealing with possible impact, may be something you don’t want to undertake all by yourself. “As they used to say about psychedelic drugs in the 60s,” Beebe comments, “it’s better to have someone around to guide you through the trip. It’s not good to be alone.”

In my 60s I returned to my birthplace in Porto Alegre, Brazil, where the tales and photos I’d grown up with showing idyllic hillsides overlooking the bay turned out to be a jumble of rooftops and high walls. In my 40s I returned to the site of my earliest memories, the Nashville, TN house in which I remembered running merrily up and down the length of a giant kitchen. It was, in reality, roughly 6′ x 8′. Today Google Maps tells me it’s gone, replaced by what seems to be an educational facility for the church (same old church) that was two doors down the street. As there are too many metaphors here even to begin considering, if I do any further revisitation I may invite John Beebe to go along.

What about you? Any more going-home-again stories out there?

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