Cycling a relief for Parkinson’s?

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.

How not to get Alzheimer's

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.

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.

When Mom & Dad stay home — and need care

Years ago when my grandmother was dying — a process that seemed to consume her for a very long time — her children took turns having their semi-invalid mother live with them for a period of months. Grandmother was not an easy patient. She spent most of her days talking about how everyone she loved was dead — which used to make me wonder where my sisters, my long-suffering mother and I stood with her. But Grandmother’s decline was before technology complicated such events, and pretty much all that was needed was to put a borrowed bed somewhere, try to keep her comfortable and entertained and call the doctor if she needed anything. Most of her six children had at least one at-home family member who could handle Grandmother’s care for a few months without straining the family budget or everyone’s patience and good humor.

Caring for aging family members today is not so simple. Few families have a stay-at-home member able to juggle regular routine with patient care, such  care now often calls for high-tech equipment and/or high-cost drugs and interventions, and doctors don’t make house calls every other night.

In an informative and enlightening ‘Encore’ feature, Wall Street Journal writer Anne Tergesen follows the adventures of several families wherein siblings have become caregivers to aging parents.

Family cohesiveness is a tall order at any time of life. But as parents grow frail, brothers and sisters often encounter new obstacles to togetherness—at precisely the time they most need to rely on one another. Sibling rivalry can emerge or intensify as adult children vie, one last time, for a parent’s love or financial support. And even as parents grow dependent on children, the desire to cling to old, familiar roles can create a dysfunctional mess.

Today, with the economy and household finances in disrepair, such strains are more pronounced. According to a recent report by the National Alliance for Caregiving and AARP, about 43.5 million Americans look after someone 50 or older, 28% more than in 2004. In comparison with 2004, a smaller percentage—41% versus 46%—are hiring help. And more—70% versus 59%—are reaching out to unpaid help, such as family and friends.

Experts say it’s crucial that families figure out ways to work together, to work through their differences, for the common goal of caring for a parent. If they don’t, their parents will suffer—and so will they.

“Family caregivers are the backbone of the long-term-care system in this country,” says Francine Russo, author of a new book about how siblings can cope with aging parents, “They’re Your Parents, Too!” Siblings who work together, she adds, can help preserve not just one another’s health and sanity but also a “last link to their first family.”

There is, fortunately, a lot of support for family caregivers, through sources listed above, the Family Caregiver Alliance and other local or national groups. There are also helpful tips, many of which are outlined in Tergesen’s article: use new technologies, seek help, be flexible, keep lists, and laugh a lot.

The latter was what saved my family from collapse during Grandmother’s stays in our home. Grandmother would today be easily identified as clinically, chronically, severely depressed. My sister Mimi and I devised a game, after the first few days of jockeying for position as the one not to have to spend the afternoon with Grandmother. Whoever came up with the most hilarious joke to tell and see if we could make her laugh, or the most bizarre question (“Did Uncle James really go to jail, like we’ve heard?”) to prompt a family story, would win. I don’t know if this technique has real merit but it worked for us. We laughed a great deal, and Grandmother got to tell a LOT of previously untold family stories. Some of them were even true.

Siblings Overcome Conflicts to Care for Aging Parents – WSJ.com.

Medical marijuana: a painful issue all around

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.

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

“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.

Jenna & Barbara Bush doing good? Building better global health? Believe it

Saying good things about anyone named Bush has not been a priority of this space. But an article by Sarah Adler that appeared in today’s San Francisco Chronicle, and a quick visit to the Global Health Corps Web site, suggest that the former first twins have found a way to turn their considerable name recognition and fund raising skills into an innovative program at work to improve health access and care in the U.S. and across the globe.

When first daughter Jenna Bush attended a Bay Area AIDS summit hosted by Google.org two years ago, some skeptics doubted it would amount to more than a photo op.

But they were wrong. In a conversation with a Google staffer and a Stanford AIDS activist at one session, she helped come up with a big idea: A plan to improve health care access in the poorest parts of the United States and the world. What may have seemed like a pie-in-the-sky plan has morphed into a nongovernmental organization with an impressive roster of donors and more than $1 million in funding. Few may have heard of the Global Health Corps, but as its influence grows, that is likely to change.

“So many ideas come up in group conversations that never get realized,” said corps founding director Dave Ryan, who at the time was the executive director for Face AIDS, a nonprofit group that helps Rwandans living with HIV. “But when we all got together, we saw there was something special that could happen.”

Having watched friends transition from college into careers through organizations like Teach for America, they wondered whether they could create a similar organization dedicated to health care.

“We felt like there should be a similar program for public health,” said Charlie Hale, who works in Google’s direct ad sales division and is one of the group’s co-founders.

They enlisted an eager group of socially conscious friends and secured $250,000 in seed money from Google.org. Jenna’s sister, Barbara Bush, became the president of the organization, after spending time working in Africa with UNICEF and the U.N. World Food Program.

Rather than plunging into provision of health care or supplies, GHC finds people with skills in supply chain, design and technology often learned outside of the health care field, and partners with public health organizations to fill such needs within the field. These tend not to be old fogeys over 30, either; it is twenty-somethings like themselves that GHC seeks to attract. They have thus far sent 22 fellows to 12 countries in East Africa and the U.S., and plan to send 36 new fellows out this year.

The organization has also formed partnerships with the Clinton HIV/AIDS Initiative, which is part of former President Bill Clinton’s global nongovernmental foundation, and Partners in Health, which was co-founded by Dr. Paul Farmer and has a large presence in Haiti.

The Global Health Corps has four staff members in New York and three volunteers in San Francisco and relies on group calls, e-mail and video conferencing at cafes, such as the recent session at Philz Coffee where Barbara Bush, Hale and Chief Financial Officer Jenny Miller exchanged updates.

The group has raised more than $1 million, and Hale said that while he’s aware that the group has more advantages than others, it also has a greater obligation to prove itself.

“Our contacts got us in the room, but at the end of the day, no one is going to significantly fund you unless you show that your good idea can work,” he said.

The Global Health Corps is accepting applications for fellowships in Burundi, Malawi, Tanzania and Rwanda, where Barbara Bush recently traveled to meet with the group’s fellows.

Boomers and beyonders need not apply. This is a new-grads generation thing. Working backwards from the Greatest Generation through the Depression-scarred and the super-achievers and the me-firsters and the whateverers, it is encouraging to see a new generation of energy and optimism deciding to take on global issues of real significance and need. Even if the decider is named Bush.

Opportunity, optimism in Global Health Corps.

Life, love and palliative care

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.

Health care reform solution: eliminate insurance

“Insurance? My whole point is I want to kill it.”

Gil Ahrens knows health insurance. One terrible accident. Years of life turned upside down. Denials of payment. Claims argued. Liens placed on property. Throughout a long and arduous struggle to get life back on track, obstacles created by insurance issues stood in the way of what should have been everyone’s focus: care. It is a story familiar, in one variation or another, to millions of Americans.

Author of the recently released Shattered, Shaken and Stirred, Ahrens began his eye-opening journey through the catacombs of our health insurance system almost simultaneously with a devastating automobile accident. He escaped with a badly mangled foot and other injuries, his wife was left paralyzed. Their three-week-old daughter survived intact — but that was about the only good news the Ahrens family would have for a very long time. For the successful California businessman/entrepreneur and his family, life was forever changed; the book tells the years-long challenge of that change.

In recent appearances and radio talks, Ahrens has spoken out against what he describes as a health system “in shambles. In its current state, health care is a bigger threat than terrorism. And needless to say, we are paying through the nose.”

Shattered, Shaken and Stirred, written in the form of a letter to his now-school-age daughter, is part description of unbearable tragedy and misfortune, and part how-to guide for rebuilding one’s spirit. But underlying it all is an unvarnished message to America from one person who has been entrapped in the system: insurance is the #1 evil of American health care.

Elsewhere around the globe are examples of how to do health care right. The world’s top ten livable cities, Ahrens points out, share one characteristic: their citizens have health care. Not health insurance, health care.

“Americans do not want coverage,” Ahrens says; “they want care.

Does that not make sense?

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