THURSDAY, MAY 01, 2008

What the word stroke means to me

To mark Stroke Awareness Month, we invited Cleo Hutton (Striking Back at Stroke: A Doctor-Patient Journal and After a Stroke: 300 Tips for Making Life Easier) to impart  some of the wisdom she shares with people who recently have had a stroke.

For me, a 16-year veteran of stroke, the word stroke has taken on meaning beyond the medical definition. The word also describes our new life after being sent home from the hospital, when we must move from patient to person again and face the realities of living with stroke.

For me, this definition of stroke includes:

Strength

Time

Rehabilitation

Opportunity

Knowledge

Environment

Strength equals empowerment, choice, enthusiasm and hope. You may at first feel powerless as your body tires easily. The words power, choice, enthusiasm and hope may feel empty, as if they are not a part of your vocabulary after a stroke. But your inner strength shows in the first choice you have to make—to accept that you have reached a “plateau” in healing or to gather the will to overcome this new obstacle. As stroke survivors, we may have known that life isn’t fair, but stroke has certainly driven the point home. We grieve. But what we do after that is our making or breaking. We don’t have to go through the recovery process all alone; we choose to have our loved ones surround us with support, boosting our strength, and we are grateful for their concern for us. We hang on to hope for a better tomorrow. We are enthusiastic over our accomplishments.

Time is necessary to heal, evaluate and learn. These three activities do not necessarily happen in this order, but tend to ebb and flow. We slowly begin to learn all we can about our particular stroke and the parts of the brain affected. In doing so, we determine our strategy of compensating and how to best use our stroke-affected side so that other areas of our brain begin to take on new adaptive roles. In time, we begin to learn that anger can be our friend. Sometimes we get so angry we learn to do a new task no matter how long it takes! It is anger’s cousin, rage, we want to stay away from. In time, we learn to be our own best advocate. In time, we realize our limitations while continually striving to improve.  

Rehabilitation will be ongoing. When we begin to slowly return from patient to person we realize that physical therapy equals daily exercises we perform at home. Vocational therapy involves our daily tasks such as bathing, making the bed and preparing meals. Recreational therapy now involves getting out into the community again. Emotional therapy includes family intervention. In time, we realize that stroke has affected each family member and that it is our responsibility to support them as well. The rehabilitation methods we began learning in the hospital will last forever as we become skilled at adapting to a new lifestyle.

Opportunity! Sometimes we have to knock on many doors to make this happen. Change is difficult. Again, we have a choice: to look at life as a reason for depression or as an opportunity. Among the many challenges are opportunities for growth in our spiritual, educational and personal lives. We may choose the opportunity to slow down and enjoy every day. We may choose the opportunity to learn a new skill. It is in the challenges we face every day that we find opportunity to grow into an even better person than we where the day before. Rather than handicaps, we choose to view opportunities. We slowly begin to shift our focus away from our stoke deficits and toward our assets.

Knowledge helps us to adapt to different ways of performing tasks. Learn all you can about your particular stroke, what area of the brain was affected and its function. Knowledge also means that family dynamics require patience and understanding. Be kind to yourself and your loved ones. Relax, regroup and take one task at a time. However, be careful that your loved ones don’t smother you with good intentions! There are so many things we need to learn to do by ourselves.

Environment: Ours must be safe and uncluttered. Soon, we discover adaptive skills that assist us in working our body and our mind. For example, we learn how to safely test water temperature with our unaffected hand. We practice picking up coins from a table in order to get our affected fingers working again. We make sure that friendships fill our environment to help us heal.

Every facet of your life will change after stroke. It will be up to you to find your definition of stroke—your meaning of healing.

—Cleo Hutton

WEDNESDAY, APRIL 23, 2008

Fair Play across the pond

The Neuroscience of Fair Play, Dr. Donald W. Pfaff’s latest Dana Press offering, was featured in London’s Times Higher Education this week. In the first U.K. review of the book, Pfaff receives praise for his insight on the biological and neurological explanation for why we are predisposed to play nice with others.

The Neuroscience of Fair Play also deals with the idea of empathy and the impact it has on our brains. “I bet you were so engaged with fictional characters in a movie you saw recently that you cried,” writes Times Higher Education’s Paul J. Zak. “That’s the empathy response, and you know how difficult it is to stop this. Pfaff will tell you why.”

—Lauren Wilson

FRIDAY, APRIL 18, 2008

Hot topics

It’s always heartening when other media focus on the subjects we at Dana hold dear—especially when they refer to us. Dr. Sanjay Gupta, CNN’s chief medical correspondent, does so in his April 15 blog post about dissociative identity disorder, a subject we covered recently in Cerebrum. It’s also timed nicely for our second annual anthology of Cerebrum articles.

It’s gratifying, too, when a small-town newspaper picks up on the work we do—as did the editorial board of the Daily Astorian, in Oregon, also on April 15. Their editorial cites our recent study, Learning, Arts, and the Brain.

Meanwhile, the New York Times published an interesting multimedia feature on stroke. To their resources I would like to add our book Striking Back at Stroke: A Doctor-Patient Journal, by survivor Cleo Hutton and top stroke doctor Louis R. Caplan, M.D.

—Dan Gordon 

WEDNESDAY, APRIL 16, 2008

Timeless advice

Entrepreneur Ben Canoscha has revived a commencement speech given by former Dana Foundation Chairman David Mahoney in 1996 by including it in his blog this week. In it, Mahoney lays out his “Centenarian Strategy,” or how to plan a career when you know it’s pretty darn likely you’ll be living past 100.

Mahoney spelled out more of his wisdom in the 1999 book The Longevity Strategy: How to Live to 100 Using the Brain-Body Connection, co-authored by Richard Restak. For a quick 31-item to-do list for a sterling “fourth age,” click on our book page and page down to the table of contents.

Canosha has plenty more years to follow such advice. Now a college student, he started his first “real company,” Comcate (an e-government software firm), when he was 14. His book, My Start-up Life: What a (Very) Young CEO Learned on His Journey through Silicon Valley, was named one of the best small business books of 2007 by 800CEORead.com.

—Nicky Penttila

TUESDAY, APRIL 15, 2008

Of science, cinema and scaremongering

Last Sunday’s Outlook section in the Washington Post featured an epic half-page image of the glowing “2001: A Space Odyssey” star child, above which all-caps letters proclaimed: “The Science Century.”

All writers want to communicate some shared understanding of a topic with their readers, and a familiar allusion or archetype often does the trick nicely.

But science writers—those dedicated souls who bear the cross of making sober science seem engaging and, yes, sexy—justifiably look to movies and literature more than the average journalist. Most of us readers have neither the academic background nor the sustained interest to follow the research involved in a scientific study, except by way of vastly simplified scenarios and analogies. We, the people, demand “Star Trek.”

This time, though, the Post may have gone a bit overboard. In nearly all of the section’s half-dozen science articles, sweeping headlines and generalizations predicted futures either glowingly optimistic or catastrophically dystopian. Peppered references to Philip K. Dick, Michael Crichton, “Star Trek” and “Gattaca” were no accident.

Though I’m certainly guilty of using the device, movie-dropping starts to induce involuntary eye-rolling once you’ve read your hundredth article on the new “Blade Runner” brain-scanning breakthrough.

Worse than merely cliché, however, was Nita Farahany’s article, which in the print version touted the bombastic title: “What Are They Thinking?: The Government Is Trying to Wrap Its Mind Around Yours.”

Farahany’s piece overflows with doom-and-gloom speculation while failing to include even a single quote from, you know, an actual scientist. Her simplification of current research ignores the mile-wide gulf between current brain scanning technology and Orwellian mind-reading practices.

Let’s not dismiss her valid concerns for our civil liberties. We at Dana take an active interest in these neuroethical worries. And I’ve no doubt that Farahany, an assistant professor of law and philosophy at Vanderbilt University, is familiar with both the original research and its coverage in the media. But her Chicken Little-ing belittles the actual issues, and her second-paragraph cinematic reference doesn’t help:

“Though [pre-emptive crime prevention based on brain activity] may sound a lot like the plot of the 2002 movie “Minority Report,”…I’m not talking about science fiction here; it turns out we’re not so far away from that world. But does it sound like a very safe place, or a very scary one?”

Indeed, it was scary when Tom Cruise faced unjust persecution in that hypothetical land of techno-totalitarianism, and barely dodged those Hollywood effects. But what’s scarier—and nearer to reality—is when our trepidation toward new technology trumps our dedication to informed journalism.

Don’t think that I mean to criticize every use of sci-fi as prefabricated argument in the ethical wrangling of modern-day science. Such cultural shortcuts can come in handy and, as I said, I’m guilty of it myself. However, I hope that my recent post on artificial cognitive enhancements came off as more tongue-in-cheek than feet-on-soapbox, and that by referencing “The Time Machine” and “Gattaca” I managed to recall the ethical questions raised by those far-off fantasies without sounding like a Luddite.

—Ben Mauk

WEDNESDAY, APRIL 09, 2008

A pox on cancer

For many, the beginnings of an education in immunology do not occur until parenthood, when a number of previously unconsidered hard truths of disease come to light. Among them: The only thing that might be less fun than having chicken pox is having a child who has chicken pox.

The usually permanent immunity that follows from infection will be little comfort to the sunken-eyed parent, cradling a shrieking, polka-dotted infant at 3 a.m. But the stresses of chicken pox pale in comparison with those of mumps, measles and rubella, infections that commonly come with health-endangering complications, and that in unvaccinated populations prove wildly infectious and even deadly.

Thankfully, widespread use of the MMR vaccine among one-year-olds in the developed world has largely eliminated these illnesses from family life. There's a chicken pox vaccine, too. (Again, small comfort for dad and daughter on vaccination day.)

But recent research may have found an upside to the otherwise unfortunate cases of poxes, measles and mumps. These infections, when incurred early on, teach the immune system to recognize and attack tumors later in life.

Of course, it would be unwise to forego vaccination in favor of racking up potential cancer defenses. But one consequence of this discovery will be clinical trials of cancer vaccines that take advantage of the same immune-memory mechanisms observed to result from infection.

I arrived too late at the American Association of Immunologists annual meeting, this year part of the triennial Experimental Biology conference, to hear in person the AAI Presidential Lecture “Immunologic weapons acquired early in life win battles with cancer late in life,” delivered April 5 by AAI President Olivera Finn. But I wish I could have attended, because the material released in conjunction with the presentation contains thought-provoking notions about the important role foreign invaders play in our growing bodies.

Finn, who is chair of the Department of Immunology at the University of Pittsburgh School of Medicine, lectured that these infections create an immune memory not only for the foreign molecules known as antigens that invade the body but also for “self antigens” that are abnormally expressed on the body's infected tissues. When these same antigens are produced on tumor cells later in life, the immune system has the experience to respond appropriately.

In fact, Finn's laboratory linked the inflammation caused by non-malignant events such as measles and mumps to significantly decreased risk for cancer. Future cancer vaccines could use the “self” antigens produced by the body's infectious tissues to provide protection similar to that acquired from the more dangerous germs and viruses themselves, Finn argued.

We've long known roughly how immune defense cells recognize viruses and other foreign invaders. The news here is that the immune system can learn to recognize its own abnormal antigens, located on tumors within the body, and that this learning takes place during the immune system's early schooling.

Immunotherapy techniques based on these findings will soon enter a new phase of clinical trials. The seven trials that have been conducted, Finn reported, showed no adverse effects, and in 20 percent of cases the patients suffering from advanced cancers showed a stabilizing immune response.

So perk up, sleep-deprived parents! Your long-living children will thank you.

—Ben Mauk 

TUESDAY, APRIL 08, 2008

The treatment doctors forgot

“You're not ever going to cure cancer unless you engage the immune system,” said Jim Allison, a scientist at the Howard Hughes Medical Institute/Memorial Sloan-Kettering Cancer Center, April 6 during his AAI-Dana Foundation Award in Human Immunology Research lecture.

I'll be writing more extensively on Allison and his (fascinating) work on cancer therapies later, but one general point of his so surprised me that I think it merits mention here.

Immunotherapy as a cancer treatment is not a new idea, but, Allison claims, it is a much maligned one. He began his lecture by saying, “What I'm going to try to do at the end of the talk is to make a case for moving immunologists into the mainstream. ... [Immunotherapy] is thought of by too many as some sort of alternative medicine.”

Immunology as alternative medicine? Looking around the Experimental Biology/American Association of Immunologists conference at the hundreds of posters, presentations and lectures by experienced scientists, Nobel and Lasker award winners among them, it is hard to believe that the “mainstream” would lump those therapies that target the immune system in order to enhance or suppress its activities with less conventional treatments such as acupuncture and herbal-based remedies.

And yet, doctors and clinicians have been slow to take to the new advances coming out of immunology research, in part because past failures have made doctors and the public skeptical of more successful recent studies. “Something new comes out and we hype it,” he said to me, “and [when] it doesn't work, people [say], ‘Eh.’ ”

It is inherently difficult to get the immune system to do what you want, Allison said in the lecture, because “there are a lot of intrinsic and extrinsic regulatory circuits to make sure the immune system doesn't go awry.” These fail-safe mechanisms in the body had in the past prevented successful manipulation by researchers of T cells and other immune defenses.

Allison's research during the past 25 years has led to treatments that target one of those fail-safe mechanisms that regulate the production of immune defenses. Recent trials of these treatments show great promise in comparison with the disappointing results of some past immunotherapies.

The payoff is that while traditional cancer treatments either involve a painful tradeoff of health concerns (as with chemotherapy) or are limited by their inability to adapt to tumor cell mutations (as with vaccines), the immune system can be harnessed to fight tumors with limited serious side effects and with the flexibility to create “neoantigens” that target virtually any tumor cell mutation, Allison said.

While en route to San Diego I met a man at the Denver airport whose daughter long suffered from headaches until she brought a decidedly alternative treatment to her doctor's attention, a treatment that seemed to successfully rid her of the affliction. Although our opinions on the strength of evidence for the medicinal benefits of Alaskan wild blueberries differed, one thing he said did come back to me during Allison's lecture:

“The onus is on the patient, now, to bring new treatments to the attention of the doctor.”

A bit of an overstatement, perhaps, but it wouldn't be outrageous to say that, when it comes to bringing immunologists into the mainstream, the onus is on all of us: patient, doctor, scientist.

--Ben Mauk