Fall 2002

Read All About It!

I’m Moving On…Are U?

The human spirit pulses relentlessly through Beka Serdans story. “Yes,” she tells us, “Dystonia persists. But so does life. So why write?” To tell about life. About all it holds. About moving on. And, as she puts it, “to make readers think.” The reader always plays a collaborative role in Beka’s books. Upon completing one, the reader finds himself saying, as though back to the author, “Yes! I’m moving on too!”

In this, her second book on Dystonia, Beka Serdans leads the reader further into the psyche of a person who lives with a degenerative neurological condition. Some of the symptoms that are part of her daily fight with dystonia are similar to those experienced by someone with Parkinson’s — for example, freezing, erratic movement, and trouble with swallowing. But, what may be most familiar to PWPs are the underlying common experiences — dealing with the health care system, with the fragility of relationships under stress, with the daily struggles of managing medications and easing symptoms. Beka communicates this through her unique writing style, a gentle composite of prose and poetry. Her conclusion: “Dystonia is…survival. Dystonia is survivable. And so is life. Along with grace.”

Like so many individuals whose dreams have been altered by the shock of a permanent illness, Beka comes around to a stoic acceptance and determination to make the best of it. “One has to fight. I fought. And I won.” She then points to the doors that have been opened that probably would not have been if she had never had to deal with Dystonia. A critical care nurse at New York Presbyterian Hospital by profession, Beka has since embarked on a parallel career as a writer, with a bundle of books, grant proposals, brochures, and management guides already to her credit. She has also started a foundation — Care4Dystonia. She works hard; 40-60 hours a week seem to be normal for her, imposed partly by the pressures of her job and partly because she finds that hard work helps her manage the Dystonia. Beka also plays hard. Travel, friends, family, music, and the beach are her umbilical cord — her sustenance and mainstay. One understands instinctively her need to hear the roar of the ocean as well as her quest for exploration and connectivity.

The individual — the core of one person — is paramount in Beka’s writing. It reveals the soul of a person who has struggled successfully to find purpose. At first the reader may be caught off guard by the style which is almost disjointed at times, with syntax and punctuation seemingly incongruent, she realizes; it is not the writing that counts, but the authenticity of the writer’s experience and the moral message that she derives from it. “The quality of your life ultimately boils down to the quality of your contribution.” Beka writes. “Don’t let life pass you by. May be it’s all called: Embracing Life.”

I’m Moving On…Are U? (and other publications by Beka Serdans) published by Xlibris is available at Barnes and Noble, www.bn.com or through the www.care4dystonia.org site. We encourage you to check out the site to learn more about Dystonia.

Price $16.00

By Sharon Stone

The Secret Life of the Brain

The Secret Life of the Brain — a five-part PBS television series and a companion book of the same title — is a masterful popular presentation of the science of the human brain. First aired last spring, the skillfully written and aesthetically presented production is organized under five general headings: The Baby’s Brain: Wider Than the Sky; The Child’s Brain: Syllable From Sound; The Teenage Brain: A World of Their Own; The Adult Brain: To Think by Feeling; and The Aging Brain: Through Many Lives.

People living with Parkinson’s will be tempted to jump directly to the latter sections, especially the final one, but those who have the time will find a tour of the earlier sections well worth the ride. In The Baby’s Brain, for example, there is a fascinating account of the way in which experience can play a role in the formation of new internal brain connections — a process that has implications for potentially compensatory therapies later in life. For example, if a small child undergoes cataract surgery, part of the physical therapy or retraining of the neuronal connections involves covering the ‘well’ eye in order to encourage the child to use the ‘repaired’ one. This stimulates the formation of new visual brain connections and develops the sight capacity of the post-operative eye.

The same type of retraining can take place in the adult brain. Scientists have found that the use of medications in conjunction with talk therapy works quite well in treating depression because it changes the physical synapses of the brain. Benefits can also be seen with stroke victims. It has often been said that the functional capacity that exists one year following a stroke typically represents the maximum development to be expected. However, research has determined that “training” therapy can make a significant difference. In a manner similar to the retraining of the infant’s repaired eye, stroke survivors who have paralysis on one side of the body (which may, for example, reduce motion in the left hand) can actually regain some control and movement with training therapy. By restraining movement in the right hand, therapists can foster formation of the neuronal connections that are necessary to develop the left side of the body. This does not imply, of course, that therapy can ‘cure’ all loss of function or movement. However, it does demonstrate that neuronal brain connections can be altered — even in older individuals.

One important question of special concern to PWPs is whether or not damaged cells can be successfully replaced with stem cells. Research studies involving mice have demonstrated the existence of some sequence and combination of molecular signals that can induce the birth of new neurons. The Secret Life of the Brain (PBS Home Video Series) can be ordered by phone at 1-800-262-0717 or log onto www.pbs.org and click on “shop”. Price: Complete Set: $79.98 Individual Tapes: $20 each.

The Secret Life of the Brain (book) is published by National Academy Press, 2101 Constitution Avenue, NW, Lockbox 285, Washington, DC 20055. To order by phone: 1-800-624-6242 or (202) 334-3313; on-line: www.nap.edu/bookstore (on-line orders receive a 20% discount!) and by mail (see publishers address).

List Price: $35

By Sharon Stone

MeeMaw Has Parkinson’s Disease

If you have ever wondered how to help young children learn about Parkinson’s disease, be sure to get yourself a copy of Sally Graf Rascoe’s book, “MeeMaw Has Parkinson’s Disease”.

Sally Rascoe, a retired kindergarten teacher who has had Parkinson’s disease for more than a decade, wrote the book to help her own grandchildren understand her condition. The beautifully illustrated publication discusses PD in simple, caring language that would be well received by any child with a mother, father, aunt, or uncle living with Parkinson’s. In the book, Sally talks about the symptoms of PD, treatment options, the non-contagious nature of PD, and the fact that there are several famous people who have the condition as well.

Single copies are free of charge. Simply send $2 for shipping and handling to the Houston Area Parkinson Society, 1475 W. Gray, Suite 175, Houston, Texas 77019.

By Ann Loeb