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Ninds at Fifty

In the vast lexicon of American acronyms, “NINDS” is an exotic listing, seldom recognized by the nonscientific population. But when expanded to its full name, National Institute of Neurological Disorders and Stroke, its mission is clear — to conquer neurological ailments (like Parkinson’s disease) that afflict millions of Americans.

As the winner of six Nobel Prizes and five Albert and Mary Lasker Awards in Medicine, NINDS’ record of outstanding achievements is also clear. (The Lasker Awards often precede forthcoming Nobel Prizes; more Nobels for NINDS are virtually certain.)

Beginnings
NINDS was established in 1951, within a year of the launch of the National Institutes of Health, its institutional overseer. There was some disagreement at the beginning as to the precise naming of the institute: it took four tries to come up with NINDS.

NIH and NINDS have a complex history — too long and complex to summarize in this review. But if anyone can guide us through it, it is Lewis P. Rowland, M.D., President of the Parkinson’s Disease Foundation.

Dr. Rowland’s name (“Bud” to his friends and colleagues) will be familiar to most of you. He has had an illustrious career, focused entirely on the investigation and teaching of neurology. His work kept him in constant contact with NIH and NINDS, so much so that he came to know personally every director of NINDS save one.

Dr. Rowland not only has a scientific bent, but a generous spirit as well. In spite of his close connections with the people of NIH and NINDS, he has omitted from the book all the negative rumors he probably heard. He explains that he uses the Andy Warhol approach, and quotes the artist, “When I did my self-portrait, I left all the pimples out because you always should. Pimples are a temporary condition and they don’t have anything to do with what you really look like. Always omit the blemishes — they’re not a part of the picture you want.”

Great Past, Future Perfect
In describing the past 50 years, Dr. Rowland gives high praise to the brilliant investigators who are responsible for the achievements of NINDS. Their biographies are fascinating; these are people one would like to meet and even befriend.

But Dr. Rowland also has sober warnings for us. One of his main concerns is the duplication of neuroscience to different institutes. The estimates that there are probably 200 principal investigators at the NIH who are in the field of neuroscience.

Dr. Gerald Fischbach, Director of NINDS from 1998 to 2001, is equally adamant on this point. “There ought to be one strong intramural National Neuroscience Research Program,” he contends, “that crosses disciplines and brings behavior into contact with molecular biology. It is insane for each institute to recruit like Noah’s Ark, with two of each kind of person, and then keep them apart so they are not interacting.” (Reviewer’s note: these are words that should give pause to all PWPs.) But these are not the words to end with. Here, in total, is Dr. Rowland’s vision of NINDS in the next century: “Landmark discoveries have come with increasing rapidity during the 50 years since NINDS was founded. That process of acceleration will surely continue. Predictions abound about stem cells, gene therapy, bio-engineering breakthroughs, robotic surgery, and genomically designed drugs for diseases of all organ systems … it will be a wonderworld for NINDS, for all the other neuroscience institutes at NIH, for all of neuroscience, and for all people, everywhere.”

NINDS at 50, by Lewis P. Rowland, M.D. Published by National Institute of Neurological Disorders & Stroke, National Institutes of Health, October 2001.

Price: Free of charge. Contact Roberta Wilson at (301) 496-5924.

Lucky Man

People with Parkinson’s (PWPs) will see much to recognize in “Lucky Man: A Memoir,” the new book by Michael J. Fox. Stage by stage, they will follow the insidious development of the celebrity actor’s own Parkinson’s story, spelled out with both candor and charm.

He dwells with detached fascination on the discovery of the first symptom — a trembling in the little finger of his left hand. When he first noticed it, he thought the cause might have been an excess of celebration the night before. (He tells how he later fought off a tendency to use alcohol to relieve his symptoms.)

How many of his readers will recall the days when they first discovered a tremor, or a weakness of an extremity, and tried hard to associate the uncontrollable movement with some minor, transitory cause, or to disregard it?

Fox was a national celebrity for the roles he played in movies — most notably, “Back to the Future” and “Doc Holliday,” and television shows such as “Family Ties” and “Spin City.” In this short and highly readable book, he relates the story of how the symptoms progressed and grew.

He writes of the shock at noticing “… the left arm barely swinging and out of sync with the rest of my body. There was also a rigidity in my hip, creating a barely noticeable hitch in my gait, plus I’d wake up in the morning with a stiffness in my neck and left shoulder, as well as my knee, wrist, and ankle joints.” He finally felt compelled to consult a doctor. Sound familiar? And the diagnosis: “I’m afraid what you have is not something casual, but Parkinson’s disease.”

A victim of Parkinson’s while still only 30 years old, Fox writes feelingly about the shock of learning that he had a progressive disease, for which no cure was known.

For a period of eight years, which included undergoing a surgical procedure known as thaladotomy, he continued his career, hiding his symptoms from the public. Then, in November of 1998, unable to hide his symptoms any longer, he dramatically disclosed his condition. Nine months later, he made his first appearance before Congress, calling for increased funding for Parkinson’s research. Then, in the spring of 2000, he established the Michael J. Fox Foundation for Parkinson’s Research, and became a leader in advocating for an increased scientific effort to find the cause and a cure for the disease. That congressional appearance, along with the calls on House and Senate leaders that followed it, have been widely credited for having spurred creation of the Parkinson’s Disease Research Agenda, a $1 billion, five-year initiative of the National Institutes of Health.

Fox’s naturally upbeat attitude and self-deprecating humor are inspiring to many of his new friends and supporters in the Parkinson’s community. Not all of them, however, might be willing to join him in the dazzling quotation that appears on the jacket of his book: “If you were to rush into this room right now and announce that you had struck a deal — with God, Allah, Buddha, Christ, Krishna, Bill Gates, whomever — in which the ten years since my diagnosis could be magically taken away, traded in for ten more years as the person I was before, I would, without a moment’s hesitation, tell you to take a hike.”

Lucky Man by Michael J. Fox. Published by Hyperion. Available at most bookstores. Price: $22.95

300 Tips for PWPS

Shelley Peterman Schwarz has had a long time to research her subject. Diagnosed with multiple sclerosis (MS) 20 years ago, she sought ways to make life easier, safer and more fulfilling. She published her tips in books, newspapers and magazines throughout the country.

The advice that works for MS works equally well for Parkinson’s disease; hence, “300 Tips for Making Life with Parkinson’s Disease Easier.” There is a range of suggestions for caregivers as well as patients. Some random examples follow:

• Reduce stress and put your needs first; give yourself permission to say no, and don’t feel guilty.
• Try not to be self-conscious about the visible symptoms of your PD.
• Set priorities and focus on tasks that must be done.
• Be willing to change the way you do things. Remain flexible. Compromise.

The tips above apply to anyone. But there also PD-specific ideas for decorating, cleaning and cooking; suggestions for maintaining health; resource lists for every ingredient and implement you’ll ever need, etc. This is a very useful reference book.

300 Tips for Making Life with Parkinson’s Disease Easier, by Shelley Peterman Schwarz. Demos Medical Publishing. Price: $18.95