Meeting up with Malcolm Smith stands as one of the most unique interviewing experiences of my life. Seated in the large showroom of Malcolm Smith Motorsports in Riverside, CA, I find myself mulling over a variety of ways to approach my introduction. Do I start off with, “Hey, how have you been? Long time, no see”? Or maybe, “Hi, I’m with ABILITY Magazine. I’d like to take a minute of your time”? Or what about, “Should I have set an appointment?”

Yes, this is indeed a surprise visit. My thoughts rush upon me, awkward and stumbling. But why should I be nervous? After all, I’ve had sit-downs with plenty of famous, high-powered people. And yes, Malcolm Smith is famous. Famous for his many bike races, and famous for winning. Most of all, he’s famous for On Any Sunday, a documentary in which he starred with Steve McQueen. That film has developed something of a cult following. 

Today Malcolm Smith is grey-haired and nearing seventy. But years ago, kids like me marveled at his skill, speed and charm. Fans of all ages were wowed by his bravery and strength. But my connection to this icon is of a different kind altogether. In short, Malcolm Smith changed my life.

As a teenager, I moved from the Pine Barrens of New Jersey to the motorcycle mecca of sunny California with a dream of racing motocross. (And after that?  Well, maybe then I’d start thinking about college.) Upon arriving in Southern California, I tracked down the great Malcolm Smith—I was riding Huskys at the time and he was a major Husky dealer—and informally “auditioned” for him. Apparently he liked what he saw. He gave me a job.

It might not sound like much on paper, but at the time, it was the biggest opportunity of my life—a circumstance that many back home couldn’t even believe. While out chasing my dream, I not only got to meet a legend in the field but had also been hired to be his salesperson. I seemed to have fallen into a lucky wormhole. My new boss would power my racing dreams, I was certain, and maybe someday soon I’d be racing my Husky with fellow rider Steve McQueen.

That’s not exactly how it played out. In fact, Malcolm fired me after my first day on the job. As high as I had felt just a day earlier, I suddenly felt just as low. I gathered myself up and changed my plans. Instead of pursuing motorcycling, I went to college—a decision that led me to writing about my encounter with Malcolm Smith in this magazine I created 20 years ago.

And today, meeting with Malcolm again after all these years, I find that I am nervous. Though Malcolm is older now, he still has that memorable handshake, with hands like a vice from years of hard riding. I’ve started riding again, too—but my handshake is more like that of a marshmallow.

Malcolm and I sit in his office, where I share my story. He says, “I remember your face, and I know the salesperson who was working at that time, but I don’t remember that.” You see, Malcolm had fired me the first day on the job because his one and only salesman had quit and then had returned. Malcolm could only afford to keep one salesman at that time. I had to go.
 
Today Malcolm Smith Motorsports has over 50 employees. Before the financial slow-down, it had boasted close to twice as many. His eyes gleam as he tells me about his latest adventure: “This is the newest thing I ride,” he says. With a smile, he shows me a video on his iPad. I can’t quite figure out what I’m seeing—and I certainly don’t understand what he means by ‘ride.’ I see what looks like a whale. But where’s the motorcycle?
 
“Watch,” he says. “That’s me. And those are my kids. On a shark.” Malcolm points to the screen. “Largest fish in the world. It’s called a whale shark. It’s a filter feeder.” The underwater footage shows Malcolm and his adult children, each equipped with snorkels, holding onto the dorsal and tail of a huge sea creature.

I imagine this is about the strangest thing Malcolm could have shown me. But then I find his little aside is connected to a deeper meaning: in 1995, Malcolm and his motorcycle buddies began taking trips to Mexico, where they started a non-profit and built an orphanage called El Oasis. The bay near that orphanage happens to be the feeding area for about 20 whale sharks.

Malcolm and I talk about his trembling hand. Diagnosed with Parkinson’s disease eight years ago, Malcolm tells me he went to Europe for stem-cell therapy but found it a waste of time and money. I ask if he has ever thought about deep brain stimulation (DBS), a procedure in which a probe is inserted into the patient’s brain, allowing doctors to map out areas of concern. I’ve seen first-hand evidence of the surgery’s efficacy. Malcolm says he doesn’t know if he’s ready for that just yet. (See article below for more information on Parkinson)
 
The more time Malcolm and I spend together, just talking, the more aware I become that he hasn’t taken his medication. His hand begins twitching. I mention this to him and learn his medications are in his car. I urge Malcolm to go out and get them. “I do well with the meds,” he says with a half-smile, “but I don’t always take them on time.” I suspect his doctor would not approve of this self-guided medication schedule.
 
Because numerous people angle to talk to Malcolm as we walk through his shop, it takes almost 30 minutes for us to leave. On our walk, Malcolm decides to share some of his family background. His father met his mother while traveling in Alaska, he says with a glow in his eyes. “The two hiked up a mountain together and talked for a long time. A day later, they got married. When I was born, my mom was 33 and my dad was 81”.
 
After Malcolm’s father had died, Malcolm’s mother reconnected with her first love, and they married. Malcolm grew up with his step-father. Was there a chance that Malcolm’s step-father might have actually been his father? Malcolm says no. The family resemblance is too strong, he says, between himself, his father, and his own son.

In 1998 Malcolm Smith was inducted into the Motorcycle Hall of Fame. Today he oversees his motorcycle dealership and conducts special invitation-only, off-road rides in Mexico and South America. On the television program National Geographic Explorer, Malcolm Smith was profiled with singer Lyle Lovett on a motorcycle ride in Chile. Parkinson’s hasn’t slowed down Malcolm’s riding one bit, and he still finds time to give talks about the early days of off-road riding and preservation of riding areas. If you ever want to join Malcolm for a ride, there’s only one condition: no wimps. After all, he’s still a legend...... read more in ABILITY Magazine

In 1817, English apothecary James Parkinson documented a “shaking palsy” in some of his patients. Today the disease that bears his name remains a sobering medical reality: approximately one million Americans suffer from Parkinson’s disease (PD) and about 50,000 new cases are diagnosed each year.

As it is a neurodegenerative disease, PD is a progressive condition. It results from deterioration in an area of the brain known as the substantia nigra, a region of cells that control movement. The primary job of these cells is to produce a substance known as dopamine—one of many substances called “neurotransmitters” that facilitate communication between brain cells (neurons).

No scan or lab test is available by which to diagnose PD, leaving the condition only identifiable by way of its symptoms and physical manifestations. The disease begins insidiously and progresses gradually, often emerging as a barely detectable hand tremor. This might be followed by loss of facial expression, difficulty initiating movement, mumbled speech, or a lack of arm-swinging while walking. In advanced stages of PD, dementia may manifest.

Additional problems known to affect people with PD include sleep disturbances, difficulty swallowing and chewing, problems with urination, constipation, and loss of libido. It should be noted that several other diseases are comprised of some of these symptoms and can easily be confused with PD. For example, multiple symptoms of Alzheimer’s disease overlap those of PD.

Though the precise cause of PD remains unknown, research has raised the likelihood that a variety of factors may be involved. Changes in a person’s genes, either by way of inherited or environmental factors, are suspected. Toxins or certain viruses in a person’s environment may also trigger signs of the disease.

Certain risk factors for developing Parkinson’s disease have also been identified. People with family members who manifest the disease have increased risk for PD, although not to a great extent. Research indicates men are more likely to develop the condition than are women, and the disease seldom occurs in anyone before late middle-age. Constant exposure to certain herbicides and pesticides has been associated with a greater risk of Parkinson’s disease.

Changes in brain chemistry are characteristic of Parkinson’s disease patients. One noteworthy neurological alteration is the loss or failure of a special collection of cells in the brain that produce dopamine, a chemical messenger. Many of the neurons that communicate by way of dopamine are involved in movement. Norepinephrine—a neurotransmitter involved with the autonomic part of the nervous system—is also deficient in the brains of PD patients, a fact that can influence digestion and blood pressure regulation.

Despite the unanswered questions and harsh symptoms that remain aligned with Parkinson’s disease, medications for the condition can yield a dramatic and positive effect. The most effective of these medications, levodopa, is a natural substance that (when taken as a pill) converts to dopamine inside the brain. However, this drug has to be combined with a drug called carbidopa that prevents levodopa’s conversion to dopamine before it reaches the brain. The combination of these drugs—known as Sinemet—helps a patient avoid potential side effects, particularly nausea.

After prolonged use of the drug, however, the effects of Sinemet tend to wear off at an accelerated rate. Further complicating matters, the Sinemet dosage sometimes has to be lowered to reduce side effects. Both of these issues lead to poorer control of the symptoms of PD.

Drugs that mimic the effects of dopamine, called dopamine agonists, are also used in the treatment of Parkinson’s disease, but they tend to be less effective than those drugs previously mentioned. On the other hand, dopamine agonists do not tend to wear off as quickly and can be used to help smooth out the waxing and waning of Sinemet.

Medications used in the treatment of PD have many unpleasant side-effects. These include hallucinations, involuntary jerking of the extremities, drowsiness, nausea, and a sudden drop in blood pressure upon standing. In addition to use of medications, surgery can play a role in treatment of PD symptoms. Typically, however, such measures are reserved for patients who suffer disabling side effects from medications or who experience poor control of their symptoms.

Until recently, surgical treatment of PD had involved placement of a small probe into a particular area of the brain, destroying that area and resulting in diminished tremor and improved movement. Lately, however, use of a small electrode in a different area of the brain has proven more effective. During surgery, this electrode is connected to a continuous stimulator that is permanently implanted under the patient’s skin. Like any surgery, this procedure (called Deep Brain Stimulation) has risks, such as infection or brain injury caused by bleeding or stroke. Such outcomes, however, are rare...... read more in ABILITY Magazine

Articles in the Alfred Molina Issue; Senator Tom Harkin — IDEA 35 Years; Ashley’s Column — Girls Ride; Acupuncture — Ancient Chinese Secret, Revealed!; Aphasia: The Movie — A Film Beyond Words; Love Simple — Lights! Camera!...Lupus?; Trail Mix — The Wilderness Made Accessible; Amputee Recovery — From the Middle East to Haiti; Lachi — A Voice in the Darkness; Laura Hogikyan — The Play’s the Thing; Creative Arts Festival — Veterans with Artistic Vision; A Trip to Germany — Disability and Deutchland; A Day In The Life — Nursing with a Movement Disorder; Alfred Molina — Law & Order and the Injustice of AIDS; Malcolm Smith — A Ride Down Memory Lane; Shakes — Parkinson’s Disease; Victoria Taylor — Excerpt From Caitlin’s Wish; Sally Franz — Excerpt From Scrambled Leggs; ABILITY's Crossword Puzzle; Events and Conferences... subscribe

Excerpts from the Alfred Molina Jan/Dec 2010-11 Issue:

Alfred Molina — Interview

Love Simple — Lights! Camera!...Lupus?

Malcolm Smith — A Ride Down Memory Lane

A trip to Germany — Disability and Deutchland

Creative Arts Festival — Veterans with Artistic Vision

Amputee Recovery — From the Middle East to Haiti