Parkinson patient Rick Weeden (brother of author Curt Weeden) and his wife, Betty, play heroic roles in the novel Dutch Island. Like the island itself, the two are far from illusory. They are the custodians of a 1743 deed to land on the real Dutch Island. Signed by a representative of King George II, the deed hangs on a wall in their comfortable home in Portsmouth, Rhode Island.
While the couple's encounters at the close of the novel are fabricated, the everyday challenges met and overcome by these two remarkable people are no less inspiring.
Rick graduated from Worcester Polytechnic Institute with a mechanical engineering degree in 1968. Shortly after college, he accepted a job with the Raytheon Corporation, married a nurse named Betty Sargent, and settled in Portsmouth, Rhode Island. The two had a daughter and lived an all-American life until Rick turned thirty-three and was diagnosed with Parkinson's Disease (PD).
PD is idiopathic, meaning no clear explanation can be determined as to why some individuals contract the disease and others do not. In Rick's case, there is no known family history of PD, which led researchers to theorize the disease might not be genetic but possibly linked to an incident that took place while Rick was in college. During his junior year, Rick got caught in a campus brawl while trying to keep a young woman from getting injured. His chivalry cost him a serious head injury.
For ten years after his diagnosis, Rick's symptoms were controlled by medication. Trembling hands, rigid muscles, and general mobility problems were kept in check by different drugs. Then in 1989, Rick's body rebelled. He developed dyskinesias—a drug side effect all too familiar to many PD patients. His movements became uncontrollable. At rest, his legs constantly writhed. When walking, his feet would jerk up and to the side making a normal gait nearly impossible.
Rick was caught between two horrible options. Use the prescribed drugs, knowing his body would fight back with unmanageable consequences. Don't use the drugs and either freeze in place or deal with balance problems so severe that crawling was the only way to move from place to place.
With standard PD treatment alternatives exhausted, Rick sought the help of a Finnish neurosurgeon who had resurrected and refined a medical procedure called a pallidotomy. Surgeons made a small hole in Rick's skull and inserted a probe that carried an electrical current into the brain. An electrode was used to stimulate or inactivate cells that secrete dopamine, a neurotransmitter that carries signals between brain cells.
Rick underwent two pallidotomy procedures, one in Sweden and another at the prestigious Massachusetts General Hospital. For a few years after the operations, Rick's quality of life improved. But a pallidotomy is not a PD cure. It buys time. The disease is degenerative and eventually Rick was back to battling the loss of functioning mobility along with many other debilitating problems associated with PD.
Today, Rick's fight with PD continues. And the combat isn't restricted to countering muscle rigidity or motion problems that are the more apparent PD symptoms. He also has to fend off emotional and psychological assaults that can make the disease especially devastating.
Anti-PD medications are known to cause hallucinations and delusions in some patients - Rick included. The disease can also trigger mood fluctuations that happen when the brain stops producing a steady flow of dopamine. A patient can transition from a deep sense of sadness to euphoria in just minutes. Some physicians equate these extreme swings to a kind of bipolar disorder that plays itself out over and over again each day. Dutch Island's fictional account of Rick's resolve to keep from slipping into a mental as well as physical "down" period dramatizes what it is like for PD patients who must consistently cope with these "in" and "out" time brackets.
As with many other Parkinson's patients, Rick's medical problems can't be disguised. The challenges he faces are very obvious. What's not so evident is how the disease affects family and friends particularly his principal caretaker—his wife, Betty.
With a blend of toughness, intelligence, humor, and compassion, Betty has been Rick's PD navigator for nearly thirty-five years. Trained as an operating room nurse, Betty is able to give Rick around-the-clock, hands-on medical attention. Equally as valuable are Betty's administrative skills that she honed as director of surgical services at Rhode Island's Newport Hospital. Her knowledge, experience, and tenacity have made her the ideal patient advocate. She has left no stone unturned in the search for the best possible course of treatment for her husband; no avenue unexplored in the hunt for ways to make Rick's life as comfortable as possible.
What Betty hasn't done is to allow Parkinson's to get in the way of life. Determined that she and Rick should travel, Betty bought a used thirty-two-foot Class A motor home. For years, she has single-handedly driven Rick and family dog, Brandie, up and down the East Coast. A woman in her sixties operating a five-ton vehicle with a disabled husband on board might be inconceivable to some. But to those who know Betty, it's totally understandable. She's never had a shortage of fortitude and there's always been an oversupply of friendliness. So at campgrounds from Florida to New Hampshire, people have come to know and admire the Portsmouth Weedens. As well they should.
Betty and Rick are an incredible couple made all the more so by their extraordinary marriage. Few people are so bound together as these two. Betty has a devotion to her husband that is limitless and Rick's connection runs much deeper than what some might wrongly judge as dependency. Long before Rick's PD diagnosis, their relationship was out of the ordinary. These are people who truly care about each other; whose lives are totally interlocked.
For all the pain that Parkinson's inflicts on its victims and families, ironically it can also magnify what's good and right. It takes but a few minutes with Betty and Rick to discover this cruel disease gives definition to self-sacrifice, resilience, and unconditional love.