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When Parkinson's Strikes Early: Voices, Choices, Resources and Treatment

When Parkinson's Strikes Early: Voices, Choices, Resources and Treatment

by Barbara Blake-Krebs, M.A., Linda Herman, M.L.S., Susan Reese, R.N., L.C.S.W. (Foreword by)

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Parkinson's disease is often associated with the elderly, but half a million sufferers are in their early fifties or younger. This disorder carries both a physical and social stigma, with neurological degeneration made worse by the refusal of many to seek help. When Parkinson's Strikes Early grew out of an Internet discussion group in 1996, and was further inspired


Parkinson's disease is often associated with the elderly, but half a million sufferers are in their early fifties or younger. This disorder carries both a physical and social stigma, with neurological degeneration made worse by the refusal of many to seek help. When Parkinson's Strikes Early grew out of an Internet discussion group in 1996, and was further inspired by actor Michael J. Fox's revelation that he has Parkinson's disease. This book covers symptoms, side effects of medication, support networks, and surgery options, and explores the physical, emotional, and social struggles that face young people with Parkinson's. Resources, advocacy ideas, and an index are also included.

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When Parkinson's Strikes Early

Voices, Choices, Resources and Treatment
By Barbara Blake-Krebs Linda Herman

Hunter House Inc., Publishers

Copyright © 2001 Barbara Blake-Krebs and Linda Herman
All right reserved.

ISBN: 978-0-89793-340-7

Chapter One

Welcome to the Journey

The Honorable Morris "MO" K. Udall served in the House of Representatives for 30 years, from 1961 to 1991, as a congressman from Arizona. He was known nationally as a dedicated advocate for environmental protection, a champion of social reform, and "the funniest man in U.S. politics." Mo's integrity and humanity earned him the respect of his colleagues from all shades of the political spectrum. He aspired to one day being elected to the White House.

The bicentennial year of 1976 marked Udall's entry into the Democratic primaries for president. It also was the year that his Parkinson's disease symptoms first appeared, at the age of 54. Mo appeared symptom-free in public until the early 1980s, when his stooping posture, tremor, speech problems, and "Parkinson's mask" became noticeable.

As the disease progressed and his symptoms worsened, Mo fell under increasing pressure to retire from the House of Representatives, but he chose to resist, preferring to remain working at a job he loved. When the Arizona Republic urged him to retire in 1989, Udall defended his decision to remain in Congress, writing about Parkinson's, "It is not a fun illness.... It makes me stiff and causes me to lose facial expression. I sometimes think it is a more painful disease for others to witness than it is for me to bear. It is a disease I will not die from, but will die with." It was only after injuries from a fall brought on incapacitating disability that he resigned from office in 1991.

By 1993, when Canadian Barbara Patterson founded the Parkinson's Information Exchange Network (PIEN), an international e-mail discussion group, Mo was confined to a VA hospital bed, unable to walk or talk. Though he was never able to join the global conversation taking place in the Internet Parkinson's community, PIEN members felt his presence. His example of facing PD with courage and advocating for issues he believed in inspired many. "Do it for Mo!" became the rallying call of a growing grassroots campaign for equitable funding for PD research. Learning the art of advocacy and collaboration, PWPs worked together as a politically active community for the first time and found that even weakened voices could be heard on Mo's Capitol Hill.

Thus, it is fitting to include Representative Udall's experiences with Parkinson's disease alongside those of PIEN members from around the world who, like Mo, were also stricken with Parkinson's "too early" in their lives.

Parkinson's Disease: The Basics

NANCY MARTONE, TEXAS How many times have you seen someone and thought, "Gee, he/she must have Parkinson's disease"? My guess is not too many. However, you may have seen someone who has a noticeable tremor in one or both hands, or who seems to shiver on the hottest of days.

Perhaps you've noticed that a friend's posture has changed and he's walking more slowly and looks rather "stiff." Or how about that man in the theater, the one who didn't crack a smile the whole evening, and just sat there? Well, guess what! You may have been seeing people with Parkinson's!

What Is It?

Parkinson's disease (PD) is a progressive neurological disease affecting certain cells in the middle part of the brain known as the substantia nigra, a control center for movement. Dopamine produced by these cells is the neurochemical messenger essential for smooth and normal movements. These cells degenerate and die in PWPs at a more rapid rate than in the general population. Many researchers believe that an interaction between a genetic predisposition and environmental factors may trigger early braincell degeneration. When the loss of those cells lowers the supply of dopamine below necessary levels, a garbling of nerve messages between the brain and the muscles occurs-causing the movement problems of Parkinson's disease. (See Chapter 8 for more about possible causes of PD.)

Although there are some similarities between the neurodegenerative disorders of Parkinson's and Alzheimer's diseases, in terms of effects on their victims, they are opposites. While Alzheimer's destroys the mind, leaving the body functioning, Parkinson's destroys the body's ability to function, imprisoning the mind inside.

How Many People Have It?

Due to the scarcity of epidemiological studies on Parkinson's disease, conclusive statistics are unavailable. However, the following estimates are generally accepted:

* At least four million people throughout the world suffer from the disease. * There are over one million people in the United States and over 100,000 in Canada diagnosed with Parkinson's disease. * Each year 60,000 new cases are diagnosed in the United States. * The average age of onset is about 55. PD affects about 1 percent of the population over age 55. * Fifteen percent of all Parkinson's patients are diagnosed under the age of 50; 10 percent are under 40. * The numbers of younger people diagnosed with PD are growing.

Dr. Donald Calne, a Parkinson's expert, states, "Parkinson's has been called the silent epidemic.... And it's a growing one. I have tracked Parkinson's patients for more than three decades, and have already seen a fourfold increase in younger patients."

What Is Young-Onset PD?

The answer to this question depends on whom you ask. Some sources define young-onset as symptoms first occurring between the ages of 21 and 40. Others designate 45, 50, or 55 years of age as the cutoff point. Some definitions use the term "diagnosis" rather than "onset of symptoms." This is a significant difference, since it is common for younger patients to experience symptoms for many years before being diagnosed, and it is often difficult to know exactly when the symptoms began. Yet another statistical definition utilizes age 55, the average age of onset, as the cutoff for young-onset Parkinson's disease (YOPD).

Another method of defining YOPD is to consider the patient's life situation, rather than chronological age. The British organization YAPP&Rs (Young Alert Parkinson's Partners & Relatives) describes itself as a "special interest self-help group for people with Parkinson's and their families who are of working age and below." This outlook recognizes that PWPs of any age who are raising children and/or working outside the home have unique concerns, interests, and needs. Finally, according to PIEN list member Anne Rutherford, her support group in Newfoundland, Canada, "... lets you be a young Parkie if you say you are."

Since this book examines many aspects of life with Parkinson's, we believe that a holistic definition, which encompasses all of the above, is the most appropriate.

Early Missed Diagnosis: The Mask of Youth

Young-onset Parkinson's patients often share stories about the misdiagnosis of their early symptoms. Parkinson's can be a difficult disease to diagnose. Physicians who are not well trained in neurological disorders often do not consider PD as a possibility in younger men and women, even when faced with the typical symptoms. We advise anyone experiencing movement problems such as those discussed later in this chapter, under the subhead titled "The Early Symptoms of PD," to seek evaluation by a neurologist who specializes in Parkinson's disease or movement disorders. Many of the PD organizations listed in the resource guide (Appendix 2) offer assistance in locating these specialists.

JEANETTE FUHR, MISSOURI Welcome to the journey of living with Parkinson's disease. It's a twisting road of adventure, challenges, and milestones strewn with the objects we discard or lose along the way: broken dreams, grand plans, mislaid notions. Fortunately, many traveled the road before and are willing to share their exploits, triumphs, and defeats with those just beginning the trail.

DAVID BOOTS, CALIFORNIA I am David, 36 years old and diagnosed with PD for 4 years. Music is the brightest part of my life. I have been playing music since I was 13 years old, when I saw a kid about my age playing banjo on a local television show in Memphis. I've been hooked ever since.

I have won banjo and guitar contests, played in a variety of bands across the United States, and have taught (formally) at least 50 people how to play the guitar or banjo. Then came Parkinson's.

The symptoms of PD (first noticed in 1985) started to affect me significantly in 1988. At first, they were a nuisance, but I was still able to function well enough for the most part. I joined a bluegrass band and found that my late-night banjo playing had a new twist. As the evening wore on, my dexterity and speed were greatly reduced. My fellow band members were as confused as I was, since "David was playing fast just a while ago ... what's up?" I also heard people remark, "You play the banjo really well, but you need to smile more." Not knowing then about the PD mask, I assured people that I was smiling inside (though it rarely made it to the outside of my face).

In 1988 I went to the hospital to ask about these peculiar physical traits. The doctor, who was not a neurologist, checked me out and informed me, "You're experiencing an isolated muscle tremor. They can come and go at any age. I wouldn't worry about it." That was a relief. An isolated muscle tremor I could handle!6

RICHARD PIKUNIS, NEW JERSEY When I was 24 years old, my symptoms were apparent, but because of my age and general overall good health, I went undiagnosed.

I had the symptoms associated with a typical Parkinson's patient: slowness and loss of movement, postural instability resulting in frequent falls, a distorted gait and muscle rigidity. I remember not going on a family vacation because my body ached so badly and I was so stiff and rigid that walking consumed all my energy.

Because of a common misconception that Parkinson's disease is a geriatric disorder, the diagnosis wasn't as obvious as it should have been. Besides, I don't exhibit the most prominent, telltale symptom of Parkinson's-the tremor. In fact, according to the American Parkinson Disease Association (APDA), tremors only occur in about 70 percent of patients. It is usually the tremors that bring the patient to the doctor.

LYNDA MCKENZIE, ONTARIO, CANADA I began to notice a slight trembling of my arm when it was at rest. Because my daughter is diabetic, I thought it could possibly be low blood sugar, so I started doing blood readings. They were, of course, normal. I looked up "tremor" in our home medical guide. The book said that at-rest tremor is a symptom of Parkinson's, but it also stressed that this only happens to people over 55. I happily shut the book on that option.

HILARY BLUE, SOUTH AFRICA/ISRAEL/VIRGINIA In 1976, I worked as a cataloguer/classifier in an Israeli medical school library. The head librarian loved my handwritten catalogue cards-because my writing was so tiny. But it was getting tinier and tinier, until he called me in one day to complain that it was so tiny as to be completely unreadable!

At the same time, my arm had this strange feeling of weakness, and I was beginning to drag my right leg. Field day for the medical school! Every doctor, every resident, and every intern had his own theory of what was wrong with me. I was diagnosed with mono, MS, polyarthritis, ankylosing spondylitis, pressure on a nerve in the neck. You name it, I had it, and had the treatment for it-none of which worked.

Meantime I also had a disastrous marriage, which shot through my life like a ball of exploding destruction. About my physical symptoms I was told, "It's the stress. When you calm down, it will go away."

JUDITH RICHARDS, ONTARIO, CANADA In the late 1980s, I noticed a weakness in my legs and a stiffness in my neck, but most of all, no matter how much sleep I got, a constant feeling of fatigue. I thought I had MS, but my family doctor told me I would have had symptoms at an earlier age. He ordered blood work, but nothing showed up, so I was left to carry on as though there were nothing wrong with me. Was it all in my head?

Over the next couple of years, I started experiencing severe migraine headaches, and any stressful situation sent me into fits of uncontrollable shaking. In 1991, my family doctor referred me to a neurologist. Diagnosis? Stress, and once again I was sent on my way.

JOHN QVIST, SWEDEN I have had very vague symptoms since I was 18 years old, but it was when I was 27 that the symptoms started to be troublesome. The stiffness in my left arm was joined by tremor. Since I work with computers, that was very annoying.

My first neuro told me (after a spinal tap and some blood work) that it was MS. My physiotherapist, though, said she could have sworn it was PD. When I told the neuro what my PT had said, the doc hesitated for a fraction of a second, then just shook her head.

JOHN BJORK, WEST VIRGINIA Before the PD was diagnosed, I suffered from unexplainable panic attacks stemming from worry about unresolved physical symptoms. I knew something was wrong, but the medical community marked it down as emotional. (My tombstone will read: "See, I told you I was ill.") I'm a 59-year-old male and was diagnosed with PD about 10 years ago. At first, when I heard that term, I thought it referred to someone from Parkinsaw (a fictional village).

JIM SLATTERY, AUSTRALIA The eventual diagnosis of my condition was complicated by the fact that I had had a bad motor accident shortly before I began noticing symptoms of PD. I was pursuing an insurance claim, which, before it was settled, resulted in my being referred by one side or the other in the claim to 27 different doctors, none of whom suspected or even hinted at PD. Most seemed to favor a psychological or psychiatric disorder.

I was 44 at the time, and I think that was a large part of the problem. Before about 1990, most health professionals were taught, in the wording of a popular medical text, that Parkinson's is "a disease of the sixth decade," in other words, of people 50 and over.

RICK BARRETT, CALIFORNIA I'm 34 years old. About 5 years ago I started getting some stiffness in my left hand, which made handwriting difficult. The docs at that time treated me for carpal tunnel syndrome. The thought was that I spent too much time on the computer-but I barely typed two pages a day. After 2 years of therapy and assorted meds, I was finally referred to a neurologist, who after a couple visits made the diagnosis-PD.

WILL JOHNSTON, MARYLAND The missed diagnosis of PD is horrendous. The internist I use said I might have PD, but he didn't think so. Two neurologists couldn't come up with PD. One seemed to think of nothing but the DTs (delirium tremens). The other just didn't know. I tried a chiropractor-the effect was an increase in the PD symptoms. I was scared he might have done something wrong and caused harm to me with his manipulations.

Why is the diagnosis of PD missed so often? One reason is the way medical schools teach. To teach the students about PD and how to recognize it, which PD patient does the professor show to his students? He picks the "best" one, the stage-four or -five case with all the symptoms, rather than the stage-one or - two patient who has years of problems ahead. Picking the worst PD patient for the rounds is natural, but it is a disservice to the students and future patients.

JACQUELINE WINTERKORN, M.D., PH.D., CONNECTICUT/NEW YORK Why do I read exchanges among PD patients? Because as a physician I know that the only experts in a disease are the patients who have it.... Exchanges among PD patients and my own experiences have convinced me that there is a lot that is not taught and a lot that most physicians have not heard about this disease!

Unnecessary Surgeries and Treatments

One of the consequences of a missed diagnosis is that too commonly, young-onset PWPs are subjected to unnecessary and even potentially harmful therapies, medications, and surgery. Some are led to believe that the "problem is all in their heads" and are referred for psychological or psychiatric treatment. However, the "problems" facing these PWPs are the result of degeneration and death of their brain cells; they are not caused by emotional difficulties or an overactive imagination. By the time early symptoms of Parkinson's first become noticeable, it is estimated that 60 percent of nerve cells in the substantia nigra are already dead, and that 80 percent of their dopamine is lost.


Excerpted from When Parkinson's Strikes Early by Barbara Blake-Krebs Linda Herman Copyright © 2001 by Barbara Blake-Krebs and Linda Herman. Excerpted by permission.
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