Matthew Seidman, Ph.D.
During the first quarter of the 17th Century, an English poet penned words which reflect one of the basic elements of humankind. Though used by millions for nearly 400 years, what he wrote has always held true. Unfortunately however, now at the end of the 20th Century, we see evidence that many people are so self-absorbed that John Donne's words are meaningless to them, in theory, though not in practice.
In the opus which ends with another famous line, " ... never send to know for whom the bell tolls; it tolls for thee," he wrote "No man is an island entire of itself." Perhaps John Donne used what many today consider sexist language, but that is not the issue here. What is significant, is that we are never truly alone, except for the two most meaningful instances of our lives: our births and our deaths. To paraphrase Donne no person is an island unto him or herself.
We might think that the hermit or the psychotic is alone, but upon reflection, we see that even this is not the case. For us all, events, the makeup of a person, as well as the mood someone is in at the time, colors interaction with others. We know that as we live and experience events, most of us also experience a multitude of emotions, from abject sorrow to utter joy.
We usually are by ourselves much of the time we want to be and some of the time we don't. It goes without saying that how we interact with those around us colors the kind of lives we live. How we are with others colors the happiness or the misery we feel and conversely, the happiness or misery we feel colors how we interact with others.
As much as we try to control events in our lives, there are times when we are helpless against certain forces. A tornado, hurricane or earthquake. A slick, icy patch in a road. A bomb planted on an airplane. A mechanical failure. A depletion of dopamine in the brain. These are things we can live without, but over which we have no control.
Perhaps studies will eventually disclose that there is a common thread running through the lives of all people with Parkinson's disease, but given the fact that this situation affects so many people in diverse populations and of varying ages, research is, at the least, laborious to prove that there is more than a haphazard quality as to who gets Parkinson's. People of every race and nationality have been affected, as have, surprisingly to many, people who have yet to reach their teens through those who are octogenarians and beyond.
While the diagnosis of Parkinson's disease has major implications for all who have the condition, for young onset people with Parkinson's disease, between the ages of 25 and 45, getting the confirming news is quite a blow. This is the age when most are raising families and working toward achieving goals. People are supposed to be indefatigable. There's much to do, yet.
Now, with the diagnosis, comes the eventual reality that this uninvited entity will ultimately affect almost every dimension of the lives of those with the condition and to a lesser degree, the lives of those close to them, as well as others with whom they interact. What the effects are, is not only caused by Parkinson's disease, but also the reaction to the condition.
Just as each one of us is unique, so do reactions vary upon a confirmed diagnosis of Parkinson's disease. There are no good or bad reactions; no right or wrong ones, since reactions are both cerebral and emotional and on one can tell someone else how to react, nor should they. It is how a person feels about himself or herself and the manner in which a person interacts with others after the diagnosis, that dictates the direction of the Parkinsonian's life and consequently the lives of those who are close.
Most people, unless touched by Parkinson's in some way aren't aware of the changes in living generated by this neurological condition. Often, when the possibility of Parkinson's is first mentioned, before the diagnosis is confirmed, the recipient of the news takes it in, but is not conscious of what the implications are.
J. A., married and working, doesn't remember his immediate reaction when the neurologist told him that the problem might be Parkinson's, but the news " ... did not, at that moment, bring any fear to my mind." However, after reading some of the information the physician provided, as well as some medical books, he says, "I began to get a little shakened about what I was finding out about PD. I continued with my work and within a month, I concluded that I did not have this chronic illness. I put all literature on it in a drawer and came to the conclusion that all of this was going away shortly."
This reaction is not uncommon. After the diagnosis, defense mechanisms frequently take over. Often, that means disbelief. The diagnosed person's spouse receives the same blow, but it is important for that person to stay as objective as possible, even though that objectivity, although transmitted, might not be received by the newly diagnosed.
With J. A., his wife, "did all she could" to convince him that sticking his head in the sand was not going to help him. "But I would not listen," he says. Having convinced himself that he did not have Parkinson's, J. A. believed his neurologist had erred, but upon his advice, he saw a Parkinson's specialist. When he said the diagnosis was correct, he said, "I was devastated."
Sometimes, too, those who are not yet informed about Parkinson's, think that the condition makes them outcasts. A. B., of northern California, thought he was "an outcast on society." He reasoned that "no one would want to be around someone with a chronic illness, especially an illness where physical movement was impaired."
Conversely, another Californian, M. H., whose symptoms were negligible when first diagnosed, states that "communication with close family and friends about the fact of my having Parkinson's was very important to me. I shared this information with my husband and parents from the beginning...it helped me to share what I was dealing with and from their questions, to formulate those of my own which I hadn't thought to ask yet."
It is evident that while no one rejoices at a confirmed diagnosis of Parkinson's, reactions differ, dependent upon the psychological makeup of the individual and although people can and do change the way they view themselves in the world and consequently, the way they interact with others, it is not beneficial for the Parkinsonian to be told that his or her reaction to being diagnosed isn't helping matters. That criticism is better left to a later time, if indeed, the situation then warrants it.
Once diagnosed, the ball is in the Parkinsonian's court. How the news is imparted to the immediate family and ultimately to others in that person's life, sets the stage for the future of the Parkinsonian and family.
For those married, it is important to realize that a spouse is affected almost as completely as is the person with the condition. Often, the spouse hears the diagnosis from the physician at the same time. When this is not the case, the Parkinsonian generally tells the spouse in a manner reflecting their interactions prior to diagnosis. One thing is certain; the spouse must be told and as soon as possible.
So, too, must the children be told. Here it is important to remember that a child's comprehension depends upon his or her age. Children fantasize a good deal of the time and a calm explanation suited to the child's age, is what is called for. Often, because of parental anxiety, superfluous information is given to the child, who is not old enough to understand and who might fantasize a worse scenario in order to comprehend.
When a child feels free to ask any question without recrimination, the child will dictate what is needed to be known. However, that does not preclude giving as much information to the child as you are sure the child understands. Of consequence is the way the information is imparted. If fear, foreboding and doom is communicated, that is what the child will absorb.
S. G., a midwestern mother in her early 30's, reports that "my children were six, three and two years old at the time of my diagnosis." She was then in her ninth month of pregnancy with her fourth child. She says, "I felt it was imperative for each of them to receive an age appropriate explanation of Parkinson's, so that they wouldn't develop their own misconceptions of my peculiar behaviors..."
When she knew that her children had observed some physical manifestation of Parkinson's, she explained without waiting to be asked. "Parkinson's was why my hands often shook," S. G. told them, "why my voice was frequently soft and difficult to understand, and why my feet and hands moved slowly..." Especially important to her was the explanation that Parkinson's was the reason she failed to smile much of the time. Her youngest daughter processed that information and brought smiles to everyone when at age three, she told the their pastor, that "My mom doesn't smile much because she has Parkinson's disease, but she smiles in her heart." Commenting on the way she told her children, S.G. continues, "I believe it is important to keep the conversation light and upbeat, to avoid creating fears. Children need to know that there are doctors currently working to find a cure, that Parkinson's is not fatal and that it is not caused by anything they, or anyone else, did. The more accepting the parents are of the Parkinson's, the more likely will the children be of accepting."
M. H. says, "We have always been open with our children about my Parkinson's. They were so young when I was diagnosed, that they never remember a time when it was not a part of our lives. Once we had answered some of our own questions, discussions of PD were as natural as dealing with other natural phenomena: Some people can curl their tongues; others can't. Some people have perfect pitch and others can't carry a tune. Most people can move very easily; Mommy can't because her body won't let her."
M. H.'s matter of fact approach in interacting with her children regarding Parkinson's, was received by her daughter, now a Russian Studies major in college, as the natural phenomenon M. H. intended it to be. Her daughter said that as a teenager, if she was asked how it was to live with a Parkinsonian, she would have answered that "I don't live with one at all; I live with my mother, who just happens to have Parkinson's. Her disease was equivalent to my being color blind. It was just a different and interesting aspect of me."
As the condition progresses, it is necessary to impart more information to the children. However, as M. H. says, "We did not go into future problems until later, when this became their concern...the result of being open with them has been that they are comfortable asking questions or sharing their concerns with us, rather than suppressing fears which can often be unfounded or grow out of proportion." Again, the manner in which information is given and how questions are answered are very influential upon how the child will react and what will be internalized.
Using humor helps to tolerate difficult situations. We know that Norman Cousins extended his life, via humor while battling cancer. Michel Monot, a long term Parkinsonian, sings "I can do anything you can do better," substituting the word "slower" for "better" in the song. M. H. reports that "We have also laughed a lot. We have standing jokes about 'Slow Dad' and 'Cardboard Mommy'." It must be noted, however, that it is not advisable to use humor in an attempt to mask reality. Children are very perceptive and might become alarmed thinking that the humor is hiding something fearful.
Children are concerned about their own physical well being and at some point will wonder if they might eventually have the condition, also. They'll want to know how the parent who has Parkinson's "got it" and they must be reassured that Parkinson's is not contagious. S. G. notes that when her six year old son came down with a virus, he said to her that "Maybe I'm getting Parkinson's disease, Mom. I've been around you a lot lately."
They will wonder, as well, whether they might not inherit Parkinson's. There is no evidence that Parkinson's is inherited, however studies are currently underway seeking to prove or disprove any genetic connection.
For the person with Parkinson's caring for the house and young children at home, feelings of being overwhelmed can occur. S. G. says that she "soon reevaluated my priorities. The bottom line was the children came first - before the house, the laundry and the yard work. If the children were clothed, fed three square meals and survived the day unharmed, I felt I had accomplished the essentials. Anything extra was a bonus."
S. G. simplified her tasks, especially with a healthy newborn. She found that using oversized outfits for the baby helped, and she substituted clothing with velcro, large snaps and zippers for outfits with buttons and ties.
As it is with children, the adult family members and friends of the person with Parkinson's will be concerned and to whom information is given, as well as how much, depends upon the relationship. Here, too, the way in which you communicate will color what is received and how the news is processed, Some people opt not to say anything, except to those closest, until symptoms become evident. This is a personal decision. M. H. says, "I did not tell my employer I had PD until it was necessary for me to interrupt work in order to take my medicine. I assured her it did not affect my work in any other way, and she was very supportive." Eventually, when it did affect her job, she stopped working.
While indeed, "no man is an island", some Parkinson's patients do live alone. The young, single patient, says Dr. Thomas Hutton, has special challenges to face in dealing with PD. Uncertainties of facing the future with PD, job security, and physical care when needed are compounded by uncertainties of finding a spouse who will accept a chronic disease, questions of self esteem and sexuality, and locating a support system geared to meet his/her special needs.
It is beneficial, Hutton continues, to keep in mind that many people with disabilities such as blindness, deafness, loss of limbs or paralysis, lead full lives with or without spouses and children. Parkinson's disease should not be any more intrusive than any one of these. YOPDs should be able to live a fairly normal lifestyle with some accommodations to the illness.
It is of paramount importance for the young, single Parkinson's patient to develop a support system of friends and family members and to maintain a positive self image. Hutton urges all young-onset patients, especially singles, to maintain a social life and to continue to be active in their favorite activities. Socializing with old friends is important as is making efforts to meet new ones. YOPDs, especially singles, should make efforts to participate in activities where there is an affirming atmosphere. Becoming involved in church, volunteer or community service work can change one's focus from personal problems to helping others. Taking a class in an area of particular interest or teaching a class to adults or children can be extremely rewarding. All of us need to concentrate on the positive aspects of our lives. This may be especially important to the young single person dealing with PD.
Some people with Parkinson's experience a groundless sense of embarrassment when symptoms or side affects of medication become obvious. For those who do not retreat into themselves and hide, their lives are richer by virtue of their coming to terms with Parkinson's and by the support which they experience from others.
A. B. ultimately faced his embarrassment head on. He states, "There comes a time when our Parkinson's disease shows...and we have a decision to make. We can be embarrassed and disappear from society or be proud and thankful that another day is dawning. We have the right to be ourselves in public and enjoy that right to the fullest." He finds that people are "sincerely interested in helping" and says, "There is nothing wrong with accepting help" adding "I am no longer embarrassed by my Parkinson's disease, nor am I embarrassed by its ramifications on me. I am what I am and I am proud of it."
M. H.'s husband has helped her to "keep the disease in perspective--as separate from who I am." She finds that people "still treat me as they did before; while I may be embarrassed when I spill food or freeze up and have to request help cutting my meat, no one else seems to be."
Early on, when she dealt with strangers, M. H. told sales clerks that "I had a 'stiff hand' and to excuse me if it took me awhile to sign a check." As symptoms especially the increasing dyskinesia, become problematic, she uses humor, such as lines like "I hope your aim is good on a moving target," when she has her hair cut. At times when it is appropriate, she explains that she has Parkinson's disease, which causes her to "thrash" (one of her favorite words, she says) and then proceeds to answer questions if asked.
While nearly all people who don't have Parkinson's are empathic toward those who do and support, help and understanding, rather than distance and rejection, are the norms, no one really knows what it's like to have Parkinson's except for someone else who has it.
It is not uncommon for people with Parkinson's, especially those newly diagnosed, to want to avoid other Parkinsonians. Their rationale is that they don't want to confront others who are in a more advanced state. It is important to remember that there is no timetable regarding Parkinson's progression. The disease affects each one on an individual basis, though there are some common factors.
On balance, the advantages of being with other people with Parkinson's far outweigh the disadvantages. Information is exchanged and support is received. The successes and problems of others are helpful to know about. Via support groups, first hand knowledge of Parkinson's is gleaned and through speakers working in the field, up to date data is transmitted, not to mention the emotional sustenance garnered.
Since there was no support group where he lived, J. A. started his own by writing a letter to the local newspaper. His group held its first meeting within several weeks after the letter appeared, "We all shared a common enemy," he says. "We have a bond that is hard to put into words, but it has made a great impact on all of our lives."
M. H. claims that her support group helps to deal with the emotional impact of Parkinson's, through the imparting of information and the knowledge that options, such as when to take drugs and how to keep in shape, etc., are available. She says, "Sharing fears and concerns, as well as accomplishments and successes, with other Parkinsonians has enriched my life with friendships and models for hope and courage."
M. H.'s daughter, who says her mother inspires her, adds "The job she has undertaken with her Parkinson's chapter and the successes she has accomplished with the group are proof of her success in meeting the challenge of her disease. She has refused to let Parkinson's keep her down."
J. A.'s thoughts bring to mind those of Victor Frankl, an eminent psychiatrist who survived the dehumanization of several Nazi concentration camps. Most of the inmates were average people, Frankl says in his book, "Man's Search for Meaning," but a focus outside of one's self and thoughts of being "worthy of their suffering" demonstrated man's/woman's ability to "rise above" an outward fate.
J. A. states, "I believe that human beings need to strive hard to find opportunity in adversity. There's no magic formula. We still have to deal with the bad times, as well as the good, but doing this together will have the likelihood of improving immensely our self-worth and our quality of life."
Parkinson's disease is a shared experienced touching not only the person with the condition, but to varying degrees, family, friends and acquaintances, as well. During a lifetime, a person can more often than not, find at least one thing positive in what is seemingly an adversity. That positive entity is the interaction with those whose lives we touch and who in turn are meaningful to us. Indeed, no one is an island.
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