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hi all i just found this while 'digging' on the net and will be adding it to the Maine Parkinson Society website at: http://www.geocities.com/maineparkinsonsociety/ (Part II of this report is already there) janet ------------------------------------------------------------------- Part I: Parkinson's Disease - a continuous struggle February 11, 1999 - There is nothing certain in life, but for some that is more true than for others. When Karen Bardo of Alna gets up in the morning, she knows she must cope with a multitude of changing physical and sometimes emotional symptoms. At the same time she must try to mitigate those symptoms with drugs and the results are highly unpredictable. Bardo, along with an estimated 7000 other Mainers, has Parkinson's Disease. The chronic and progressive disease is caused by degeneration of the brain cells that produce dopamine, a chemical in the brain that controls motor function. What causes the cell failure is unknown, but results of a recent study suggest environmental chemicals, such as pesticides or herbicides, play a role in those over 50 who contract the disease. The same study also found evidence that genetics plays a role for patients who are stricken before the age of 50. An administrative secretary for the Wiscasset School System, Bardo, 45, suffered for five years from an array of confusing symptoms she chalked up to stress before being diagnosed at age 43 with the progressive, presently incurable disease. Pain on the left side of her face was Bardo's first symptom in her long journey toward a correct diagnosis. Then, she became aware of muscular stiffness on her body's left side - sometimes she'd have trouble moving her legs and would have to literally start the movement by manually picking her leg up. She was tired all the time. All these things she reasoned were stress-related. In 1994 she began to have trouble writing. She went to her doctor and told him her hand shook, particularly when she was eating. But she laughed it off - and so did her doctor. In August of the following year, Bardo experienced a very common early symptom of Parkinson's: her shoulder "froze" and was painful - she couldn't lift her arm. She was referred to a physical therapist for treatment. In October, she noticed a repeated twitching of her toes on her left foot. At that point, Bardo, who had dismissed her symptoms as minor or stress-related, began to have a "very uneasy feeling." In January of 1996, her shoulder unfroze, but other physical peculiarities began to crop up. Bardo noticed her fingers and hands just didn't work right - as with her legs, she sometimes would have to "jump start" her left hand by picking it up. Simple things like eating and brushing her teeth became physically hard to do. Around that time Bardo showed her mother a sample of her changed handwriting. Her mother's first reaction was to say it looked just like Bardo's grandfather's writing after he had suffered a stroke - a change from normally sized letters to small. When she was referred by the podiatrist (foot doctor) to a special type of physical therapist, the therapist asked Bardo questions about multiple sclerosis and Parkinson's. She got angry and, unsettled, returned to her regular doctor and told him everything. One month later, in June of 1996, Bardo was sitting in the office of a neurologist, armed with a three-page list of all the physical changes and symptoms she had noticed affecting her over the past several years. "He asked me why I thought all this was connected and I said I hadn't a clue," Bardo remembers. There is no test for Parkinson's, but tests such as Magnetic Resonance Imaging (MRI) and others are performed to rule out a host of other problems that could cause similar symptoms. Patient observation and the taking of a detailed medical history are part of the diagnostic procedure. Diagnosis can be difficult, as there are a number of different types of parkinsonism, both alone and in connection with other conditions. The other parkinsonisms require different treatment than that for Parkinson's Disease, so accurate diagnosis is important. If everything else is ruled out, the patient is started on a trial course of anti-Parkinson's drugs, usually levodopa, or L- Dopa as it is more popularly known. If the drug works, it is considered confirmation that the patient has Parkinson's Disease. Bardo started taking L-Dopa in July 1996 and, within a month, experienced symptom relief. "I felt relieved when I found out - that I wasn't going to drop dead. It's almost 'Thank God, it's Parkinson's.' I was on a high - I could write again. But then you start to wonder what's going to happen to you," Bardo said. But despite her ongoing struggle with the disease, Bardo counts some positive things that have come as a result of being stricken with Parkinson's. "I am very open about having Parkinson's and I have met a lot of new people and friends. Now I find myself able to do things I never could, or would do, before - I have become very assertive. And it's a challenge to see what I can still do - Parkinson's hasn't stopped me from doing anything yet," Bardo said. She added, mischievously, "And I used it to get my husband up a mountain," referring to the amount of exercise she tries to do regularly as a way of retaining flexibility and muscle strength as long as possible. Symptoms The average age of diagnosis for People with Parkinson's (PWPs) is 58, but the disease can strike earlier - about 10 percent of patients are diagnosed before 40. In general, the disease affects patients' ability to move, their posture and their balance. Parkinson's is unpredictable and affects all patients differently, as do the drugs used to treat its symptoms. Initial symptoms often include fatigue, general malaise, shakiness, difficulty in movement, changes in handwriting and speaking volume, some loss of facial expression, irritability and depression. Most patients seek medical help when tremors become more apparent and begin to interfere with daily activities. Primary symptoms of the disease include a characteristic tremor (a rhythmic back-and-forth motion) that may affect hands and feet; rigidity with constantly tensed, contracted muscles, so the person feels achy and stiff or weak; bradykinesia, the slowing down or stopping of automatic movement; and postural instability, that can lead to falls. Additionally, common secondary symptoms include depression, emotional changes, memory loss/slow thinking, speech changes, difficulty in swallowing or chewing, urinary problems and/or constipation, skin problems and sleep disturbance. For Bardo her current symptoms entail persistent curling and gripping of her toes, all-over stiffness, muscle spasms and cramps in her feet and legs, internal muscular tremors, trouble sleeping and occasional difficulty in swallowing. For those who have family or friends with Parkinson's, it is advisable to know how to perform the Heimlich maneuver, as choking is a possibility. Bardo emphasizes the importance of proper diet, exercise and stress avoidance as aids in controlling symptoms. Drug therapy Further complicating life with this unpredictable disease is the nature of the drug therapy - while very effective for 80 percent of PWPs, the drugs themselves often have a number of unpleasant side effects, such as nausea, vomiting, low blood pressure and restlessness - and, over time, they become less effective in controlling symptoms. Both the timing of the drug, as well as the amount, are crucial when it comes to controlling symptoms. Bardo said it is important for newly diagnosed patients to remember that drug side effects usually disappear or diminish over time and, sometimes, simple things like taking the drug with food, or without food, or drinking gingerale can mitigate some side effects. One of the most troublesome side effects of L-Dopa for all patients is the occurrence of dyskinesia (involuntary movements such as twitching, nodding or jerking) for patients who take the drug over time. Another problem with long-term levodopa use is that disease symptoms eventually start to reappear - at first, patients may notice more severe symptoms right before their first daily dose, and experience muscle spasms as the dose begins to wear off. The period of effectiveness of each dose may shorten, or unpredictable changes in movements - from normal to parkinsonian and back again. Delaying use of the drug as long as possible, using as low a dosage as possible, and using "agonists" to block dopamine are effective, but generally cause the disease's symptoms to reappear or worsen. Controlling the disease's symptoms, while mitigating the drugs' side effects is a daily chore and challenge for each patient - an up and down, on and off, often unpredictable balancing act. Surgery One of the new friends Bardo met, via a computer listserver database of PWPs, is Greg Leeman, 38, of Portland. Leeman was diagnosed quite young, at age 30, but had symptoms beginning when he was 27. Leeman, already experiencing severe slowness of movement (bradykinesia) and freezing, as well as dyskinesia on his right side, chose to have a surgical procedure (pallidotomy) performed to relieve those symptoms. Although pallidotomy is not successful for everyone and it needs to be performed while the patient is awake (Leeman described the procedure as "terrifying"), in Leeman's case it improved his symptoms immeasurably and immediately. He is already thinking about having a second procedure done to relieve the less severe symptoms on his left side. There are a number of different surgical procedures being researched currently, and there have been recent improvements in the procedure and equipment used in pallidotomies in just the past year. But despite the surgical improvement for Leeman, he still must take drugs to control the disease. "Every day is a cycle of drugs, on and off. You feel up and positive when it's working and depressed when it's not working." he said. Isolation Leeman uses a number of keywords in his description of life with Parkinson's: Uncertainty, emotional roller coaster, self- consciousness, withdrawal and reclusiveness. His symptoms, both disease and drug-driven, became so severe he was forced to quit his job and, at one point, didn't leave his apartment for almost two months. He was very depressed and his friends and family were worried. It was shortly thereafter Leeman decided on the pallidotomy as a last resort; he has since returned to work part time. Bardo put it succinctly: "People tend to disappear. When people get dyskinesia - they just don't go out. People stare. It's uncomfortable. It's an embarrassment to eat." Joan I. Samuelson, president of the Parkinson's Action Network, herself a patient, addressed the House Appropriations Committee last year to seek support for more Parkinson's research funding and described Parkinson's as a process of loss that strips away essential functions. "We slip out of the functioning world and are forgotten. We end up silenced and imprisoned in our homes, our care facilities... Our suffering is invisible to the outside world. As a consequence, we are neglected," Samuelson said. There are an estimated one million PWPs nationally and the disease takes its toll not only physically, emotionally and mentally, but also financially, individually and societally. While many Parkinson's sufferers are forced to stop working, they usually live out normal life spans. Next week - a new resource In Part II of this article, readers will discover that Bardo and Leeman take local action to provide a new resource for Maine PWPs - and the Maine Parkinson Society was born. by Sue Cereste The Lincoln County News [log in to unmask] http://www.lcnews.maine.com/1999-02-11/parkinson_s_disease.html ------------------------------------------------------------------- janet paterson, an akinetic rigid subtype parkie 53 now / 44 dx cd / 43 onset cd / 41 dx pd / 37 onset pd TEL: 613 256 8340 SMAIL: PO Box 171 Almonte Ontario K0A 1A0 Canada EMAIL: [log in to unmask] URL: http://www.geocities.com/janet313/