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| Meet on the Ledge -- Young Parkinson Website | |||||||||||||||||||||||||||
| A Website for Young People with Parkinson Disease | |||||||||||||||||||||||||||
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Hi my name is Ben. I am a 47 year old male from Cliffwood Beach, New Jersey, married with 3 children. I was diagnosed with Parkinson Disease on June 12th 1998. I started with a tremor of the right hand and stiffness in the legs and depression. I am currently on Senimet 5 times a day. I now experience some relief. I want to dedicate this site to those who are in my shoes and need someone to communicate with. Please feel free to e-mail me about yourself. I would enjoy helping and listening to you. Together we can make it a little easier. I hope the following information on my page about PD could be of help to you. Ben | ||||||||||||||||||||||||||
| FACTS ABOUT PARKINSON DISEASE | |||||||||||||||||||||||||||
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Parkinson's disease: An Overview Parkinson's disease (PD) is a disorder of the central nervous system that affects between one and one-and-a-half million Americans. Because it is not contagious and does not have to be reported by physicians, the incidence of the disease is often underestimated. PD may appear at any age, but it is uncommon in people younger than 30, and the risk of developing it increases with age. It occurs in all parts of the world, and men are affected slightly more often than women. Primary Symptoms: Following is a list of the primary symptoms of Parkinson's disease. It is important to note that not all patients experience the full range of symptoms; in fact, most do not. Rigidity is an increased tone or stiffness in the muscles. Unless it is temporarily eased by anti-Parkinson's medications, rigidity is always present. However, it increases during movement. It is often responsible for a mask-like expression of the face. In some patients, rigidity leads to sensations of pain, especially in the arms and shoulders. Tremor is the symptom the public most often identifies with PD, but in fact, up to 25% of patients experience very slight tremor or none at all. When it is present, the tremor may be worse on one side of the body. Besides affecting the limbs, it sometimes involves the head, neck, face, and jaw. Bradykinesia means slowness of movement. This symptom is characterized by a delay in initiating movements, caused by the brain's slowness in transmitting the necessary instructions to the appropriate parts of the body. When the instructions have been received, the body responds slowly in carrying them out. Poor balance tends to affect people with PD. This is particularly true when they move abruptly, causing a sudden change in the position of their bodies. Some patients experience repeated falls due to poor balance. Walking problems commonly include a decreased or non-existent arm swing; short, shuffling steps (festination); difficulty in negotiating turns; and sudden freezing spells (inability to take the next step). Secondary Symptoms People with Parkinson's may also suffer from any of a long list of secondary symptoms. These include depression, sleep disturbances, dizziness, stooped posture, constipation, dementia, and problems with speech, breathing, swallowing, and sexual function. Again, it is important to note that different patients experience different symptoms. What causes these symptoms? The actual cause of PD is not known. Although a defective gene was recently found in a few families with extraordinarily high incidences of PD, most researchers believe that in the vast majority of cases, genetic factors alone are not responsible for causing the disease. Instead, it is suspected that Parkinson's usually results from the combination of a genetic predisposition and an environmental trigger. When PD occurs, degenerative changes are found in an area of the brain known as the substantia nigra, which produces dopamine, a chemical substance that enables people to move normally and smoothly. Parkinson's disease is characterized by a severe shortage of dopamine. It is this deficiency that causes the symptoms of PD. Commonly prescribed medications: Levodopa is a dopamine precursor, a substance that is transformed into dopamine by the brain. The prescription of high dosages of levodopa was the first dramatic breakthrough in the treatment of PD. Unfortunately, patients experienced debilitating side effects, including severe nausea and vomiting. Levodopa/carbidopa (Sinemet) represented a significant improvement. The addition of carbidopa prevents levodopa from being metabolized in the gut, liver and other tisues, and allows more of it to get to the brain. Therefore, a smaller dose of levodopa is needed to treat symptoms, and the unpleasant side effects are greatly reduced. Anticholinergics such as amantadine (Symmetrel) are drugs which cause the release of dopamine from nerve terminals. These drugs are often used when symptoms are mild and before Sinemet is prescribed, although they may also be taken along with Sinemet in later stages. Selegiline or deprenyl (Eldepryl) has been shown to delay the need for Sinemet when prescribed in the earliest stage of PD, and has also been approved for use in later stages to boost the effects of Sinemet. Dopamine agonists are drugs that activate the dopamine receptor directly, and can be taken alone or in combination with Sinemet. Agonists available in the United States include bromocriptine (Parlodel), pergolide (Permax), pramipexole (Mirapex) andropinirole (Requip). COMT inhibitors such as tolcapone (Tasmar) and entacapone, represent a new class of Parkinson's medications. These drugs must be taken with levodopa. They prolong the duration of symptom relief by blocking the action of an enzyme which breaks down levodopa before it reaches the brain. Side effects from medications Like the symptoms of PD itself, the side effects caused by Parkinson's medications vary from patient to patient. They may include dry mouth, nausea, dizziness, confusion, hallucinations, drowsiness, insomnia, and other unwelcome symptoms. Some patients experience no side effects from a drug, while others have to discontinue its use because of them. Surgical interventions Pallidotomy: This procedure has a long history in the treatment of Parkinson's disease, but it fell out of favor with the advent of levodopa. In recent years it has gained new popularity, mainly because magnetic imaging now allows it to be performed with far greater precision. Pallidotomy is indicated for patients who have developed dyskinetic movements in reaction to their medications. It targets the source of these unwanted movements, the globus pallidus, and uses an electrode to destroy the trouble-causing cells. As with any surgical procedure, there are risks involved. The most serious is the possibility of stroke; other risks include partial loss of vision, speech and swallowing difficulties, and confusion. Brain tissue transplants: Although they have produced encouraging results, transplantation surgeries are still in the experimental stage. The experiments began with fetal tissue, but now scientists are also working with genetically engineered cells and a variety of animal cells that can be made to produce dopamine. Deep brain stimulation: Like pallidotomy, this technique also seeks to stop uncontrollable movements. It is based on the technology of cardiac pacemakers. Electrodes are implanted in the thalamus or globus pallidus and connected to a pacemaker-like device, which the patient can switch on or off as symptoms dictate. The role of the patient Treating Parkinson's disease is not exclusively the doctor's job; there is much a patient can do to stay as well as possible for as long as possible. Exercise: For people with Parkinson's, regular exercise and/or physical therapy are essential for maintaining and improving mobility, flexibility, balance and a range of motion, and for warding off many of the secondary symptoms mentioned above. Exercise is as important as medication for the management of PD. Support groups: These groups play an important role in the emotional well-being of patients and families. They provide a caring environment for asking questions about Parkinson's, for laughing and crying and sharing stories and getting advice from other sufferers, and for forging friendships with people who understand each other's problems. Staying active: PD seems to advance more slowly in people who remain involved in their pre-Parkinson's activities, or who find new activities to amuse them and engage their interest. In a word, getting joy out of life has proved to be good for the health. | ||||||||||||||||||||||||||
| SUPPORT GROUP INFORMATION | |||||||||||||||||||||||||||
Support Group Functions | Under ideal conditions the person with Parkinson's and the neurologist work together, with the aim to improve the patient's physical and psychological conditions. Typically, at the time of the visit, the patient describes his or her condition; the doctor may ask more questions to elucidate the information given by the patient, and after examining the patient, decides the treatment. At the end of the visit the patient is asked to return for a follow-up visit, usually within the following three to six months. Fortunately, more information of the disease can be obtained and as a direct result quality of life and relationships may be improved. Parkinson's disease Support Groups have been successful in both areas. The groups strive to replace negative attitudes and give a more realistic and clear understanding of the disease and the basic care and treatment required. The Support Group members play a very important role in accomplishing these tasks. Support Groups are designed to help patients and their families come to a better knowledge and understanding of the disease. They are responsible for fostering a warm and supportive atmosphere in which everyone feels equally important. A Parkinson's Support Group also attempts to provide encouragement, reinforce and support to spouses, caregivers, families or friends. This is accomplished by exchanging information with others who are in similar positions. Questions most often asked are "How do you feel?", "What do you do?", and "How do you handle it?". Each person describes his or her own particular situation and in many cases helpful hints are exchanged. Many new and lasting friendships develop among the members. Support Groups are an asset to their communities. These groups help public awareness by making the existence of their group known to medical centers and community hospitals, placing notices of the meetings in local newspapers, posting notices in pharmacies, recreational centers for senior citizens, and other prominent places. In spite of all positive characteristics, we do not want to mislead the readers into thinking that a Support Group may take the place of a neurologist, physical therapist, psychiatrist or clinical psychologist. A Support Group is intended to help persons with Parkinson's adapt positively to maintain the best possible quality of life. A Support Group offers a friendly and reinforcing atmosphere. The success of these groups has led to the formation of over 800 Parkinson's Support Groups throughout the United States. To locate a support group, contact the Information and Referral Center closest to it. To start an APDA affilated support group call: 800-223-2732 To find a support group in your area call: 888-400-2732
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