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Parkinson’s Disease, that will fund research to ultimately find a cure.

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Information for Parkinson's patients and families
Ten Things Every Parkinson's Patient Should Know
by David L. Cram, M.D., AddicusBooks.com

1. Remember the importance of a positive attitude.
2. Establish a good relationship with your doctor.
3. Learn as much as you can about your disease.
4. Maintain a daily exercise program.
5. Take your medications on time exactly as prescribed.
6. Don't let the disease consume you- are the master.
7. Contribute some service to your community-it will nourish you emotionally and get your focus off yourself.
8. Attend support groups.
9. Remain as independent as you can for as long as you can.
10. Live each day to the fullest and never lose hope.

Ten Things Every Caregiver of a Parkinson's Patient Should Know

1. Understand the importance of taking care of yourself, too.
2. Realize it is normal to experience a range of feelings-anger, sadness, loneliness, guilt, resentment.
3. Learn constructive ways to channel emotions-exercise, talk with friends, journal, or practice relaxation techniques.
4. Practice positive self-talk.
5. Recognize depression and get help for it.
6. Arrange to make time for yourself-your interests and friends.
7. Attend support groups and talk about your problems.
8. Learn how to face your loved one's physical challenges.
9. Let a loved one do as much as possible while he/she is still able
10. Deepen your faith and spirituality

David Cram, M.D., was a 54-year old physician with a thriving medical practice in 1989. He was at the peak of his career. Life was good. It was only when his fatigue persisted that he sought medical attention. His reaction was one of stunned disbelief when he got the diagnosis: Parkinson's Disease. Feeling alone and useless, withdrew from others and spiraled into a depression. Soon, he had to retire from the work he loved.




 

What is Parkinson's disease?

Parkinson's disease is a movement disorder that is chronic and progressive, meaning that symptoms continue and worsen over time. As many as one million Americans suffer from Parkinson's disease. While approximately 15 percent of people with Parkinson's are diagnosed before the age of 50, incidence increases with age. The cause is unknown, and although there is presently no cure, there are many treatment options such as medication and surgery to manage the symptoms.

Parkinson's disease occurs when a group of cells in an area of the brain called the substantia nigra begin to malfunction and die. These cells in the substantia nigra produce a chemical called dopamine. Dopamine is a neurotransmitter, or chemical messenger, that sends information to the parts of the brain that control movement and coordination. When a person has Parkinson's disease, their dopamine-producing cells begin to die and the amount of dopamine produced in the brain decreases. Messages from the brain telling the body how and when to move are therefore delivered more slowly, leaving a person incapable of initiating and controlling movements in a normal way.

Common Symptoms

It is important to realize that not every person with Parkinson's develops all signs or symptoms of the disease. For example, some people experience tremor as the primary symptom, while others may not have tremor but do have balance problems. Also, for some people the disease progresses quickly, and in others it does not. The following are descriptions of the most common primary symptoms of Parkinson's disease.

Tremor: In the early stages of the disease, about 70 percent of people experience a slight tremor in the hand or foot on one side of the body, or less commonly in the jaw or face. It appears as a "beating" or oscillating movement. Because the Parkinson's tremor usually appears when a person's muscles are relaxed, it is called "resting tremor." This means that the affected body part trembles when it is not doing work, and it usually subsides when a person begins an action. The tremor often spreads to the other side of the body as the disease progresses, but remains most apparent on the original side of occurrence.

Rigidity: Rigidity, also called increased muscle tone, means stiffness or inflexibility of the muscles. Muscles normally stretch when they move, and then relax when they are at rest. In rigidity, the muscle tone of an affected limb is always stiff and does not relax, sometimes resulting in a decreased range of motion. For example, a person who has rigidity may not be able to swing his or her arms when walking because the muscles are too tight. Rigidity can cause pain and cramping.

Bradykinesia: Bradykinesia is the phenomenon of a person experiencing slow movements. In addition to slow movements, a person with bradykinesia will probably also have incomplete movement, difficulty initiating movements and sudden stopping of ongoing movement. People who have bradykinesia may walk with short, shuffling steps (this is called festination). Bradykinesia and rigidity can occur in the facial muscles, reducing a person's range of facial expressions and resulting in a "mask-like" appearance.

Postural instability or impaired balance and coordination: People with Parkinson's disease often experience instability when standing or impaired balance and coordination. These symptoms, combined with other symptoms such as bradykinesia, increase the probability of falling. People with balance problems may have difficulty making turns or abrupt movements. They may go through periods of "freezing," which is when a person feels stuck to the ground and finds it difficult to start walking. The slowness and incompleteness of movement can also affect speaking and swallowing.

What causes Parkinson's?

Why an individual develops Parkinson's disease remains unclear. The cause is probably a combination of genetic and environmental factors, and may vary from person to person. Although the cause of Parkinson's remains unknown, scientists have identified factors that contribute to Parkinson's in some patients. For example, people over age 60 have a two-to-four percent risk of developing Parkinson's disease, compared with the one-to-two percent risk in the general population.

Below is information on the two factors that scientists think are most likely to cause Parkinson's disease.

Genetics About 15 to 25 percent of people with Parkinson's report having a relative with the disease. In large epidemiological studies (studies that deal with incidence, distribution and control of disease in a population), researchers have found that people with an affected first-degree relative, such as a parent or sibling, have a two-to-three fold increased risk of developing Parkinson's, as compared to the general population. This means that if your parent has Parkinson's, your chances of developing the disease are slightly higher than the risk in the general population.

The vast majority of Parkinson's cases are not directly inherited, but researchers have discovered several genes that can cause the disease in a small number of families. Some of these genes involve proteins that play a role in dopamine cell functions. Because genetic forms of a disease can be studied in great detail in the laboratory, and because understanding the rare genetic forms of Parkinson's disease may help to understand more common forms of the disease, genetic aspects of PD are currently the subject of intense research.

Environmental Factors Some scientists have suggested that Parkinson's disease may result from exposure to an environmental toxin or injury. Epidemiological research has identified several factors that may be linked to PD, including rural living, well water, herbicide use and exposure to pesticides. Also, a synthetic narcotic agent called MPTP can cause immediate and permanent parkinsonism if injected. These environmental factors are not useful in diagnosing the cause of Parkinson's disease in individual people. In fact, there is no conclusive evidence that any environmental factor, alone, can be considered a cause of the disease. However, these environmental factors have been helpful in studying laboratory models of Parkinson's disease. Scientists are continuing to pursue these clues to establish more concrete linkages.

Most experts share the opinion that Parkinson's is caused by a combination of genetic and environmental factors. However, no one yet knows what this combination is.

The Role of the Patient

Treating Parkinson's disease is not exclusively the doctor's job; there are many things a person with Parkinson's can do to contribute. Regular exercise, joining a support group, maintaining a healthy diet and taking part in a clinical trial are just some of the things you might consider.

A Healthy Patient/Doctor Relationship: Making an accurate diagnosis of Parkinson's - specifically in its early stages - is difficult, but a skilled practitioner can come to a reasoned conclusion that it is Parkinson's. Every person diagnosed with Parkinson's should consider getting a second opinion from a neurologist who specializes in movement disorders and is up-to-date on research and approaches to therapy.

Locating a qualified physician is a first step; next is considering whether the physician is the right one. A person with Parkinson's will work with a physician for many years. Consider these questions:

  • Are you comfortable speaking with your physician?
  • Do you feel respected by your doctor?
  • Are questions answered to your satisfaction or do you come away from a visit feeling that you have not been taken seriously?
  • Can you get in touch with the doctor between visits?

To find a neurologist or movement disorder specialist in your area:

  • Ask your primary care physician for a referral
  • Seek referrals from other living with Parkinson's
  • Contact your insurance provider for a list of neurologists or movement disorder specialists in your network
  • Contact PDF for a referral.

Exercise: For people with Parkinson's, regular exercise or physical therapy is crucial for maintaining and improving mobility, flexibility, balance, range of motion and for warding off many of the disease's secondary symptoms such as depression and constipation. PDF offers Motivating Moves for People with Parkinson's, a unique program of 24 seated and stimulating exercises that were created especially for people with Parkinson's. Copies are available for ordering through the website, or you can call or email PDF for more information. As with every aspect of your care, always consult your doctor before starting an exercise program.

Support groups: For many people, support groups play an important role in the emotional well-being of patients and families. They can provide a caring environment for asking questions about Parkinson's, for sharing stories and advice and for creating friendships with people who have experienced similar problems. To find a support group in your area, please call or email PDF. In addition to in-person support groups, many people also find online groups and list servs helpful. For a listing of list servs that serve the Parkinson's community, please request our publication, Web Resources for People with Parkinson's Disease.

Diet: Many people with Parkinson's lose weight because of poor appetite and inadequate food intake. It is recommended to maintain a full diet that contains all the daily nutritional requirements, including extra fresh fruits and vegetables for fiber to help prevent constipation and plenty of fluids to keep hydrated.

Some people who take levodopa find that protein may interfere with the medication's effect. Limiting protein intake or staggering the medication dosing to avoid conflicts with meals can help this problem. However, adjustments in protein intake are only worthwhile for those very few people whose response to levodopa is indeed sensitive to dietary protein.

People with Parkinson's who lose weight for no clear reason should discuss this with a physician.

Physical, Speech and/or Occupational Therapy: These therapies can help Parkinson's patients control their symptoms and make daily life easier. Physical therapy may increase muscle strength and flexibility and decrease the incidence of falls. Speech therapy can increase voice volume and assist with word pronunciation. The Lee Silverman technique is a special speech therapy that can be very beneficial to people with Parkinson's - for further information see www.lsvt.org.

Occupational therapy gives people alternative methods of doing tasks that they can no longer perform with ease. These options may provide a stronger sense of control when living with Parkinson's disease. A neurologist should be able to provide recommendations for these therapies and, if needed, a referral. These therapies may or may not be covered by insurance.

Clinical Trials: Clinical trials (also called medical research, clinical research or a clinical study) help researchers answer specific questions about the safety and efficacy of new treatments by studying its effects in people. They are an essential and necessary component of the scientific research process. Simply put, there is no other way for research to show that a proposed treatment works. In addition to contributing to research, joining a clinical trial can provide a person with early access to potentially-helpful Parkinson's treatments and drugs that are not yet on the market.

The lack of participation by people with Parkinson's disease has resulted in some trials being unnecessarily delayed.

information from
http://www.pdf.org

FOX FACTS from www.michaejfox.org

More than six million people worldwide are living with Parkinson’s disease – a chronic, degenerative neurological disorder characterized by symptoms that typically progress from mild tremors to complete physical incapacitation.

In its final stages, Parkinson’s leaves people unable to move, speak or swallow. 60,000 new cases (nearly one every ten minutes) will be diagnosed in the United States this year alone.

There are no known ways to prevent or accurately predict who will develop Parkinson’s disease. 40 percent of people diagnosed are under age 60. The incidence of Parkinson’s is increasing as the “Baby Boomer” population ages and more people are exposed to the environmental toxins that may play a role in triggering the disease.

Despite modest advances in pharmaceutical and surgical therapies, there is no known cure for Parkinson’s disease. Current treatments mask Parkinson’s symptoms but do not alter or slow disease progression. What’s more, the efficacy of available therapies diminishes over time, leaving few treatment options as the disease advances.

Actor Michael J. Fox established The Michael J. Fox Foundation for Parkinson’s Research in 2000 shortly after announcing his retirement from the ABC television show Spin City. In 1998 he publicly disclosed that he had been diagnosed with young-onset Parkinson's disease seven years earlier. The Michael J. Fox Foundation for Parkinson’s Research was founded with a single goal in mind – to accelerate the development of a Parkinson’s cure.

To date, the Foundation has funded $85 million in new research, either directly or through partnerships. Currently, The Michael J. Fox Foundation for Parkinson’s Research is the largest nonprofit funder of Parkinson’s research in the United States. Scientists believe that, with proper research funding, a cure for Parkinson’s disease is within reach.

The opportunity for therapeutic breakthroughs has never been greater and advances in Parkinson’s research are likely to significantly contribute to the understanding of other devastating neurological diseases such as Alzheimer’s, ALS and multiple sclerosis. The Team Fox grassroots community fundraising campaign was created in 2005 to give everyone a role to play in the victory against Parkinson’s.