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Disability Specific Resources

Information about Parkinson's Disease

• What is Parkinson's Disease?
• What are the causes of Parkinson's Disease?
• What are the characteristics of Parkinson's Disease?
• What are the statistics concerning Parkinson's Disease?
• Prevention
• Awareness
• Viewpoint
• On-Line Discussion
• Diagnosis
• Needs and Solutions
• Treatment and Rehabilitation
• Nutrition and Diet
• Learn More about Parkinson's Disease
• References

What is Parkinson's Disease?

• Parkinson’s disease is a progressive neurological disorder primarily affecting the substantia nigra and striatum portions of the brain that are important for motor control. Cells in the substantia nigra are responsible for producing dopamine, a neurotransmitter. Dopamine is sent to the striatum, which is an area of the brain that controls movement, balance and walking. In the Parkinson’s patient, about 80% of the dopamine-producing neurons in the substantia nigra have been destroyed by the time the first symptoms have been noticed.

What are the causes of Parkinson's Disease?

There is no known cause of Parkinson’s disease (PD), and, as yet, no cure. Scientists theorize that the cause of Parkinson's Disease in most patients is a combination of genetic and environmental influences.
Environmental factors currently being studied:

• Use of herbicides
• Use of well water
• Exposure to certain pesticides
Genetic factors currently being studied involve the understanding of two types of genes. To understand how genes are linked to Parkinson’s, begin by thinking of them in two categories.
• The first, “causal genes,” actually cause the disease. A causal gene alone, without the influence of other genes or environmental factors, guarantees that a person who inherits it will develop Parkinson's Disease. This kind of genetic Parkinson’s is very rare, accounting for perhaps one to two percent of people with Parkinson's Disease.
• The second category of genes, “associated genes,” do not cause Parkinson’s on their own, but increase the risk of developing it. A person may have these genes and never develop Parkinson's Disease, while people who do not have these genes can still end up being diagnosed with Parkinson’s. However, those who have the gene are more likely to develop Parkinson's Disease than those without it. In order for associated genes to trigger Parkinson's Disease, they probably need to be combined with other genes or environmental factors. (Gwinn)

What are the characteristics of Parkinson's Disease?

Parkinson’s disease is characterized by four primary motor symptoms:

• Tremor (shaking in a hand or foot when it is at rest)
• Rigidity (inflexibility of muscles resulting in decreased range of motion)
• Bradykinesia (slow movement)
• Postural instability (impaired balance and coordination)
• Diminished automatic movement
Additionally, there are several secondary motor symptoms that can be experienced by patients, although not all symptoms will be noticed by every patient. These can include:
• Dystonia (involuntary spasms of muscle contraction which cause abnormal movements and postures)
• Impaired motor dexterity and coordination
• Speech problems (low volume or slurred speech)
• “Masking” (loss of facial expression)
• Micrographia (small, cramped handwriting)
• Difficulty swallowing
There are also a number of non-motor symptoms associated with Parkinson's Disease. For many patients, these can be as troublesome as the primary motor symptoms.
• Dementia
• Sleep disturbances
• Depression
• Urinary problems
• Constipation
• Cognitive changes (memory difficulties and slowed thinking)
• Compulsive behaviors (sex and gambling, for example)
Symptoms of Parkinson's disease increase gradually over the course of time for people with this disease.

What are the statistics regarding Parkinson's Disease?

Parkinson’s disease is believed to affect one million people in the United States, and six million world-wide. (Ref: “What is Parkinson’s?”)

“The likelihood of developing Parkinson's Disease increases with age. Parkinson's Disease typically begins in a person's 50s or 60s, and slowly progresses with increasing age. The average age of onset is 62.4 years. Onset before age 30 is rare, but up to 10% of cases begin by age 40.” (Ref: “Introduction”)

Prevention:

Since scientists and doctors do not know what causes Parkinson's disease, they do not know yet how to prevent it.

Researchers are looking to see if there is biochemical abnormality with those who have Parkinson's disease that one might in the future be able to take a screening or chemical test to see if there is a diagnostic tool for Parkinson's disease.

"Using PET, research scientists can study the brain's dopamine receptors (the sites on nerve cells that bind with dopamine) to determine if the loss of dopamine activity follows or precedes degeneration of the neurons that make this chemical." ("Preventing Parkinson's Disease")

"Some researchers believe that free radicals may be one of the causes of Parkinson's disease. Antioxidants may help protect cells from free-radical damage and, thereby, reduce the risk of developing Parkinson's disease, however, more research is necessary to support this claim." ("Preventing Parkinson's Disease")

Awareness:

• People are more alike than they are different.
• Identify and develop an appreciation for each person's strengths and accomplishments.
• Become aware of the affect on daily activities.
• Public awareness of and advocacy for Parkinson’s disease are crucial for the purposes of appropriating funds for research and finding a cure. The costs of Parkinson's Disease for an individual patient and for the nation can be staggering. “The combined direct and indirect cost of Parkinson’s, including treatment, social security payments and lost income from inability to work, is estimated to be nearly $25 billion per year in the United States alone. Medication costs for an individual person with Parkinson's Disease average $2,500 a year, and therapeutic surgery can cost up to $100,000 dollars per patient.” (“Statistics”)

• Opportunities exist for those with Parkinson’s and family members/caregivers to participate in advocating on local and national levels.
  Parkinson's Action Network (PAN) is a leading Parkinson's Disease grass-roots advocacy organization.

  The Unity Walk, held every April in NYC’s Central Park, draws thousands of people from across the country to raise funds for Parkinson's Disease research.

  Premier organizations doing research and actively seeking a cure:

  • Michael J. Fox Foundation for Parkinson’s Research in New York
  • The Parkinson's Institute in California

Viewpoint

• Each person's journey with Parkinson's Disease is unique; symptoms should not be generalized or predicted.

On-Line Discussion

Visit our NHU Community Forum on Parkinson's Disease for more insight, awareness, viewpoints, experiences, needs and solutions.

Diagnosis

A doctor will review your medical history and give a physical exam. A doctor who is a neurologist, movement disorders or Parkinson's Diseas specialist will give you a neurological evalution.

Tests to see if your feet and fingers have dexterity and movement help the physician to rule out other disorders before making a Parkinson's diagnosis.

There is a standard test called the Unified Parkinson's Disease Rating Scale, which helps to assess tremors, rigidity, slow movement.

By the time a person is diagnosed with Parkinson's Disease damage to the dopamine receptors in the brain have been going on for many years.

Northwest Parkinson's Foundation: Recent Diagnosis offers information on the diagnosis and coping with the diagnosis.

Needs and Solutions

• A diagnosis of Parkinson's can be frightening.

• Worries of the Parkinson’s patient can include:
  How to tell one's employer about his or her Parkinson's Disease?
  What financial plans one needs to make?
  What to tell a spouse and children or parents?
  Do I qualify for disability?
  Will Parkinson's Disease affect my sex life?
  What do I tell my friends?
  
  See Learn More About Parkinson's Disease below.

• David Carroll, in his book, Living with Parkinson's, (56-63) offers nine steps to help the newly-diagnosed cope with the news:
  1. Take time out to digest the news of your diagnosis.
  2. Remember that your disease is manageable.
  3. Be prepared for emotional ups and downs.
  4. Learn all you can about the disease.
  5. Seek counsel.
  6. Work closely with your doctor.
  7. Know your resources.
  8. Become conversant with your medications.
  9. A positive attitude is half the battle.
  

• Caring in Parkinson's: The PD Partnership is an article written by the Parkinson's Disease Foundation that offers tips to keep good relationships and to gather support from family members and friends as life with Parkinson’s disease (PD) has profound effects not only on the person who is diagnosed, but also on his or her family members and friends.
• PD Take Three: Tips from the Health Care Team Are you looking for tips for managing the challenges of Parkinson's? Find tips and tools from the Parkinson's Disease Foundation health care team in PD Take 3. For each question about Parkinson's below, find three tips from three health care professionals, including doctors, nurses and physical, speech and occupational therapists. Do you have additional questions? Find answers by calling PDF's toll-free HelpLine at (800) 457-6676 or emailing them at info@pdf.org. Their team is available Monday through Friday, from 9:00 AM to 5:00 PM ET.

Treatment and Rehabilitation

Treatment options for Parkinson’s Disease include widely accepted use of medication, surgery, as well as complementary and alternative options. It is always best to discuss treatment with the movement disorder specialist or neurologist.

Medications

The “gold standard” of medications is carbidopa/levodopa (marketed as Sinemet).
Levodopa is converted in the brain into dopamine, the same chemical created by substantia nigra cells and used to control movement. Levodopa was introduced as a Parkinson's Disease therapy in the 1960s, and remains the most effective therapy for motor symptoms. It lessens and helps to control all the major motor symptoms of Parkinson's Disease, including bradykinesia, which is generally the most disabling feature of the disease. Carbidopa is included in the standard oral formulation to increase the effectiveness of a dose of levodopa and minimize side effects such as nausea and vomiting. (“Dopaminergic Agents”)

70-80% of patients regularly take some form of levodopa. There are some side effects, however, that come with increased dosage and long-term use. These can include dyskinesias (spontaneous, involuntary movements) and “off” periods when the medication suddenly and inexplicably stops working.

Dopamine agonists are drugs that directly stimulate dopamine receptors in the brain, and provide relief of symptoms. Some currently marketed are Apokyn, Mirapex, and Requip. Side effects can include drowsiness, and patients may experience sudden sleep onset. There have also been reports of these agonists causing compulsive behaviors such as increased gambling or intense sexual urges. (“Requip,” “Mirapex FAQs”)

Other classes of medications: COMT inhibitors (Comtan and Tasmar) have been shown to extend a dose of Levodopa and decrease the length of an “off” period. MAO-B inhibitors (Azilect and Selegiline) slow the breakdown of dopamine in the brain. Anticholinergics are effective in treating tremor and rigidity, but may have significant side effects, such as memory loss, sedation, and hallucinations.

Cleveland Journal of Medicine - Movement Disorder Emergencies in the Elderly This article is written for health care practitioners, however it describes some of the emergencies that Parkinson's patients may experience with drug interactions. Consult your physician and have them closely monitor when you need to take drugs for various conditions. This article describes Movement disorder emergencies in the elderly—such as rigidity, dystonia, hyperkinetic movements, and psychiatric disturbances—are challenging to manage. Many cases are iatrogenic. In theory, some cases could be avoided by anticipating them and by avoiding polypharmacy and potentially dangerous drug interactions.

Surgery

“Brain surgery is an option for advanced Parkinson's Disease patients whose symptoms can no longer be adequately managed with medications. The best surgical candidate is someone who responds well to dopaminergic therapy, has motor complications (off periods and dyskinesias) that are limiting factors, [and] is otherwise healthy and a good surgical risk.” (“Surgery”)

Deep Brain Stimulation (DBS) uses implanted electrodes to stimulate the subthalamic nucleus, interfering with abnormal activity. The electrical impulses can have a positive effect on areas of the brain that control movement and can improve tremor, stiffness, slowness, and dyskinesias.

Complementary and Alternative Treatments

• Physical therapy, goals of which are decreasing rigidity and bradykinesia, and improving balance and motor coordination.

• Occupational therapy, which focuses on improving fine motor coordination and making the home and workplace safer.

• Speech therapy, which concentrates on increasing voice volume;

• Acupuncture

• Massage therapy

  Not every therapy helps every child or adult.

Managing Parkinson’s: Complementary Therapies from the Parkinson's Disease Foundation Complementary Therapies. Read more about Speech, Physical and Occupational Therapy in this article, "Your care “team” can include not just your doctors and nurses, but also other health professionals - such as speech, physical and occupational therapists - that can help you live better with Parkinson’s. Many people with Parkinson’s find that these therapies can give them symptom relief, ease pain, and enhance their lives during treatment. A neurologist should be able to provide recommendations for therapy and, if needed, a referral. Unfortunately, insurance may not cover all forms of therapy; sometimes supporting letters of necessity are needed."

Nutrition and Diet

Researchers are studying the effects of natural and nutritional supplements to evaluate their success in slowing the progression of Parkinson’s disease and managing its symptoms. Some that have shown positive results are CoenzymeQ10 (CoQ10), Vitamin E, Vitamin C, creatine and glutathione.

Any use of over-the-counter supplements should be discussed with the neurologist first.

Learn more about Parkinson Disease

There are countless web sites available with answers to many questions and where you can learn more about Parkinson's Disease.

Here are just a few:

• American Parkinson Disease Association is a national organization designed to serve patients, family, and caregivers with a wealth of information. This website provides a lot of information to patients, families, and caregivers. There are newsletters available to receive simply by filling in one’s email address. “Current events” lists activities to participate in around the country. “Publications” provides access to the annual report, the newsletters and many publications available to order by mail. Many of these are also available to download. The site also offers several related links to more information. The National Office address is 135 Parkinson Avenue, Staten Island, NY 10305. The phone number is 1-800-223- 2732 or 718-981-8001. The fax number is 1-718-981-4399. For more information, send email to: apda@apdaparkinson.org.

• Michael J Fox Foundation for Parkinson’s Research is a national website and educational in its scope. It is geared toward patients, as well as caregivers, families, and others who are interested in Parkinson’s research. The main focus of this website is the research that is funded by the Foundation. They are “dedicated to ensuring the development of a cure for Parkinson’s disease within this decade through an aggressively funded research agenda.” There are links to the research and grants funded by the Foundation, pages for donations and for other means of helping, such as fundraisers, estate gifts, and more. This is a research-based site, and not so much an educational, entertaining resource. However, in addition to the “how to help pages,” there are pages about Parkinson’s that will answer many questions that a patient or their caregiver might have. There are lists of events and also one may sign up for their free email newsletter. The address for the foundation is The Michael J Fox Foundation for Parkinson’s Research, Grand Central Station, P O Box 4777, New York, NY 10163. The phone number is 1-800-708-7644.
• Parkinson’s Disease Foundation (PDF) is a leading national presence in Parkinson’s disease research, patient education and public advocacy. "They are working for the nearly one million people in the Unite States living with Parkinson’s by funding promising scientific research and supporting people with Parkinson’s, their families and caregivers through educational programs and support services.” This website is educational in scope by providing an overview of Parkinson’s, offering a free newsletter, news and scientific information, research grants, and a list of FAQs from their Expert Resource Center. They also provide a list of publications and DVD’s that are available to order, including exercise tapes, and booklets on Deep Brain Stimulation, advocacy, and other web resources. The site is easy to navigate, there is a lot of information here, though it is presented in a somewhat formal manner. Their main office is located at 1359 Broadway, Suite 1509, New York, NY 10018. Toll-free helpline: 800-457-6676. Main office phone: 212-923-4700. Main office fax: 212-923-4778. For more information, send email to: info@pdf.org.

• National Parkinson Foundation, Inc. works to educate patients, their caregivers and the general public as well as improve the quality of life for both patients and their caregivers. They offer a very informative website offering information on diagnosis and treatment, Parkinson facts and the latest on treatment research and clinical tests. The site also offers helpful resource links and a library of informative publications. To learn how the foundation can help you, visit their website, call (800) 327-4545 or e-mail mailbox@parkinson.org . The NPF has a page on the website where one can search for support groups in any state, within a radius of a zip code, National Parkinson's Foundation Support Groups. One can also search for Centers of Excellence on this page.

• Parkinson's UK As the United Kingdom's Parkinson's support and research charity, they are working to find a cure. They also campaign to change attitudes and demand better services.

• Senior Health: Resource Library

• ThirdAge.com is a baby boomer women's health news and information website that provides information on this health condition. Inside the condition centers at ThirdAge.com you can learn more about all conditions, including Parkinson's Disease. Research the condition by topics such as causes, symptoms, diagnosis, complications, and more. Learn how to take action with information on Parkinson's Disease treatment options, prevention methods, support groups, and more.

Additionally, there are hundreds of Parkinson's Disease Support Groups across the country and around the world, and many Parkinson's Disease On-Line Disability Communities: chat rooms and forums on the Internet.

References

• Carroll, David L. Living with Parkinson's, New York: Harper Collins, 1992.

• “Dopaminergic Agents.” Parkinson's Disease. 7 Dec 2008. We Move. 20 Jan 2010. (Link no longer available)

• Goldenson, Robert. Disability and Rehabilitation Handbook, McGraw-Hill, New York, NY, 1978, p.519.
• Gwinn, M.D., Katrina. Genetics and Parkinson's Disease: What Have We Learned? News and Review. Winter 2009. Parkinson's Disease Foundation. 19 Jan 2010.

• “Introduction.” Parkinson's Disease. 7 Dec 2008. We Move. 19 Jan 2010. (Link no longer available)

• “Mirapex FAQs.” Mirapex.com. n.d. Web. 21 Jan 2010.

• Preventing Parkinson's Disease. n.d. eMed.com. 01 Feb 2010.

• “Requip.” Requip.com. n.d. Web. 21 Jan 2010.

• “Statistics.” Understanding Parkinson's. n.d. Parkinson's Disease Foundation. 19 Jan
  2010.

• “Surgery.” Parkinson's Disease. 7 Dec 2008. We Move. 20 Jan 2010. (link no longer available)

• The PD Partnership: Tips for People with PD andTheir Care Partners. 2008. Parkinson's Disease Foundation. 17 Feb 2010.

• “What is Parkinson's?” Parkinson's 101. 10 Oct 2006. Michael J. Fox Foundation. 20 Jan 2010.

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