Parkinson’s

Guide to Parkinson’s

Around 50,000 people are diagnosed with Parkinson’s in the United States alone. Though it tends to affect people over 50 years old, it places a huge burden on our medical system. It may start with only mild tremors, however people with Parkinson’s typically need caregivers to provide necessary services as the disease progresses. The progression involves loss of motor functions, changes in mood and behavior which affects many daily bodily functions. Michael J. Fox and other celebrities have helped to raise public awareness recently through campaigns and fundraising events. The resources listed here link to major organizations, government institutions, support groups, advocacy, research and general information on Parkinson’s.

Parkinson’s Organizations

There are many organizations to promote developments and understanding of Parkinson’s. They use different methods and focus in areas of advocacy, research and patient support. Organizations are central to promoting public awareness of Parkinson’s and hosting events to raise funds. These links provide an overview of the different entities involved in helping those with Parkinson’s.

  • The National Parkinson Foundation promotes public awareness and research to improve the quality of care and provide a support system for patients suffering from Parkinson’s disease. Their site offers a detailed description of the disease, the tools doctors use to recognize it, advice on its care and steps to take to prevent its onset.
  • The American Parkinson Disease Association accepts donations to fund research and provide support to patients with the disease which they carry out through their local chapters. They also publish a collection of pamphlets and care sheets to spread awareness of Parkinson’s and offer scientific articles on its risk factors.
  • The Parkinson Alliance uses donations and profits from their benefits and conferences to fund research into Parkinson’s treatment and cures. They also host the annual Parkinson’s Unity Walk in New York City, the largest Parkinson’s fundraiser in the nation.
  • The Parkinson’s Action Network focuses on political advocacy for improving research and increasing support for patients suffering from Parkinson’s disease. They also support research directly through the donations of concerned individuals.
  • The Parkinson’s Disease Foundation works both to fund research through donations and provide educational materials to increase doctors’, patient’s and caregivers’ understanding of Parkinson’s disease. They also have extensive resources on the challenges of living with Parkinson’s and steps to take to alleviate problems.
  • The Michael J. Fox Foundation for Parkinson’s Research advocates an innovative and streamlined approach to Parkinson’s research to improve the quality of care given to patients and hopefully find a cure. Their funding comes through donations and merchandise found on their site.
  • The Parkinson’s Resource Organization focuses on providing material to help people with Parkinson’s understand and cope with the disease. They do this by hosting annual fundraisers to spread awareness of the disease and publishing multimedia material for caregivers and those living with the disease.
  • The Parkinson’s Institute provides hands on diagnosis, treatment and rehabilitation for patients living with Parkinson’s. They are also involved in extensive research through their clinics with the participation of their patients.
  • WE MOVE prides itself on their extensive collection of resources on movement disorders including, but not limited to, Parkinson’s. They also host educational and training programs to increase medical provider’s awareness and ability to diagnose, discuss and treat movement hindering disorders.
  • The Bachmann-Strauss Dystonia & Parkinson Foundation funds grants for Parkinson’s and dystonia research around the world. They allow different levels and types of donation to fund different types of research and honor the donors who make research possible.
  • The Davis Phinney Foundation for Parkinson’s focuses on improving patient’s quality of life to prevent Parkinson’s sometimes crippling and depressive effects. They sponsor events including cycling races and conferences to spread awareness and raise funds for improving the daily lives of people with Parkinson’s.
  • Many organizations outside the United States also promote research and help patients deal with their disease on a daily basis. Contact information is available for all of these groups and hyperlinks are provided when available.
  • The Wilkins Parkinson’s Foundation promotes public awareness of Parkinson’s disease through hosting various events and providing information. They also receive funds through donations and are very involved in collaborating with different Parkinson’s organizations.

Government Resources

The government provides extensive resources for the research and care for individuals with Parkinson’s. From scientific institutes like NINDS to programs like Mediare and Medicaid, the government plays a huge role in the welfare and treatment of people living with Parkinson’s disease. The organizations below are the most influential in Parkinson’s research and care in the United States.

  • Medicare is the government health insurance program for qualifying individuals, mainly over sixty-five years old. They offer information on many health issues affecting the elderly, including Parkinson’s, and advice for caregivers who live with the conditions on a daily basis.
  • The Administration on Aging conducts research and develops policy to address the needs of older individuals on a daily basis. Their resources have information on a variety of issues related to aging including budgeting, living with impaired mobility and health topics.
  • Healthfinder is the U.S. Department of Health & Human Services health information guide to look up thousands of conditions and topics about health. They have online tools to help you find local physicians, identify health risks and stay up to date with current health information.
  • The National Institute of Neurological Disorders and Stroke conducts and funds research into nervous system disorders and promotes cooperation between scientists working at various institutions. They provide information on a number of neurological diseases and feature the latest news in neurology.
  • The Centers for Medicare & Medicaid Services helps to finance patient healthcare and provides information on the different plans available and the qualifications required. They describe the many government funded healthcare initiatives in detail and describe how the different plans can work for you.

Caregiver and Patient Support

Parkinson’s patients often require daily care to live out their lives. Aside from the physical challenges of Parkinson’s, patients often experience unexpected changes in mood, frustration with loss of ability and a sense that they can accomplish more than they are able. Parkinson’s is a degenerative disease and leads to further complications as it progresses. The advice below is meant to help families and caregivers cope with the challenges of Parkinson’s.

  • Parkinson’s Disease Caregiver Information describes steps a family or professional caregiver should take in recognizing, responding to and ultimately treating the symptoms and signs of Parkinson’s. It also offers advice on the many issues that may arise when dealing with Parkinson’s patients.
  • CARE allows caregivers a forum to comment on their challenges and successes with patients suffering from Parkinson’s disease. Through this community they have developed an extensive web of resources dealing with physical issues like falling and dementia as well as some typical concerns and expectations of caregivers.
  • Living with Parkinson’s is provided by the Michael J. Fox Foundation to inform caregivers and families of the potential struggles and trials common in dealing with Parkinson’s disease. It also links to external pages for support groups and additional information on living with Parkinson’s.
  • Family Caregiver Alliance: Parkinson’s Disease addresses the common concerns of families and caregivers learning to cope with patients dealing with Parkinson’s, as well as recognizing the progression of the disease. They also have general tips on providing care including workshops, seminars and anecdotes from experienced caregivers.
  • Parkinsaw, Michigan is an imaginary city where most residents have Parkinson’s disease. Through their adventures and follies we learn how to find humor in Parkinson’s and are inspired to help in the search for a cure.

Medical Centers

Medical care is central to any plan to live with Parkinson’s. Patients must take medications, consult with doctors about any new developments and may even undergo surgery for serious cases. In addition most research trials are carried out within hospitals or clinics. The institutions listed below have some of the leading professionals and programs for Parkinson’s care in the United States.

  • New York Presbyterian Hospital is one of the leading centers for Parkinson’s diagnosis and treatment in the United States as well as ranked highly in general patient care. They have pioneered “deep brain stimulation”, a treatment that uses electrical impulses in the brain to diminish the effects of Parkinson’s disease.
  • The Mayo Clinic in Rochester, Minnesota boasts one of the foremost neurological centers in the United States. They work extensively with patients suffering from Parkinson’s and have additional branches in Arizona and Florida.
  • Struther’s Parkinson’s Center is a division of Park Nicollet Methodist Hospital in Minneapolis. Their support programs are well known throughout the nation for preparing families and patients for coping with Parkinson’s disease.
  • The Neuroscience Institute at Florida Hospital provides innovative programs including fitness and music courses to improve the everyday lives of Parkinson’s patients. They also host support groups in Central Florida to build a strong community of individuals suffering from Parkinson’s.
  • University Hospitals, a collection of medical centers across Ohio, hosts Parkinson’s Disease Boot Camps for patients. In these workshops patients and families learn how to cope with Parkinson’s disease and learn life skills to aid in its treatment.

Neurology Organizations

Parkinson’s is a disease of the nervous system and the brain, and its treatment is heavily influenced by our understanding and developments in neuroscience. Neurology informs our knowledge of the brain and may be central to understanding Parkinson’s and developing a cure. These are the foremost neurological associations in the United States.

  • The American Academy of Neurology contributes to knowledge of the nervous system by publishing journals, advocating policy and developing academic curriculum. Through their membership they provide job openings, equipment and information for both neurologists and patients.
  • The American Association of Neurological Surgeons disseminates current information and recent developments in the fields of neuroscience and neurosurgery. ¬†They support research through grants and provide career resources to their members.
  • The American Neurological Association is a collection of professors and researchers working to further understanding of the nervous system. They mainly promote education and certification to ensure the quality of new candidates in neurology.

Parkinson’s Advocacy

Advocacy spreads awareness and raises money for Parkinson’s patients, their disease and research into a cure. Though advocates are not all scientists, they are important for getting grants to researchers and helping the public understand the specific challenges of those suffering from Parkinson’s. These links are some of the most active and influential advocates for Parkinson’s on the web.

  • PDPlan4Life provides information for people struggling with Parkinson’s disease to lead a healthy and more productive life. They also promote awareness through the Parkinson’s Action Network, a leading organization for those with Parkinson’s.
  • PD Tulip is an advocacy effort to create a lasting symbol for Parkinson’s awareness and the search for a cure. They sell pins and patches in the form of a tulip to symbolize support for Parkinson’s patients.
  • The Declaration of Clinical Research Rights & Responsibilities for People with Parkinson’s defines specialized procedures to protect participants in research trials from their vulnerabilities as patients of Parkinson’s. It is a cooperative effort between PDPipeline & PDPlan4Life.
  • The Stem Cell Action Coalition advocates for the lessening of restrictions on stem cell research for medical and other legitimate purposes. Many researchers and physicians see promise for a cure from stem cell research and are understandably interested in removing the barriers to study.
  • Parkinson’s Unity Walk is an annual event in New York City to spread awareness and raise funds for Parkinson’s patients and research. It is held on April 16th and participates with major Parkinson’s organizations to connect with current studies.
  • The Parkinson’s Project Blog offers news on benefits and fundraisers to support Parkinson’s research and those with the disease. They also feature news and statistics on Parkinson’s advocacy throughout the nation.

Informational Resources

Parkinson’s is a complicated disease experienced differently by patients. It is hard to know what to expect or prepare for with such a varied and unpredictable illness. Patients need solid information to develop plans for treatment and relieving their symptoms. The internet has a lot of information on Parkinson’s and here are some of the most comprehensive.

  • The Edge of the Forest hosts information on Parkinson’s disease, organizations, advocacy, support groups, print materials and methods to alleviate pain. It also has coping tips for family members and people dealing with the disease.
  • Parkinson’s, Environment and Genes is a study investigating the links between environmental factors, genetics and the onset of Parkinson’s. It is an ongoing project at the University of California at Los Angeles and provides links to other Parkinson’s information around the web.
  • HealingWell: Parkinson’s boasts forums related to coping with Parkinson’s, news, articles on the disease and related external sites. It is a large community of patients and health care professionals sharing medical advice and knowledge.
  • WebMD: Parkinson’s Center includes information on nutrition, exercise, complications and treatments for Parkinson’s disease. It also allows access to WebMD community discussions on Parkinson’s to get feedback from patients or physicians.

Research

Current research and study is imperative to finding a cure for Parkinson’s. Though we still do not have a cure, breakthroughs in research have improved our understanding of its genetic inheritability, cures for certain symptoms, physiological changes in Parkinson’s patients and methods for friends to help individuals cope with the disease. Parkinson’s is a complex disease with many possible complications and research has investigated the links between Parkinson’s and associated disorders in an attempt to find out how the disease affects the mind. The links below investigate Parkinson’s from these perspectives and provide recent findings in the field.

  • Bladder Problems and Parkinson’s offers research papers describing the links between Parkinson’s and incontinence. It includes information on possible treatments for this symptom as well as hypotheses of its causes.
  • Gait & Parkinson’s explains the reduction of mobility commonly associated with Parkinson’s. The materials provide information on the physiological changes to the brain, the consequences of reduced mobility, reasons for this deterioration and possible methods to alleviate symptoms.
  • ScienceDaily has extensive archives of research papers related to the problems associated with Parkinson’s. It includes information on common and emergent symptoms, physiological changes occurring with the disease and possible methods for treatment.