Understanding Living With Parkinson’s Disease

Learning to live with a diagnosis of Parkinson’s disease can be a frightening and confusing process. Though the disease has many debilitating factors, the sites below will help you learn to manage your Parkinson’s and provide you with a number of resources to turn to as you encounter its symptoms.

Resources include a geographically-diverse list of medical centers with high standards for Parkinson’s treatment and highlights of recent research on the disease. The article also contains listings of online and print sources for discovering more about the disease, as well as online communities where you can connect with other Parkinson’s patients and care providers.

Medical Centers Latest Research Online Resources Book Materials Online Communities & Forums

Medical Centers

  • Georgetown University Hospital Movement Disorder Center: This Washington D.C. hospital offers comprehensive treatment for Parkinson’s and similar disorders.  The website also contains useful multimedia resources, such as a presentation on how to live with a movement disorder and videos of patient stories.
  • Johns Hopkins Parkinson’s Disease and Movement Disorders Center: Located in Maryland, this medical center provides excellence in care, research, and teaching related to movement disorders.  The center’s website contains useful information about different movement disorders and its current research projects.
  • Medical College of Georgia Movement Disorders Program: This Georgia center handles a number of movement disorders including Parkinson’s disease.  Resources offered include education, therapy, support groups, and research.
  • Muhammad Ali Parkinson Center Movement Disorders Clinic: This Arizona center was established in 1997 and provides medical services related to treatment and research on Parkinson’s disease.  The center also provides a number of education services and works to promote public awareness of the disease.
  • Northwestern University Parkinson’s Disease and Movement Disorders Center: Established in 2000, this Illinois center offers medical therapy and other non-medical resources for Parkinson’s patients.  Through collaboration with other centers and institutions, Northwestern University pursues targeted research goals and offers comprehensive care.
  • NYU Langone Parkinson and Movement Disorder Center: Although recently established in 2007, this New York center offers a wide variety of patient care and treatment strategies.  The dedicated Parkinson Wellness Program explores the healing power of movement through activities such as Pilates and music therapy.
  • The Parkinson Center of Oregon: Run by the Oregon Health and Science University, this center is a treatment hub for movement disorders in the Pacific Northwest.  The center offers a variety of resources and educational tools for patients and care providers alike.
  • Struthers Parkinson’s Center: This Minnesota center is the largest resource for Parkinson’s disease in the Midwest.  Well-known for its educational programs, the center also conducts research and treatment for Parkinson’s patients.
  • UC San Francisco Parkinson’s Disease Clinic and Research Center: Located in California, this center conducts research both on experimental therapy and fundamentally new approaches.  The center also offer general treatment, and its website provides useful Parkinson’s information for both patients and care providers.
  • University Of Miami Parkinson Disease And Movement Disorders Center: This Florida center was created in 1984.  The center offers several different kinds of treatment and also works on outreach to the community.

Latest Parkinson’s Research

  • Cycling Provides A Break For Some With Parkinson’s: A March 2010 news article shows that researchers were surprised to find that Parkinson’s patients without the ability to walk or run may still be able to bike, symptom free.  This finding if applied may increase physical fitness and therefore overall health for many with the disease.
  • Deep Brain Stimulation Could Improve Parkinson’s Disease: This April 2010 report shows that deep brain stimulation surgery can cause a significant increase in quality of life for Parkinson’s patients.  However, the surgical procedure itself does present some health risks.
  • Endometrial Stem Cells Restore Brain Dopamine Levels: Results from Yale researchers in May 2010 show that stem cells from the lining of the uterus that were implanted into mouse brains will assume the role of brain cells that have been killed due to Parkinson’s disease.  Future potential lies in the possibility of females with Parkinson’s disease being able to use their own stem cells to mitigate the progression of the disease.
  • Genes and Pesticides Interact To Increase PD Risk: A study published in June 2010 in the Archives of Neurology found that exposure to certain pesticides among men with variations in gene ABCB1 may be at an increased risk for developing Parkinson’s disease.  Further studies are needed on this topic, as the research was done retrospectively, and the correlation does not necessarily indicate causation.
  • Guideline Issued For Treating Sleep, Constipation, Sexual Problems In Parkinson’s Disease: The American Academy of Neurology in March 2010 developed new recommendations for Parkinson’s patients who experience issues with sleep, constipation, and sexual function.  The Academy recommends several drugs to deal with these less-often addressed symptoms, which can be as disruptive to quality of life as movement problems.
  • Parkinson’s Disease ‘Could Be Diagnosed By Voice Changes’: An April 2010 report shares that researchers may be able to diagnose and treat Parkinson’s at an earlier stage by using a computer to detect changes in voice patterns that occur before other signs of the disease.  Earlier diagnosis could lead to higher drug efficacy and generally better health outcomes.
  • Parkinson’s Limits Ability to Read Emotions: Research published in March 2010 shows that individuals with Parkinson’s disease may have a harder time reading emotions than others.  Researchers are unsure why this effect happens, but suggest neural circuitry damage as the reason.
  • Positive Results Announced In Trial Of Gene Therapy For PD: A June 2010 announcement from Neurologix, Inc. outlined a statistically significant finding of motor skill improvement among individuals who received the drug NLX-P101.  This research was performed on patients with moderate to advanced Parkinson’s disease.
  • Researchers Unlocking Learning Strategies In Parkinson’s Patients: Research revealed in May 2010 from the University of Michigan shows that Parkinson’s patients are better at learning new tasks when they are not medicated in the early stages of the disease.  Parkinson’s medications can interfere with dopamine levels in a way that decreases learning ability.
  • Spinal Cord Stimulation May Benefit Parkinson’s Patients: A small-scale June 2010 study shows that altering the frequency of a spinal cord stimulation in both animals and humans may impact the severity of Parkinson’s symptoms.  Lower frequency stimulation corresponded with a worsening of symptoms, while higher frequency stimulation corresponded with an improvement in symptoms.

Online Resources

  • American Parkinson Disease Association: This grassroots organization works to raise research funds, educate the public, and form support communities for Parkinson’s patients.  The association supports these efforts throughout all regions of the United States.
  • Mayo Clinic: This website provides in-depth information about the symptoms, treatments, and other information relevant to Parkinson’s disease.  Though this site is medically-based, it is not meant as a substitute for diagnosis and/or treatment from your physician.
  • Medline Plus: Run by the U.S. National Library of Medicine and the National Institutes of Health, this resource provides links to basic information, current research, and various multimedia resources.  The site also has links to Parkinson’s-related articles from Medline Plus’ own publication.
  • The Michael J. Fox Foundation for Parkinson’s Research: Look over this resource page from the foundation’s website.  The page provides links to help understand the disease and also provides coping guides for patients and caregivers.
  • myPDinfo.com: This website contains useful living suggestions and tools for Parkinson’s patients, their families, and caregivers.  The site also includes a glossary of Parkinson-related terms.
  • National Parkinson’s Foundation: This site is an overall resource for issues related to Parkinson’s disease, such as diagnosis, treatment, research, and finding community.  The site provides information for patients, healthcare professionals, and friends and family of individuals with Parkinson’s.
  • Parkinson’s Action Network: This organization advocates for better research and treatment for individuals with Parkinson’s disease.  The website publishes information about federal initiatives and provides a number of ways to become involved in advocating for Parkinson’s patients.
  • The Parkinson Alliance: This organization is dedicated to raising funds for the Parkinson’s research.  The organization also oversees the Parkinson’s Unity Walk and Team Parkinson, which promote Parkinson’s fundraising through walking and running events.
  • Parkinson’s Disease Foundation: The foundation provides a compilation of information ranging from basic information on Parkinson’s to research results and guides to living with the disease.  The website also features a news feed with the latest events and information related to the foundation.
  • ParkinsonsHealth.com: This website is a center for those living with Parkinson’s disease.  Some elements include basic disease information, resources for empowerment, and tools for living with Parkinson’s.

Book Materials

  • Delay the Disease: Exercise and Parkinson’s Disease by David Zid: This book provides exercise suggestions that help increase mobility in Parkinson’s patients.  The exercises are meant to be easily practiced yet to dramatically help with movement and coordination.
  • HOPE: Four Keys to a Better Quality of Life for Parkinson’s People by Hal Newsom and Craig Howard: This upbeat book helps individuals with Parkinson’s disease remain positive in the face of a debilitating illness.  The self-help approach proves that living a satisfying and active life with Parkinson’s is a very achievable goal.
  • Parkinson’s Disease: 300 Tips for Making Life Easier by Shelley Peterman Schwarz: Schwarz has written a resource for Parkinson’s patients actively searching for ways to improve their quality of life.  The guide contains information ranging from home management to personal appearance, communication, and mobility.
  • Parkinson’s Disease: A Complete Guide for Patients and Families by William J. Weiner M.D., Lisa M. Shulman M.D., and Anthony E. Lang M.D. F.R.C.P.: This is Amazon.com’s best-selling book on Parkinson’s disease.  The book is written in an easy-to-understand language and format, and helps clarify what to expect in life with a diagnosis of Parkinson’s.
  • Parkinson’s Disease and the Art of Moving by John Argue: This book provides a comprehensive guide to increasing mobility while living with Parkinson’s.  Several exercises are laid out to follow, after a basic introduction to the disease.
  • Parkinson’s Disease and the Family: A New Guide by Nutan Sharma M.D. and Elaine Richman Ph.D.: This guide is a resource for Parkinson’s patients with families.  The authors provide suggestions for how to deal with family dynamics in the face of the disease.
  • Parkinson’s Disease for Dummies by Michele Tagliati M.D., Gary N. Guten M.D. M.A., and Jo Horne M.A.: This how-to guide serves as comforting reference material for Parkinson’s.  This book helps with understanding of the disease and also provides treatment and coping strategies.
  • Understanding Parkinson’s Disease: A Self-Help Guide by David L. Cram M.D.: This positive guide helps Parkinson’s patients mentally adjust to their disease and provides basic coping strategies.  This book has been cited as particularly helpful when used as an initial resource for the disease.
  • What’s Shakin’: An Insider’s Look at the Humorous Side of Parkinson’s Disease by John S. Brissette: Although this book is not a direct source of information regarding Parkinson’s disease, it provides a first-hand account of one man’s experience with the illness.  Brissette writes not to invoke pity, but to share in the humorous aspects of life with Parkinson’s.
  • What Your Doctor May Not Tell You About Parkinson’s Disease: A Holistic Program for Optimal Wellness by Jill Marjama-Lyons M.D. and Mary J. Shomon: This resource provides daily living advice for Parkinson’s patients who are interested in holistic as well as traditional medical treatments for the disease.  The book works as a potential complimentary source of information for individuals who have spent most of their time reading conventional disease literature.

Online Communities & Forums

  • DailyStrength: DailyStrength hosts a motivational support forum for those with Parkinson’s disease.  Other useful features include the ability to create a personal wellness journal and personal goals.
  • HealingWell.com: This website manages forums for a variety of different illnesses, with a dedicated page on Parkinson’s disease.  Site users ask many different Parkinson’s-related questions and can refer to other website resources such as book suggestions and newsletters through easy navigation.
  • National Parkinson’s Foundation: Aside from being a useful online resource on its own, the foundation websites hosts a comprehensive forum on Parkinson’s disease.  The well-organized resource is divided into both medical and non-medical discussion topics.
  • NeuroTalk: This forum offers a free space for posting Parkinson’s-related discussion questions.  The site is fairly well-trafficked and provides a simple and easy format for community response.
  • Parkinson’s Disease Caregiver Information: The forum on this website is dedicated to the unique issues that Parkinson’s caregivers encounter.  The discussion group would be a valuable resource to anyone supporting a Parkinson’s patient.
  • Parkinson’s Disease Forum: This Parkinson’s resource creates a space where patients and caregivers alike can comment and support one another.  The forum is laid out in a well-organized fashion, outlining several general categories and sub-categories for discussion.
  • PatientsLikeMe: This unique website offers an entire social community for Parkinson’s patients.  Users can create a health profile and share information through forums, blogs, and other interactive tools.
  • Topix: The Parkinson’s forum on this website contains topics ranging from political issues to disease symptoms and research updates.  This active message board should provide a plethora of information for any Parkinson’s patient.
  • We Move: This online forum is less active than some of the others, but remains a strong collection of information on Parkinson’s and other movement disorders.  Topics vary from medical resources to symptom discussion and beyond.
  • Yahoo Groups: The “People Living with Parkinson’s” group on Yahoo is an active message board for users to reply to a number of different kinds of posts.  This is one of the primary support groups on the disease available through Yahoo.