In your thirst for knowledge, be sure to not drown in all the information. ~ Anthony J. D’Angelo
Introduction to Parkinson’s Web-Based Research
Researching Parkinson’s can be an overwhelming undertaking. If you have recently been diagnosed, questions abound! Where to start and who to trust can stop you before you get started. Maybe it is better not to know. The other extreme is to read anything and everything with the word “Parkinson’s” leading you down a confused and scary path. I recommend finding a balance and limiting the number of hours a day you read about PD. You need to focus on bite size pieces in the beginning. I also recommend you start with websites for foundation, association, and medical centers. Books, blogs, and specialty websites can be added later.
Since my 2014 diagnosis, the following foundation and medical organization websites are my “go-to” for trustworthy and accurate information. I strongly believe I must be my PD advocate and be educated on timely PD information. These sites are beneficial to me. The list is not in ranked order. Other excellent sites exist, but these are my favorites.
Linda A. Mohr’s Top Parkinson’s Websites for Foundations and Medical Centers
Northwest Parkinson’s Foundation
What I like about this site:
1. You can participate in online programs such as a weekly live streamed yoga class designed for people with Parkinson’s. It is led by Renee Le Verrier, RYT, a stroke survivor, certified yoga instructor, author, and person living with Parkinson’s.
2. Educational information is compiled and authored by Dr. Monique L. Giroux, MD, a board certified neurologist and the only physician in the United States fellowship trained in movement disorders and integrative medicine.
3. A Weekly Parkinson’s News Update is available by email.
What I like about this site:
1. A live free webinar is held the third Thursday of each month. Prior webinars are archived.
2. You can subscribe to MJFF Parkinson’s Podcast for the latest in science and PD research.
3. You can use Fox Trial Finder and travel in your general area to participate in trial.
4. You can subscribe to Fox Focus on Parkinson’s, a print version available annually.
5. A tribute page can be created to honor lives touched by PD.
6. You can count on informative blog posts.
7. The site is chock-full of educational information.
Mayo Clinic Parkinson’s Homepage
What I like about this site:
1. Mayo Clinic in Minnesota has been ranked best neurology and neurosurgery in the nation for 2018-19 by U. S. News & World Report.
2. You can request a general interest e-newsletter, Housecall.
3. You can request a free trial of Mayo Clinic Health Letter.
4. The website has substantial educational information on PD.
5. Related links to Tai Chi and Mediterranean recipes are helpful.
University of Florida Health Center for Movement Disorders and Neurorestoration
What I like about this site:
1. Of international prominence, the mission of the University of Florida Health Center for Movement Disorders and Neurorestoration led by Dr. Michael Okun is “to provide the highest level of medical and surgical care to patients with Parkinson’s disease, tremor, dystonia and other movement disorders. To perform research that will lead to better treatments, and ultimately cures for Parkinson’s disease and other movement disorders.”
2. The Center sponsors a free public annual educational Parkinson’s symposium.
3. An integrative approach and interdisciplinary care is provided in one central location.
4. Appointment process is provided along with detailed information on medical staff.
5. The site has an excellent educational section relating to PD.
6. The Center is located less than five hours from me!
American Parkinson’s Disease Association
What I like about this site:
1. You will find a wide variety of information geared to people with PD as well as caregivers. Pamphlets are available for download.
2. Dr. Rebecca Gilbert writes “A Closer Look” blog.
3. Monthly Spotlight webinars are offered.
4. An educational video library is available.
5. If you would like to share your PD story from a PwPD, caregiver, or community perspective, there is an easy form to complete.
6. You can “Ask a Doctor” a question.
7. By entering your zip code, you can easily locate APDA resources and services in your area. APDA sponsors such events as dance, boxing, exercise, caregiver support, socials, and lunch n learn where I live.
What I like about this site:
1. You can order the manual Every Victory Counts free and take control of your treatment today. (Incredible 382 pages resource! I refer to as my Bible of PD)
2. A free exercise video called Parkinson’s Exercise Essentials is offered as a download.
3. Videos are available for viewing including Ask the Parkinson’s Expert Series.
4. An interesting blog is written by different authors.
Do you have a favorite Parkinson’s website? Why is it your favorite? I’d love to hear from you.
Blessings!
Linda
Photo Credit: Kaitlyn Baker
2 comments
Great resource! Thanks for putting this together!
Author
My pleasure! Thanks Marsha for taking a look.