Library
Library Links
Katrina Saad, Library Coordinator, has selected these articles, books, blogs, and more to help you learn more about Parkinson’s. Some printed articles and books to lend are available on the library table at monthly Walnut Creek meetings. Do you have a recommendation to add to our library? Email us at library@pnmd.net. Include the article title, one or two sentence descriptions, and a URL (web link).
Parkinson’s Disease: What is it?
- Parkinson’s Disease – American Association of Neurological Surgeons
– This website has a great overview of what happens to the brain with PD. It also includes descriptions of various treatments along with their side effects. - Breaking News: Parkinson’s Disease Biomarker Found – Michael J. Fox Foundation
– This discovery “opens a new chapter for research, with the promise of a future where every person living with Parkinson’s can expect improved care and treatments. - Thinking and Memory Changes, Parkinson’s UK
– Read all about the signs and symptoms related to memory change and confusion. This page also does a great job of describing the difference between Parkinson’s dementia, Lewy body dementia, and Alzheimer’s.
– Learn about how the brain can rewire itself, and the impact exercise has on this process!
- Glossary of Terms, The Michael J. Fox Foundation
– Many articles and resources use terms and abbreviations that may be unfamiliar.
This glossary defines terms and provides additional information for each.
– This is a great site to reference while reading other articles. - Cognitive Changes, American Parkinson Disease Association
– This article describes the effects that PD has on memory, information processing,
and language. - Parkinson’s Disease: Causes, Symptoms, and Treatments, National Institute on Aging
– This article does a wonderful job summarizing PD, including explanations of causes,
symptoms, and treatments.
– The National Institute on Aging is a great resource for many health and disease
related topics. They provide free publications such as the Caregiver’s Handbook and
other exercise tips. - Understanding Parkinson’s, Parkinson’s Foundation
– Learn about stages, early signs, and common myths about PD.
– Also a great summary for related conditions such as melanoma and orthostatic
hypertension. - Symptoms, The Michael J. Fox Foundation
– Describes common symptoms of PD. Includes motor and non-motor, or “invisible”
symptoms.
– Click the “Read More” option below each symptom for more information and
detailed descriptions! - Parkinson's News Today - a great website with the latest research and news updates. All articles are free and accessible! Check out their column section for stories as well.
- Cure Parkinsons: Research News - This UK based organization has great summaries of the latest research, as well as links to the original research papers.
- Michael J. Fox Research News - Michael J. Fox Foundation funds many projects, see what's new! Free podcasts are available too.
Importance of Movement & Exercise
- The Benefits of Exercise for PD, Stanford Medicine
– Excellent page with additional articles, PDFs, and fact sheets talking about the
benefits of exercise for people with PD.
– Check out their selection of podcasts and webinars about PD and exercise from
sources like The Michael J. Fox Foundation, Davis Phinney Foundation for PD, and
many more. - Fighting Parkinson’s Disease with Diet and Exercise, Johns Hopkins Medicine
– Explains the roles and impact that diet and exercise have on PD and related
symptoms. - Meditation and Relaxation Techniques for Parkinson’s Disease, Parkinson’s News Today
– Summarizes studies on the benefits of mindfulness training and relaxation
techniques.
– Meditation and relaxation techniques take many forms. They typically have positive
effects on both PD patients and caregivers. Several studies have shown a connection
between Parkinson’s disease symptoms and mindful meditation. - Yoga Visibly Reduces Tremors and Improves Steadiness of Gait, American Parkinson Disease Association
– By Renee Le Verrier, RYT. Covers the potential benefits of yoga for people with PD. - Fitness Friday by Parkinson’s Foundation
– Click here for some exercise inspiration and ideas! Check out Fitness Friday by Parkinson’s Foundation for some yoga, balance, strength, boxing, and more! - LSVT BIG exercises
– Follow along with these LSVT BIG exercises at home! These can be done sitting or standing
For Caregivers & Loved Ones
- Coping Tips for Caregivers of Those with Parkinson’s Disease, WebMD
– Some tips and guidance for caring for your loved one.
– Acknowledges the challenges and roles of a caregiver. - Caring for the Care Partner, Parkinson’s Foundation
– Great article for recognizing caregiver burnout, and the importance of caring for
yourself.
– Read stories from other care partners!
Care Partners, The Michael J. Fox Foundation
– More advice on how to be the best care partner you can be.
– Defines the role of a care partner.
Books, Blogs, and More
List of Services
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Ending Parkinson’s Disease: A Prescription for Action, by Dorsey, et alList Item 1
– Click here to buy on Amazon
– Brain diseases are now the world’s leading source of disability. The fastest growing of these is Parkinson’s: the number of impacted patients has doubled to more than
six million over the last twenty-five years and is projected
to double again by 2040. Harmful pesticides that increase
the risk of Parkinson’s continue to proliferate, many people
remain undiagnosed and untreated, research funding
stagnates, and the most effective treatment is now a
half century old.
– In Ending Parkinson’s Disease, four top experts provide a
plan to help prevent Parkinson’s, improve care and
treatment, and end the silence associated with this
devastating disease.
-
A Parkinson’s Primer, by John M. VineList Item 2
– Click here to buy on Amazon
– “This is a remarkable book describing the personal experiences of many individuals, including the author, living
with Parkinson’s disease. It captures the fact that although
there are many possible symptoms in this disease, each
person experiences different symptoms and copes with them
in various ways. The thoughtful and insightful comments and
coping strategies should be helpful for persons with PD, and
their partners, regardless of the stage of the disease.” Stephen
Grill, MD, PhD, Director of the Parkinson’s & Movement
Disorders Center of Maryland
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Every Victory Counts, by Davis Phinney Foundation
– Download for free from the Davis Phinney website
– Essential information about Parkinson’s plus dozens of topics that are frequently
overlooked but critical to helping you live well
– Insights from more than 50 Parkinson’s experts, including physicians, therapists,
and scientists who share cutting edge research, strategies, and ideas for living well
with Parkinson’s
– Advice and inspiration from dozens of people living well with Parkinson’s today
– In-depth information about exercise, nutrition, emotional health, medication,
therapies, and more
– First published in 2010, the Every Victory Counts® manual broke new ground as
the only resource of its kind, devoted solely to the principle of proactive self-care
and a holistic approach to managing Parkinson’s. In subsequent editions, it has
gained international recognition as a superb and comprehensive resource for
changing the way people live with Parkinson’s. Now in its sixth edition, the manual
is the cornerstone of our new Every Victory Counts suite of resources, a robust
collection of printed and digital manuals (including a new Every Victory Counts
Manual for Care Partners) that embrace the Davis Phinney Foundation’s philosophy
of taking action to improve your quality of life with Parkinson’s.
-
Honey, I Sold the Red Cadillac, by Bob Wolf
– Click here to buy on Amazon
– Carol developed the first typical symptoms of Parkinson’s
disease in 2011, but the diagnosis was soon changed to
Lewy Body Dementia (LBD). The first physical symptoms
were quickly followed by hallucinations, which at first were
benign, but quickly became quite scary. While caring for
Carol, Bob slowly, painfully learned how to cope with her
physical as well as mental symptoms. This book describes
those lessons in the hope that others caring for LBD patients
will benefit from them, and their path down this road will be
easier.
-
Reverse Parkinson’s Disease, by John PepperList Item 3
– Click here to buy on Amazon
– "John Pepper was diagnosed with Parkinson’s disease in 1992. After only six years of regular, energetic exercise, which has since been proven to slow down or even reverse Pd, and taking medication, which has also since been proven to slow down or reverse Pd, he no longer appears to have Pd, although he still has many of the symptoms. During the first ten years, if he stopped either the exercise or the medication, his symptoms soon returned. He does not claim to be cured, but he is able to lead a normal life today. His positive attitude and determination to stay ahead of this terrifying condition highlight a new approach to dealing with PD. John’s story is a portrayal of courage, showing the power of focusing on and being committed to one’s beliefs. One can greatly admire his determination and self-motivation, as seen in his conscious efforts to correct and adjust his movements, which in themselves is no small achievement. His positive attitude has been further enhanced by the warm and encouraging support of his wife, Shirley, and family. This close family relationship has been a positive factor in helping John cope with his disability." –Publisher description.
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Being Mortal, by Atul Gawande
– Click here to buy on Amazon
– In Being Mortal, bestselling author Atul Gawande tackles the hardest challenge of his profession: how medicine can not only improve life but also the process of its ending.
– Medicine has triumphed in modern times, transforming birth, injury, and infectious disease from harrowing to manageable. But in the inevitable condition of aging and death, the goals of medicine seem too frequently to run counter to the interest of the human spirit. Nursing homes, preoccupied with safety, pin patients into railed beds and wheelchairs. Hospitals isolate the dying, checking for vital signs long after the goals of cure have become moot. Doctors, committed to extending life, continue to carry out devastating procedures that in the end extend suffering.
– Gawande, a practicing surgeon, addresses his profession’s ultimate limitation, arguing that quality of life is the desired goal for patients and families. Gawande offers examples of freer, more socially fulfilling models for
assisting the infirm and dependent elderly, and he explores the varieties of hospice care to demonstrate that a person’s last weeks or months may be rich and dignified.
– Full of eye-opening research and riveting storytelling, Being Mortal asserts that medicine can comfort and enhance our experience even to the end, providing not only a good life but also a good end.
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The New Parkinson’s Disease Treatment Book, J. Eric Ahlskog, PhD, MDList Item 4
– Click here to buy on Amazon.
– The definitive guide for Parkinson’s Disease patients and their families
– Offers a crystal-clear, nuts-and-bolts approach to the treatment of PD
– Distilled from the author’s nearly thirty years of experience as a clinician and researcher
– Educates patients so that they can better team up with their
doctors to do battle with the disease, streamlining the
decision-making process and enhancing their treatment
– New to this Edition:
– Updated chapters help patients and their caregivers develop
a basic, core understanding of the diagnosis, treatment, course, and likely complications of the disease
– Thoroughly revised to reflect new protocols for medications
– The Second Edition also contains new information about the genetic and hereditary pattern of the disease; the effects of fluctuating hormones on disease symptoms; and other cutting-edge research.
Blogs
- Journey with Parkinson’s
– Regularly updated posts
– Description from the website: “A blog for Parkinson’s education, research
advances, treatment strategies, and personal reflection. The goal is to
provide support and resources to anyone either with Parkinson’s disease or
with any neurodegenerative disorder.” - Blogs and Podcasts About PD, Stanford Medicine
– From the website: These blogs and podcasts are all about Parkinson’s
disease. They are written or recorded by people diagnosed with Parkinson’s
Disease, PD care partners, PD researchers, or PD organizations. Some are
about living with PD. And some have a focus such as PD research, humor, or
movement. - Parkinson’s Resources Blog, Davis Phinney Foundation
– Read, watch, or listen to all things Parkinson’s. Frequently updated, make
sure you check back to see what’s new! - Mood & Cognition: Non-Motor Symptoms of Parkinson’s, Dr. Adriana Shnall, Parkinson’s Canada
– One hour webinar on YouTube
– Covers mood changes, cognitive impairments, and communication strategies with a Q&A at the end. - TED Talk – Emma Lawton Emma Lawton, a woman from London, was diagnosed with Parkinson’s at 29. In her TED talk, she opens up about how she searched for the positives in her life and the lessons she learned.
- Bright and Brilliant – Poems Read a variety of poems- happy, funny, thoughtful, or sad, from the Parkinson’s community. “A group of poets with Parkinson’s came together to create a selection of poems from World Parkinson’s Day 2023. The poems reflect many voices and experiences of Parkinson’s. They are grouped by themes all about what it’s like to “Be” living with Parkinson’s.” -from Parkinson’s UK.
- Real Talk from Patients A collection of blogs from the Michael J. Fox Foundation. Explore different topics including living with Parkinson’s and Patient Stories.
ADDITIONAL RESOURCES
- Newly Diagnosed with Parkinson’s? Check out these websites for helpful guidance and advice on what to do next:
– New to Parkinson’s, Parkinson’s Foundation
– Resources for People Newly Diagnosed with Parkinson’s, The Michael J. Fox Foundation
– Newly Diagnosed with Parkinson’s: 7 Things To Do Now, Johns Hopkins Medicine - Explore the following sites for updated information and plentiful resources:
– The Michael J. Fox Foundation for Parkinson’s Research
– Davis Phinney Foundation for Parkinson’s
– National Institute on Aging, Parkinson’s Disease
Rick Stevens, former PNMD Librarian, recommended these links, in addition to those above.
- From The New York Times:
“The Link Between Parkinson’s Disease and Toxic Chemicals”
A new book calls the increasing prominence of Parkinson’s “a man-made
pandemic.”
https://www.nytimes.com/2020/07/20/well/live/parkinsons-disease-toxic-chemicals.html?smid=em-share - New Year with Parkinson’s: Words Worth Living in 2020 & Beyond
Abstracted by Derek Ransley from the work of Frank Church · January 10, 2020
https://drive.google.com/file/d/1bM3uNZmHEX1yKIgoGHD_F8luB7-9WBs6/view?usp=sharing - Online only = Journey with Parkinson’s. Read more by Frank Church on his blog:
https://journeywithparkinsons.com/top-15-posts/ - Online only = Parkinson’s and Dance: Dance is a powerful medium to help maintain and restore balance and rhythm. Watch these videos on YouTube. Videos say it so much better than text.
a. The first video is by a Brooklyn, N.Y. based group with a focus on rhythm.
https://youtu.be/ydktMq5t9Qc
b. Here is what the Denver Rockies do in Colorado
https://youtu.be/ENu51imonmU
c. Watch this northern California based group’s presentation.
https://youtu.be/7saMTzgD76M Debbie Sternbach teaches this combination dance and movement class in Walnut Creek. Class is called “Dance moves me.” - Dance Therapy May Help Improve Motor Function of Parkinson’s Patients, Pilot Study Reports
https://parkinsonsnewstoday.com/2018/09/19/dance-therapy-may-benefit-parkinsons-patients-pilot-study/ - Swimmers Beware of Deep Brain Stimulation (DBS): This 2019 article notes that some patients who have had DBS have lost ability to swim:
https://www.nytimes.com/2019/11/27/health/swimming-Parkinsons-brain-implants.html - A Privilege to Participate. The Michael J Fox Foundation collects self-reported data from those with PD. The program is called Fox Insight. It creates a fascinating series of real stories told in a quick, engaging style. This story is about Diane Winiarski, age 65.
https://www.michaeljfox.org/news/privilege-participate - Why Dyskinesias Are A Research Priority in Pd. Think this is of interest even though no specific answers are available. It lets us know that somewhere, in a good scientific establishment, important clinical research is being carried on.
https://www.worldpdcongress.org/home/2020/1/13/why-dyskinesias-are-a-research-priority-in-pd
Online Resources
PD Glossary
Ever get confused with all the terms thrown around when talking about PD? Do you have to become a pharmacist or medical doctor first? Here is a quick way to understand the terms you read and may hear – from WebMD. Listed in alphabetical order; easy to browse’ contains a ton of embedded links should you want to learn more.
See this Google Doc for complete Glossary
How to live well with Parkinson’s online… Even if you’re homebound
Excellent and timely article from Davis Phinney Foundation. The title says it all. Even though connecting with people through hugs and handshakes and shared experiences is a key piece of living well, we are missing that in significant ways every day.
If you’re looking for ways to exercise, connect, and play online, the article includes a few of the options out there.
See resource: https://www.davisphinneyfoundation.org/blog/live-well-parkinsons-online/
Mood: A Mind Guide to Parkinson’s Disease
Want to know more about PD and mood changes? This authoritative 64 page guide from Parkinson’s Foundation will guide you through key topics:
- About PD
- What is mood?
- Anxiety
- Other mood issues
- Talking about changes in your mood
- Tips for caregivers
See resource: https://www.parkinson.org/pd-library/books/Mood-A-Mind-Guide-to-Parkinsons-Disease
Mood and cognition: Non-motor symptoms
One-hour YouTube webinar from Parkinson Canada.
This webinar will help you from a practical perspective, on how to deal with relationship issues stemming from mood and cognitive changes that occur as a result of living with Parkinson’s disease. The webinar will also focus on various communication strategies.
Watch on YouTube: https://youtu.be/ehgnOj5hAk8
Parkinson’s Disease: Nutrition Matters
Produced by the Parkinson’s Foundation. This 72-page PDF document provides a comprehensive resource covering diet and drug interactions, correlations with physical symptoms such as constipation, bone health and weight loss. It also provides lots of recipes, menus and shopping lists.
https://www.parkinson.org/sites/default/files/Nutrition_Matters.pdf
