Welcome to the PARK4U Resource Page. There are so many excellent sources of information available for you as you begin to learn about Parkinson’s disease or how to help a loved one on their Parkinson’s journey. This page will provide you with a representative sampling of some of these sites. PARK4U will make every effort to provide you with resources that we feel will be most beneficial. These topics will be updated regularly. As always, your feedback is welcome and you are invited to share your own insights and questions on our Forum.
The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis, judgement, or treatment. You should always seek the advice of your physician or qualified health provider with questions or concerns regarding your health. Relying on information provided on this website or any linked websites is understood to be solely at your own risk.
Questions You May Have
Is Parkinson’s Inherited? – NEW
In this webinar, aired September, 2017, panelists discuss what has been learned recently about genetics and Parkinson’s. These discoveries are being used to develop earlier and more effective diagnoses and therapies. Watch the full library of past webinars at this site.
Are people with Parkinson’s disease more at risk for Covid? - NEW
Parkinson’s disease itself does not increase the risk of catching COVID-19. However, older adults are at the highest risk of developing a severe case of COVID-19, and because most patients with Parkinson’s disease are typically older, they should take extra precautions to protect themselves, following the guidelines of the U.S. Centers for Disease Control and Prevention (CDC).
Is Parkinson’s a Brain or a Gut Disease?
Research into understanding the role of the gut-brain connection in the development of Parkinson’s disease is critical for treatment and slowing the progression of the disease.
Ten Questions to Ask Your Doctor about Parkinson’s.
How quickly will my disease progress? What medication should I take? Should I change my diet or exercise? These are some of the questions you may want to talk to your doctor about once you have received a diagnosis.
Five Questions to Ask After a Parkinson’s Disease Diagnosis.
Do I need a movement disorder specialist? How can I, (can I?) maintain my quality of life? What kind of support is there in my area? These and guidance about many more aspects of living with Parkinson’s are discussed here.
What Causes Parkinson’s?
It is known that both environmental and genetic factors influence the development of Parkinson’s, however the interaction of each has been poorly understood. As reported in Parkinson’s News Today, risk factors include a family history of the disease, depression, excessive daytime sleepiness, smoking and moderate to high alcohol consumption.). Identifying these risk factors early will enable them to identify those at greater risk of developing PD, and to provide early intervention.
APDA in Your Community
Sorted by state and zip code, the national network of the American Parkinson Disease Association provides information and referral, education and support programs, health and wellness activities, and events to facilitate a better quality of life for the Parkinson's community. This grassroots structure distinguishes APDA from other organizations serving people with Parkinson's disease. Look for your local chapter and Information and Referral (I & R)Center.
sponsored by the Parkinson’s Foundation.
Rated by Healthline as one of the best Parkinson’s blogs 2020, and sponsored by the Parkinson’s Foundation, this site has a wealth of practical and timely information.
For up-to-date information on coronavirus, read the latest blog post, "Looking Ahead: Parkinson's, COVID-19 & the New Normal."
Did you know?
While most people associate Parkinson’s with a movement disorder, for many
non-movement symptoms can be more troublesome than movement symptoms. For example, did you know that small handwriting and loss of the sense of smell (think pickles, bananas) can also be an early sign? Did you know that people with Parkinson’s are not always angry or sad, but may be suffering from ‘facial masking’?
Stages and Symptoms
10 Early Signs of Parkinson’s Disease – from Parkinson’s Foundation - NEW
People may not consider small handwriting, loss of the sense of smell, dizziness, or constipation as a possible warning sign of Parkinson’s. If you or your loved one is experiencing one or more of these symptoms for an extended period of time, talking to your doctor about this is important.
Medications for Non-Motor Symptoms of PD - NEW
This link will provide guidance in dealing with the non-motor symptoms of Parkinson’s, which may include fatigue, anxiety and depression, low blood pressure, sexual problems, pain, and more. Each symptom is discussed separately and explained in a very easy-to-understand manner.
Link between Specific White Blood Cells and Higher Risk of PD
This study may help to identify people at the very early stages of PD. People with low levels of lymphocytes, a type of white blood cell, may be at higher risk of Parkinson’s disease later in life, a large database study reports.
Link between Gut Inflammation and Parkinson’s
(see also under Questions: Is Parkinson’s a Brain or a Gut Disease? And below: Parkinson’s May Have Two Distinct Subtypes)
Inflammatory bowel disease (IBD) is a risk factor for Parkinson’s disease, and this risk is lower in IBD patients treated with medications that reduce bowel inflammation. These findings suggest that gut inflammation may be involved in the onset of Parkinson’s. We need to understand the gut’s likely influence on Parkinson’s development better,” said Patrik Brundin, MD, PhD, the institute’s deputy chief scientific officer and study lead. https://parkinsonsnewstoday.com/2021/06/14/gut-inflammation-linked-to-brain-disease-onset-in-parkinsons-mouse-model-study/?utm_source=PAR&utm_campaign=da5d019266-PAR_ENL_3.0_US&utm_medium=email&utm_term=0_62dd4fb5e3-da5d019266-73883225
Published by the Davis Phinney Foundation
A webpage with a number of printable worksheets for wellness and lifestyle self-assessments, including 15 symptoms checklists. Also available are worksheets to prepare for appointments, hospitalizations, medical procedures (including DBS – deep brain stimulation), and healthcare provider collaboration.
Parkinson’s May Have Two Distinct Subtypes
The diversity of symptoms and progression of Parkinson’s has long puzzled the research community. A new study indicates that Parkinson’s is actually two distinct conditions, one that begins in the gut and moves to the brain, and one that starts in the brain and moves to the intestines and other organs. It is hoped that his discovery will lead to better and more targeted treatments. https://parkinsonsnewstoday.com/2020/10/02/parkinsons-may-have-2-distinct-subtypes-study/ and https://www.diagnosticimaging.com/view/mri-and-pet-reveal-parkinson-s-is-two-diseases
Newly Diagnosed: Living Your Best Life with Parkinson’s
You are not alone. Parkinson’s disease is the fastest growing neurological disorder in the world. New advances in causes and treatments are occurring rapidly. You can continue to live a full and meaningful life.
Common Symptoms of Parkinson’s Disease.
Although Parkinson’s disease symptoms can vary widely from individual to individual, they are generally divided into motor and non-motor symptoms. Examples of motor symptoms are perhaps better known and often include tremor, rigidity, postural instability etc. Non-motor symptoms may include difficulty with attention, disturbances with the sense of smell, anxiety and depression etc.
Treatment, Medication, Clinical Trials
Be sure to discuss any prospective treatments, including homeopathic, that you are interested in, and if you are considering participation in a clinical trial with your doctor prior to beginning.
Stanford Parkinson’s Community Outreach - NEW
A list of monthly webinars compiled by the Stanford Parkinson’s Community Outreach. Resources offer an overview of Parkinson's disease (PD), including information about the pathology, commonly experienced motor and non-motor symptoms, how to assemble a healthcare team, pharmacological and surgical treatment options, emotional and physical health, and more.
PD GENEration: Mapping the Future of Parkinson’s Disease - NEW
This is a national initiative that offers genetic testing for Parkinson’s related genes and genetic counseling at no cost for people with Parkinson’s disease. Participation can be in person or from home through a telemedicine appointment. The video explains the initiative.
Medicare and Parkinson’s: What You Need to Know - NEW
June 24, 2021 at 1 p.m. ET
Approximately 90% of people with Parkinson’s (PwP) are covered by Medicare. Navigating Medicare while managing Parkinson’s disease can be daunting. This webinar , sponsored by the Parkinson’s Foundation and AARP will explain coverage options and how to find resources and more.
Parkinson’s Research: PPMI Clinical Study - NEW
Launched by The Michael J. Fox Foundation, the Parkinson’s Progression Markers Initiative is a landmark study begun in 2010 to better understand the onset and progression of Parkinson’s disease, and to speed the development of new and effective treatment. The study is looking for 1400 people with and without Parkinson’s disease.
DBS – Deep Brain Stimulation – Found to Reduce Costs, Lower Medication Use - NEW
A recent study (Oct. 2021) found that using DBS in adults with early-stage PD was found to reduce overall cost of medication and was found to reduce overall costs of living with the disease. DBS has previously been found to be a cost-effective therapy for mid and advanced stages of the disease. This study shows that using DBS even earlier can lead to significant improvement in PD symptoms and quality of life.
Drug Treatment for Parkinson’s
There have been many life-changing developments in treating PD in recent years. New drugs have been developed and there is now a better understanding of drug combinations and therapies. That has made a big difference in everyday life for people with the disease. Working with a neurologist or Parkinson’s specialist early in the diagnosis is critical to determine your best treatment. https://www.webmd.com/parkinsons-disease/guide/drug-treatments#1
Newly Approved Medication Aims to Lessen “Off” Time
Ongentys (opicapone) has just been approved (Sept. 2020) by the FDA. This new drug must be taken with levodopa and it has been shown to increase the amount of time patients are without symptoms. Off time refers to when Parkinson’s symptoms return, each day.
Occupational Therapy for Parkinson’s Disease
Occupational therapists can help those with Parkinson’s disease maintain quality of life and to continue with activities that they enjoy as the disease progresses. Mobility, self-care, handwriting, and fall avoidance are some of the areas occupational therapy can help.
Medications for Parkinson’s Disease
Medication to treat Parkinson’s is improving all the time. This article and video provide an thorough explanation of common drugs used to treat Parkinson’s, as well as medication guidelines and procedures to stay safe with your meds.
Medications: Treatment Guide
Just as Parkinson’s presents differently in different individuals, so the course of medication to treat this disease will be highly individualized. Although as yet there is not a medication protocol to reverse PD, there are treatments that can mitigate the symptoms.
What Are the Treatments for Parkinson’s?
You will likely feel like you need a degree in pharmacology to understand all the possible medications available to treat Parkinson’s: levodopa, carbidopa, dopamine agonists, COMT inhibitors, Mao-B inhibitors. Then there are surgical treatments such as pallidotomy and deep brain stimulation. Plus alternative therapies such as guided meditation and Vitamin E. This site will help make sense of all this!
Several sources for Clinical Trials
webmd.com: Clinical Trials: A Guide for Patients
As of June, 2020, 18 clinical trials are in progress, 8 are open to eligible people
NIH Clinical Trial Finder
Fox Trial Finder (https://www.michaeljfox.org/join-study)
Quality of Life Matters
Newly Diagnosed: Living Your Best Life with Parkinson’s Webinar - NEW
This webinar discusses how each person with Parkinson’s is different from another. The interdisciplinary team approach to care is explained, as well as the palliative care model. Support for the patient and the caregiver is critically important.
The Kenny & Vargas Show, sponsored by Park4U – NEW
Take some time to listen to episode 7 of the Park4U podcast, titled Friends and Family. And then go on to listen to episodes 8 and 9, Toxic Load, in which Paula Vargas and JM Kenny talk with holistic health coach Tracy Leventhal about overall health and building immunity to live better with PD.
Veterans and Parkinson’s Disease: American Parkinson Disease Assn - NEW
The Department of Veterans’ Affairs (VA) has established six Parkinson’s Disease Research, Education, and Clinical Centers or “PADRECCs”. Each site delivers state-of-the-art clinical care, conducts innovative research, and offers outreach and educational programs to all veterans currently enrolled in the VA Healthcare System. Eligible veterans include those who have been diagnosed with Parkinson’s disease and those who have just started to notice PD-like symptoms.
PADRECC/Consortium Hotline at 800-949-1001, x5769 or visit their website www.parkinsons.va.gov
Parkinson’s 360 - NEW
From the Michael J. Fox Foundation, here is a free downloadable book. Each person’s journey with PD is unique. This link introduces you to real people who are living with PD and finding unique ways to thrive with this disease.
Embrace the Shake - A Column by Samantha Felder (early onset PD)
“Each year, approximately 10-20% of the 60,000 patients diagnosed with Parkinson’s in the U.S. are under the age of 50. The journey with young-onset Parkinson’s is long, and life presents different challenges. It can be a struggle to manage work, family, and friends. At some point, it is almost inevitable that our world will be knocked off its axis. It shifts, and we become the caregiver.”
Parkinson’s Well-Being Map
A really helpful online self-evaluation tool of motor and non-motor symptoms to help you identify changes in symptoms and prepare for doctor appointments. Fill out a questionnaire to prepare for your next doctor appointment. This is also available as a printable PDF.
APDA Launches Online Support Community for Patients and Caregivers
In 2017, the American Parkinson Disease Association created Smart Patients, on online community which allows patients and caregivers to share and learn from each other in a supportive and compassionate environment. Robin Kornhaber, APDA Vice President of
Programs and Patient Services, states that this network will allow us to “further a dialogue to nurture the PD community, provide socialization, education, and critical access to information.”
Contact: Stephanie Paul | 800-223-2732 | SPaul@apdaparkinson.org |
Parkinson’s 360: Real Talk for Patients and Families
From MJFox Foundation, an absolutely essential guide to all things Parkinson’s. If you are not sure where to start, start here. The 55 page booklet (downloadable for free) is full of honest and trustworthy information as you navigate this disease.
Mindfulness Mondays ~ Nutrition and Mindful Eating
Evidence shows that the practice of mindfulness can assist both persons with Parkinson’s and their caregivers in coping with the stress and challenges of living with this disease. (This series is finished at this time, but it is expected to resume.)
Michael J. Fox Foundation’s Patient Council; Guide for Newly Diagnosed
Titled If I Knew Then What I Know Now this is an outstanding compilation of reflection and tips for coping with your first year after diagnosis and beyond.
Stanford U Parkinson’s Webinars
This site provides persons dealing with Parkinson’s with a veritable smorgasbord of presentations both educational, inspirational and transformational. The topics are presented live and then archived for convenient access. Examples are: Nutrition, Exercise, Sleep, Communication etc.
The Relationship between Stress, Anxiety, & Parkinson’s
Stress and anxiety are both common in PD, and manifest in ways that are often indistinguishable from one another: difficulty sleeping, excessive worry, sweating, headaches, lack of focus and more. Understanding these factors and engaging in lifestyle modifications to help mitigate them can make a significant difference in maintaining quality of life.
Financial Considerations: 7 Legal and Financial Tips to Plan a Better Life with Parkinsons
This site will help with estate planning, insurance benefits, and legal and financial issues.
Southern California PD Support
The Stanford Parkinson's Community Outreach and Stanford APDA Information & Referral Center, based at Stanford University Medical Center in Northern California, has created a webpage of Parkinson's Disease resources in Southern California. This site provides access to a wide range of services available in the Southern California area, ranging from Palm Desert to San Diego to Los Angeles to Orange County. Each location offers somewhat different support: referrals to movement specialists, PD support groups and exercise classes, information and local resources.
November is Parkinson’s Foundation Caregiver Self-Care Month ~ NEW
They suggest a plethora of activities to support caregivers of Persons with Parkinson’s. Some of these are to participate in mindfulness Mondays, to find a local support group or join their online community, and to sign up for their Care Partner Program. See more at:
Caring and Coping: A Care Partners Guide to Parkinson’s Disease - NEW
Download this free book! From the Parkinson’s Foundation and dedicated to caregivers of people with Parkinson’s. “We hope that the tips and tools in this workbook will help prepare you for every step of the journey.”
The Parkinson’s Foundation also provides a free Helpline - NEW
Call 1-800-4PD-INFO or 1-800-473-4636.
The Challenge of Being a Caregiver Is Seeing a Loved One Struggle - NEW
Written by Mary Beth Skylis (Nov. 3, 2021). The author writes a column titled “Shaking Things Up. In this month’s article, she describes the heart wrenching reality of seeing her father cope with this disease. This site also provides other stories of people living with PD, either as patient or caregiver.
Calling All Care Partners: Managing Disease and Burnout in 2020
First aired Dec. 17, 2020, an uplifting webinar to offer support and compassion for a very challenging year by a distinguished panel of experts.
The Parkinson’s Foundation Helpline
Specialists help caregivers, people with PD and healthcare workers coordinate the many challenges of life with Parkinson’s. Medical information, local resources, and emotional support are all provided at email@example.com
Top 10 Essential Caregiver Resources
Very practical advice for caregivers. Isolation and depression are often realities for long term caregivers. These resources will help you realize you are not alone.
Caring and Coping A Caregiver’s Guide to Parkinson’s Disease
This is a very comprehensive booklet covering all aspects of Parkinson’s care.
The Stanford PD Community Blog
This free blog is produced monthly and enables caregivers to participate in web-based seminars from the comfort of their homes. This site is dedicated to caring for caregivers by presenting a wide range of topics each week. All sessions are archived for later viewing.
Coping Tips for Caregivers of Those with Parkinson’s Disease
Challenges you will face helping your loved one maintain quality of life, communication tips and more.
PD Caregiver Resources – American Parkinson Disease
A compilation from a number of different sources about Parkinsons. Includes a 176-page comprehensive guide for caregivers of people with Parkinson's at any stage, with fact sheets about symptoms, managing caregiver stress, getting or hiring help and much more.
Caregiving May Not Harm Health of Caregivers After All
Published June 24, 2020 by the Proceedings of the National Academy of Sciences of the U.S.A., this report estimates that “at least 17 million and perhaps as many as 40 million people are informal or dedicated caregivers for older adults.” The report found that this family caregiving, rather than the presumption of burden, may in fact be a mutually beneficial arrangement. For more information:
A Parkinson's Primer: An Indispensable Guide to Parkinson's Disease for Patients and Their Families (2017) by John M. Vine.
Ending Parkinson’s Disease (2020) by Ray Dorsey, MD, Todd Sherer, PhD, Michael Okun, MD, and Bastiaan Bloem, MD, PhD.
Making the Connection between Brain and Behavior 2nd Ed. Coping with Parkinson’s Disease. (2013) by Dr. Joseph Friedman
Fighting Parkinson’s…and Winning. A Memoir of My Recovery from Parkinson’s. (2017) by Howard Shifke.
300 Tips for Making Life with Parkinson’s Easier. (2006) by Shelly Peterman
Delay the Disease: Exercise and Parkinson’s Disease, 2nd Ed. (2017). By David Zid
This year’s best blogs celebrate the uniqueness of each person’s journey — along with their friends, family, and caregivers — while emphasizing the tremendous value of sharing experiences and living life to the fullest.
A Soft Voice in a Noisy World focuses on dealing and healing with Parkinson’s disease. Author and entrepreneur Karl Robb, who has lived with Parkinson’s for more than 30 years, writes with sensitivity and kindness about the challenges of living with a chronic illness — with inspirational quotes and motivational posts aplenty. It’s perfect for those looking for a balance of mind, body, and spirit.
For those looking for a side of humanity and humor with their Parkinson’s news, The Perky Parkie delivers. Allison Smith is unwaveringly positive. A cancer survivor who was diagnosed with Parkinson’s at age 32, Smith knows what it means to face a challenge. The Perky Parkie tackles real-life issues like dating with Parkinson’s and recovery after surgery, all while remaining true to its tagline — “I dare you not to laugh.”
Run by the nonprofit Parkinson’s Foundation, the Parkinson’s Today blog focuses on information useful to those living with the disease. It covers issues like science news, recent research, and the benefits of expert care. It also boasts a Caregiver Corner and tackles tough topics, including raising awareness of Parkinson’s and tips for daily living.
The Trust is dedicated to funding research to slow, stop, and reverse Parkinson’s. The news section of the U.K.-based charity focuses on recent clinical trials and the latest science news, and features a quarterly Parkinson’s webinar series.
Essential information, practical tools, and inspiration for people living with Parkinson’s — that’s the core focus of this foundation. Along with posts on treatments and health, their wonderful “Moments of Victory” series tells the stories of those with Parkinson’s who are living life to the fullest.
Shake It Up Australia Foundation (Michael J. Fox Foundation’s partner in Australia) is a nonprofit that promotes and funds Parkinson’s disease research. The blog tells the stories of heroes in the community, and promotes local fundraising and awareness events.
If you’re seeking a first-person perspective of living with Parkinson’s, you’ll find it here. Sharon Krischer started the blog to encourage the exchange of ideas and solutions with others whose lives have been affected by the disease. Her writing is deeply personal, providing insights into tips and tricks that improve her life, paired with her thoughts on the latest in research and treatments.
The Science of Parkinson’s has a simple mission: to bridge the gap between media headlines and the actual science when it comes to Parkinson’s research. Dr. Simon Stott, the deputy director of research at the Cure Parkinson’s Trust, posts regular updates about the science behind new discoveries, clinical trial results, and introduces readers to people behind the research.
Parkinson’s News Today is a digital news website dedicated to covering the science, research, and advocacy news about the disease. It’s a go-to for science news junkies looking for daily updates. The current headlines are supplemented by regular columns and forums that cover topics including living with Parkinson’s and alternative treatment options.
If you have a favorite blog you’d like to nominate, please email us at firstname.lastname@example.org.
Please join the Park4U online community where you can hear from others living with or caring for those with Parkinson’s, share your stories and offer support to one another.