Education topics and resources
Care partner Resources
Davis Phinney Foundation
https://davisphinneyfoundation.org/resources/parkinsons-care-partner-resources/
The Parkinson’s Foundation Care Partner Program is designed with care partners in mind and is recommended for anyone caring for someone living with PD, including spouses, partners, children or friends.
The Care Partner Program: Building a Care Partnership
This Series of Online Courses for Family Care Partners are: Completely Free and available for anyone with an internet connection
Self Paced – each can be completed in 1-2 hours in a single sitting or spread out over days, weeks or months
Designed by the Care Partner Program Committee, made up of current and former Parkinson’s Care Partners
Read more at https://www.parkinson.org/Summit
APDA REaources for care partners
https://www.apdaparkinson.org/resources-support/for-caregivers/
Dance? Why should people with Parkinson's dance?
Dancing Your Way to a Better Quality of Life with Parkinson'shttps://parkinsonsdisease.net/living/dance-therapy
Dancing Helps People With Parkinson's Diseasehttps://www.forbes.com/sites/evaamsen/2019/04/30/dancing-helps-movement-for-people-with-parkinsons-disease/
“You get a sense of your body and are pushing your body to do things you con’t think you can accomplish,” says Brown, who was diagnosed in 2008 with the neurodegenerative disease. “There is something about the music and movement together that seems to help at a different level. … I come out of the class feeling energized and relaxed, all at the same time, and ready to move.”https://stanmed.stanford.edu/2017winter/dance-for-parkinsons-disease-at-the-stanford-neuroscience-health-center.html
Evidence from more than 40 peer-reviewed scientific studies serves to underpin the effectiveness and benefits of the Dance for PD teaching approach. The program has been featured in such media channels as The New York Times, USA Today, NBC, CNN, NPR, and The Guardian and has received multiple awards for its groundbreaking work.
Davis Phinney Foundation Every Victory Counts® manual
Click here to order your manual
https://davisphinneyfoundation.org/every-victory-counts-manual/#evcorder
YOU'LL DISCOVER
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
Diet and Nutrition
Parkinson.org
https://www.parkinson.org/Living-with-Parkinsons/Managing-Parkinsons/Diet-and-Nutrition
M. J. Fox Foundation
No one diet can treat Parkinson's disease, but medication might require mealtime considerations and dietary changes may help ease certain symptoms. Your physician or a dietitian can design a healthy, balanced diet to fit your needs and improve well-being.
https://www.michaeljfox.org/news/diet-nutrition
Dyskinesia
Dyskinesia is involuntary, irregular movement that can occur as a complication of long-term levodopa use combined with a longer course of Parkinson's disease (PD). It doesn't happen in everyone, and it occurs to different degrees. In some people, it may be painful or bothersome. Others actually prefer the extra movement of dyskinesia to being rigid or otherwise unable to move because of PD. (Dyskinesia is typically present when other Parkinson's symptoms, such as tremor and stiffness, are under good control.) If dyskinesia occurs, medication adjustments may help.
Watch the video to learn about why dyskinesia occurs, how it's currently treated and what research is ongoing to find better treatments. -https://www.michaeljfox.org/news/dyskinesia?dyskinesia=
Flying Solo
5:00 pm Eastern 2nd and 4th Mondays of Each Month
By ZOOM or phone'
Newly Diagnosed
Davis Phinney Foundation Newly diagnosed resources
https://davisphinneyfoundation.org/resources/parkinsons-newly-diagnosed-resources/
PD Medications
Find out more at these sites
Davis Phinney Foundation
https://davisphinneyfoundation.org/medication-and-parkinsons/
APDA
https://www.apdaparkinson.org/what-is-parkinsons/treatment-medication/medication/
Parkinson.org https://www.parkinson.org/Understanding-Parkinsons/Treatment/Prescription-Medications
MJ Fox
Parkinson's Foundation - Plan for the next hospital stay.
Research has found that three out of four people with Parkinson’s do not receive medications on time when staying in the hospital, and that when this occurs two out of three will experience unnecessary complications.
With more frequent hospital visits and a high sensitivity to the timing and dosing of PD medications, people with Parkinson’s face great risks in the hospital.
At the Parkinson’s Foundation, it is our mission to help people with Parkinson’s disease live better lives, and that includes staying safe while in the hospital. We want to help people affected by PD to be “Aware in Care,” which means they:
Understand the risks associated with hospital stays.
Have tools to play an active role in their care.
Are prepared for a hospital visit, whether planned or unplanned.
Have a plan to get the best possible care in the hospital.
There are three easy ways to get these life-saving resources:
Read more here https://www.parkinson.org/Living-with-Parkinsons/Resources-and-Support/Hospital-Kit
Parkinson’s Disease And Preparing For Surgery
Sleep and PD
https://www.parkinson.org/Understanding-Parkinsons/Symptoms/Non-Movement-Symptoms/Sleep-Disorders
Ask a group of people with Parkinson’s Disease how many hours of sleep they get per night and you may be in for a surprise. One study found that persons with Parkinson’s disease averaged just over 5 hours of sleep per night, and woke up twice as many times as adults of similar age without Parkinson’s disease did. Reasons for decreased sleep are varied.
Read more and view the Webinar...
https://www.apdaparkinson.org/what-is-parkinsons/symptoms/sleep-problems/
Fatigue and trouble sleeping can come from Parkinson's, its symptoms or the medications used to treat them. There are many approaches to managing fatigue and sleep changes, and researchers are working toward better treatments.
Read more...
The SteadyMouse Project
Go steady with your mouse again!
SteadyMouse is assistive software, designed from the ground up to be your fierce ally against Essential Tremor and the variants that often accompany Parkinson's disease and Multiple Sclerosis.
By detecting and removing shaking motion before it reaches your cursor, and by blocking accidental clicks, the entire mouse experience goes from a chaotic battle to an enjoyable reality.
What is Parkinson's?
M. J. Fox Parkinson's 101
https://www.michaeljfox.org/parkinsons-101
APDA - Parkinson's disease (PD) is a neurodegenerative disorder that affects predominately dopamine-producing (“dopaminergic”) neurons in a specific area of the brain called substantia nigra.
Symptoms generally develop slowly over years. The progression of symptoms is often a bit different from one person to another due to the diversity of the disease.
https://www.parkinson.org/understanding-parkinsons/what-is-parkinsons
Young Onset Parkinson's Disease (YOPD)
Causes
In everyone with Parkinson's, both genetic changes and environmental factors likely contribute, to different degrees, to cause the disease. In younger people, especially those who have multiple family members with Parkinson's, genetics may play a larger role. Certain genetic mutations (in the PRKN gene, for example) are associated with an increased risk of young-onset PD. If you have YOPD (and particularly if you have a family history of Parkinson's), you may consider genetic testing to see if you carry one of these mutations.
https://www.michaeljfox.org/news/young-onset-parkinsons-disease
OLIVIA’S STORY
Finding hope through local young onset support groups
Olivia was so young when her symptoms began that she never attributed them to anything serious. It started with weakness in her hands and poor dexterity, then progressed to muscle tension and spasms. Her grandmother, who had Parkinson’s disease herself, pointed out to Olivia that she had a tremor. Then, at only 24 years old, Olivia was diagnosed with young onset Parkinson’s disease.
https://www.apdaparkinson.org/what-is-parkinsons/early-onset-parkinsons-disease/
MANAGEMENT OF YOPD SYMPTOMS
A variety of treatments exist to help you manage YOPD symptoms. There are many behaviors you have control over. As our founder, Davis Phinney, says, “You cannot afford to be passive in your approach, whether we are talking about your day to day management or your interaction with your health care provider.”