PARKINSON’S CARE PARTNER RESOURCES
As a Parkinson’s care partner, you are an essential member of your person’s medical and care teams. While most care partners are spouses, children, siblings, and parents, even friends can be part of the care team. Your role as a Parkinson’s care partner will evolve over the years; therefore, we want to offer you resources and action plans to help YOU live well while also providing the best care possible for your loved one.
Here, you’ll find a collection of our most popular and helpful Parkinson’s care partner resources.
Your Parkinson Pathfinder is Here!
New Guide on Deep Brain Stimulation and Parkinson’s
People and families think about deep brain stimulation (DBS) for different reasons and at different times in their Parkinson’s journey. But no matter when or why the topic comes up, there are many common questions: What symptoms does it help? How long might it work? Will it work for me?
Our newest resource, Your Complete Guide to Deep Brain Stimulation: From Decision-Making to Daily Life with the Device, answers these questions and many more. It provides information and tips for thinking about, having, and living with DBS. And it shares the personal stories of people with Parkinson’s and their loved ones who are using this treatment.
For more on DBS, watch a webinar and visit our webpage. And to contribute to research on the Parkinson’s experience — whether you have Parkinson’s or not — join MJFF’s Parkinson’s Progression Markers Initiative (PPMI).
“Deep Brain Stimulation and Parkinson’s — From Decision-making to Daily Life with the Device” was made possible through support from Abbott Laboratories. Funding from our industry partners allows the Foundation to maintain editorial oversight in the creation of high-quality educational resources, while directing donor-raised dollars toward critical research.
The Fox Focus on Parkinson’s
The role of people and families with Parkinson’s disease (PD) has never been more important to our mission. Our 2021 Spring/Summer newsletter, The Fox Focus on Parkinson’s, celebrates the power of community in moving Parkinson’s research forward and how it will help us continue progress toward a transformation in the diagnosis and treatment of PD.
Finnish Researchers May have Discovered the Root Cause of Parkinson’s
ADPA has several publications available for download and printing here:
If you would prefer to receive the above information by mail, contact Jen at 206-695-2905 and she will mail you what you need.
In addition, ADPA also has a Patient Aid Scholarship program for those needing financial assistance. Here is the link for the application for this program: https://www.apdaparkinson.org/community/northwest/resources-support/patient-aid-scholarship-program
CANNABIS AND PARKINSON’S: WHAT TO KNOW ABOUT MEDICAL MARIJUANA, CBD, AND MORE
Making Your Voice Heard – Healthy Communication & PD: Learn about the many aspects of communication that are affected by PD, as well as treatment options and strategies for daily communication needs. Download for free, or request a hard copy be mailed to you.
Vocal Therapy & More: Dr. Gilbert interviews the co-founder of LSVT LOUD, an evidence-based speech therapy modality to help people with PD improve their voice volume and articulation; as well as LSVT BIG which helps people with their movements.
Spotlight on Parkinson’s Disease: Communication and Intimacy: Communication is an essential element to maintaining intimacy. This insightful webinar, hosted by a Clinical Sexologist, provides approachable and practical advice for increasing both physical and emotional intimacy for people who are also dealing with PD in their relationships.
Communications & Intimacy Fact Sheet: As a complement to the webinar above or as a stand-alone resource, this fact sheet offers information and useful tips for developing and enhancing intimacy despite the challenges of PD. It also includes a list of recommended reading for those who wish to learn more.
Sing Loud for PD: Singing programs are therapeutic for people with PD as they exercise the diaphragm and teach people to utilize their breath for more productive speech (they’re also fun!). Please join our virtual Sing Loud programwhich meets weekly for live online singing sessions.
Estate planning is an important part of financial wellness and an easy way to take care of the people you love. And it’s important to us that everyone has access to the peace of mind that comes from creating a plan for the future. This is why we are pleased to announce our new partnership with FreeWill.
FreeWill has been used by over 240,000 Americans to write their free wills, removing the expensive legal fees associated with the process. And you can use this new free tool to get started today.
“POISED FOR PARKINSON’S”
Part of a research study through the University of Idaho. Funded by a Grant from Mountain West Research Consortium,
A UNIQUE NEW ONLINE GROUP CLASS based on Alexander technique
FOR PEOPLE LIVING WITH PARKINSON’S and their CARE PARTNERS in rural areas of IDAHO & MONTANA
March 6 — May 5, 2021 Wednesdays & Saturdays 2:00pm-3:45pm MDT.
For this Course & Research Study: We are reaching out to people living with Parkinson’s who live in rural counties in Idaho or Montana, and who are in early stages of their diagnosis, are 55 years or older, are ambulatory without assistance, and who can participate via Zoom along with a spouse, other family care partner, or friend. The course is limited to six people living with Parkinson’s and six care partners. It will meet twice a week, for 1 hour and 45 minutes, for 9 weeks. You will have plenty of guidance on setting up your computer or other device, and using your space for the course. Please do not let “technology” be a barrier for you!
Zinnia is Better TV
Even the most dedicated care partners rely on TV at times to occupy the person living with dementia. But standard programming created for healthy brains can trigger distress for a person who is no longer able to track a plot, tell fiction from reality, or track rapidly moving images and sounds. Zinnia’s content channels feature familiar faces, subjects, and sounds to help people feel engaged and connected.
COGNITIVE SYMPTOMS aren’t easy to think or talk about. Not everyone with Parkinson’s experiences these changes, and how and when they arise can be different for each person. But what many patients and families have in common is worry about the possibility of these symptoms. This link will take you to an “Ask The MD Video” from The Michael J. Fox Foundation that will help answer some of your questions.
Does Parkinson’s Begin in the Gut? Read more here to find out.
VIRTUAL EXERCISE PROGRAMS FOR PD THROUGHOUT THE COUNTRY
BELOW ARE SEVERAL LINKS FOR EXERCISE PROGRAMS ACROSS THE COUNTRY. ALL OF THESE PROGRAMS ARE FREE AND MOST MEET ON ZOOM. SOME ARE VIDEOS YOU CAN WATCH ANYTIME. HERE IS YOUR CHANCE TO TAKE ADVANTAGE OF AN EXERCISE YOU’VE ALWAYS WANTED TO TRY BUT DID NOT HAVE ACCESS TO.
The University of Utah is currently looking for people with Parkinson’s Disease with sleep problems for a research study. The National Institutes of Health (NIH) is supporting the study. The purpose of the research study is to learn if Light Therapy reduces sleep problems associated with Parkinson’s Disease and improves quality of life. We are seeking participants who have been diagnosed with Parkinson’s Disease and have sleep problems. Participants must also be at least 45 years of age. For further information visit http://www.neuronext.org or https://www.clinicaltrials.gov or contact Mariana Douddva @ (801)581-8318 or Marianna.firstname.lastname@example.org.
Here are two more articles supporting the benefits of high intensity workouts for PD as mentioned in our Exercise and Parkinson’s page.
- High-Cadence Cycling Promotes Sustained Improvement in Bradykinesia, Rigidity, and Mobility in Individuals with Mild-Moderate Parkinson’s Disease
Balance is one of the areas that requires daily practice for people with Parkinson’s. Here is an excellent article on balance from Davis Phinney https://davisphinneyfoundation.org/a-primer-on-balance-and-parkinsons/