Author Archives: Admin

Research and Advocacy

  1. The Michael J Fox Foundation succeeds in proving the most robust and up-to-date information regarding current research, breakthroughs and all advocacy opportunities there are related to living with Parkinson's Disease.  Read the latest information here: (https://www.michaeljfox.org/contact-your-policymakers)
  2. Kent State University – “Our current research examines the benefits of exercise and movement training on motor function in individuals with Parkinson's disease and multiple sclerosis.” With Angela Ridgley https://www.kent.edu/ehhs/hs/exph/motor-control-lab
  3. Cleveland Clinic – “Currently, our center offers clinical trials examining the efficacy and safety of pharmacological, non-pharmacological (such as exercise therapy), and surgical (such as deep brain stimulation and gene therapy) treatments. In collaboration with colleagues from Cleveland Clinic Lerner Research Institute, several translational research projects are underway in neurophysiology, genetics, transcranial stimulation, and biomarkers.” https://my.clevelandclinic.org/research/neurological/neurological-restoration
  4. University Hospitals – “Along with Case Western Reserve University School of Medicine, the center is working to refine current techniques and discover new treatments. Areas of investigation include:
    • The establishment of the Case Western Reserve University Clinical and Translational Science Collaborative’s (CTSC) Parkinson’s disease phenotypic and genotypic registry to examine the genetic effects of the disease.
    • Participation in the national BrainGate 2 study, which is examining the potential and ability of those suffering paralysis to control a computer cursor and other assistive devices with their thoughts.
    • A Phase 4, open-label, efficacy and safety study of APOKYN® for rapid and reliable improvement of motor symptoms in Parkinson’s disease.
    • A National Institutes of Health-sponsored study examining functional magnetic resonance imaging (fMRI) investigations of the effects of deep brain stimulation in dystonia.
    • Functional magnetic resonance imaging (fMRI) investigations of Parkinson’s disease and the brain network changes involved in changes in the handling and perception of other parts of the body for patients with Parkinson’s disease.” https://www.uhhospitals.org/uh-research/department-research/neurology-and-neurosurgery-research/parkinsons-movement-clinical-research
  5. MetroHealth – To search the database to see if they have available studies involving people with Parkinson’s Disease, visit https://www.metrohealth.org/research/clinical-trials
  6. Parkinson’s Foundation Aware In Care Kit - The Aware in Care kit is filled with useful tools and information to help a person with Parkinson’s during their next hospital visit, planned or unplanned. Download free contents, order a physical kit or connect with an Aware in Care Ambassador to learn more or to have them speak at your event at this link: https://www.parkinson.org/resources-support/hospital-care-kits

Connect with others with Parkinson’s Disease

  1. Michael J Fox Buddy Network – This is an online resource for people with Parkinson’s Disease and those who support them. It is a social platform where you can connect with others with whom you have similarities as well as ask questions. Learn more here: https://parkinsonsbuddynetwork.michaeljfox.org/
  2. Parkinson’s Foundation PD Conversations - When you join a discussion group, you’ll connect with other people who share your same interests, challenges and hopes. Our Helpline will be on hand to answer your Parkinson’s questions and support you along the way.  To see what all this community has to offer, visit this link: https://www.pdconversations.org/s/

Care Partner Resources

  1. As a care partner, it’s important that you have resources to support you in your role as Partner in Parkinson’s or Care partner. The APDA has a resource with various links that may be beneficial as some point throughout your loved one’s journey with Parkinson’s Disease. Becoming a Care Partner
  2. The Parkinson’s Foundation also has a page for Care Partners of people with Parkinson’s Disease providing resources for various stages in your journey as well as tips for supporting your loved one from afar. https://www.parkinson.org/resources-support/carepartners
  3. The Michael J Fox Foundation has the Buddy Network which can help you connect to other Care Partners in your region or throughout the country. Find more information about the Buddy Network here: https://www.michaeljfox.org/build-connections-parkinsons-buddy-network

Early/Young Onset

  1. The Michael J Fox Foundation has several webinars, booklets and helpful blogs that provide information and considerations for people who are younger when initially diagnosed with PD. (https://www.michaeljfox.org/news/young-onset-parkinsons-disease)
  2. David Phinney Foundation Resource page has videos and previous educational events with topics relevant for Early Onset. They also have a Young Onset Alliance and Ambassadors whom you can connect with.  (https://youtu.be/906guET4izE)
  3. This blog post from the Parkinson Foundation describes 10 resources for Young Onset people with Parkinson’s Disease: (https://www.parkinson.org/blog/tips/young-onset-resources)
  4. The APDA also has a blog with several resources for people with Young Onset PD. (https://www.parkinson.org/blog/tips/young-onset-resources)

Newly Diagnosed

  1. The Parkinson’s Foundation provides many resources for people who are newly diagnosed including a Newly Diagnosed Kit.  You can see this introductory video and find resources here: https://www.parkinson.org/living-with-parkinsons/new-to-parkinsons
  2. The Michael J Fox Foundation provides a guide to support you through your journey from diagnosis of Parkinson’s Disease and beyond. The information here is helpful in answering the most frequently asked questions shortly after a new diagnosis. https://www.michaeljfox.org/resources-people-newly-diagnosed-parkinsons

General Parkinson’s Information

  1. The “Understanding Parkinson’s” section of the Michael J Fox Foundation provides an extensive overview of the symptoms, possible causes, medications, and treatments as well as related conditions.  The video above explains the symptoms, diagnosis and treatments for Parkinson’s Disease.
  2. InMotion is a local nonprofit organization in Beechwood specialized in providing free, quality education and exercise for people with Parkinson’s Disease.  They offer an introduction: PD 101 and subsequent online 201 course at their facility. Find out more about the educational resources available below. https://beinmotion.org/parkinsons-programs-cleveland/.
  3. Whether you are a person with Parkinson’s Disease, a loved one or a friend who would like to provide support, the Parkinson Foundation provides many resources related to symptoms, diagnosis, treatment and living well with Parkinson’s Disease.  (https://www.parkinson.org/understanding-parkinsons) The Parkinson’s Foundation also has links to various resources including their helpline, hospital kits, online community to meet others with PD as well as an online Library of pre-recorded and live educational sessions of your topic of interest. (https://www.parkinson.org/resources-support).  Also, an easy to read guide for exercise and movement can be found here: https://www.parkinson.org/blog/awareness/exercise-recommendations. Parkinson’s Foundation “Store”  To order free resources from the foundation to be shipped to your house.
  4. The American Parkinson’s Disease Association (APDA) is a resource for live and recorded educational talks for People with Parkinson’s and their families. ( https://www.apdaparkinson.org/upcoming-events/). They also provide guidance to exercise and movement in their booklet here: http://ohparkinson.com/wp-content/uploads/2022/04/APDA1703-Be-Active-Beyond-D5V2-4web-exercise-book-2022.pdf
  5. The Brian Grant Foundation provides resources and information to live your life well with Parkinson’s Disease. There are many recipes that accompany information regarding nutrition and exercise to support living empowered and active lives. (https://briangrant.org/)
  6. The Davis Phinney Foundation is another online resource which includes a Parkinson’s 101 (https://davisphinneyfoundation.org/resources/) section with various information as well as virtual webinars, educational events, and resources for people with PD. The topics are organized nicely at the bottom of the resources page for easy access. (https://davisphinneyfoundation.org/resources/)
  7. Staging is typically only discussed for the purposes of research.  It is often not reliable for the general Parkinson’s Population due to the large variability and varied progression of Parkinson’s Disease from one person to the next. If you’d like to find out more about staging Parkinson’s Disease, The Parkinson Foundation: https://www.parkinson.org/understanding-parkinsons/what-is-parkinsons/stages and the APDA are two resources for information about staging.  https://www.apdaparkinson.org/article/stages-in-parkinsons/