Release Date: Wednesday – April 5, 2023
Archive Episode 116: Understanding and Finding Support for Parkinson’s Disease
Description: In recognition of National Parkinson’s Month in April, learn about Parkinson’s disease and your health, and your rights under the Americans with Disabilities Act (ADA). According to the Parkinson Association of the Carolinas, Parkinson’s Disease (PD) is a brain disorder affecting nearly 1 million people in the United States. This number is expected to rise to 1.2 million by 2030. Parkinson’s Disease is the second most common neurodegenerative disease after Alzheimer’s Disease.
Guest: Ann Marie Worman, Executive Director of Parkinson Association of the Carolinas (PAC)
Host: Janice Baldon-Gutter, Program Outreach Coordinator for Diversity, Equity, and Inclusion for the Southeast ADA Center
Moderator: Barry Whaley, Project Director of the Southeast ADA Center
Contents
- Featured in This Episode
- Information from the Parkinson’s Foundation
- Resources for Individuals, Families and Caregivers
- Resources for Veterans
- Possible Treatments for Parkinson’s Disease
- Parkinson’s Disease Research
- Legal Rights and Parkinson’s Disease
- ADA Live Episodes on the Needs and Rights of Older Adults
Featured in This Episode
Parkinson Association of the Carolinas
Phone: 1-980-245-2786
Email: pac@parkinsonassociation.org
Link: parkinsonassociation.org
Information from the Parkinson’s Foundation
- April is Parkinson’s Disease Awareness Month
Social Media: #Take6ForPD
Link: parkinson.org/parkinsons-awareness-month - Article: New Study Shows the Incidence of Parkinson’s Disease in the U.S. is 50% Higher than Previous Estimates
Study published on December 15, 2022
Link: parkinson.org/about-us/news/incidence-2022 - Parkinson’s Disease Statistics
Link: parkinson.org/understanding-parkinsons/statistics - Understanding Parkinson’s Prevalence and Incidence
Link: parkinson.org/understanding-parkinsons/statistics/prevalence-incidence - Video: Neuro Talk: What to Know About Parkinson’s Disease Statistics
Link: parkinson.org/library/videos/statistics - Podcast Episode 33: The Parkinson’s Prevalence Project
Link: parkinson.org/library/podcast/33 - Book: Parkinson’s Disease: Frequently Asked Questions
To order a print copy, visit our store or download the e-book.
E-Book: parkinson.org/library/books/faq
Resources for Individuals, Families and Caregivers
- Parkinson’s 101 – Learn about Parkinson’s Disease
Source: Michael J. Fox Foundation
Link: michaeljfox.org/parkinsons-101 - Overview of Parkinson’s Disease
Source: National Institute of Neurologic Disorders and Stroke (NINDS)
Link: ninds.nih.gov/health-information/disorders/parkinsons-disease - Programs to Support Caregivers and Families
Source: Administration for Community Living (ACL)
Link: acl.gov/programs/support-caregivers - Top Care Products for Individuals with Parkinson’s
Source: Parkinson Association of the Carolinas
Link: parkinsonassociation.org/2023/02/09/top-care-products-for-individuals-with-parkinsons - Parkinson’s Disease Caregiver Resources
Source: Parkinson Association of the Carolinas
Link: parkinsonassociation.org/parkinsons-disease-caregiver-resources - Support for Care Partners
Source: Parkinson Foundation
Link: parkinson.org/resources-support/carepartners - Building a Care Team
Source: Michael J. Fox Foundation
Link: michaeljfox.org/building-care-team - You, Your Loved One and Parkinson’s Disease [PDF]
In this guide, Lonnie Ali, wife of Muhammad Ali and member of The Michael J. Fox Foundation Founders Council, offers guidance for fellow Parkinson’s disease caregivers.
Source: Michael J. Fox Foundation
Link: michaeljfox.org/sites/default/files/media/document/MJFF_CAREGIVING.pdf - Family Caregiver Alliance
Link: caregiver.org/resource/parkinsons-disease-caregiving - Find Local Resources, Support Groups, & Online Events
Resources and educational materials in English and Spanish for individuals, caregivers, families, veterans, and healthcare professionals.
Source: American Parkinson Disease Association (APDA)
Link: apdaparkinson.org/resources-support
Resources for Veterans
- VA Caregiver Support Program
Call the U.S. Department of Veterans Affairs (VA) Caregiver Support Line (CSL) at 1-855-260-3274 to learn more about available support and to connect with the Caregiver Support Team/Coordinator at your local VA Medical Center.
Source: U.S. Department of Veterans Affairs (VA)
Link: caregiver.va.gov/Tips_by_Diagnosis/Parkinsons.asp - Camp Lejeune Justice Act of 2022
This law is part of the Honoring Our Promise to Address Comprehensive Toxics (PACT) Act, which provides health care and other resources to veterans who were exposed to toxic chemicals during military service, including those affected by the water at Camp Lejeune. The Camp Lejeune Justice Act allows veterans and their families to file a Camp Lejeune lawsuit for any injuries arising from the toxic water exposure on base, and it also provides veterans and their families with more time to take legal action over injuries that occurred decades ago.
Source: Sokolove Law
Link: sokolovelaw.com/personal-injury/camp-lejeune-water-contamination/justice-act-2022 - Camp Lejeune Water Contamination Health Issues
Source: U.S. Department of Veterans Affairs (VA)
Link: va.gov/disability/eligibility/hazardous-materials-exposure/camp-lejeune-water-contamination - Resources for Veterans with Parkinson’s Disease
Source: Parkinson Foundation
Link: parkinson.org/living-with-parkinsons/finding-care/veterans - Veterans and Parkinson’s Risk: Three Things to Know [PDF]
Source: Michael J. Fox Foundation
Link: michaeljfox.org/sites/default/files/media/document/At_Risk_One_Pagers_Veterans_06.29.22.pdf - Parkinson’s Disease Research, Education and Clinical Centers
Source: U.S. Department of Veterans Affairs (VA)
Link: parkinsons.va.gov/patients.asp - VA Disability Compensation for Veterans with Parkinson’s
Source: American Parkinson Disease Association (APDA)
Link: apdaparkinson.org/resources-support/living-with-parkinsons-disease/disability/va/
Possible Treatments for Parkinson’s Disease
- Medications for Parkinson’s Disease
Source: American Parkinson Disease Association (APDA)
Link: apdaparkinson.org/what-is-parkinsons/treatment-medication/medication - Diagnosis and Treatment of Parkinson’s Disease
Source: Mayo Clinic
Link: mayoclinic.org/diseases-conditions/parkinsons-disease/diagnosis-treatment/drc-20376062 - Guide on Deep Brain Stimulation and Parkinson’s
Source: Michael J. Fox Foundation
Link: michaeljfox.org/deep-brain-stimulation - Learn about Deep Brain Stimulation
Source: Parkinson Foundation
Link: parkinson.org/living-with-parkinsons/treatment/surgical-treatment-options/deep-brain-stimulation - Medications and Other Treatments
Source: Michael J. Fox Foundation
Link: michaeljfox.org/medications-treatments - Diet, Brain Health and Parkinson’s: New Guide
Source: Michael J. Fox Foundation
Link: michaeljfox.org/news/diet-brain-health-and-parkinsons-new-guide - Treatment Options for Parkinson’s
Source: American Parkinson Disease Association (APDA)
Link: apdaparkinson.org/what-is-parkinsons/treatment-medication - Exercises for Parkinson’s Disease
Source: Parkinson Association of the Carolinas
Link: parkinsonassociation.org/exercises-for-parkinsons-disease
Parkinson’s Disease Research
- Key Research Initiatives
Source: Michael J. Fox Foundation
Link: michaeljfox.org/key-research-initiatives - Focus on Parkinson’s Disease Research
Source: National Institute of Neurologic Disorders and Stroke (NINDS)
Link: ninds.nih.gov/current-research/focus-disorders/focus-parkinsons-disease-research - Parkinson’s Disease Research
Source: Parkinson Disease and Movement Disorders Center at Boston University
Link: bumc.bu.edu/parkinsonsdisease/research - American Parkinson Disease Association Centers for Advanced Research
Source: American Parkinson Disease Association (APDA)
Link: apdaparkinson.org/research/advanced-centers - Parkinson’s Genetics
Source: Michael J. Fox Foundation
Link: michaeljfox.org/news/parkinsons-genetics - Genetics & Parkinson’s
Source: Parkinson’s Foundation
Link: parkinson.org/understanding-parkinsons/causes/genetics
Legal Rights and Parkinson’s Disease
- Job Accommodations and Parkinson’s Disease
Some of these ADA resources and ideas can also be used at home or out in the community.
Source: Job Accommodation Network (JAN)
Link: askjan.org/disabilities/Parkinson-s-Disease.cfm - Legal Rights and Parkinson’s Disease
Source: Parkinson Foundation
Link: parkinson.org/living-with-parkinsons/legal-financial/legal - Financial and Legal Issues with Parkinson’s Disease
Source: American Parkinson Disease Association (APDA)
Link: apdaparkinson.org/resources-support/living-with-parkinsons-disease/financial-legal-issues - Factsheet: Reasonable Accommodations in the Workplace
Source: ADA National Network (ADANN)
Link: adata.org/factsheet/reasonable-accommodations-workplace - Factsheet: Health Care and the Americans with Disabilities Act
Source: ADA National Network (ADANN)
Link: adata.org/factsheet/health-care-and-ada - ADA, Disability & COVID-19 Information
Source: ADA National Network (ADANN)
Link: adacovid19.org - Fact Sheet: Know Your Rights! The Americans with Disabilities Act (ADA) & Older People
Source: ADA National Network
Link: adata.org/factsheet/know-your-rights-americans-disabilities-act-ada-older-people - Fact Sheet: Including Older People with Disabilities
Source: ADA National Network
Link: adata.org/factsheet/including-older-people-disabilities - ADA Live! Podcast: Rationing of Medical Care and Protecting the Rights of People with Disabilities | Resources
Source: Southeast ADA Center
Podcast: adalive.org/episodes/episode-80
Resources: adalive.org/resources/episode-80-resources - National Center on Law & Elder Rights (NCLER)
Link: ncler.acl.gov
ADA Live Episodes on the Needs and Rights of Older Adults
You can access all ADA Live! episodes with archived audio, accessible transcripts, and resources at ADAlive.org. Listen on the SoundCloud ADA Live! channel at soundcloud.com/adalive.
Source: Southeast ADA Center
- Episode 93: Aging, Disability and ADA: Know Your Rights | Resources
Podcast: adalive.org/episodes/episode-93
Resources: adalive.org/resources/episode-93 - Episode 81: Improving the Lives of Older Adults | Resources
Podcast: adalive.org/episodes/episode-81
Resources: adalive.org/resources/episode-81-resources - Episode 56: Disability and Aging: Medicare, Medicaid, and Benefits Enrollment Assistance | Resources
This episode is the second of a two-part conversation (see Episode 54) with the National Council on Aging. Both episodes share a list of resources from Episode 54.
Podcast: adalive.org/episodes/episode-56
Resources: adalive.org/resources/episode-54-resources - Episode 54: Disability and Aging: Community Living and Policy | Resources
This episode is the first of a two-part conversation (see Episode 56) with the National Council on Aging. Both episodes share a list of resources from Episode 54.
Podcast: adalive.org/episodes/episode-54
Resources: adalive.org/resources/episode-54-resources