What resources are available for people newly diagnosed with Parkinson’s?

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What resources are available for people newly diagnosed with Parkinson’s?

Being newly diagnosed with Parkinson’s disease (PD) can be overwhelming, but there are many resources available to help individuals and their families manage the disease and navigate its challenges. These resources range from support groups and educational materials to medical care and therapeutic options. Here are some key resources for people newly diagnosed with Parkinson’s disease:

1. Parkinson’s Disease Organizations:

Parkinson’s Foundation: Offers a wide range of resources, including educational materials, information on symptom management, and support groups for both patients and caregivers. They also provide advocacy for research and access to care.
- Website: parkinson.org
Michael J. Fox Foundation: Focuses on research funding and finding a cure for Parkinson’s disease. The foundation offers valuable information about treatments, clinical trials, and symptom management.
- Website: michaeljfox.org
National Parkinson Foundation: Provides educational materials, support services, and resources for both patients and caregivers, as well as information about local events and care options.
- Website: parkinson.org
Parkinson’s UK: Offers support for individuals in the UK, including access to local groups, fundraising initiatives, and helpful advice on living with Parkinson’s.
- Website: parkinsons.org.uk

2. Support Groups:

In-Person Support Groups: Local chapters of national organizations like the Parkinson’s Foundation and Michael J. Fox Foundation often host in-person support groups for people with Parkinson’s and their caregivers. These groups provide a safe space to share experiences and learn from others living with the disease.
Online Support Groups: Many organizations also offer online communities for individuals who may not have local support groups available. These online forums and social media groups can connect people with Parkinson’s from around the world.
Caregiver Support Groups: For caregivers, joining a support group is a great way to connect with others facing similar challenges, share resources, and gain emotional support.

3. Medical and Therapeutic Care:

Neurologists specializing in Parkinson’s disease: It’s crucial to find a neurologist or a movement disorder specialist who has experience with Parkinson’s disease to guide treatment and management. Many larger medical centers have dedicated Parkinson’s clinics.
Physical Therapy and Occupational Therapy: Early intervention with physical therapy (PT) and occupational therapy (OT) can help manage mobility issues, balance problems, and daily functional tasks. Many therapists specialize in Parkinson’s disease rehabilitation and can tailor their treatments to the specific needs of the individual.
Speech Therapy: People with Parkinson’s may experience speech and swallowing difficulties. Speech-language therapists (SLPs) can help with techniques to improve speech clarity and swallowing.

4. Online Resources and Educational Websites:

American Parkinson Disease Association (APDA): Offers educational resources, online courses, and information on treatment options. They also host online webinars to help patients understand their diagnosis and explore management strategies.
- Website: apdaparkinson.org
Parkinson’s Disease Foundation (PDF): Provides educational materials, a caregiver’s guide, and updates on clinical research. PDF also has an online community and events for those affected by Parkinson’s.
- Website: parkinson.org
MedlinePlus (NIH): A trusted resource for information about Parkinson’s disease, including links to clinical trials, research updates, and treatment options.
- Website: medlineplus.gov

5. Clinical Trials and Research Participation:

Many organizations like the Michael J. Fox Foundation and the Parkinson’s Foundation provide information about ongoing clinical trials for new treatments and medications. Participating in a clinical trial can offer access to new therapies and contribute to the advancement of Parkinson’s research.
ClinicalTrials.gov is a useful website to search for current trials involving Parkinson’s disease, including trials for new medications, therapies, and interventions.
- Website: clinicaltrials.gov

6. Financial and Legal Resources:

Social Security Disability Insurance (SSDI): For people who can no longer work due to Parkinson’s disease, applying for SSDI benefits can provide financial support. The Parkinson’s Foundation and other local organizations can help guide you through the application process.
Legal Advice and Planning: As Parkinson’s progresses, individuals may need to make decisions regarding power of attorney, wills, and long-term care. Many resources provide free or low-cost legal advice specific to Parkinson’s disease.

7. Books and Publications:

“The Parkinson’s Disease Treatment Book” by J. Eric Ahlskog: This book provides comprehensive information on treatment options, including medication, surgery, and non-medical treatments.
“Parkinson’s Disease: A Complete Guide for Patients and Families” by William J. Weiner, Lisa M. Shulman, and Anthony E. Lang: This book offers in-depth information for those newly diagnosed, as well as caregivers and family members.
Many Parkinson’s disease organizations offer free pamphlets or downloadable resources that provide concise information about living with Parkinson’s, treatment options, and coping strategies.

8. Exercise Programs:

Regular exercise can help manage Parkinson’s symptoms, particularly for mobility, balance, and muscle stiffness. Many programs are specifically designed for people with Parkinson’s disease:
- Rock Steady Boxing: A non-contact boxing program aimed at improving strength, balance, and flexibility for people with Parkinson’s disease.
- Dance for Parkinson’s: Dance programs that focus on movement and rhythm to improve coordination, balance, and mobility.
- Parkinson’s Wellness Recovery (PWR!Moves): A therapy-based exercise program developed specifically for people with Parkinson’s to improve mobility and quality of life.

9. Counseling and Mental Health Support:

Psychological support is important for individuals with Parkinson’s disease, as they may face challenges related to depression, anxiety, and adjusting to life with a chronic illness.
Cognitive behavioral therapy (CBT) and support groups can be valuable resources for managing the emotional aspects of Parkinson’s disease.

10. Parkinson’s Disease Apps:

There are various mobile apps that can help individuals track their symptoms, manage medications, and stay informed about research and events. Some examples include:
- Parkinson’s Disease Companion App: Helps patients track symptoms, medications, and appointments.
- My Parkinson’s Story: A social app that connects people with Parkinson’s to share experiences and find support.

Conclusion:

For people newly diagnosed with Parkinson’s disease, the wealth of resources available today can help manage symptoms, navigate challenges, and improve quality of life. From support groups and medical care to exercise programs and emotional support, there are many tools to guide patients and their families through the journey. It’s important to seek help from a variety of sources and establish a comprehensive care plan that includes medical treatment, therapy, and emotional support.

Would you like additional information on any of these resources or specific support services in your area?

The Parkinsons Protocol