Parkinson's Disease Support: What's Out There and How to Get It

Understanding the Support Landscape for Parkinson's Disease

What support is available for parkinson's disease encompasses medical care, therapies, financial aid, emotional counseling, and community programs. Here's a quick overview:

Core Support Categories:

• Medical Treatment: Neurologists, medications (levodopa), surgery (Deep Brain Stimulation)
• Therapeutic Services: Physical, occupational, and speech therapy; specialized exercise
• Financial Aid: Insurance navigation, copay assistance, grants, welfare benefits
• Emotional Support: Counseling, support groups, helplines
• Caregiver Resources: Respite care, dedicated support groups, educational programs
• National Organizations: Parkinson's Foundation (1-800-4PD-INFO), APDA (800-223-2732), Michael J. Fox Foundation

Parkinson's disease is a progressive neurological disorder affecting movement with symptoms like tremors and balance problems. However, about 50% of people with Parkinson's also face non-motor symptoms such as anxiety, depression, and pain.

The good news is you don't have to face it alone. A comprehensive support system exists to manage these challenges, from medication and surgery to specialized exercise like Rock Steady Boxing and financial aid. Accessing the right resources can dramatically improve quality of life.

I'm Lou Ezrick, a physical therapist at Evolve Physical Therapy in Brooklyn with experience in neurological rehabilitation. I've helped many individuals steer what support is available for parkinson's disease to regain function and independence. This guide will walk you through the major support avenues to help you build a comprehensive care plan.

Medical and Therapeutic Support for Managing Symptoms

Proper medical care begins with a diagnosis from a neurologist. Since there's no single definitive test, a diagnosis is based on your medical history, symptoms, and a neurological exam. Your doctor may order blood tests or imaging like an MRI or a dopamine transporter (DAT) scan to rule out other conditions. A promising new development is the alpha-synuclein seed amplification assay, which accurately identified Parkinson's in 87.7% of cases using spinal fluid and may lead to a future blood test.

Once diagnosed, medication is the cornerstone of symptom management, working to increase or substitute for dopamine.

• Levodopa (often with Carbidopa) is the most effective medication, converted by the brain into dopamine. It can be taken as a pill, inhaled powder (Inbrija), or continuous infusion (Duopa).
• Dopamine agonists (e.g., Pramipexole) mimic dopamine's effects and are often used in earlier stages.
• MAO-B inhibitors (e.g., Selegiline) block an enzyme that breaks down dopamine, making it last longer.
• COMT inhibitors (e.g., Entacapone) are sometimes added to extend the effectiveness of levodopa.

When medications become less effective or cause side effects like dyskinesia (involuntary movements), surgical options can offer relief.

• Deep Brain Stimulation (DBS) involves implanting electrodes in the brain that send electrical pulses to reduce tremors and dyskinesia.
• MRI-guided focused ultrasound is a less invasive option that uses ultrasound waves to treat severe tremors. You can learn more about clinical trials for MRI-guided focused ultrasound for Parkinson's disease.

The Crucial Role of Supportive Therapies

Supportive therapies are essential for maintaining independence. Think of them as a coaching team to help you thrive.

• Physiotherapy addresses movement difficulties like stiffness and poor balance through targeted exercises. At Evolve Physical Therapy, our specialized Parkinson's Physical Therapy Brooklyn program uses a hands-on approach to help you move better.
• Occupational therapy helps you find safer ways to perform daily tasks like dressing and cooking, often recommending home modifications and assistive devices.
• Speech and language therapy strengthens your voice, improves articulation, and addresses swallowing difficulties to ensure you can eat and drink safely.
• Diet and nutrition advice from a dietitian can help manage issues like constipation and optimize medication absorption.

Engaging in these therapies is fundamental to effective disease management and is proven to maintain better function and quality of life, as emphasized by organizations like Parkinson's UK and their information on the role of therapies in Parkinson's care.

Specialized Exercise and Lifestyle Programs

Regular exercise is powerful medicine for Parkinson's, shown to slow motor decline and improve symptoms.

• Beneficial Activities: Aerobic exercises like walking and swimming, Tai Chi for balance, Yoga for flexibility, and dance for movement and mood are all excellent choices.
• Rock Steady Boxing: We are passionate about this non-contact, boxing-inspired fitness program created for people with Parkinson's. It improves balance, gait, agility, and strength in a supportive group setting. We're proud to offer it at Rock Steady Boxing Brooklyn NYC, and our program's transformative impact was even featured on NBC Nightly News Covers Rock Steady Boxing at Evolve Physical Therapy.

Fall prevention is critical. Simple strategies like using handrails, installing night-lights, and removing throw rugs make a big difference. A physical therapist can teach you safer walking techniques and recommend assistive devices.

Lifestyle adjustments like a high-fiber diet, adequate hydration, and good sleep also support overall health. Always discuss these changes with your healthcare team. Understanding what support is available for parkinson's disease means recognizing that medical treatment and therapeutic support work hand-in-hand.

What Support is Available for Parkinson's Disease: Financial and Practical Aid

The financial side of living with Parkinson's can be daunting, but what support is available for parkinson's disease includes significant financial and practical assistance.

Navigating insurance and healthcare costs is often overwhelming. A smart first step is a care and support needs assessment from your local authority. This assessment creates a personalized care plan and can open doors to practical help, such as home modifications and assistive devices. An occupational therapist can recommend items like grab bars or walking aids to improve safety and independence.

How can individuals access financial assistance for Parkinson's disease?

No one should have to skip medication due to cost. Several resources exist to provide financial relief.

The PAN Foundation offers grants and copay assistance programs to help people manage medication costs, removing financial barriers to treatment. You can learn more or contribute by visiting their page on giving now to help patients afford medication.

Additionally, local authority support and welfare benefits can offer broader financial aid. Many people are eligible for benefits they aren't claiming. National organizations are experts in this area. For example, Parkinson's UK provides detailed information on financial support, including welfare benefits, grants, and loans.

Don't hesitate to explore these options. These programs are designed to help you manage the costs of Parkinson's. Reaching out is a smart strategy for managing your condition effectively. Access to financial grants, home modifications, and assistive devices is a fundamental part of living well with Parkinson's.

Finding Emotional, Community, and Caregiver Support

Living with Parkinson's involves more than physical symptoms. The emotional impact is significant, with a 2022 study showing that roughly 50% of people with Parkinson's experience anxiety, depression, or pain. These feelings are valid, and addressing them is a critical part of your care.

Mental health professionals who specialize in chronic illness can provide crucial support. However, sometimes the most powerful help comes from connecting with peers who understand your journey. Sharing your story can be incredibly relieving. That's why we created spaces like our Parkinson's Disease Online Support Group, offering comfort and friendship from home.

Primary Organizations and Their Resources

Three major organizations serve as resource headquarters for the Parkinson's community.

• The Parkinson's Foundation is a lifeline for many. Their Helpline at 1-800-4PD-INFO offers support in English and Spanish. They also provide educational materials, webinars, local chapters, and the PD GENEration program for no-cost genetic testing. Explore their offerings at the Parkinson's Foundation.
• The American Parkinson Disease Association (APDA) provides support wherever you are. Their Helpline at 800-223-2732 offers assistance in English, Spanish, and Mandarin. They host free webinars, virtual fitness classes, and offer a vast Resource Library. Learn more at the American Parkinson Disease Association.
• The Michael J. Fox Foundation focuses on accelerating research but also provides extensive educational resources to keep you informed about the latest developments. Visit the Michael J. Fox Foundation to learn more.

How can caregivers receive support and education?

If you're a caregiver, you deserve support, too. Caregiving is a demanding role, and caregiver stress is real and common. It's okay to feel overwhelmed.

Education can empower you. Johns Hopkins Medicine offers practical guides for caregivers, and we've developed our own resources, including Caregiver Support for Parkinson's, to address your unique challenges.

Connecting with other caregivers is transformative. In a support group, you'll find people who understand the fatigue, guilt, and small victories. Our Parkinson's Caregiver Support Group provides a welcoming space for these connections.

Finally, consider respite care. Taking breaks is essential for your own well-being and allows you to continue providing loving support.

Where can I find local and specialized support groups?

Finding your community can change your entire experience with Parkinson's.

• Local chapters of organizations like the Parkinson's Foundation offer face-to-face meetings, exercise classes, and social events. You can find your local chapter to connect with people in your area.
• Online groups provide convenient connection, especially if you have mobility challenges or live in a rural area.
• For the newly diagnosed, targeted programs like Parkinson's UK's "First Steps" can help you make sense of your diagnosis and start living well from day one.

If you can't find a group that fits, consider starting one. We offer a guide on how to form a support group for Parkinson's to help you bring people together.

The Future of Parkinson's Care: Research and Advocacy

Parkinson's research is advancing rapidly, bringing hope for better treatments, earlier detection, and a cure.

A major breakthrough is the alpha-synuclein seed amplification assay, a test that can detect Parkinson's before symptoms begin, with work underway to develop it into a simple blood test. Clinical trials are the backbone of this progress, offering participants access to cutting-edge treatments while advancing science.

The Parkinson's Foundation's PD GENEration program provides no-cost genetic testing, contributing to a massive database that helps researchers identify genetic links to the disease. Meanwhile, care standards are continuously updated through resources like the NICE guidelines on Parkinson's disease, ensuring patients know what care to expect.

How to Get Involved and Make a Difference

You have the power to make a difference, even without a scientific background. Here’s how you can contribute:

• Participate in Research: Your experience is invaluable. Parkinson's UK makes it easy to get involved in research through trials, surveys, and other studies.
• Volunteer: Give your time to a local support group or fundraising event to make an immediate impact.
• Fundraise: Every dollar helps accelerate the search for a cure. You can donate to support research and know you're making a difference.
• Advocate: Use your voice to campaign for better care, fair benefits, and increased awareness.
• Spread Awareness: Talk openly about Parkinson's to correct misconceptions and build a more supportive community.

By getting involved, you can help change what it means to live with Parkinson's.

Frequently Asked Questions about Parkinson's Support

Here are answers to some common questions about what support is available for parkinson's disease.

What is the first step after a Parkinson's diagnosis?

After a diagnosis, focus on these key actions:

1. Consult a movement disorder specialist: This neurologist has expert knowledge of Parkinson's treatments.
2. Build your healthcare team: Include a physical therapist, occupational therapist, and speech therapist to help maintain your quality of life.
3. Seek trusted information: Use resources from the Parkinson's Foundation and the American Parkinson Disease Association (APDA).
4. Find a support group: Connecting with peers provides emotional comfort and practical advice.

Can exercise really help with Parkinson's symptoms?

Yes, absolutely. Exercise is one of the most powerful tools for managing Parkinson's. Research shows that regular, targeted exercise can improve balance, flexibility, and strength, and may even slow motor decline.

Programs like Rock Steady Boxing, which we offer at Evolve Physical Therapy, are specifically designed to combat symptoms like poor balance, gait issues, and rigidity. Other beneficial activities include Tai Chi, yoga, dance, and swimming. The key is consistency and finding an activity you enjoy.

Are there support options available in different languages?

Yes. Accessibility is a priority for major Parkinson's organizations.

• The American Parkinson Disease Association (APDA) helpline (800-223-2732) offers support in English, Spanish, and Mandarin.
• The Parkinson's Foundation helpline (1-800-4PD-INFO) provides assistance in English and Spanish.

Many organizations also offer educational materials and resources in multiple languages and accessible formats. If you need support in a specific language, contact these foundations directly for guidance.

Conclusion

Living with Parkinson's disease is a journey, but you are not alone. As we've explored, what support is available for parkinson's disease is extensive and built on several key pillars:

• Medical Support: Your neurologist, effective medications, and advanced surgical options.
• Therapeutic Support: Physical, occupational, and speech therapists who help you maintain independence. Programs like Rock Steady Boxing empower you to fight back against symptoms.
• Financial & Practical Help: Assistance from organizations like the PAN Foundation to manage costs.
• Emotional & Community Support: Helplines, support groups, and caregiver resources that connect you with a community that understands.

Research is also providing new hope through genetic testing, earlier diagnosis, and innovative treatments. By getting involved, you can help shape a better future.

Taking the first step can feel daunting, but it can be as simple as calling a helpline or trying a new exercise class. Each action is a move toward living well with Parkinson's.

If you're in the Brooklyn area and ready to see how specialized physical therapy can improve your quality of life, we invite you to connect with us. Learn more about specialized Parkinson's physical therapy in Brooklyn and find how the hands-on approach at Evolve Physical Therapy can support your journey. We're here for you.