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Trusted Organizations

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Trusted Organization

Trusted Organization

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American Parkinson Disease Association (APDA): The largest grassroots organization in the country that supports people with Parkinson's disease (PD). Their mission is to improve quality of life for the PD community by providing support, education, research, health and wellness activities, and more. APDA also has local chapters and I&R centers. Their toll-free number is (800) 223-2732.

https://www.apdaparkinson.org/


Parkinson's Foundation: Has funded over $182 million in research and support services, and established a network of Centers of Excellence at leading universities around the world. They also launched the Parkinson's Outcomes Project, the largest clinical study of Parkinson's ever, with 13,000 participants in four countries. Their toll-free number is (800) 473-4636.

https://www.parkinson.org/


Michael J. Fox Foundation: Another major Parkinson's organization.

https://www.michaeljfox.org/


Albany County Department for Aging

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Trusted Organization, Local, Aging

Trusted Organization

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Deb Riitano, Commissioner 162 Washington Avenue Albany, NY 12210 Phone (518) 447-7198 https://www.albanycounty.com/departments/aging

American Parkinson Disease Association (APDA)

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Trusted Organization

Trusted Organization

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The American Parkinson Disease Association (APDA) is the largest grassroots network dedicated to fighting Parkinson’s disease (PD) and works tirelessly to help the approximately one million with PD in the United States live life to the fullest in the face of this chronic, neurological disorder. h

ttps://www.apdaparkinson.org/

Brian Grant Foundation

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Trusted Organization

Trusted Organization

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The Brian Grant Foundation provides proven tools to improve the well-being of people with Parkinson’s. BGF was established in 2010, following Brian’s diagnosis in 2008 at the age of 36. Though there is no cure for Parkinson’s, exercise, nutrition and a supportive community can help manage symptoms, maintain overall health and prevent other serious illnesses.

https://briangrant.org

Clinical Trials.gov

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Trusted Organization, Research

Trusted Organization

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ClinicalTrials.gov is a Web-based resource that provides patients, their family members, health care professionals, researchers, and the public with easy access to information on publicly and privately supported clinical studies on a wide range of diseases and conditions. The Web site is maintained by the National Library of Medicine (NLM) at the National Institutes of Health (NIH) https://clinicaltrials.gov/


Search for actively recruiting studies that you may be able to participate in or learn about new interventions/treatments that are being considered.

Davis Phinney Foundation

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Trusted Organization

Trusted Organization

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WE HELP PEOPLE WITH PARKINSON’S LIVE WELL TODAY. Since 2004, the Davis Phinney Foundation has brought to life some of the most important programs, research, content, and events for those affected by Parkinson’s. Our community includes people living with Parkinson’s, Parkinson’s care partners, families and friends of those living with Parkinson’s, physicians, and Parkinson’s allied health professionals.


https://davisphinneyfoundation.org/

LSVT BIG -Physical Therapy for Parkinson’s Disease

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Trusted Organization, Physical Therapy

Trusted Organization

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LSVT Global

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Treatment, Trusted Organization

Trusted Organization

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Today there are two distinct LSVT therapy programs: LSVT LOUD speech therapy improves communication in daily living; and LSVT BIG physical or occupational therapy improves mobility and movement used in everyday function. These are not general exercise programs. Instead, they are research-based treatment protocols designed specifically to address the motor, sensory and non-motor symptoms that many people with PD face. LSVT LOUD and LSVT BIG treatments can only be given by specially trained LSVT Certified Clinicians. With their guidance, people with PD will learn to translate skills built during treatment into better everyday communication, function and movement. https://www.lsvtglobal.com/

Parkinson's Foundation Helpline: 1-800-4PD-INFO (473-4636)

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Trusted Organization, Support, Housing

Trusted Organization

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Call the Parkinson's Foundation Helpline 1-800-4PD-INFO (1-800-473-4636) for answers to your Parkinson’s disease (PD) questions. Staffed by nurses, social workers and health educators, the Parkinson's Foundation Helpline is here to support you in any possible way, including:


Current disease information

Medical issues including symptoms and treatments

Health and social care

Referrals to health professionals and community resources for local support

The Parkinson's Foundation Helpline is open Monday through Friday from 9 a.m. to 7 p.m. ET. We can assist you in either English or Spanish. You can also email us with a question at any time: Helpline@Parkinson.org or interact with us and the Parkinson's community at large on PD Conversations.


Staffed by nurses, social workers and health educators, the Parkinson's Foundation Helpline is here to support you in any possible way, including: Current disease information Medical issues including symptoms and treatments Health and social care Emotional support Referrals to health professionals and community resources for local support The Parkinson's Foundation Helpline is open Monday through Friday from 9 a.m. to 7 p.m. ET. We can assist you in either English or Spanish


https://www.parkinson.org/Living-with-Parkinsons/Resources-and-Support/Helpline


Parkinsons Foundation

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Trusted Organization

Trusted Organization

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Better Lives. Together.

Understanding Parkinson’s

Living with Parkinson’s

Resources & Support

Advancing Research

https://www.parkinson.org/

Practical physical therapy

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Physical Therapy

Physical Therapy

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Mia is a physical therapist who has specialized in treating people with Parkinson's and similar movement disorders for 29 years.


After retiring, she wanted to continue to help these individuals who have inspired me. This led her to organize and produce educational videos for the PD community. My hope is that people will share this information to make life a little better. Many videos are applicable to both the person with PD as well as their care partner.


You can find these videos on my website ( https://www.parkinsonspt.com ) or my YouTube channel https://www.youtube.com/@parkinsonsPT


Areas addressed on this website/YouTube channel:


Walking: different avenues to take bigger steps are reviewed (attention strategies, auditory cues & visual cues). Also included are videos which specifically address freezing, turns and gait festination.


Transfers: each transfer is addressed in a separate video such as how to get up from a chair, the floor, in/out of bed as well as getting in/out of a car.


Caregivers: learn how to use a gait belt, how to safely assist someone with each type of transfer such as bed mobility, chair transfers & floor transfers.


Balance: there is a  video that discusses the top 10 reasons for balance problems, also included are individual videos covering postural instability and orthostatic hypotension.


Walkers: an entire section is devoted to walkers & rollators. Areas covered are: how to set up a 2 wheeled walker, how to use a 2 wheeled walker, how to use a rollator and lastly the pros and cons of various ambulatory devices for making the proper decision on which one to use.


Helpful devices: These items seemed to stand the test of time regarding their practicality with the individuals I have worked with in physical therapy.


Disclosure - She is not associated with any company who sells any products and do not receive any commission.

Mia Boelen PT


Newly Diagnosed

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PD101

Newly Diagnosed

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“You have Parkinson’s.” An estimated 60,000 people in the US hear these three words each year, setting them on a journey that, for so many, is filled with more questions than answers, especially in the beginning. But after 16 years of working to help people live well with Parkinson’s, we know these three words don’t have to mean giving up on the kind of life you imagined for yourself or your family. We also know that the longer it takes for someone to find the resources they need to live well, the longer their Parkinson’s will present challenges that affect their quality of life in negative ways. To help you get what you need, here is a collection of our most popular and helpful Parkinson’s resources for people who have been newly diagnosed.


No matter at what age you are diagnosed, you will be challenged by the news of a disease that you may not know much about. Whatever the reaction to your diagnosis, you will need to give yourself plenty of time to process the range of emotions you will experience. In the next several months, your goal should be to think through the emotional and physical effects of your diagnosis and to learn all you can about the illness as well as the resources that can help you stay healthy, both mentally and physically.”


People experiencing the signs of Parkinson disease should seek the care of a neurologist. Your doctor will recommend an individualized treatment plan. This may include lifestyle changes. All treatments have some side effects. The choice of which side effects can be tolerated depends on the individual.


Albany Medical Center has a Parkinson’s Disease and Movement Disorders Center and provides the type of care found only at an academic medical center



Checklist for the NEWLY DIAGNOSED - Davis Phinney Foundation

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PD101

Newly Diagnosed

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Download this checklist to find out what you can do every day, every week, every month and every year to live well with Parkinson’s.

When you are newly diagnosed with Parkinson’s, you may be filled with worry, fear, questions, and feelings of loss and sadness. In addition, you’ve probably heard advice from your medical team and loved ones about what you need to do to live well with it. And that can feel overwhelming. That’s why we created this Parkinson’s newly diagnosed checklist. We wanted to create a simple plan you can put into action quickly so you can live well with Parkinson’s now and for many years to come.

https://davisphinneyfoundation.org/parkinsons-newly-diagnosed-checklist/

Davis Phinney Foundation - Parkinson's 101

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PD101

Newly Diagnosed

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Parkinson’s is a complex neurological disorder that can affect almost every part of the body, ranging from how you move to how you feel to how you think and process. Since Parkinson’s affects everyone differently, the specific ways you choose to live well will be unique and change over time. However, a positive attitude, staying engaged in your own health, consistently exercising, and making a commitment to act are steps everyone living with Parkinson’s can take to live well right now.https://davisphinneyfoundation.org/resources/parkinsons-101/

Every Victory Counts Manual

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Trusted Organization, PD101, Book

Newly Diagnosed

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First published in 2010, the Every Victory Counts® manual broke new ground as the only resource of its kind, devoted solely to the principle of proactive self-care and a holistic approach to managing Parkinson’s. In subsequent editions, it has gained international recognition as a superb and comprehensive resource for changing the way people live with Parkinson’s. Now in its sixth edition, the manual is the cornerstone of our new Every Victory Counts suite of resources, a robust collection of printed and digital manuals (including a new Every Victory Counts Manual for Care Partners) that embrace the Davis Phinney Foundation’s philosophy of taking action to improve your quality of life with Parkinson’s.


Essential information about Parkinson’s plus dozens of topics that are frequently overlooked but critical to helping you live well Insights from more than 50 Parkinson’s experts, including physicians, therapists, and scientists who share cutting edge research, strategies, and ideas for living well with Parkinson’s Advice and inspiration from dozens of people living well with Parkinson’s today In-depth information about exercise, nutrition, emotional health, medication, therapies, and more https://davisphinneyfoundation.org/every-victory-counts-manual/

Mayo Clinic PD 101 Overview

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PD101

Newly Diagnosed

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Parkinson's disease can't be cured, but medicines can help control the symptoms, often dramatically. In some more advanced cases, surgery may be advised. PD101 https://www.mayoclinic.org/diseases-conditions/parkinsons-disease/symptoms-causes/syc-20376055

Michael J. Fox Introduction to Parkinson's PD 101

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PD101

Newly Diagnosed

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Parkinson’s disease (PD) occurs when brain cells that make dopamine, a chemical that coordinates movement, stop working or die. Because PD can cause tremor, slowness, stiffness, and walking and balance problems, it is called a “movement disorder.” But constipation, depression, memory problems and other non-movement symptoms also can be part of Parkinson’s. PD is a lifelong and progressive disease, which means that symptoms slowly worsen over time. The experience of living with Parkinson's over the course of a lifetime is unique to each person. As symptoms and progression vary from person to person, neither you nor your doctor can predict which symptoms you will get, when you will get them or how severe they will be. Even though broad paths of similarity are observed among individuals with PD as the disease progresses, there is no guarantee you will experience what you see in others. Estimates suggest that Parkinson’s affects nearly 1 million people in the United States and more than 6 million people worldwide. https://www.michaeljfox.org/parkinsons-101

New Parkinson's Diagnosis - Davis Phinney podcast

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PD101

Newly Diagnosed

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If you suspect you have Parkinson’s, but you haven’t received an official diagnosis, you may be frustrated by the process and wondering what really goes into a diagnosis.

In either case, this podcast episode is for you. In this episode Kelsey Phinney speaks with Dr. Aaron Haug, a neurologist specializing in Parkinson’s at Blue Sky Neurology in Colorado about: How to reframe a Parkinson’s diagnoses and take control of your ability to live well with it https://davisphinneyfoundation.org/a-primer-on-parkinsons-for-the-newly-diagnosed/

PD SELF -A program for Newly Diagnosed that Improves Quality of Life

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PD101

Newly Diagnosed

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PD SELF is a national program for Parkinson’s patients who have been newly diagnosed within the last 3 years. This program provides patients with the motivation, confidence, skills and knowledge to improve their quality of life by introducing them to ways of better managing their disease as it progresses over time. Care partners are encouraged to participate and will be provided with educational tools to be a more effective care partner. Having a care partner is not a requirement https://davisphinneyfoundation.org/programs/pd-self/

Parkinson Foundation PD 101

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PD101

Newly Diagnosed

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Parkinson’s 101: We Answer Your Top Parkinson’s Questions

https://www.parkinson.org/blog/awareness/parkinsons-questions

Primer for newly diagnosed - Davis Phinney Foundation

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PD101

Newly Diagnosed

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Hearing the words, “You have Parkinson’s,” is life changing. For some, a Parkinson’s diagnosis may mark the end of a long and frustrating search to explain a collection of different and seemingly disconnected symptoms. For others, a Parkinson’s diagnosis is a complete shock, filled with feelings of disbelief and despair. For everyone, a Parkinson’s diagnosis brings a new and unexpected journey.


http://davisphinneyfoundation.org/a-primer-on-parkinsons-for-the-newly-diagnosed/

Motor Symptioms

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Motor Symptioms

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Although the motor symptoms of Parkinson’s tend to get the most attention and treatment, they often don’t appear until many of the brain’s nerve cells that produce dopamine have already stopped working. The four primary motor symptoms are tremor, stiffness (rigidity), slowness (bradykinesia), and postural instability.

Through this collection of resources, we help you identify and learn about these common Parkinson’s motor symptoms. Even though you may not experience all of them, knowing about common motor symptoms will help you be proactive in managing the motor symptoms you do experience so you can live well.

Medication

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Medication

Medication

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When you’re living with Parkinson’s, medication is typically an important part of your overall care. Professionals trained to help you with medications include movement disorder specialists, neurologists, primary care physicians, pharmacists, physician assistants, and advanced practice nurses. There are many different classes of medications that offer options for people with mild to advanced Parkinson’s symptoms. Treatment discoveries are also progressing at a rapid pace, and new medications are continually added to the growing list.  


Here, you’ll find a collection of our most popular and helpful resources about Parkinson’s medications. 

https://davisphinneyfoundation.org/resources/parkinsons-medications/

Ask the MD: What's in Your Parkinson's Medicine Cabinet? MJ Fox vIdeo

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Medication, Video

Medication

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Wondering about Parkinson’s disease (PD) medication options, what they can and can’t do, their side effects and more? In this video, Rachel Dolhun, MD, DipABLM, movement disorder specialist, lifestyle medicine physician and senior vice president of medical communications at The Michael J. Fox Foundation (MJFF), shares what to know and ask about available and upcoming PD medications, wherever you are in your journey. 12 minutes

https://www.youtube.com/watch?v=ovXPGvJ9hdQ

Drugs.com

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Medication, Trusted Organization

Medication

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Drugs.com is the most popular, comprehensive and up-to-date source of drug information online. Providing free, peer-reviewed, accurate and independent data on more than 24,000 prescription drugs, over-the-counter medicines & natural products.

DRUGS A-Z,  PILL IDENTIFIER, INTERACTION CHECKER, NEWS & ALERTShttps://www.drugs.com/

GoodRX

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Finance, Medication

Medication

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Save up to 80% on prescriptions¹ Easily get FREE GoodRx coupons to use at popular pharmacies. https://www.goodrx.com/

Needy Meds

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Finance, Medication

Medication

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NeedyMeds is an online information resource of programs that provide assistance to people who are unable to afford their medications and health care costs. All the information is free, easy to access and updated regularly. No registration is required and we don't request any personal information. https://www.needymeds.org/

The NEUPRO Patch

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Treatment, Medication

Medication

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https://www.neupro.com/parkinsons-disease/rotigotine-dopamine-agonist


NEUPRO® (rotigotine transdermal system) is a prescription medicine used to treat Parkinson’s disease.

WebMD

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Trusted Organization

Medication

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As a leader in digital health publishing for more than 25 years, WebMD strives to maintain the most comprehensive and reliable source of health and medical information on the internet. We recognize the responsibility that comes along with being the most well-known and trusted health information platform

Exercise Resources

Tags:

Exercise

Exercise

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Significant research studies and anecdotal evidence highlight the critical importance of exercise for people with Parkinson’s. Regular physical exercise can improve mobility and coordination, boost your mood, reduce stiffness, and minimize soreness and fatigue. And each year, more studies prove that exercise may slow the progression of Parkinson’s itself. Multiple studies explore the possibility that exercise helps protect nerve cells at risk of damage, degeneration, or cell death. In other words, the most vulnerable cells are strengthened before they experience damage – thanks to exercise.   

 

In this collection of resources, we share information about the many ways exercise is medicine for Parkinson’s, plus what to do if you’re not sure what type of exercise is best for you, you don’t feel like exercising, you need to find a Parkinson’s physical therapist in your area, exercise hurts, you need a plan that’s doable and sustainable, and much more. 

https://davisphinneyfoundation.org/resources/exercise-and-parkinsons/#1617120426527-e4e7f5e8-bdc1

Local PD Specific Exercise classes

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Exercise, Local

Exercise

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Find them here https://www.helpforpd.org/exercise-classes

Power for Parkinsons

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Exercise

Exercise

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We are a non-profit organization offering FREE Parkinson's fitness classes


https://www.youtube.com/@PowerforParkinsons/about

Tai chi may slow Parkinson's symptoms for years, study finds

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Exercise

Exercise

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Tai chi may help slow down the symptoms of Parkinson's disease for several years, a Chinese study suggests.


Those who practised the martial art twice a week had fewer complications and better quality of life than those who didn't, the researchers say. Parkinson's is a progressive brain disease which leads to tremors and slow movement, and there is no cure. Experts say the findings back up previous studies on the benefits of exercise for those with Parkinson's.

https://www.bbc.com/news/health-67208745

Albany County Department of Social Services

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Long-term Care, Local

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Albany County Department of Social Services

Address: 162 Washington Avenue 

City: Albany NY 12210

Website: They don't have a specific website for the long-term care program, but you can visit the Albany County website: https://www.albanycounty.com/departments/social-services

Contact Email: Albany_county_NYConnects@albanycountyny.gov

Office Phone: 518-447-7177 (This number serves for both Information and Inquiries)

Languages: English

Description:

NY Connects: Choices for Long Term Care (NY Connects) is a program that helps people explore long-term care options. Their staff can provide information and assistance at no cost.

Albany Guardian Society

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Housing, Transportation, Local

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The mission of Albany Guardian Society is to improve the lives of seniors in the Capital Region, their families and their caregivers, through information, education, research, and collaboration. Albany Guardian Society offers 150 classes on age related topics throughout the year. Includes directories for: Senior Housing Options Directory Deciding on one’s next home can be a stressful and complicated experience, especially for seniors. The good news is there are a lot of excellent senior housing options to choose from. Senior Transportation Options Directory Transportation is a vital link for seniors to remain active and independent in their community. 


New in 2021, the “Transportation Options for Senior Adults in the Capital Region” directory provides the name, contact information, specific services provided, hours of service, accommodations, and fees for the senior transportation options in Albany, Rensselaer, Saratoga, and Schenectady counties. 


https://albanyguardiansociety.org/

Albany Medical Center - Occupational and Physical Therapy Center

Tags:

Physical Therapy, Medical Professionals, Local

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Maximizing Recovery Physical Medicine and Rehabilitation is vital to the care of patients who are recovering from an accident, stroke, or neurological disorder, or who are learning to live with a chronic disease. Our neurologists, neurosurgeons, and physiatrists work together to bring patients back to maximum function through the most advanced technology. Care Throughout the Capital Region This page features information about rehabilitation services at Albany Medical Center. 

To schedule an appointment with Albany Medical Center, call 518-262-5633.

 Learn more about rehabilitation services at Columbia Memorial Health, Glens Falls Hospital, and Saratoga Hospital. Learn more about Albany Med Health System member Visiting Nurses. All locations in the System can be found in the Get Care section of this page. 

https://www.amc.edu/patient/services/physical_therapy/index.cfm

Alzheimer’s Association, caregiver and referral services

Tags:

Memory, Care Partners

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Shannon Lawler, (518) 867-4999 ext. 306.


Serving needs of those dealing with Parkinson’s and other conditions, not restricted to Alzheimer’s

The Alzheimer’s Association 24/7 Helpline (800.272.3900) is available around the clock, 365 days a year. Through this free service, specialists and master’s-level clinicians offer confidential support and information to people living with dementia, caregivers, families and the public.

https://www.alz.org/help-support/resources/helpline

CAPTAIN community services

Tags:

Finance

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Help for Seniors If you're in need of emergency assistance, please call us at 518-399-3262. Our senior support programs are listed below. Care Links Trained Care Links volunteers provide supportive services to persons 60+ in the towns of Ballston (including Burnt Hills), Charlton, Clifton Park, Halfmoon, Malta, the Village of Ballston Spa, and the city of Mechanicville. We help people live independently in their homes as long as possible, offering: friendly visiting, transportation, respite assistance, shopping and errands, light housekeeping and chores, support groups, telephone reassurance, information and referral, and more. Click here for more information about Care Links, call 518-399-3262 or click here to contact us online.


 Care Links 

Trained Care Links volunteers provide supportive services to persons 60+ in the towns of Ballston (including Burnt Hills), Charlton, Clifton Park, Halfmoon, Malta, the Village of Ballston Spa, and the city of Mechanicville. We help people live independently in their homes as long as possible, offering: friendly visiting, transportation, respite assistance, shopping and errands, light housekeeping and chores, support groups, telephone reassurance, information and referral, and more.


Click here for more information about Care Links, call 518-399-3262 or click here to contact us online.

https://captaincares.org/get-help/seniors.html

Care Partner resources

Tags:

Care Partners

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Care partner Resources 


Davis Phinney Foundation https://davisphinneyfoundation.org/resources/parkinsons-care-partner-resources/ 


The Parkinson’s Foundation Care Partner Program is designed with care partners in mind and is recommended for anyone caring for someone living with PD, including spouses, partners, children or friends. 


The Care Partner Program: Building a Care Partnership 

This Series of Online Courses for Family Care Partners are: Completely Free and available for anyone with an internet connection Self Paced – each can be completed in 1-2 hours in a single sitting or spread out over days, weeks or months Designed by the Care Partner Program Committee, made up of current and former Parkinson’s Care Partners 

Read more at https://www.parkinson.org/Summit APDA Resources for care partners https://www.apdaparkinson.org/resources-support/for-caregivers/


Look for local care artner groups at 

https://www.cdparkinsons.org/nearby-groups


Catholic Charities

Tags:

Finance, Local

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Catholic Charities, recognizing human need at all stages of life, responds to all persons regardless of race, creed, or lifestyle, with special emphasis on the economically poor and the vulnerable. Catholic Charities serves and empowers persons in need, advocates for a just society, calls forth and collaborates with women and men of good will in fulfillment of its mission. https://www.ccrcda.org/get-help/albany-county/

DBS and Me - Boston Scientific

Tags:

Treatment, DBS

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If you are living with Parkinson’s Disease (PD), medication isn’t your only option. Learn about treatment options— like Deep Brain Stimulation (DBS) and find support and care partner resources.

https://www.dbsandme.com/en.html

Driving When You Have Parkinson’s Disease

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Transportation

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Ending Parkinson's Disease: THE BOOK

Tags:

Advocate, Book

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Ending Parkinson’s Disease proposes a bold PACT to Prevent the disease, Advocate for protective policies, Care for patients, and Treat the condition with innovative therapies. The authors gather the expertise of clinicians, patients, and cutting-edge researchers to tell the full story of Parkinson’s and what we can do to end it. As we confront this coming wave of disease, this book is an indispensable guide for patients, families, clinicians, scientists, politicians, and activists. https://endingpd.org/

Every Victory Counts® Parkinson’s worksheets, checklists, and assessments

Tags:

PD101

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The Every Victory Counts  Parkinson’s worksheets, checklists, and assessments are a great way to help you become more aware of the timing and characteristics of your symptoms, document those symptoms, note changes, and discuss them with your doctor. You can also log progress toward achieving your wellness goals, such as exercise, and see how far you’ve come and where you need to go.


Experiencing freezing of gait? Compare these treatment options

Tags:

Treatment, Symtoms

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/80%of people with advanced PD experience freezing of gait. Walking through a doorway Turning a corner Turning around Stepping from one type of surface to another Experiencing a stressful situation or attempting multitasking General exercises: non-freezing specific, generic physical exercises (such as stretching and resistance training) C

onventional physiotherapy: muscle strengthening and balancing exercises

 Obstacle training: using obstacles to train, generally with a physical therapist

 Dual task training: doing two tasks at once; usually one mental and one physical Robotic-assisted walking: walking exercises wearing an exoskeleton device 

Real-time biofeedback: using a feedback machine to help guide behavior 

External cueing: using visual cues, such as stripes on floor; and verbal cues, such as walking rhythmically to a song or beat 

Action observation training: intently watching an action, then practicing that action Psychoeducation: educating people with PD about freezing, plus developing motivational, emotional and coping skills 

Mind-body exercises: working through coordination-oriented movements, such as Tai Chi, dance, yoga 

Care/control groups: group that was compared to above interventions, included those who receive routine PD care, unproven interventions, or no intervention at all The study participants were approximately 63 to 80 years of age. Thirty-nine out of the 46 studies included gender information; 55% included participants were male. Importantly, across all included studies, age, gender, disease duration, disease stage, severity of movement symptoms, and severity of freezing was comparable.The primary tools used were the validated Freezing of Gait Questionnaire (FOGQ) and the New Freezing Gait Questionnaire (nFOGQ), which measure the severity and impact of freezing in the daily lives of people with PD. A broad range of additional statistical analyses were also conducted. Unique to this analysis, all 11 freezing treatment approaches were simultaneously compared in a single analysis (analysis studies generally compare one or two interventions).Results Obstacle training, gait training on treadmill, and general exercise all demonstrated immediate, real-life benefits compared to usual care. Overall, obstacle training had the greatest and most immediate positive effect, followed by gait training on treadmill and action observation training. Only people with mild to moderate PD experienced beneficial effects of freezing behavioral treatments. What does this mean? Obstacle training, gait training on treadmill, general exercise, action observation training, and conventional physiotherapy can provide immediate, real-life benefits for people with PD who experience freezing episodes.As noted by the study authors, “Surprisingly, the positive effects of some commonly prescribed interventions for gait rehabilitation, such as external cueing, dual task gait training and mind–body exercises (including dance) were not evident in this analysis” (Kwok et al., 2022a).That is not to suggest that these other commonly prescribed interventions are not effective. Rather, additional, robust studies are clearly warranted to help support evidence-based research directions and recommendations for improved freezing episode management.If you experience freezing episodes, talk with your doctor about exploring the interventions that might work best for you. While some interventions (obstacle training, treadmill, physiotherapy) have been shown to have immediate benefits, the best intervention for you may also depend on availability, feasibility and cost.

The sudden, involuntary inability to move — that feeling of your feet being glued to the floor when trying to take a step — is called freezing of gait.

26%of people with mild Parkinson’s symptoms experience freezing of gait.


Freezing of gait is also associated with a reduced quality of life, loss of independence, increased wheelchair use, high rates of institutionalization, and mortality (Kwok et al., 2022b). The complex science behind what causes freezing episodes is not well understood. What is well understood is that while freezing can occur at any time, it usually happens when a person with PD is:Transitioning from standing to walking


Comparing the effectiveness of interventions (behavioral techniques) currently prescribed to help manage freezing episodes (and which ones work best) would be valuable information for anyone managing Parkinson’s symptoms. Recently published in the Journal of Neurology, “Managing freezing of gait in Parkinson’s disease: a systematic review and network meta-analysis” (Kwok et al., 2022b) the authors sought to do exactly that, with some surprising results.Drawing from multiple databases (between the years 1990 and 2021) to identify randomized controlled freezing behavioral management trials in the PD population, ultimately 46 studies were analyzed. The 11 most common techniques used to help recover from a freezing episode were compared:

Gait training on a treadmill: walking using a motorized treadmill

From: https://www.parkinson.org/blog/science-news/freezing

Find an Movement Disorder Specialist (MDS) in your Area

Tags:

Medical Professionals

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Health Insurance Information Counseling and Assistance Program (HIICAP)

Tags:

Finance

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Website : https://aging.ny.gov/health-insurance-information-counseling-and-assistance-program-hiicap National Toll Free Phone : 800-701-0501 Description : HIICAP counselors help seniors and their caregivers to understand Medicare and other health insurance options and benefits. Hours : 9:00 am - 3:00 pm, EST Monday to Friday.

Hospital Safety Kits from parkinson.org/

Tags:

Advocate

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Research has found that three out of four people with Parkinson’s disease (PD) do not receive medications on time when staying in the hospital. When this occurs two out of three will experience unnecessary complications. With more frequent hospital visits and a high sensitivity to the timing and dosing of PD medications, people with Parkinson’s face great risks in the hospital. At the Parkinson’s Foundation, it is our mission to help people with Parkinson’s disease live better lives, and that includesstaying safe while in the hospital. Understand the risks associated with hospital stays. Have tools to play an active role in their care. Are prepared for a hospital visit, whether planned or unplanned. Have a plan to get the best possible care in the hospital. Three easy ways to get these life-saving resources: https://www.parkinson.org/resources-support/hospital-safety-kits

Jewish Family Services

Tags:

Finance, Local

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How We Help and Who We Help Jewish Family Services of Northeastern New York has been continuously providing a continuum of support, services and resources for individuals and families of all ages since 1854. JFS is proud to serve people of all backgrounds, while also having a unique ability and responsibility to meet the particular needs of the Jewish community. Our programs and services range from counseling to guidance for those aging in place to assistance for those facing food or financial insecurity – and so much more. JFS’s expert staff is available virtually, by telephone and in person. See a complete list of our services: JFS At-a-Glance https://jfsneny.org/about-jfs/mission-vision-values

Legal Aid Society of Northeastern New York, Albany Office

Tags:

Legal Services

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Address : 95 Central Avenue City : Albany State : NY Zip : 12206 Website : https://www.lasnny.org Office Phone : 518-462-6765 Information Phone : 800-462-2922 Description : We provide free civil legal services to low-income people. Special Notes : Closed noon to 1 pm. Hours : 9:00 am - 5:00 pm, ET Monday to Friday.

Local Care Partner Resources

Tags:

Local, Care Partners

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Parkinson’s Care Partner Resources 4/2024 

Local PD Care Partner Support Groups 

IN PERSON, Mornings, monthly, Clifton Park 

Contact: Nancy Eson (518) 281-6012 


IN PERSON, Evenings, monthly, Colonie 

Contact: Addy Spitzer (320) 249-6862 


ZOOM ONLY: Evenings, monthly, originated from Albany County Contact: Nancy Eson (518) 281-6012 


National PD Organizations - Care Partner Resources 

Davis Phinney Foundation 

https://davisphinneyfoundation.org/ 


Parkinson Foundation 

https://www.parkinson.org/ 

Helpline: 1(800) 473-4636 


American Parkinson Disease Association (APDA) https://www.apdaparkinson.org/ 


Michael J. Fox Foundation https://www.michaeljfox.org/ Care Partner / Caregiver General Resources 


Alzheimer's Association https://www.alz.org/ 

Helpline: (800) 272-3900 


NYS Respite for the Caregiver Support Initiative - respite scholarships People with PD and care partners can utilize Alzheimer’s Assoc. resources 


Catholic Charities https://www.ccrcda.org 

Caregiver Support Program, 14 counties, 518 372 5667 


County and City Senior Services - contact local senior services offices

Locate an LSVT Certified Clinician

Tags:

Medical Professionals, Physical Therapy

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Voice and Movement Physical Therapy program

https://www.lsvtglobal.com/LSVTFindClinicians


Melvin Weinstein Parkinson’s Foundation

Tags:

Finance

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The Melvin Weinstein Parkinson’s Foundation purchases equipment and supplies necessary to maintain a safe and healthy environment for Parkinson’s patients. The Melvin Weinstein Parkinson’s Foundation has funded the cost of medications and health care equipment, supplies and services including shower chairs, ramps, electric wheelchairs and scooters, U-Step walkers and canes, computers, lift seats, elevated toilet seats, in-home care, car lifts, tracheotomy kits, speaker phones, tub transfer benches, adult diapers, grab bars for inside the home, and transportation to the doctor’s appointments. These simple provisions can have a profound impact on the day to day lives of people affected by Parkinson’s. If you have been diagnosed with Parkinson’s disease and would like to apply for assistance, please download and fill out the application here.. https://www.mwpf.org/

My Degeneration: A Journey Through Parkinson’s (Graphic Medicine)

Tags:

Inspiration, Humor, Book

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My Degeneration examines the current state of Parkinson’s care, including doctor/patient relations and the repercussions of a disease that, among other things, impairs movement, can rob patients of their ability to speak or write, degrades sufferers’ ability to deal with complexity, and interferes with the sense of balance. Readers learn what it’s like to undergo a dramatic, demanding, and audacious bit of high-tech brain surgery that can mysteriously restore much of a patient’s control over symptoms. But My Degeneration is more than a Parkinson’s memoir. Dunlap-Shohl gives the person newly diagnosed with Parkinson’s disease the information necessary to cope with it on a day-to-day basis. He chronicles the changes that life with the disease can bring to the way one sees the world and the way one is seen by the wider community. Dunlap-Shohl imparts a realistic basis for hope―hope not only to carry on, but to enjoy a decent quality of life. https://www.amazon.com/My-Degeneration-Journey-Parkinsons-Medicine/dp/0271071028

Natural remedies for constipation

Tags:

Diet

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Ingredients

  • 1 cup applesauce

  • 1 cup oat bran

  • 1/4 cup prune juice

  • Spices as desired (cinnamon, nutmeg, etc.)

Directions

Combine all ingredients in a bowl and mix well. Store in the freezer, or freeze premeasured amounts in an ice cube tray to use as needed

New York State Office for the Aging

Tags:

Aging, Finance, Local

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Address : 2 Empire State Plaza City : Albany State : NY

 Zip : 12223 

Website : https://aging.ny.gov/ 

Contact Email : NYSOFA@aging.ny.gov Office Phone : 844-697-6321 Information Phone : 800-342-9871 National Toll Free Phone : 800-342-9871 State Phone : 800-342-9871 Regional Phone : 800-342-9871 

Hours : 8:00 AM - 5:00 PM, EST Monday to Friday.

New York State Office of Children and Family Services Bureau of Adult Services

Tags:

Local, Legal Services

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New York State Office of Children and Family Services Bureau of Adult Services Address : 52 Washington Street Room 333 N City : Rensselaer State : NY Zip : 12144 Website : https://ocfs.ny.gov/main/psa/#APS 


Contact Email : info@ocfs.ny.gov 

Office Phone : 518- 473-7857 In

formation Phone : 844-697-3505 State Phone : 844-697-3505 

Languages : English Special Notes : This line will connect callers in New York state who need to report elder abuse, neglect, or exploitation to their county APS. Hours : 8:30 AM - 8:00 PM, EST Monday to Friday. https://ocfs.ny.gov/main/psa/#APS

Parkinson's Disease Care NY

Tags:

Medical Professionals

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Using telemedicine, our team can provide care to patients across New York State. 


Using telemedicine, our team can provide care to patients across New York State. As a patient in our Parkinson Disease Care New York Program (PDCNY), you will have access to a Parkinson’s specialist from the University of Rochester Medical Center in the comfort of your own home. All you need is internet access and a device that is capable of accessing the internet, such as a laptop, tablet, or smartphone. https://www.pdcny.org

Parkinson.org - about legal, financial plans

Tags:

Finance

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Slim Shaky - presentef WPC 2023

Tags:

Inspiration, Humor, Video

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Social Security Disability Insurance - APDA

Tags:

Finance, Disability

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Social Security Disability Insurance (SSDI) is a government disability benefit program that is administered by the Social Security Administration (SSA).  SSDI benefits are paid on a monthly basis to disabled workers who qualify under the SSA’s rules.  SSDI covers total disability, and does not cover partial disability or short-term disability.

Am I covered by SSDI? Not everyone is covered by SSDI. In addition to meeting the SSA’s definition of disability (discussed below), you must have worked in a job that was covered by Social Security and have accrued enough work credits. Click here to visit SSA.gov to read more about SSDI qualification requirements. https://www.apdaparkinson.org/resources-support/living-with-parkinsons-disease/disability/ssdi/


https://www.apdaparkinson.org/resources-support/living-with-parkinsons-disease/disability/ssdi/


Synapticure offers expert virtual neurology and behavioral health care in all 50 states

Tags:

Medical Professionals

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Synapticure offers expert virtual neurology and behavioral health care in all 50 states https://www.synapticure.com/

The Assistance Fund

Tags:

Finance

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Millions of people don’t have access to the medicines they need because they can’t afford them. We believe nothing should stand between you and your treatment.


Parkinsons Disease ACCEPTING WAITLIST PATIENTS TAF is currently accepting requests to join the enrollment waitlist for this program. Waitlists are administered on a calendar-year basis. At the end of each calendar year, waitlist applications expire. Patients still seeking assistance must join waitlists for the subsequent calendar year.

The Brain That Changes Itself - Documentary

Tags:

Neurology, Video

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https://youtu.be/VIdWFuuZaxw

The Brain's Way of Healing: Remarkable Discoveries and Recoveries from the Frontiers of Neuroplasticity

Tags:

Treatment

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The PAN Foundation

Tags:

Finance

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Everyone deserves equitable access to affordable healthcare, regardless of who they are. The PAN Foundation and our Board of Directors recognize the importance of ensuring that health equity is at the forefront of our mission and programs. We acknowledge that systemic inequities have prevented historically marginalized and underserved populations from accessing affordable and quality healthcare. Together, we must enact change. Providing financial assistance to patients who need it the most. https://www.panfoundation.org/disease-funds/parkinsons-disease/

The Surrey Neuroplasticity Clinic (PoNS Device)

Tags:

Treatment

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Trichloroethylene: An Invisible Cause of Parkinson’s Disease

Tags:

Research

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Umbrella of the Capital District

Tags:

Finance, Support

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Umbrella is a membership organization. For an annual fee, Umbrella members have access to a screened, skilled group of handy persons who provide a variety of services, including home repairs, housekeeping, lawn and gardening and shopping. https://theumbrella.org/

WPC Master classes - short videos 2023

Tags:

Research

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The World Parkinson Congress (WPC) 2023 Master Classes are short talks given by experts on topics they presented at WPC 2023. The classes cover a wide range of important and current topics in Parkinson's

Wellness Wednesday: Gene & Cell-Based Therapies in Parkinson's Disease

Tags:

Treatment

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Register for future Expert Briefing Webinars: https://secure3.convio.net/prkorg/sit... Helpful resources: - Parkinson’s Foundation Helpline: 1-800-4PD-INFO (1-800-473-4636) | Helpline@Parkinson.org | https://www.parkinson.org/resources-s... - Resources for those who are new to Parkinson’s disease: www.parkinson.org/living-with-parkinsons/new-to-parkinsons - Aware in Care hospital safety kit: https://www.parkinson.org/resources-s... - PD Health @ Home programs: https://www.parkinson.org/resources-s... - Información en español: https://www.parkinson.org/espanol Find us on social media! @ParkinsonDotOrg Facebook: https://www.facebook.com/parkinsondotorg Facebook en Español: https://www.facebook.com/ParkinsonEsp... Instagram: https://www.instagram.com/parkinsondo... Twitter: https://twitter.com/ParkinsonDotOrg LinkedIn: https://www.linkedin.com/company/park... TikTok: https://www.tiktok.com/@parkinsondotorg What is the Parkinson’s Foundation? The Parkinson’s Foundation makes life better for people with Parkinson’s disease (PD) by improving care and advancing research toward a cure. In everything we do, we build on the energy, experience and passion of our global Parkinson’s community. Learn more on our website: https://www.parkinson.org/

When Life Gives You Parkinson's Podcast with Larry Gifford

Tags:

Podcast

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Larry Gifford has Parkinson’s disease, and he wants to talk about it. When Life Gives You Parkinson’s chronicles Larry’s journey following diagnosis at age 45, but he knows he’s only part of the story. The podcast gives voice to the fascinating people that make up the Parkinson’s community and beyond — his family, his fellow people with Parkinson’s, care partners, advocates, researchers and healthcare providers. https://podcasts.apple.com/us/podcast/when-life-gives-you-parkinsons/id1404983468

World Parkinson' Congress

Tags:

Research

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The World Parkinson Coalition®provides the only international forum on Parkinson's disease that invites all stakeholders to learn about the latest scientific discoveries, medical practices, and care initiatives that improve the lives of people living with Parkinson's disease. By bringing the full Parkinson's community together, including people living with Parkinson's, we hope to expedite the discovery of new treatments for this devastating disease until a cure is found.
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