Parkinson's Foundation: The PD Solo Network - Living Alone While Living with PD
There are two sessions available: You are welcome to choose one or attend both.
– 1 p.m. to 2:30 p.m. ET
– 7:30 p.m. to 9 p.m. ET
Please note: These meetings are intended for individuals diagnosed with Parkinson’s disease who live alone, by choice or circumstance – only. If this is not your situation, please contact the Parkinson’s Foundation Helpline to receive information about resources that best meet your needs. Call the Helpline at 1-800-473-4636 (1-800-4PD-INFO) or helpline@parkinson.org.
What is the PD Solo Network:
A virtual network for people living with Parkinson's disease (PD) who live alone, by choice or circumstance. The purpose of this group is to create a community of support for those living without a care partner. People living with PD are the experts about what challenges, changes and accommodations are needed on a daily basis. This network will provide a place to share ideas, concerns, brainstorm strategies, suggestions, resources & to build relationships.
The Parkinson's Foundation is providing the initial funding and support to kick start this network. It will most likely become a very strong network that will operate independently although the Parkinson's Foundation will always be an entity of support & information for the participants.
Upcoming Meeting Dates:
March 11, 2025
April 8, 2025
May 13, 2025
June 10, 2025
July 8, 2025
August 12, 2025
September 9, 2025
October 14, 2025
November 11, 2025
December 9, 2025
There is no charge to attend, but registration is required in order to receive the Zoom link.
In this webinar, we’ll explore the latest evidence-based treatments available to veterans living with Parkinson’s, including emerging therapies and clinical trial opportunities.
Parkinson's Foundation: The PD Solo Network - Living Alone While Living with PD
There are two sessions available: You are welcome to choose one or attend both.
– 1 p.m. to 2:30 p.m. ET
– 7:30 p.m. to 9 p.m. ET
Please note: These meetings are intended for individuals diagnosed with Parkinson’s disease who live alone, by choice or circumstance – only. If this is not your situation, please contact the Parkinson’s Foundation Helpline to receive information about resources that best meet your needs. Call the Helpline at 1-800-473-4636 (1-800-4PD-INFO) or helpline@parkinson.org.
What is the PD Solo Network:
A virtual network for people living with Parkinson's disease (PD) who live alone, by choice or circumstance. The purpose of this group is to create a community of support for those living without a care partner. People living with PD are the experts about what challenges, changes and accommodations are needed on a daily basis. This network will provide a place to share ideas, concerns, brainstorm strategies, suggestions, resources & to build relationships.
The Parkinson's Foundation is providing the initial funding and support to kick start this network. It will most likely become a very strong network that will operate independently although the Parkinson's Foundation will always be an entity of support & information for the participants.
Upcoming Meeting Dates:
March 11, 2025
April 8, 2025
May 13, 2025
June 10, 2025
July 8, 2025
August 12, 2025
September 9, 2025
October 14, 2025
November 11, 2025
December 9, 2025
There is no charge to attend, but registration is required in order to receive the Zoom link.
In this webinar, we’ll explore the latest evidence-based treatments available to veterans living with Parkinson’s, including emerging therapies and clinical trial opportunities.
Parkinson's Foundation: The PD Solo Network - Living Alone While Living with PD
There are two sessions available: You are welcome to choose one or attend both.
– 1 p.m. to 2:30 p.m. ET
– 7:30 p.m. to 9 p.m. ET
Please note: These meetings are intended for individuals diagnosed with Parkinson’s disease who live alone, by choice or circumstance – only. If this is not your situation, please contact the Parkinson’s Foundation Helpline to receive information about resources that best meet your needs. Call the Helpline at 1-800-473-4636 (1-800-4PD-INFO) or helpline@parkinson.org.
What is the PD Solo Network:
A virtual network for people living with Parkinson's disease (PD) who live alone, by choice or circumstance. The purpose of this group is to create a community of support for those living without a care partner. People living with PD are the experts about what challenges, changes and accommodations are needed on a daily basis. This network will provide a place to share ideas, concerns, brainstorm strategies, suggestions, resources & to build relationships.
The Parkinson's Foundation is providing the initial funding and support to kick start this network. It will most likely become a very strong network that will operate independently although the Parkinson's Foundation will always be an entity of support & information for the participants.
Upcoming Meeting Dates:
March 11, 2025
April 8, 2025
May 13, 2025
June 10, 2025
July 8, 2025
August 12, 2025
September 9, 2025
October 14, 2025
November 11, 2025
December 9, 2025
There is no charge to attend, but registration is required in order to receive the Zoom link.
In this webinar, we’ll explore the latest evidence-based treatments available to veterans living with Parkinson’s, including emerging therapies and clinical trial opportunities.
Living with Parkinson’s can be challenging, but there are many things you can do to maintain and improve your quality of life. This program will provide you with information to help you find the balance between a proactive approach and wondering what lies ahead.
Expert Speakers
Henry P. Moore, MD
Director of Movement Disorders at Palm Beach County
University of Miami-Miller School of Medicine
A Parkinson’s Foundation Center of Excellence
Daniel Kantor, MD, FAAN
Vice President, Clinical Research & Development | Gateway Institute for Brain Research
Tarannum Khan, M.D., CPE, FAAN, FANA
Ambulatory Director (Weston Neurology)
Staff Neurologist, Movement Disorders
Pauline Braathen Neuroscience Institute
Learn more about the expert speakers and panelists by clicking here.
Fitness Demonstration: Allie and Mark Barker, RAW Kickboxing and Fitness
Event Volunteers Needed! Service hours and lunch are provided. To sign up and learn more, visit: Volunteer sign-up here
For in-person attendees: Check-in and Resource Fair start at 9 a.m. Lunch will be served.
Unloading/Room Location: The program is located at the Main Entrance, Building B. Parking and drop-off is in front of the building. For the entrance to our parking lot, use this address: 500 NE 2nd St., Fort Lauderdale, FL 33301
There is no charge to attend, but registration is required since lunch will be served. This program is open to people with Parkinson's, their family, friends and the community.
In this webinar, we’ll explore the latest evidence-based treatments available to veterans living with Parkinson’s, including emerging therapies and clinical trial opportunities.
Brain Inflammation Linked to Dementia Risk in Parkinson's Disease
Parkinson's disease (PD) is known primarily for its movement-related symptoms, but it can also lead to dementia, a devastating decline in cognitive abilities. Nearly half of people diagnosed with Parkinson’s develop dementia within 10 years of their Parkinson’s diagnosis. Researchers are now looking closer at what happens in the brain early in the disease to understand why some people with Parkinson’s develop dementia while others don't.
A new study, published in Brain, focused on two key factors: brain inflammation (also called neuroinflammation) and the buildup of a protein called tau. Neuroinflammation, an immune response within the brain that is largely protective when working correctly, can release harmful chemicals that can damage or kill neurons when overactive, impairing communication between brain cells essential for cognitive processes. Tau protein, when misfolded and accumulated, forms tangles that disrupt how brain cells transport nutrients, preventing them from functioning properly and eventually leading to cell death.
Both processes can contribute to the progressive loss of brain cells and synaptic connections and may ultimately lead to the cognitive decline characteristic of dementia. However, it was not known to what degree these factors were linked to dementia risk in people with early-stage Parkinson’s.
Study Results
The study enrolled 31 people recently diagnosed with Parkinson’s (the average time since diagnosis was one year) and 19 people of similar ages that did not have Parkinson’s. Using specialized brain scans (PET scans), researchers examined brain inflammation and tau accumulation in each participant. In addition, levels of body-wide markers of inflammation and tau were evaluated through a blood test.
The researchers also evaluated the participants’ potential risk for dementia by assessing visual-motor skills, word recall and results from a genetic test (MAPT genotype) that is linked to dementia. Based on these test results, they divided participants into two groups — those at higher risk or lower risk for dementia.
The study found that people at higher risk for dementia showed significantly more brain inflammation in several brain regions compared to both those at lower risk and people without PD. This inflammation was also linked to poorer performance on a cognitive test (ACE-III). Additionally, the overall level of neuroinflammation correlated with the amount of body-wide markers of inflammation seen in the blood test. This suggests that a high level of inflammatory markers detected in the blood may be a sign of increased neuroinflammation.
Interestingly, while tau protein buildup was observed, it didn't seem to directly relate to cognitive decline. However, the study did find that more brain inflammation was linked to tau accumulation, particularly in the high-risk group.
People with Parkinson's scored lower on a cognitive test (ACE-III) compared to those without Parkinson's. Even within the Parkinson's group, those at higher risk for dementia scored lower on the same test than those at lower risk. Interestingly, the group at higher dementia risk had been diagnosed with Parkinson's for a slightly shorter time but showed more severe Parkinson's symptoms. There was no link between higher risk of dementia and age, gender, or the amount of Parkinson's medication someone took.
Overall, these findings suggest that brain inflammation is evident in the early stages of Parkinson's and may be a key factor in determining who develops dementia. On the other hand, accumulation of tau protein in early-stage Parkinson’s does not appear to correlate with dementia risk.
Highlights
The study enrolled 31 people who were recently diagnosed with Parkinson’s and 19 people of similar ages that did not have Parkinson’s. People with Parkinson’s were grouped into those with high- and low-risk for dementia.
People with Parkinson's scored lower on a cognitive test (ACE-III) compared to those without Parkinson's.
Using specialized brain scans (PET scans) and markers, researchers examined whether participants showed signs of brain inflammation and tau protein accumulation
People at higher risk for dementia showed significantly more brain inflammation in several brain regions compared to those at lower risk and people without PD.
Brain inflammation was also linked to poorer performance on a cognitive test (ACE-III).
What does this mean?
This study indicates that brain inflammation may be an early contributor to dementia in Parkinson’s disease. As a result, neuroinflammation could potentially be a useful biomarker to identify people with Parkinson’s who are at risk for dementia. This opens the door to potential treatments that target brain inflammation, possibly preventing or slowing the progression of dementia in people with Parkinson's disease. There are several anti-inflammatory treatments already licensed to treat other conditions, which could potentially be repurposed to help treat PD-related dementia. However, it could take many years before a treatment strategy to alleviate Parkinson’s-linked dementia becomes widely available.
What do these findings mean to the people with PD right now?
This study further solidifies the link between the brain inflammation people with PD experience and the risk for dementia. Parkinson’s disease dementia symptoms include potential thinking, memory and behavior changes — these symptoms can be wide-ranging. If you notice symptoms, talk to your movement disorders specialist about dementia concerns. While there is no way to stop the disease’s progression, a doctor can help manage the symptoms.
The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more about the topics in this article through our below resources, or by calling our free Helpline at 1-800-4PD-INFO (1-800-473-4636) for answers to your questions.
Parkinson’s disease (PD) usually progresses slowly over time. As needs increase, different types of care can help support daily life.
When is it time to get more help?
Talk regularly with loved ones and your care team. Share what is going well, what is becoming more difficult and any safety concerns. You may need more help if your symptoms begin to affect safety or daily activities, or if care partners feel overwhelmed. The goal is to match your needs with the right amount of care.
Signs You May Need More Help:
Staying active or social is difficult
Treatments are confusing or hard to keep up with
Daily tasks like getting out of bed or bathing are no longer safe alone
You need help getting to appointments or errands
The care partner feels worn down or has health concerns
There are safety concerns, such as falls, getting lost or medication mix-ups
It's hard to move safely around your home
What care options are available?
Support can take place in different settings as needs change. The tables below show services that support living at home and housing with added support.
Home-Based Support
Care partners, Family & Friends — May help with household tasks, personal care, medications, driving and support
Meal & Transportation Services — Meal or grocery delivery, rides to appointments, shopping or social activities
Personal Care Aide, Homemaker & Companion Care — Help with errands, housekeeping, daily living activities like dressing and bathing, medication reminders, meal preparation and companionship
Short-Term Skilled Care — Nursing care or therapy at home for a medical need, often for a few weeks after an illness or injury
Adult Day Programs — Supervised daytime programs with meals, activities and care outside the home
Respite Care in Residential Settings — Short stays in a care facility for temporary care
Housing Options with Added Support
Independent Living — Private housing with meals, activities and housekeeping
Assisted Living — Housing with help for daily tasks, medications, meals and activities
Residential Care Homes — Small home settings with 24/7 care staff and on-call nursing
Skilled Nursing — 24/7 nursing care for serious medical needs or rehabilitation
Continuing Care Retirement Community — A range of living options with increasing levels of care in one place
Memory Care — Support for memory and thinking changes, often within assisted living or skilled nursing
Parkinson's Care
Look for care teams with Parkinson's experience. Ask about staff training, services and support for daily needs.
The Parkinson’s Foundation Community Partners in Parkinson’s Care program trains care staff to support people living with PD. Contact the Helpline for participating organizations and to learn about other local resources.
Paying for Care
Medicare and private insurance do not cover many long-term care costs. Medicaid, Veterans benefits or long-term care insurance may help. An elder law attorney or financial planner can help you understand your options. To find a certified elder law attorney, visit Naela.org or contact your local Area Agency on Aging.
Tips for Finding Local Care Resources
Ask your support network for recommendations, including your family, friends, support group and care team.
Research care options. Check references and reviews. Arrange tours or interviews and bring someone with you.
Rely on trusted organizations, like the Parkinson's Foundation and your local Area Agency on Aging.
After many years of good symptom management, Parkinson’s disease may become more challenging. Learn how Parkinson’s symptoms may change over time and new strategies available for managing them.
Expert Speaker:
Enrique Urrea-Mendoza, MD Neurologist | Movement Disorders Specialist
Assistant Professor
Department of Clinical Sciences
FSU Health | FSU College of Medicine
Lunch will be served.
There is no charge to attend, but registration is required. This program is open to people with Parkinson's, their families, friends, and the community.
This program is hosted by the Parkinson’s Foundation Gulf Coast Chapter, in collaboration with Southeast Health.
In this webinar, we’ll explore the latest evidence-based treatments available to veterans living with Parkinson’s, including emerging therapies and clinical trial opportunities.
Join us for a webinar this month to Celebrate Movement in the PNW, with our guests Dirty Freehub! They will be sharing information about their All Access program, an amazing resource for those with PD looking to get out and ride their bike in Oregon this summer. We'll also share upcoming events in region and ways to create your own movement-based event. See you on April 23!
In this webinar, we’ll explore the latest evidence-based treatments available to veterans living with Parkinson’s, including emerging therapies and clinical trial opportunities.
Get out and move with your community! Every dollar raised supports the Parkinson’s Foundation mission to make life better for people affected by Parkinson’s disease (PD). At Moving Day Community Walks across the country, we’re fighting Parkinson’s and celebrating movement — proven to help manage Parkinson’s symptoms — and we’re doing it together. The Moving Day Community Walk Program is a complement to the Parkinson’s Foundation Moving Day, A Walk for Parkinson’s. These walks are family-friendly and help the Foundation make life better for people with PD.
The Community Walk program offers volunteers an opportunity to organize a walk in their own community that does not have a Moving Day event. The program leverages the personal experiences and community leadership of passionate volunteers to promote Parkinson’s awareness and raise funds for the Parkinson’s Foundation.
In this webinar, we’ll explore the latest evidence-based treatments available to veterans living with Parkinson’s, including emerging therapies and clinical trial opportunities.
It’s February 25, 2020 and I’m 38 years old, married with three kids under 5. I finished the NYC Marathon three years ago and since then my left leg and arm slowly stopped swinging while I ran or walked. I’ve seen every specialist under the sun over the past three years and if someone tells me I should “try yoga” again my head might explode. I was finally able to make an appointment with a movement disorders specialist, a neurologist with specialized training in Parkinson’s disease (PD) and other movement disorders.
My neurologist calls me back into the exam room and asks me several questions. He nods his head up and down knowingly. Then he says, “let’s see you walk some.” I get halfway down the hallway, and I hear “that’s good, turnaround and come back.” As he ushers me into the exam room again, he says “let’s sit down.” Judging by the expression on his face I think to myself this doesn’t look good. “I’m sorry to tell you this but you have early-onset Parkinson’s disease.”
At that point I knew very little about Parkinson’s disease other than that I’d heard Michael J Fox has it. What about my family? My kids? What about my career? What about my mortgage? And a hundred other questions start flying through my head. The world around me is closing in and there’s not a whole lot I can do about it.
Back in the exam room and I gather the courage to ask, “am I going to die from this?” My doctor looks up at me and says “let’s take this one day at a time. I’m going to prescribe you medicine and let’s get you running again.” Running has always been my escape and my anchor in tough times. “Let’s get you running again” was music to my ears.
Since then, I’ve learned an awful lot about Parkinson’s and how it affects me as well as others. I’ve made some amazing friends, and I continue to live my life to the fullest. Since my diagnosis I’ve toed the line at two 200+ mile races and finished several marathons and ultra-marathons. I’m the head coach of my son’s football team and cheer on my daughters at all their sporting events. I’ve started a non-profit organization to further the research and development of new medicines, techniques and treatments that support patients diagnosed with early-onset Parkinson’s.
I’m as active as I’ve ever been and what I want others to know, especially those newly diagnosed with Parkinson’s disease, that you are not your diagnosis and you can live an amazingly fulfilling life.
This April, in honor of Parkinson’s Awareness Month I will be running the Boston Marathon as a Parkinson’s Champion as part of Team Abbott and I couldn’t be more excited. Hope to see you on the racecourse!
Run as a Parkinson’s Champion today! Help raise funds and awareness for the Parkinson’s Foundation while competing in some of the world’s most popular endurance events.
