Please join us on Saturday, November 11, 2023 for the Give Parkinson's the Boot fundraising event at the Booth Western Art Museum (Booth). This very special event will be held in honor of Seth Hopkins, the Executive Director of the Booth and Parkinson’s battler.
Guests will enjoy a fun evening of great food and musical entertainment, including performances by singer-song writer, Tony Arata, best known for his song “The Dance,” a number-one U.S. country hit for Garth Brooks. This will be a celebratory evening with all funds raised ahead of the event to support the incredible work of the Parkinson's Foundation and the Booth Western Art Museum.
Parkinson’s Champions athletes raise funds and awareness for the Parkinson’s Foundation while competing in some of the world’s most popular races. Every step we take brings us closer to a future without Parkinson’s disease, because Parkinson’s isn’t a sprint, it’s a marathon.
Learn about new exercise research focusing on high vs moderate intensity, domains of exercise, and implementation strategies for people with Parkinson's.
Caregiving Tips: Helping a Loved One in the Later Stages of Parkinson’s
Navigating Parkinson’s disease (PD) can come with many surprises for the person living with the disease and those who love them. Since Parkinson’s progresses, symptoms often begin to complicate daily activities as a person progresses through the stages of PD.
Learning how to manage Parkinson’s is a constantly evolving learning curve that should always be modified to best suit both the needs of the person with Parkinson’s and the care partner. In this article, we highlight tips that can help your loved one adjust to these changes.
Daily Living
Moving
Movement changes are common in Parkinson’s and can become more difficult to manage in later PD stages. As a care partner, you can help your loved one move safely.
Check that your loved one’s feet are placed firmly underneath before standing. You may need to help with proper foot placement.
Remind your loved one to take big steps. People with PD often need “cues” to take long steps as automatic motions become more difficult to perform. Keep cues short and simple, for example by saying, “Big steps.”
Find an occupational therapist. These rehabilitative experts can help your loved one maintain independence and ways care partners can assist.
Freezing and Falls
People with Parkinson’s sometimes experience freezing episodes, which is the temporary and involuntary inability to move. Freezing is a significant cause of falls, as it creates a feeling like your feet are glued to the floor.
Avoid tight turns when possible. Instruct your loved one to make wider turns as freezing often happens while turning around in close quarters.
Make a plan. Consider how you’ll access help in the event of a fall, such as calling a neighbor or friend.
Travel and Transportation
Leaving the home can be difficult, but outings to a doctor’s office or physical therapist are often necessary. Consider methods that promote safety and decrease care partner stress.
Plan appointments around your loved one’s daily routine. Try to schedule appointments while the person with Parkinson’s is rested and PD medications are working well.
Maximize your time. If endurance allows, schedule a few appointments on the same day, especially if they are in the same clinic or medical complex.
Advanced Parkinson’s can cause difficulty with eating and drinking because of movement and swallowing problems. Making adjustments to mealtimes can help your loved one get the nutrition they need.
Serve foods that are easy to eat. Avoid tough, dry, or crumbly textures that might be difficult to swallow.
Focus on hydration. To ensure your loved one is drinking enough fluids, encourage sips of liquid between solid foods.
Caring for the Care Partner
Parkinson’s symptoms change over time, as will your role as a care partner. The most important thing to remember is that if you do not take care of yourself, you will not be able to take care of your loved one.
Caregiver burnout is a state of physical, emotional and mental exhaustion. Burnout can occur when caregivers don't get the help they need, or if they try to do more than they are able, physically or financially. Caregiver burnout symptoms can include:
Extreme fatigue unrelated to sleep
Unusual frustration and anger
Feeling “cloudy” or “foggy.” Often dismissed as age-related change, this can occur as a result of carrying too much responsibility and/or anxiety
These tips can help you navigate your own wellbeing as a care partner:
Manage stress. Identify what triggers your stress and find ways to control your emotions, like writing in a journal or going for a walk.
Accept help. Make a short list of specific tasks that typically help you care for your loved one, so family and friends know what they can do to help when you need a break.
When thinking changes are mild, these symptoms often do not impact everyday life. But as Parkinson’s advances, more profound changes in thinking can occur, including dementia. Dementia is when someone experiences problems with memory and thinking that are advanced and interfere with daily activities and quality of life.
To improve communication, try these strategies:
Ask one question at a time. Slowing down and asking one thing at a time can be helpful.
Give hints and cues. Use short and simple phrases to provide cues. Give a short hint if your loved one has difficulty finding a word or loses their train of thought.
Resist the urge to argue or correct. If your loved one is experiencing a delusion, try to find ways around the situation instead of contradicting them. It can be helpful to keep in mind ‘it is the disease making these accusations, not my loved one.’
Look for community resources BEFORE you need them. Explore resources in your community, such as the Area Agency on Aging.
The Parkinson’s Foundation is here for care partners. Explore all stages of the care partner journey and essential information and resources designed to help along the way.
In this special Wellness Wednesday, the Parkinson's Foundation will reveal our newest resource, a new and improved Hospital Safety Guide. During the program, we will review "My Five Parkinson's Care Needs," the resources built into the guide, and hear from community volunteers with both personal and professional experience navigating hospital visits.
Speakers
Richard Huckabee, Person with Parkinson's
Great Lakes Chapter
John Cox, Person with Parkinson's, retired paramedic firefighter
New York and New Jersey Chapter
Kelly Tran, Pharmacist
South Central Chapter
Heather Lester, Acute care physical therapist
Gulf Coast Chapter
Mary Ochoa, Inpatient speech-language pathologist, daughter of a person with Parkinson's
Heartland Chapter
There is no charge to attend, but registration is required.
Parkinson’s Champions athletes raise funds and awareness for the Parkinson’s Foundation while competing in some of the world’s most popular races. Every step we take brings us closer to a future without Parkinson’s disease, because Parkinson’s isn’t a sprint, it’s a marathon.
Learn about new exercise research focusing on high vs moderate intensity, domains of exercise, and implementation strategies for people with Parkinson's.
Parkinson’s Revolution will take place across the country on February 22, 2025. Join us in-person at your studio location or virtually for a high energy ride that generates funds and awareness for Parkinson’s disease (PD).
Come ride for a reason and then celebrate the power of movement at our post-ride happy hour the Sweat Social! Friends, family, and members of the PD community are welcome to enjoy a short program and light refreshments immediately following the ride.
Parkinson’s Champions athletes raise funds and awareness for the Parkinson’s Foundation while competing in some of the world’s most popular races. Every step we take brings us closer to a future without Parkinson’s disease, because Parkinson’s isn’t a sprint, it’s a marathon.
Learn about new exercise research focusing on high vs moderate intensity, domains of exercise, and implementation strategies for people with Parkinson's.
RIDE 1: 11:00 am I RIDE 2: 12:00 pm | RIDE 3: 1:00 pm
Parkinson’s Revolution will take place across the country on February 28, 2026. Join us in-person at your studio location or virtually for a high energy ride that generates funds and awareness for Parkinson’s disease (PD).
Come ride for a reason and then celebrate the power of movement at our post-ride happy hour the Sweat Social! Friends, family, and members of the PD community are welcome to enjoy a short program and light refreshments immediately following the ride.
Parkinson’s Champions athletes raise funds and awareness for the Parkinson’s Foundation while competing in some of the world’s most popular races. Every step we take brings us closer to a future without Parkinson’s disease, because Parkinson’s isn’t a sprint, it’s a marathon.
Learn about new exercise research focusing on high vs moderate intensity, domains of exercise, and implementation strategies for people with Parkinson's.
Parkinson’s Revolution will take place across the country on February 24, 2024. Join us in-person at your studio location or virtually for a high energy ride that generates funds and awareness for Parkinson’s disease (PD)
Come ride for a reason and then celebrate the power of movement at our post-ride happy hour the Sweat Social! Friends, family, and members of the PD community are welcome to enjoy a short program and light refreshments immediately following the ride.
Parkinson’s Champions athletes raise funds and awareness for the Parkinson’s Foundation while competing in some of the world’s most popular races. Every step we take brings us closer to a future without Parkinson’s disease, because Parkinson’s isn’t a sprint, it’s a marathon.
Learn about new exercise research focusing on high vs moderate intensity, domains of exercise, and implementation strategies for people with Parkinson's.
Parkinson’s Revolution will take place across the country on February 24, 2024. Join us in-person at your studio location or virtually for a high energy ride that generates funds and awareness for Parkinson’s disease (PD).
Come ride for a reason and then celebrate the power of movement at our post-ride happy hour the Sweat Social! Friends, family, and members of the PD community are welcome to enjoy a short program and light refreshments immediately following the ride.
Parkinson’s Champions athletes raise funds and awareness for the Parkinson’s Foundation while competing in some of the world’s most popular races. Every step we take brings us closer to a future without Parkinson’s disease, because Parkinson’s isn’t a sprint, it’s a marathon.
Learn about new exercise research focusing on high vs moderate intensity, domains of exercise, and implementation strategies for people with Parkinson's.
In 2019, my dad, Mark Spence, told us news that no amount of preparedness could brace for — he had a neurodegenerative disease by the name of Parkinson’s. This was a bittersweet moment — finally, we had an answer. Unfortunately, that answer was the beginning of an unceasing fight. A lifelong commitment to which my father had no choice except to partake in.
Seventeen at the time, I didn’t see the gravity of the situation. What I did see, however, was an absence of fear in my parents’ resolve. Uncertainty? Sure. Confusion? Certainly. Fear? Hopelessness? Absolutely not.
In the years that have followed, my parents have made sacrifices, changed their life plans, and been through an uncertain valley that is hard to imagine. Yet, they never changed their resolve. Certainly, sacrifices were nothing new — they did raise my sisters and me after all.
Challenges and obstacles were not a phenomenon unique to this new era of their lives. They are both incredibly hard workers who know the meaning of persistence. Regardless, their strength through it all became a beacon for my adolescent self. Twenty-one years old now, I have decided it’s my turn to be strong for my dad.
For years, I wanted to make a difference in Parkinson’s research and awareness, but simply could not think of how to go about that. On June 11, however, I was struck with an idea. While driving home from Athens, GA, I had been mulling over training for an endurance event, alongside my studies, when it hit me — why not combine my love for endurance events with my desire to help the PD community?
Honestly, this was a convicting moment. I knew I had a valid idea, but the process would inevitably require putting immense pressure on myself — to complete such a challenging event with so many eyes on me was terrifying. It was at this moment, however, that the strength of my parents was exactly the beacon I needed it to be. I can do it. I must do it.
The next day, I emailed the Parkinson’s Foundation about my idea. Not only did the Foundation support my idea, but they could also not have been more helpful in connecting me to the right people, answering all my questions, and helping me lay the groundwork for what the fundraiser has become. Throughout the past few months, I have made wonderful connections with amazing people within the PD community, and I am so excited to continue pushing forward as a Parkinson’s Champion.
“No one knew what to do,” said Karen Weiss-Fisher, MD, recalling her father’s Parkinson’s disease (PD) diagnosis in 1990. Dr. Weiss-Fisher and her mother, who would eventually be her father’s primary care partner, were at a loss as to how to help him manage the disease. Their lives were about to change, and they did not have the tools to deal with the challenges ahead.
“My parents did not have community support,” said Dr. Weiss-Fisher. “My father was a fully-functioning, active and engaging dentist, approaching his retirement, which among other activities, included playing golf four days a week. His passion for golf was evident to all who knew him, as he had been a referee for the Ryder’s Cup in Palm Beach Gardens, Florida in 1983. Unfortunately, he physically deteriorated over the ensuing 13 years until he was unable to walk and was confined to a wheelchair. Disappointed and frustrated, he finally acquiesced and learned to enjoy golf by watching the PGA when televised.”
The uneasy and helpless feeling from her father’s diagnosis stayed with Dr. Weiss-Fisher. Several years after her father passed away, she learned about the Parkinson’s Foundation from a friend who shared a post on social media about Moving Day, A Walk for Parkinson’s. She reached out for more information and connected with the Foundation. With her personal experience caring for her dad, and her professional experience as a physician, Dr. Weiss-Fisher decided to volunteer her time to help others live a better life with PD than her dad. She became the first President of the Foundation’s Southwest Chapter, which included participating in Moving Day Phoenix and Parkinson’s Revolution.
“I know my parents would have benefitted from today’s Parkinson’s community. I think the public is fearful of neurodegenerative disease primarily because of its unpredictable course. Today, thanks to organizations like the Parkinson’s Foundation, there are more resources that offer better methods to navigate the effects and symptoms of this degenerative disease.”
Recently, Dr. Weiss-Fisher expanded her support when she and her husband made a generous gift to the Reach Further campaign, our four-year fundraising initiative to invest an additional $30 million to accelerate progress on Parkinson’s disease research, improve care and treatments and increase access to quality of life programs.
“I am enthusiastic and passionate about the Reach Further campaign” she said. “The campaign’s dedication to advancing treatment, especially through the Foundation’s genetics initiative, PD GENEration: Mapping the Future of Parkinson’s Disease, provides new knowledge that is on the cutting edge of medicine. We are learning more every day about genetics and its role in the expression of Parkinson’s disease. I am optimistic that clinical trials will lead to new treatments and, one day, a cure.”
Dr. Weiss-Fisher supports the Parkinson’s Foundation and hopes to encourage others to join her in supporting this important work. She is grateful people with PD today can find support through the Foundation’s Centers of Excellence, Helpline, online resources and more.
“Resources like the Foundation’s Hospital Safety Guide would have alleviated many of the difficulties my parents encountered as they navigated my dad’s increasing medical care needs and confusing hospitalizations,” she said. “The Parkinson’s Foundation mission to improve the lives of people with Parkinson’s, their care partners and the whole Parkinson’s community is inspiring and important. The Foundation and the Reach Further campaign continue to advancing care and research, bringing us closer to a cure.”
Join us to Reach Further to make life better for people with Parkinson’s at Parkinson.org/Reach.
Learn the basics of clinical research as well as the benefits of participating. Know what to expect and how to get involved in Parkinson’s research. You will also hear about how people with Parkinson’s and care partners are being involved in the research design process.
Speakers
Jim Beck, PhD
Senior Vice President, Chief Scientific Officer
Parkinson's Foundation
Evelyn Stevens, MPH
Director, Community Engagement
Parkinson's Foundation
We will also hear from a Parkinson's Foundation Research Advocate
There is no charge to attend, but registration is required.
Parkinson’s Champions athletes raise funds and awareness for the Parkinson’s Foundation while competing in some of the world’s most popular races. Every step we take brings us closer to a future without Parkinson’s disease, because Parkinson’s isn’t a sprint, it’s a marathon.
Learn about new exercise research focusing on high vs moderate intensity, domains of exercise, and implementation strategies for people with Parkinson's.
