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Check-in & Resource Fair* begins at 11:00 a.m. and the program starts at 12:00 p.m.
There are many non-motor challenges associated with Parkinson’s disease that may not always be easy to discuss. With a focus on mood, sleep disturbances, and fatigue, this program will provide strategies for coping and talking about it with healthcare providers and/or loved ones.
*The Resource Fair will feature local Community Partners that provide services and support for the Parkinson’s Community.
Speakers
Kathrin LaFaver, MD
Neurologist
Department of Neurology
Albany Med Health System
Paul Glovinsky, PhD, FAASM
Former Clinical Director
St. Peter’s Sleep Center, Albany, NY
Private Practice, New York, NY
There is no charge to attend, but registration is required. This program is open to people with Parkinson's, their family, friends, and the community.
Practical strategies, therapeutic approaches, and supportive tools will be shared to help people with Parkinson’s and care partners feel more confident and empowered in daily communication and eating.
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.
Ceceilia LaValle’s family and friends knew her as the life of any party — an entrepreneur, a great artist, a wonderful cook, a devoted sister, wife and mother.
“She was an integral figure in our family and had so much enthusiasm for life,” said Neilia LaValle, one of Ceceilia’s younger sisters.
When Cecelia was diagnosed with Parkinson’s disease (PD) in the early 1990s after noticing rigidity in her left arm, she leaned into her passions and was determined to live life to the fullest as she bravely fought PD.
She had already been diagnosed with PD by the time she met her fourth husband, and ultimate care partner, Jimmie Amox, while they were enrolled as graduate students at Louisiana Tech University. Though she made several careers for herself, art always drew her back in.
“Her art really blossomed during her graduate studies,” said Deanna LaValle High, one of Ceceilia’s younger sisters. “I would say that Cecelia was at the peak of her artistic capability and showing every sign of continuing to grow as an artist, when she was diagnosed with Parkinson's. She continued to make art until the disease finally robbed her of that ability.”
Cecelia’s family rallied around her, researching PD and supporting her as she explored treatment options. Jimmie said she was determined to continue living her life and was invested in finding PD care that allowed her to do so. She consulted with several doctors around the world and tried many treatments to alleviate her symptoms, including the hallucinations.
“I lost my mom long before she passed away, due to the hallucinations,” said Michele Smith, Cecelia’s daughter. “It was difficult for our family to watch her deteriorate.”
Before Cecelia passed away in 2016, Neilia spoke to a friend who had recently started her own non-profit to raise money for breast cancer, which inspired Neilia to do the same and support a cause near to her heart — Parkinson’s disease.
“Seeing what my sister was going through made me want to help find a cure for Parkinson’s,” Neilia said. “I don’t want other people to go through what my family and my sister went through.”
Neilia uses her foundation to support organizations like the Parkinson’s Foundation that are working to find a cure for PD. She’s proud to honor her sister and to continue her fight for a cure.
“It seems like more and more people are directly impacted by Parkinson’s. We need to get more people actively involved in supporting organizations that are looking for a cure, like the Parkinson’s Foundation. There is hope, and that is what we need to use to keep us going.”
- Neilia LaValle
“Many of the current treatments and resources available now were not available when Cecelia was diagnosed,” said Jimmie. “Organizations like the Parkinson’s Foundation have changed that. If I could offer advice to those newly diagnosed with Parkinson's disease or people entering the Parkinson's care partner world, I would say that the first thing you need in your toolbox is love for each other. Grow that love every day. Get to truly know each other and constantly question reactions to new experiences with this disease.”
“If you are new to Parkinson’s, take stock of yourself and your priorities,” said Deanna. “And, if you are inclined to live life fully like Cecelia, do it, do it, do it. As best you can.”
With your support, we can invest in research that will help us find new treatments and a cure for Parkinson’s in years, not decades. To make a donation, visit Parkinson.org/Donate.
My name is DawnElla Rust, and basketball was my first love. Though not a top-tier player like Caitlin Clark, I earned a scholarship for three years in college. I enjoyed training and knew my body well. After basketball, I stayed active with running, walking, weightlifting, hiking and rafting, while earning a Doctor of Education in Health Promotions and working as a university professor. My third love was teaching health in higher education, with my second love being my marriage in 1990.
In 2010, I became interim chair of my department, a role I hated and which brought significant stress. Notable stress symptoms included my right arm not swinging when I walked, difficulty fastening seat belts, lack of blinking, hand tremors, an unexplained Achilles issue and increased anxiety. The body that I knew well was not working. Collectively, these symptoms led to a Parkinson's disease (PD) diagnosis, which shocked me.
I knew nothing about Parkinson’s. Naively I even told a friend “Give me a couple of weeks and I will have this Parkinson’s thing figured out.” Initially, I believed I could quickly manage Parkinson's, but 15 years later, “I’m still figuring it out.”
I am better today thanks to invaluable resources from the Parkinson’s Foundation. One valuable resource is their trained professionals who offer phone support, especially on difficult days — and there are difficult days. I often use these Parkinson’s Foundation resources in an educational approach to openly discuss my diagnosis, because a teacher always teaches!
We’re here for you.
For answers to your Parkinson’s questions, call or email our Helpline. 1-800-4PD-INFO (1-800-473-4636)
As a university health professor, I was able to educate others on managing chronic diseases such as Parkinson’s disease. I taught a course on Social and Emotional Health, emphasizing the impact of social connections and emotions on physical well-being. The Parkinson’s Foundation's mission, "Better Lives. Together.", aligns with the principles I have taught and lived by.
Teaching concepts related to happiness, gratitude, humor and awe has empowered me to maintain a positive quality of life despite my diagnosis. Student feedback indicated that my personal narrative significantly contributed to their understanding of living well.
The health philosophy I advocate for is one where individuals strive to live well in the face of illness, disability and trauma.
Life inevitably presents challenges, such as the loss of loved ones, catastrophic events and diagnoses like Parkinson’s. I retired in 2024 after 30 years in higher education due to non-movement symptoms affecting my teaching, but I continue to educate and live a fulfilling life in retirement.
Early-Onset Parkinson’s Disease (EOPD), also referred to as young-onset Parkinson’s, occurs in people under the age of 50 and affects about 4% of the one million people living with Parkinson’s in the U.S. While the symptomsare similar to late or typical-onset PD, such as tremors, stiffness and slowed movement, EOPD can progress more slowly and involve different forms of treatment.
James Beck, PhD, Chief Scientific Officer of the Parkinson’s Foundation discusses the unique challenges that people living with EOPD often face, from balancing careers and family responsibilities to navigating long-term planning.
Dr. Beck also highlights how EOPD differs from typical or late-onset Parkinson’s and offers practical strategies to help people with EOPD maintain a high quality of life through tailored treatment, regular exercise and a strong support network.
Check-in & Resource Fair* begins at 10 a.m. and the program starts at 11:00 a.m.
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.
*The Resource Fair will feature local Community Partners that provide services and support for the Parkinson’s Community.
Speakers
Benjamin Dorfman, MD
Hartford Healthcare Medical Center- Chase Family Movement Disorders
Amanda Horn, LCSW
Licensed Clinical Social Work Lead Movement Disorders
Parkinson’s Foundation Center Coordinator
Hartford Healthcare, Chase Family Movement Disorders Center
On-site parking is available. Lunch will be served.
10:00 a.m. Check-in / Resource Fair*
11:00 a.m. Program Begins
2:30 p.m. Program Ends
*The Resource Fair will feature local community partners that provide services and support for the Parkinson’s Community.
Practical strategies, therapeutic approaches, and supportive tools will be shared to help people with Parkinson’s and care partners feel more confident and empowered in daily communication and eating.
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.
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Join the Parkinson's Foundation Great Lakes Chapter for Navigating Advancing Needs!
Check-in starts at 12:00 p.m. and the program starts at 1:00 p.m.
Navigating Parkinson’s disease involves looking ahead, learning and adjusting as symptoms and needs change. This program addresses some of the challenges of advancing PD and explores strategies to prepare for the future, including how to evolve your care plans and treatments throughout progression so you can live your best life with PD now.
Speakers
Jennifer Saigal, MD
University of Michigan Neurology Clinic
Erin Cecchi, LMSW
University of Michigan Movement Disorders Program
Kristy M. Brown, LMT
University of Michigan Tai Chi Fall Prevention at the Turner Senior Resource Center
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.
Check-in and Resource Fair 12:00 p.m.
Program starts 1:00 p.m. Program ends 3:00 p.m.
Practical strategies, therapeutic approaches, and supportive tools will be shared to help people with Parkinson’s and care partners feel more confident and empowered in daily communication and eating.
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.
This program offers an introduction and basic overview of Parkinson’s disease (PD). PD varies from person to person and changes over time. Discover its causes, common symptoms, available treatments and effective strategies for managing them. Learn practical daily living tips to empower you to take charge of your health and to navigate the challenges of living with PD.
Speaker
Kristen Matulis, DNP, AGNP-C
Movement Disorders, Nurse Practitioner
Department of Neurology
UT Health Science Center at San Antonio
There is no charge to attend, but registration is required. This program is open to people with Parkinson's, their family, friends, and the community.
Practical strategies, therapeutic approaches, and supportive tools will be shared to help people with Parkinson’s and care partners feel more confident and empowered in daily communication and eating.
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.
How to Address Sleep Disorders in Parkinson’s for Sounder Slumber
Good sleep is not just important for brain function – it is essential for whole-body well-being. Sleep fuels heart and gut health, immune function and more. Sleep disturbances can be common in Parkinson’s disease (PD), but getting a good night’s sleep is possible. Discover how to identify and manage symptoms of insomnia, restless leg syndrome (RLS) and REM sleep behavior disorder (RBD).
The following article is based on a Parkinson’s Foundation Expert Briefing about managing sleep disturbances, hosted by Roneil G. Malkani, MD, associate professor, Northwestern University Feinberg School of Medicine, and neurologist, Northwestern Memorial Hospital, a Parkinson’s Foundation Center of Excellence.
While people are meant to spend about a third of their day sleeping, Parkinson’s-related brain changes and disease symptoms can disrupt the body’s internal clock.
These challenges, coupled with excess daytime sleepiness, can create a vicious cycle. Too much sleep during the day and fragmented sleep at night can cause fatigueand impact movement, function, mood and well-being.
Tackling Insomnia
Like good health, restful slumber takes work, often requiring daily exercise and time outside in natural daylight. Limiting naps, winding down before bed, minimizing screentime, sticking to a bedtime schedule and keeping a dark, cool bedroom are also key to deep sleep. Sometimes, just stepping out of bed when feeling restless to pursue a quiet activity until feeling tired can make all the difference.
However, even when following best practices for sleep, insomnia can persist in Parkinson’s:
As levodopa wears off, tremor or other movement symptoms can increase, making turning over in bed difficult.
Age-related aches or arthritis can also flare up at night.
Nocturia, the need to frequently urinate throughout the night, can affect as many as 60% of people with PD. An enlarged prostate can also increase urinary urgency for men.
Depression and anxiety, common and often undertreated in people with PD, can exacerbate sleeplessness. So can stress. Conversely, insomnia can cause mood changes and stress.
Sleep apnea, disrupted breathing during sleep, can impact nearly half of people with PD.
If tossing and turning continue despite a healthy sleeping environment, talk to your doctor, who can review and adjust the dosage and timing of current medications and get to the root of sleep problems. Tools used to diagnose sleep disorders often include your medical history, a sleep journal or a sleep study.
Insomnia treatment should be personalized to your individual needs and symptoms, and might include:
Cognitive behavioral therapy (CBT), strategies learned in person or online designed to tackle behaviors and thinking that interfere with good sleep.
Learned relaxation techniques, such as progressive muscle relaxation, silent repetition of certain calming words or phrases (autogenic training) or use of positive mental visualization (guided imagery).
Sleep restriction, which initially limits time in bed with the aim of promoting longer, deeper sleep.
Bright light therapy to lessen daytime sleepiness.
Your doctor might combine sleep therapy with medication. Common insomnia medications include:
Melatonin
Sleep-promoting z-hypnotics (zolpidem, eszopiclone and zaleplon) and benzodiazepines (clonazepam and temazepam)
Wakefulness-inhibiting therapies including trazadone, tricyclic antidepressants (amitriptyline and doxepin), mirtazapine, orexin antagonists (suvorexant, lemborexant and daridorexant), melatonergics (melatonin and ramelteon) and quetiapine
Other PD-related insomnia therapies can include safinamide, doxepin and eszopiclone.
Restless Leg Syndrome (RLS)
People who experience Willis-Ekbom disease, commonly known as restless leg syndrome, can feel an uncomfortable urge to move, as well as tingling, burning, aching or crawling sensations in the legs. While there isn’t always a known cause, RLS can be linked to neurological changes, medications, including some antidepressants, or iron deficiency. When RLS is suspected, based on a person’s symptoms, evaluating iron levels is necessary.
Treatments for iron deficiency include oral or intravenous iron. If iron levels are sufficient and symptoms continue, there are other treatment options available, including:
Alpha-2-delta ligands – gabapentin, pregabalin and gabapentin enacarbil.
Benzodiazepines, including clonazepam.
Medications such as dipyridamole or amantadine or in severe cases, opioids.
Tonic motor activation (TOMAC) is a new, below-the-knee nerve stimulation treatment approved by the U.S. Food and Drug Administration for moderate to severe RLS that can be used periodically throughout the day.
Though there is a strong relationship between Parkinson’s and RLS, researchers are discovering that the underlying causes of each disease may be very different. Parkinson's is connected to midbrain dopamine loss, while RLS seems to be linked to signaling changes in other areas of the brain.
Dopamine medications commonly used for PD were also once a mainstay RLS treatment. Evidence now shows long-term use of dopamine medications in people with RLS can sometimes cause brain signaling and RLS symptoms to worsen. In someone with Parkinson’s, careful tailoring of dopamine medications used to manage movement symptoms can also be effective in managing RLS symptoms.
REM Sleep Behavior Disorder (RBD)
During the rapid eye movement (REM) stage of sleep, when dreaming happens, typically only the eyes move. The brain shuts down large-body movement as a protective measure. Neurodegenerative diseases, including Parkinson’s, are linked to REM sleep behavior disorder (RBD) failure of this on-off switch. Sleep apnea and antidepressant use can also be linked to RBD.
RBD can cause someone to physically act out their dreams. A person might talk in their sleep, use harsh language or scream, or fall or jump out of bed. These vivid dreams can be mild or incredibly disruptive and may cause injury to the dreamer or their bed partner.
Nearly 50% of people with Parkinson’s report REM sleep behavior disorder symptoms, which can precede a Parkinson’s diagnosis by several years.
Creating a safe sleeping environment is essential for someone experiencing RBD symptoms:
Remove any objects that present a risk for injury.
If possible, lower the mattress to reduce fall risk.
Place protective cushioning on the corners of bedside furniture.
Add cushioning to the headboard, a bedrail to prevent falls and a mat or carpet beside the bed to cushion accidental falls.
Bed partners may get deeper sleep using a pillow barrier or separate bed.
A sleep study can diagnose or rule out RBD and medications are often used to manage symptoms. Treatments may include:
Melatonin (3 to 12 milligrams)
Clonazepam (.25 to 2 milligrams at bedtime) or pramipexole
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There are many non-motor challenges associated with Parkinson's disease that may not always by easy to discuss. With a focus on cognition and speech, this program will provide strategies for coping and talking about it with healthcare providers or loved ones.
Expert Speakers
Mitesh Lotia, MD
AdventHealth Neuroscience Institute
Jennifer Gelb, MS, CCC-SLP
Speech Language Pathologist
Director of Speech Therapy Services
Lake Centre Rehabilitation
Practical strategies, therapeutic approaches, and supportive tools will be shared to help people with Parkinson’s and care partners feel more confident and empowered in daily communication and eating.
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.