My PD Story

DawnElla Rust out in nature smiling at the camera.
People with PD

DawnElla Rust

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.

Explore helpful Parkinson’s resources and browse by topic, from mental wellness and treatments to fitness and diet.

Advancing Research

Neuro Talk: Early-Onset Parkinson’s Disease (EOPD)

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 symptoms are 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.

Learn more about early-onset (also referred to as young-onset) Parkinson’s.

Educational Events

Managing Changing Symptoms

10:00 am to 2:30 pm EST
FREE
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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.

Upcoming Events

Educational Events

Navigating Advancing Needs

1:00 pm to 3:00 pm EST
FREE
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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.

This program is presented in partnership with Michigan Medicine.

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Upcoming Events

Educational Events

Parkinson's Basics: What You Need to Know

Virtual ( Zoom )
1:00 pm to 2:00 pm EST
FREE
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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.

This is a virtual program, taking place live, using the online Zoom platform. Instructions on joining the webinar are provided after registering.

Upcoming Events

Raise Awareness

How to Address Sleep Disorders in Parkinson’s for Sounder Slumber

Man struggling to sleep

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 fatigue and 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

  • Transdermal rivastigmine

Learn More

Explore our resources about sleep in Parkinson’s: 

Educational Events

Let's Talk About It: Cognition & Speech

10:00 am to 2:30 pm EST
FREE
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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 

Sira Botes OTR/L CHT CDP
Owner/Founder Botes Memory Method

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.

Upcoming Events

Educational Events

Great Lakes Chapter Symposium

Virtual ( Zoom )
11:00 am to 2:45 pm EST
FREE
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Join the Parkinson’s Foundation in-person or online for the Great Lakes Chapter Parkinson’s Symposium.

Hear about current and upcoming treatments, ongoing research, and resources available in your community to help you live your best life with Parkinson’s.

Speakers

Maggie Caulfield, PhD
Director of Research
Parkinson's Foundation

Amy Mook, MS, MPH, CGC
Certified Genetic Counselor
University of Michigan

Special presentation from the new Kirk Gibson Center and other local resources. 


For in-person attendees: In-person check in starts at 10 a.m. 

For virtual attendees, via Zoom: The live stream starts at 11 a.m. 


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.

This program is in partnership with Michigan Medicine.

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Upcoming Events

Educational Events

Live Fitness Friday - Functional Exercise to Delay the Disease

Virtual ( Zoom )
1:00 pm to 1:45 pm EST
Free
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This session will focus on each of the areas of exercise, recommended by the Parkinson’s Foundation, including cardio, flexibility, agility, coordination, balance, and strength, while participating in an engaging, fun, and powerful exercise session. Exercises included can be incorporate into your daily exercise regimen, with the goal of maximizing safe, functional mobility and delaying the progression of Parkinson’s disease symptoms. 

Equipment needed: sturdy chair, water, towel, light dumbbells if available (may also use bottled water or soup cans, if you do not have access to dumbbells)

Instructor

Allison Boshart, Physical Therapist, DPT
PWR! (Parkinson's Wellness Recovery), Delay the Disease, LSVT Big
Instructor of the Premier Parkinson’s Wellness Program at Miami Valley Hospital North

Alec Heffner, AT, CSCS, TSAC-F, TPI F2
Total Health Works Parkinson's
Instructor of the Premier Health Parkinson’s Wellness Program at Miami Valley Hospital North

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.

This is a virtual program, taking place live, using the online Zoom platform. Instructions on joining the webinar are provided after registering.

Upcoming Events

Educational Events

Live Fitness Friday - NeuroBalance™: Total Wellness for Parkinson’s

Virtual ( Zoom )
1:00 pm to 1:45 pm EST
Free
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NeuroBalance™ is Movement Revolution’s comprehensive wellness program designed for individuals at every stage of Parkinson’s Disease. Each session integrates mobility, flexibility, strength, cardiovascular conditioning, and balance training into a single, well-rounded workout.

This whole-body approach supports improved movement quality, better posture, reduced stiffness, and enhanced cardiovascular health — all while promoting neuroplasticity and functional independence. Whether you’re newly diagnosed or managing more advanced symptoms, NeuroBalance™ provides the structure, variety, and expert coaching to keep you moving strong, living well, and staying ahead of Parkinson’s.

Instructor

Eric Johnson,CSCS, CIFT, NES 
Founder and CEO, Movement Revolution

Movement Revolution Team

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.

PD Health @ Home is presented by the Light of Day Foundation, whose generosity has made this programming possible.

Light of Day

This is a virtual program, taking place live, using the online Zoom platform. Instructions on joining the webinar are provided after registering.

Upcoming Events

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