Tag: #IPMDC

Urgent Care

With the cooler weather, we often see an increase in requests for help with urgent issues, and this year is no exception. With Parkinson’s, it’s hard to know whether sudden changes, from a few hours to a few days, are related to Parkinson’s, Parkinson medications, or something else.

Because Parkinson’s is slow to progress, sudden changes are often an indication of a bacterial infection such as a urinary tract infection (UTI) or pneumonia. In older adults, the classic UTI symptoms of burning or pain may instead appear as sudden changes in behavior or mental state, and similar changes can apply to pneumonia. These symptoms can include: confusion, disorientation, increased agitation, irritability, mood swings or hallucinations, difficulty in performing daily tasks, poor coordination, and fatigue, as well as new balance issues and unsteadiness. These kinds of symptoms can also be a result of lack of sleep or stress, so it can be difficult to know what to do and when.

One concern is that families sometimes wait too long to seek care, particularly if they believe that the changes are related to Parkinson’s. When treated, the changes can be reversible, but left untreated, infections can lead to sepsis, permanent damage to organs, and even death.

Our recommendation is, when in doubt, check it out.

Please see your primary care physician or seek urgent care.
Please don’t wait for symptoms to become severe or life-threatening.

For visits to the ER, and hospital and rehabilitation admissions, you can download copies of our IPMDC Patient Care Kit for Parkinson’s to take with you and share with the team providing care. You’ll find it at ipmdc.org/hospital and there’s a blue button near the top of every page on ipmdc.org that will take you to it. You’ll see that our two most important messages are:

  1. that patients receive their Parkinson medications, as prescribed by their neurologist, on time, every time,
  2. and that Haldol (haloperidol) is most definitely contraindicated for people with Parkinson’s.

 How can you prevent UTIs and pneumonia?

WPC 2026 Opening Ceremony

WPC Choir performs “You are Not Alone”

A special highlight of the Opening Ceremony of the 7th World Parkinson Congress in Phoenix, Arizona in May was the uplifting performance of “You Are Not Alone”.

This song was the winner of the WPC 2026 Song Competition, submitted by Colleen Bridges and Bridges for Parkinson’s (Rich Gootee/Greg Anderson, arranged by Shayla Blake).

It was performed by the WPC Global Choir, led by Judi Spencer, and featured guest contributions from Peter Frampton and other Grammy Award-winning artists. The choir is open to all congress attendees and no experience is required. They rehearsed for several months on Zoom, then in-person when they gathered in Phoenix prior to their performance at the opening ceremony.

For other videos from this year’s World Parkinson Congress, please visit youtube.com/@worldpdcongress.

The next congress will be in 2029 in Quebec City, Canada. Will we see you there?
worldpdcoalition.org

World Parkinson’s Congress 2026

WPC 2026

7th World Parkinson Congress, May 24 – 27, in Phoenix, AZ

Towards the end of May, a group of IPMDC friends and program partners attended the 7th World Parkinson Congress in Phoenix, Arizona.

This unique conference brings together people with Parkinson’s and their families, as well as clinical researchers working towards a cure, neuroscientists, clinicians, rehabilitation specialists, nutritionists, and many more.

Below are photos featuring our IPMDC friends.

Some of the highlights . . .

  • Lucy and Steve with Dance for PD in the Mid-Atlantic rode in on their tandem bike from Santa Fe, New Mexico.
  • UpENDing Parkinson’s climbers gathered with climbers from around the world to climb in nearby Gilbert, AZ., and Molly was there to cheer them on.
  • Sonia, Josefa, and John attended the WPC Leadership Forum where we discussed forming a Global PD Ready Coalition. IPMDC (represented by Sonia) is a WPC Organizational Partner, as is Parkinson’s Europe (represented by Josefa).
  • Rock Faced It All, a documentary about Teresa Bennett and directed by her daughter Clare, was presented at the congress just a few days after it was featured at the 2026 Mountainfilm Festival in Telluride, CO. Here’s a link to the trailer vimeo.com/1102311868.
  • Josefa, John, and Sonia presented their poster on Adapting exercise routines after a health setback in Parkinsons.
  • Theresa H. (drumming) and Lucy (dancing) were spotted on the stage during the closing ceremony.

This is a wonderful article by Parkinson’s Europe Director General, Hélène Nicora, describing her experience as a first-time attendee. parkinsonseurope.org/parkinsonslife/world-parkinson-congress-2026-my-journey/

The video below beautifully captures the spirit of the WPC 2026.
The cover photo features northern Virginia WPC Ambassador, Margie Zimmerman, presenting a special recognition to WPC Executive Director Elizabeth “Eli” Pollard with a special tribute—a star named in her honor.

See you in Quebec City!

Expert Insights on Parkinson’s, Tremors, and Movement Disorders

Hosted by Positive Aging Sourcebook

Advances Offer Hope and Better Quality of Life

In a recent live discussion Dr. Drew Falconer, Director of the Inova Parkinson’s and Movement Disorders Center, shared encouraging updates on Parkinson’s disease and other movement disorders.

Joined by Steve Gurney, Dr. Falconer emphasized that while these conditions are serious, modern medicine provides numerous effective tools for management, allowing many people to live active, fulfilling lives. What follows is a summary of their discussion.

Parkinson’s Is Treatable: A Chemical Deficiency, Not a Life Sentence

Dr. Falconer explained that Parkinson’s disease fundamentally stems from a deficiency of dopamine, a key neurotransmitter in the brain. The brain itself functions well, but low dopamine levels lead to motor symptoms. This distinction is crucial: the stereotypical image of advanced, debilitating Parkinson’s often reflects untreated disease.

As of 2026, more than 30 treatments have been approved to address this dopamine deficiency, with 15 new options emerging in the last decade alone. Life expectancy for people with Parkinson’s matches that of the general population when properly managed. “We can keep pushing, we can get people doing things that they never thought they could do,” Dr. Falconer noted.

Tremors: When to Pay Attention

Shakiness is a normal physiologic response—triggered by caffeine, stress, low blood sugar, fatigue, or even aging-related muscle loss. Persistent tremor, especially during actions like holding a cup or writing, warrants medical evaluation.

Essential tremor, affecting about 10 million Americans, is the most common pathologic tremor. It often runs in families and improves with treatments like propranolol (especially the extended-release form) or primidone. Alcohol can temporarily suppress it due to its effect on the cerebellum, which can aid diagnosis.

Accurate Diagnosis Matters

Parkinson’s has objective tests:

  • DATscan (a type of PET scan imaging the dopamine system, available since 2010) with >90% accuracy.
  • Syn-One skin biopsy (detects phosphorylated alpha-synuclein) with ~93% accuracy.

Conditions that can mimic Parkinson’s include normal pressure hydrocephalus, cervical spine arthritis, and certain dementias. Differentiating them is essential, as treatments differ.

Exercise and Community: Powerful Medicine

One of the strongest messages was the transformative power of movement. “The best treatment for you is to move,” Dr. Falconer stated. Exercise benefits motor symptoms, mood, sleep, constipation, and overall well-being. Patients often report dramatic improvements through activities like boxing, dancing, rock climbing, or gym workouts—many discovering these after diagnosis.

Community programs, such as those offered at Inova Parkinson’s and Movement Disorders Center (IPMDC) (120 free programs per month), foster connections and motivation. Participants frequently form deep friendships and regain a sense of purpose.

Addressing Common Questions

Heredity and Prevention: Most Parkinson’s (especially onset after 60) is not strongly hereditary. Lifetime risk rises only slightly (from ~5% to 6%) with a first-degree relative. No supplements prevent it; regular exercise offers the best protection.

Dementia Risk: Cognitive issues occur in about 14% of Parkinson’s cases—far from inevitable—and differ from Alzheimer’s dementia. Normal age-related changes are common to everyone.

Depression and Anxiety: These are common but treatable, often independent of Parkinson’s itself. Stabilizing dopamine, therapy, and staying engaged help significantly.

Advanced Options:

  • Newer formulations like Crexont (extended-release carbidopa-levodopa) provide smoother, longer-lasting relief with fewer daily doses.
  • Subcutaneous infusion devices (e.g., Vyalev) bypass gut absorption issues for more stable delivery.
  • Deep Brain Stimulation (DBS) remains highly effective for appropriate candidates, with long-term data showing major improvements in quality of life and “off” time. Focused ultrasound is another option for tremors.

Other Conditions: MSA (Multiple System Atrophy) is rarer and harder to treat. Tardive dyskinesia (from certain medications blocking dopamine) has effective new treatments like Ingrezza. Camptocormia (bent spine) benefits most from physical therapy.

Seek Specialist Care

Dr. Falconer stressed the value of movement disorder specialists, who manage far more Parkinson’s cases than general neurologists. Only about 7% of patients currently see one, per Medicare data. Patients should feel empowered to find a provider who aligns with their goals—medicine is a collaborative relationship.

A Message of Hope

The discussion highlighted rapid progress in the field. People should not rely on outdated information from decades ago. With proper diagnosis, modern treatments, exercise, and community support, Parkinson’s and related conditions need not define or limit one’s life.

For those experiencing symptoms or supporting loved ones, consulting a movement disorders specialist can open doors to effective management and renewed vitality. The future continues to brighten with ongoing research and innovation.