My PD Story

Gil Kim and his wife on vacation
Care Partners

Gil Kim

Upon retirement, Gil Kim was ready to move back to Mississippi to be closer to his two grandchildren, Colebea, 10, and Oliver, 7. Gina Kim, Gil’s wife, was not quite as ready. After being diagnosed with Parkinson’s disease (PD) in 2011, Gina and Gil had built an intricate support system that worked for them, physically and mentally.

“We were never the type of people who would take a prescription and just wait,” Gil said. “Thanks to the Parkinson’s Foundation, we had a wealth of resources at our fingertips. We knew exercise was vital, so Gina became a boxer, pole walker, and a practitioner of Tai Chi. She joined clinical trials.” Living in Atlanta, GA, they were mere miles away from a movement disorders specialist (a neurologist trained in PD), a Rock Steady Boxing gym, their support groups. Gil volunteered and served on numerous PD groups. But eventually, Gina agreed to move to Mississippi, if Gil helped her build a support system.

Utilizing his strengths amassed from a 40-year career with the Army Corps of Engineers, Gil created a blueprint. “I was replicating a model that worked,” he said. He would soon find out that he was not only building themselves a Parkinson’s support system, but he was building one for an entire state. 

“We relied on the Parkinson’s Foundation to help build our support community,” Gil said. He reached out to his Parkinson’s Foundation network in Georgia to help him plan a local PD symposium in Mississippi. Together, he and Gina launched a monthly support group, and one for caregivers.

Next, they applied and received a Parkinson’s Foundation community grant called “What’s Up, Doc?” The series of meetings aimed to bring together the newly diagnosed in the local PD community to inform, engage, and get them involved. “In our first meeting, a woman and her husband attended, she looked frightened to be there and frightened about PD, but by the end of it, she had a smile and told me ‘I’m happy,’” Gil said.

Gil is familiar with Parkinson’s Foundation resources because he has relied on them for more than a decade, through the various stages of Parkinson’s and caregiving. “Every week or two I hear from another Mississippian looking for help and hope,” Gil said. “I always suggest they call the Helpline and recommend they sign up for PD Health @ Home virtual events — these are game changers for people in rural areas, like Mississippi, where other resources are not available.”

Gil continued building the buttresses of a PD support system. Exercise was next. He found a local church that had built a boxing gym, provided coaches and volunteers that would ultimately host Rock Steady Boxing classes. Twice a week Gina and up to 30 people in the local PD community attend a boxing class.

Today, more than 60 people attend the local monthly support group meetings Gil and Gina set up. In their most recent meeting, Gil secured a movement disorders specialist from Dallas, TX, to speak with the group. To take it a level up, a volunteer donates to the support group, which Gil leverages into designing a healthy meal for every attendee. “Being an engineer organizer, I like to plan. Gina and I plan and prepare a healthy meal. We walk away from every meeting with a full stomach, full of knowledge and a happy face.”

Gil has succeeded in replicating a PD model that works for his wife. “We do things together. It’s all about not only taking care of her, but at the end of the day we help other people,” Gil said.

While Gil is dedicated to his PD community, he also makes moves on a national scale, helping guide the Parkinson’s Foundation through serving on its People with Parkinson’s Advisory Council and regionally on the Gulf Coast Chapter Advisory Board (President elect). He also helps guide the Rock Steady Boxing group. “It’s an honor to get involved — all of this involvement is dedicated to making life better for my wife,” he said.

Every April, Gil and his team submit a proclamation to make April Parkinson’s Awareness month and take a trip to meet with the governor to receive the signed document. “This year, we took a group of 30 people, and I knew I’d have a chance to speak with him, so I asked him, ‘do you know our state does not have a movement disorders specialist?’” Gil said. “He was surprised. I then told him my wife had to go out of state for deep brain stimulation surgery, but not everyone has the opportunity. My goal in letting him know we don’t have an MDS was so the next time he talks to a medical board or group of professionals, he could bring it up.”

In just four short years since their move, Gil and Gina have brought resources and events that bring people together, including helping launch Mississippi’s first-ever Moving Day, A Walk for Parkinson’s. But they have also found unlimited joy in grandparenting. 

Gil Kim and grandson

“My wife’s Parkinson’s is gradually progressing, and we love traveling, so a few years ago we began taking one grandchild at a time on a trip,” Gil said. Playing to their strengths as a retired teacher and engineer, they design each trip, complete with itineraries articulately built around history lessons, to cater to their grandchild’s individual interests. “We took our grandson to New York for a week. Our granddaughter to Paris. I know PD is depressing for a lot of people, but you have to look at everything going forward. Look at all the money we saved all our life, let’s go spend it. I’m sharing our story with them.”

Videos & Webinars

Expert Briefing: Parkinson's and the Gut-Brain Connection

October 11, 2023

We know the brain and gut are connected. While stomach or intestinal distress can lead to anxiety or depression, gut-brain connections go much further — new research strongly suggests a link between the gut (the gastrointestinal system) and Parkinson’s disease. Learn more about the gut’s potential impact on symptoms and progression.

Download Slides - Introduction and Closing Remarks

Download Slides - Dr. Rusch's Presentation

Presenter

Carley Rusch, PhD, RDN, LDN, Medical Science Liaison
Abbott Nutrition

Videos & Webinars

Neuro Talk: Accelerating Drug Discovery Through the Parkinson’s Virtual Biotech

Launching a new Parkinson’s disease (PD) drug can take years and cost upwards of one billion dollars.

In our latest Neuro Talk, John L. Lehr, president and CEO of the Parkinson's Foundation, and Arthur Roach, director of the Parkinson’s Virtual Biotech at Parkinson’s UK, discuss how the Parkinson’s Virtual Biotech is accelerating PD drug discovery and development. This international collaboration will help find the next life-saving Parkinson’s drug in years, not decades.

Podcasts

Episode 160: Atypical Parkinsonism Series: Treatment and Interdisciplinary Approach to Care

Considered “atypical Parkinsonian syndromes,” over half of people with progressive supranuclear palsy (PSP), corticobasal degeneration (CBD) and multiple system atrophy (MSA) are initially misdiagnosed with Parkinson’s disease (PD) due to similarities in early symptoms as well as lack of awareness of these rare, neurodegenerative diseases among many healthcare professionals and the general public.
This is the second of three podcast episodes within our atypical parkinsonism podcast series, organized in partnership with CurePSP and designed to address the treatment interdisciplinary approach of PSP, CBD and MSA.
In this second episode of the series, Heather Cianci, Outpatient Neurological Team Leader and founding therapist of the Dan Aaron Parkinson’s Rehabilitation Center, Penn Therapy & Fitness at Pennsylvania Hospital in Philadelphia, Pennsylvania and Julia Wood, Director of Professional and Community Education at the Lewy Body Dementia Association, cover the treatment and interdisciplinary approach to care for atypical parkinsonism.
Julia Wood, Heather Cianci, and podcast host, Dan Keller, have disclosed that they have no relevant financial disclosures.

Released: October 3, 2023

Raise Awareness

How to Manage Bladder and Common Urinary Issues in Parkinson’s

Lady holding her stomach in pain

Though bladder problems are one of the most common challenges in Parkinson’s disease (PD), they are rarely discussed with a doctor. Parkinson’s can impact bladder function in many ways, including urinary urgency, leakage and urinary tract infections. Untreated, some urinary issues can lead to cognitive problems. Discover why it’s important to discuss urinary difficulties with your healthcare provider and learn about the treatments that address challenges and improve quality of life.

This article is based on Parkinson's Disease and the Bladder, a Parkinson’s Foundation Expert Briefing webinar presented by Abhimanyu Mahajan, MD, MHS, Movement Disorders Neurologist and Assistant Professor of Neurology, University of Cincinnati and Ankita Gupta, MD, MPH, FACOG, Associate Fellowship Director, Female Pelvic Medicine & Reconstructive Surgery, University of Louisville Health.

PD and Pelvic Floor Health

In Parkinson's, the brain does not produce enough dopamine. The decrease in this feel-good brain chemical impacts more than movement and mood. Parkinson’s-related brain changes can lead to a host of symptoms in the pelvic floor region that can impact gastrointestinal and urinary systems, sexual health and more.

Constipation, common in PD, can begin as early as 20 years before the key movement symptoms that lead to a diagnosis. Urinary symptoms, however, often begin after someone has lived with Parkinson’s for 10 years or more.

Urinary and Bladder Issues

Parkinson’s impacts the autonomic nervous system (the system in charge of the body’s unconscious actions, such as pumping blood, blinking and breathing). When this system causes urinary issues, it’s known as neurogenic bladder dysfunction.  

These urinary problems are widespread in Parkinson's and affect women and men. Whether doctors do not bring up urinary health or people are reluctant to mention issues, research shows that anywhere from 24% to 96% people with PD experience urinary symptoms.

Urinary challenges are also commonly associated with increased age and worsening cognitive function. The average age of a person receiving a Parkinson's diagnosis is 60 — around the same age people commonly experience:

  • Urinary urge incontinence: urgency accompanied by leakage
  • Stress incontinence: urine leakage when coughing, sneezing or exercising
  • Mixed incontinence: leakage after a sensation of urgency and with physical movement

Unless asked, women are far less likely to report urinary challenges compared to men. When asked, almost 50% of all women in the U.S. more than 80 years old report at least one relevant urinary symptom.

In addition to urinary incontinence and leakage, PD can cause:

  • difficulty initiating urination.
  • failure to fully empty the bladder.

Risks Related to PD Urinary Symptoms

In Parkinson’s, the inability to delay urination can lead to falls.

Neurogenic orthostatic hypotension (nOH), when blood pressure drops when moving from sitting to standing, or from lying down to rising, can be common in people with PD and other nervous system disorders. Urinary urgency combined with nOH can increase a person’s fall risk.

PD-related balance difficulties (postural instability), trouble moving and walking and waking to use the bathroom at night — when Parkinson’s medications are not fully effective — can also increase the risk of falls connected to urinary urgency and bladder issues.

Sudden cognitive changes are unusual in PD. These should be urgently addressed and may be caused by a urinary tract or bladder infection, other infections, or a medication side effect. 

Assess and Address Bladder Health

If you experience urinary issues, talk to your healthcare provider. To prepare:

  • Keep a 24-hour overactive bladder diary. This can help you keep track of urination timing and frequency and provide greater detail to your doctor.
  • Think about your treatment goals. Do you need enough relief to sleep better or are you hoping to get through an outing without overly frequent trips to the restroom?
  • Aim to take PD medication on time, every time. Most people with PD know medication timing is often essential to controlling PD symptoms. Staying on schedule can also impact bladder function.

Your doctor may refer you to a specialist. Urologists are doctors who focus on the urinary system, while urogynecologists specialize in treating pelvic floor disorders in women.

Urinary Issue Treatments

Your doctor will try to get to the root of any urinary issues, looking for reversible causes such as an infection or diuretics (water pills). It’s not uncommon for people with Parkinson’s to have bladder symptoms that predate their PD diagnosis.

A doctor might have you stand or sit and cough to assess for stress incontinence or use an ultrasound or catheter to confirm whether your bladder is fully emptying. Urodynamic testing can help your healthcare provider determine whether your bladder fills and empties at normal pressures and reveal urinary dysfunction.

Treatment is tailored to a person’s symptoms and goals. Non-surgical options include:

  • Kegel and pelvic floor muscle strengthening exercises, which can benefit men and women.
  • Referral to pelvic floor physical therapy.
  • Behavioral and lifestyle modifications, such as practicing urge suppression and urinating at fixed intervals to retrain the bladder and increase its holding capacity.
  • Botulinum toxin injections for overactive bladder.
  • For women, a continence-support pessary — a tailored, soft, vaginal device, typically removable, that can improve bladder control. This option may be challenging as Parkinson’s advances.

Medication therapy is also an option. Beta-3 agonists mirabegron (Moretti®) and vibegron (Gemtesa®) are once-a-day medications to control bladder urgency and frequency.

While anticholinergic drugs are often a first-line therapy for bladder issues, research finds cognitive slowing can be a side effect to these drugs. Use should be avoided in people older than 70, as there is a greater potential for anticholinergic-related hallucinations and confusion. Oxybutynin (Ditropan®), darifenacin (Enablex®), tolterodine (Detrol®), trospium (Sanctura®), phenoperidine fumarate (Toviaz®) and tofenacin succinate (VESIcare®) are among the anticholinergics used to manage overactive bladder.

Surgical options for bladder challenges include:

  • Injection of a hydrogel urethral bulking agent. This acts as a plug to stop urine leakage during coughing, exercise or other movement.
  • Sacral neuromodulation. Electrical stimulation through an implanted bladder pacemaker-like device, to improve urinary urgency, incontinence and retention.
  • Urethropexy to adjust and support the urethra for bladder control.
  • Retropubic colposuspension. Reinforcement for the bladder and urethra to improve urinary incontinence.
  • For men, bladder sling surgery, which supports the urethra to boost bladder control.
  • For women with stress incontinence, urethra-supporting synthetic midurethral sling surgery or autologous fascial sling surgery.

Learn More

Explore our resources about urinary issues and Parkinson’s:

Videos & Webinars

Expert Briefing: Parkinson’s Disease and the Bladder

September 13, 2023

Many people with Parkinson’s disease (PD) experience urinary difficulties. Being aware that urinary problems, such as urinary tract infections, can be a symptom of Parkinson’s is the first step toward management. Learn more about common bladder problems in PD, why they occur and treatment options.

Download Slides

Additional Resources

Presenters

Abhimanyu Mahajan, MD, MHS, Movement Disorders Neurologist and Assistant Professor of Neurology
University of Cincinnati
Cincinnati, OH

Ankita Gupta, MD, MPH, FACOG, Associate Fellowship Director, Female Pelvic Medicine & Reconstructive Surgery
University of Louisville Health
Louisville, KY

Videos & Webinars

Expert Briefing: Understanding Gene and Cell-Based Therapies in PD

May 10, 2023

While still in the developmental stage, genetic and cell-based therapies hold some promise for people with Parkinson’s disease (PD). This webinar will review what those considering gene-based or cell-based therapy may expect in terms of symptom management and disease progression.

Download Slides

Additional Resources

Presenter

Roger Barker, BA, MBBS, MRCP, PhD
University of Cambridge

My PD Story

frank_antonicelli.png
People with PD

Frank Antonicelli

Parkinson's disease (PD) has an uncanny ability to catch you off guard, striking when you least expect it. I was 39 years old and living an active life when my first symptoms emerged. My wife actually noticed before I did, when she pointed out that my right arm appeared stiff during a walk.

Soon after, while I was playing golf, I had a moment where my mind and body seemed to exist in two separate worlds, leading to several out-of-control shots. I also noticed that my symptoms were concentrated on my right side, affecting my fine motor skills and leading to a change in my gait.

My symptoms progressed and reached a breaking point when a stumble over my right foot sent me tumbling down the stairs at home. It was a wake-up call and a realization that I needed to find out what was causing these problems.

The following year and a half became a flurry of doctor’s appointments and diagnostic tests in search of answers. After seeking second opinions, the verdict finally arrived in 2007: Parkinson's disease. Accepting this harsh reality was a struggle, followed by the onset of anxiety, fatigue and an apprehension towards even the simplest of tasks. These limitations became my new companions, guiding my decisions.

In pursuit of a better life, I explored different treatment options — acupuncture, hyperbaric oxygen therapy, massage, muscle activation techniques, peptide therapy, IV nutrition therapy and more. Although I was making progress, I needed to go further.

A pivotal turning point was when I engaged with a movement disorder specialist (MDS). This collaboration reshaped my perception of how to manage Parkinson’s. Together, we created a holistic approach to tackle my symptoms head-on, establishing a plan that revolved around exercise, diet and stress management. We connected in a profound way that changed my outlook and helped me learn new techniques for dealing with PD.

I also began looking into resources from the Parkinson’s Foundation to help navigate the disease. I found the Living with Parkinson's section on their website to be a great resource for information. One of my initial challenges after being diagnosed was finding support, so I started incorporating their emotional and mental health tips into my everyday life.

Fueled by positivity and visualization, I envisioned a life free of mobility hindrances, propelling me towards greater activity and diminished fear. This journey of embracing Parkinson's became a lesson in understanding my body and its signals.

However, in February 2020, a setback led me to the emergency room. My Parkinson’s medications had become ineffective, and I felt like my body was betraying me. Three months of at-home care steered me towards a groundbreaking decision — deep brain stimulation (DBS) surgery. After meticulous research and consultations with my neurologists, I underwent the DBS procedure in November 2020. This surgery marked a new chapter in my life, bringing improvements to my mental, physical and spiritual well-being.

Utilizing the lifestyle strategies from my MDS and feeling rejuvenated after DBS surgery, I began exploring creative outlets. Inspired by my love for writing, I established Be Still Publishing, a platform where I share my poetry, lyrics and music. In 2023 I released my first audiobook, "Embracing Parkinson's: A Journey of Acceptance and Healing," featuring one-on-one conversations between me and my MDS, Joe Green, offering insights into the world of a person living with PD and strategies for managing the condition.

In my journey to understand and deal with Parkinson’s, I discovered one of the best ways to manage this disease is through the help of healthcare professionals. I was surprised to learn that only 9% of people with PD receive care from a movement disorders specialist. This hit close to home, as I worked very closely with my MDS for years and it made a huge difference in the way I viewed and managed my Parkinson’s.

I am grateful for the support of my neurologist and MDS, as well as my friends and family. Despite the challenges I face, I refuse to let Parkinson’s sideline my spirit.

People living with Parkinson's who seek expert care have better outcomes. Find expert care near you.

Podcasts

Episode 157: Pump Therapy

Typical treatment of Parkinson’s disease (PD) consists of oral levodopa/carbidopa, along with other oral medications. Although there is no one-size fits all treatment, people with PD may experience more “off” periods, or symptom fluctuations, as the disease progresses. In this case, non-oral treatments, such as pump therapy, may be another option to consider.

Examples of currently available pump therapies for Parkinson’s include medication, namely apomorphine, delivered under the skin (subcutaneous) from a pump, or a gel containing levodopa/carbidopa delivered by a pump inserted through the skin directly into the upper part of the small intestine (intestinal gel pump).

In June 2023, expert Parkinson’s clinicians and researchers led a course in Poland about current pump therapies and what may be coming in the future. In today’s episode, Professor Ray Chaudhuri, one of the course leaders and Director of the Parkinson’s Foundation Centre of Excellence at King’s College Hospital in London, discusses some of the topics in the course, including who would be a good candidate for pump therapy, the benefits and risks, and recent developments in pump treatment options.

Released: August 22, 2023

Raise Awareness

8 Questions You’ve Always Wanted to Ask an Occupational Therapist

Occupational therapists help people with Parkinson’s disease (PD) remain independent and pursuing the activities they enjoy. Heather Simpson, OTD, OTR/L is an occupational therapist at the Norman Fixel Institute for Neurological Diseases at the University of Florida. At the Fixel Institute, she treats people with Parkinson's and other movement disorders while serving as co-clinical coordinator for their Parkinson’s Foundation Center of Excellence. In this article, Heather answers the most frequently asked questions about Parkinson’s and occupational therapy (OT).

What is your definition of occupational therapy?

Occupational therapy is a form of rehab therapy in which therapists use everyday activities to promote health, wellbeing and your ability to participate in meaningful activities in your life. OT works on “occupations,” which include self-care activities (like dressing, eating, bathing and toileting), home management activities (like cooking and driving) and leisure activities. Occupational therapy is individualized, but our goal is to make each person feel comfortable with who they are and help them live independently for as long as possible.

When should a person with PD start occupational therapy?

Research supports that occupational therapy intervention, along with physical therapy and speech therapy, can be very helpful for people with Parkinson’s disease. Starting occupational therapy early on is highly recommended. Even if you are independent when you first get diagnosed with Parkinson’s, starting OT can provide you with a home program that reacts to existing PD symptoms and prevents additional PD symptoms from occurring. OT can also give you tips and strategies to make sure you're feeling your best during daily activities.

What are the benefits of occupational therapy for people with Parkinson’s?

What I love about OT is that it's holistic. We provide evidence-based interventions to help people enjoy life through everyday activities. OT is also tailored to your individual needs as a person with Parkinson’s. For movement symptoms, we can help with posture, rigidity, bradykinesia and fine motor skills. For non-movement skills, we work on improving sleep, vision, cognition and mood. Occupational therapy is useful because it’s available in many different settings — it can be found in outpatient therapy, inpatient therapy, hospitals, nursing homes and more.

Is it better to go to a specialized facility for occupational therapy?

Getting occupational therapy services is important no matter what, but therapists at Parkinson’s Foundation Centers of Excellence are specialized in Parkinson's and related disorders. They do a lot of research and learning, particularly about Parkinson's, and can work together with your local providers to give PD-specific recommendations.

Occupational therapists at specialized facilities also work directly with the physicians on your multidisciplinary team. This type of collaboration can help make sure that we're understanding your symptoms and your needs.

How does an occupational therapist collaborate with the Parkinson’s care team?

Occupational therapists are an important part of the care team for people living with Parkinson’s. We are directly involved with physicians and nurses, as well as physical therapists and speech-language pathologists. Since occupational therapists may work with you more regularly than you see your neurologist, we can be the eyes and the ears for other members of the team.

For example, if you come into an OT session and we notice you are experiencing new movement fluctuations, we can reach out to your doctor on your behalf to address the issue. Occupational therapists coordinate closely with your doctor and help make critical decisions for your care.

Can you share an inspirational story about one of your PD clients?

Occupational therapy is meaningful because it is person-centered and works to meet an individual’s needs. One of my clients was highly motivated by her role as a mother and a grandmother. She had a hard time moving her arms, hands and fingers, but through OT we found ways to adapt board games so she could play with her grandkids when they came to visit. Even though she had limited physical ability, we were able to maintain what she found important in her daily activities through these personalized interventions.

How do you manage the stress that can accompany helping other people?

I love what I do for work, but I think it’s also very important to maintain the other roles I play in my life: friend, sister, daughter and spouse. I take time to pursue activities outside of work that fulfill those roles. I exercise, go to therapy and plan specialized date nights with my friends.

People in the Parkinson’s community may have a similar experience when it comes to the roles they play in life. When someone is diagnosed with PD, they may feel like they have to exercise full-time. Care partners may feel like they need to be a care partner at all times, and they lose their role as a spouse. I think it’s important to find a balance between your various roles whenever possible.

What is a takeaway the PD community should know about occupational therapy?

Occupational therapy is an individualized therapy that ensures safety, independence and happiness. It allows you to maintain your sense of self. OT is critical throughout all stages of Parkinson’s, from diagnosis to palliative care, but it is designed to help you maintain a sense of self and be happy with who you are.

For help finding an occupational therapist near you, contact our Helpline at 1-800-4PD-INFO (1-800-473-4636).

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