My PD Story

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People with PD

Gary Canner

In 2017, at the age of 76, I was diagnosed with Parkinson’s disease (PD). Gut punch! Now what?

Up until this point, I had survived both prostate and bladder cancers, and with five cardiac stents. I must now deal with an incurable disease. How did I get this? Was I predestined through heredity? Was it the fact that my home in Miami, FL, used well water for nine years? Why me?

First, how did I know I had Parkinson's?

I must go back some 40+ years. I have always been active in community/regional theater. I was in a production of The Music Man, as Professor Harold Hill. I did not know at that time that "I had Trouble not with a capital T but with a capital P for Parkinson's!”

In 2017, some 40 years later, I again auditioned for a role in The Music Man and when the director handed me the script to read for a part, my right hand began to tremor uncontrollably. The director noticed and said, "Gary, are you nervous?” I responded, “No, I've been doing theater for more than 40 years.” I saw my general practitioner and was diagnosed with essential tremor. Wrong, I said. I did my own research and my tremor is a resting tremor, it appears to be Parkinson's. Off I marched to a local neurologist who watched my gait and then took a DaTscan to confirm his clinical observations.

I then sought out the experts at The University of Florida Normal Fixel Institute, a Parkinson’s Foundation Center of Excellence, for treatment of my PD. Medication soon followed after trying all types of alternative approaches, including medical marijuana and acupuncture. Nothing helped.

I was told that one of the reasons I did not have symptoms until I was already 76 was because I was a daily exerciser for more than 25 years. Yes, I was an Olympic style racewalker on weekends during my 40's and 50's. Walking 5K, 10K, half marathons and training for these races, I was delaying the symptoms of PD, without knowing it.

After learning that exercise was the most important component of delaying the disease, I continued partaking of exercise. I have always played golf, but that is not aerobic. Since diagnosis, I enrolled in a Rock Steady Boxing program, daily treadmill work in my local gym, and soon I will begin the LSVT Big program for PD physical therapy.

Yes, now six years post diagnosis, I have learned that I was always predestined to get PD. Through a genetic test I learned that I have the gene mutation known as LRRK2! Which means that since I am an Ashkinazi Jew, I have a much greater chance of getting PD because of where my ancestors settled in Eastern Europe, now called Romania.

I am now 82, a senior citizen living in a Central Florida "Over 55" community surrounded by hundreds of thousands of people, with a large percentage of them having PD and not knowing or understanding it.

Enter the Parkinson’s Foundation Ambassador program. In 2022, at the age of 81, I began the ambassador training program. I soon learned that my skills as an actor and my profession as a Federal Mediator for the U.S. Court of Appeals could easily be transferred to educating people throughout Central Florida about Parkinson's. Thus far I have presented at numerous public events, fostering "Knowledge is Power" when dealing with PD.

The Parkinson’s Foundation well-documented fact sheets and numerous books and periodicals and website allow me to present the Foundation’s message. It is one which resonates with our senior communities and is well received. The feedback is undeniably personal because everyone with PD gets it! We are all the same because we all have PD, but we are all different because we all have PD. That is my message.

Looking for specific symptom information? Tips for daily living? Explore our free resources to find the information you need to live better, right now.

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:

Educational Events

Community Care Expo

7:45 am to 10:00 am MST
FREE
Community Care Expo AZ 2024

This Parkinson's Foundation Community Care Expo is an event designed to connect your business with resources for your Parkinson's patients and/or residents.

During our event, you will have the opportunity to hear from local Parkinson's Foundation team members, Movement Disorder Specialist and a member of the Foundation's Research Team as well as Chapter Volunteers and Staff on the many no cost resources available to your team.

The Parkinson's Foundation Southwest Chapter is pleased to host this gathering of professionals serving the local PD community.

This Community Care Expo is free to attend, but registration is required. 

COVID SAFETY: The health and safety of our participants, sponsors, volunteers and staff are our top priority. We continue to monitor CDC recommendations and will adhere to state and local COVID guidelines in place on the event day. Adjustments will be made if necessary.

Upcoming Events

Educational Events

Mindfulness Mondays - Mental Wellbeing

Each month, Dr. Rush invites you to slow down, breathe, and reconnect with yourself and your Parkinson’s community through a guided mindfulness practice. Together, we’ll explore simple ways to ground the body, calm the mind, and cultivate compassion and clarity that you can carry into your week.

Virtual
Fundraising Events

Moving Day Salt Lake City

9:00 am to 12:00 pm MDT
Free
Moving Day DC

Moving Day is an inspiring and empowering annual fundraising walk event that unites people around the country living with Parkinson’s disease (PD), their care partners and loved ones to help beat PD. Moving Day is more than just a walk. It’s a celebration of movement – proven to help manage Parkinson’s symptoms.

Leading up to the event, participants and teams fundraise to help the Parkinson’s Foundation provide vital resources and deliver quality care to more than 364,000 people living with Parkinson’s and other movement disorders, while improving Parkinson’s treatments through research.

Moving Day proceeds help bring quality care to more people with Parkinson’s, further Parkinson’s research, education and outreach initiatives. Moving Day raises awareness of Parkinson’s both nationally and in the local community.

Upcoming Events

Educational Events

Mindfulness Mondays - Mental Wellbeing

Each month, Dr. Rush invites you to slow down, breathe, and reconnect with yourself and your Parkinson’s community through a guided mindfulness practice. Together, we’ll explore simple ways to ground the body, calm the mind, and cultivate compassion and clarity that you can carry into your week.

Virtual
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

Podcasts

Episode 159: Research Series: Expansion of PD GENEration in Dominican Republic and Puerto Rico

Researchers have discovered several genes that are associated with the risk of developing Parkinson’s disease (PD). To better understand this relationship, the Parkinson’s Foundation is conducting a large population study, PD GENEration: Mapping the Future of Parkinson’s Disease, a national initiative that offers genetic testing and counseling for Parkinson's-related genes at no cost for people with PD. Since different ethnic groups may have differences in their genetic backgrounds, possibly affecting the course of their disease, PD GENEration is now expanding beyond the borders of the mainland U.S. to Hispanic communities in Puerto Rico and the Dominican Republic.

Our guest in this episode is Rebeca De Leon, Associate Director of the Clinical Research Department at the Parkinson’s Foundation. She explains why it is important to include people of diverse backgrounds in the study, how and where the Foundation is reaching out to enroll people from a range of communities in PD GENEration, and ultimately, how participation in the study will help scientists better understand the disease.

Released: September 19, 2023

Raise Awareness

3 Ways You Can Help Us Reach Further Toward a Parkinson’s Cure

A Day to Reach Further

The only way we can find a cure for Parkinson’s disease (PD) is through research. Although 10 million people live with the disease worldwide, research in PD is severely underfunded. The Parkinson’s Foundation is committed to closing the funding gaps in research and increasing access to healthcare and quality-of-life programs. The Reach Further campaign is a four-year fundraising initiative that will raise an additional $30 million to support and accelerate progress on these goals.

On September 19, the Parkinson’s Foundation is hosting A Day to Reach Further, a special day of giving that highlights the tremendous progress we have made thus far. As part of this day, Rune Labs, provider of StrivePD, has generously agreed to match all gifts made on A Day to Reach Further up to $10,000.

On A Day to Reach Further, help us fund these vital research initiatives that move us toward a cure:

1. Help Fund Cutting-Edge Scientists

To cure Parkinson’s, we need to know exactly what causes it. Our research team finds and funds scientists who focus on unraveling the basic biology of Parkinson’s. This year, we awarded grants to 30 scientists who are devoted to deciphering PD and finding new ways to attack it and stop progression.

Through our grants, we fund high-risk research that typically does not receive federal funding, which means we are advancing ideas that can lead to high rewards. Studies span from untangling the connections between inflammation, aging and Parkinson’s; to connecting environmental exposures and Parkinson’s through accelerated brain aging; and deciphering gait signaling to improve movement therapies. Meet some of our researchers here.

Our research grants, fellowships and partnerships help scientists explore innovative ideas and keep them in the Parkinson’s research field, ensuring that we continue to fund a pipeline of projects that could lead us to a cure.

2. Help Fast Track New Medications & Treatments

For a new Parkinson’s drug to go from an idea to an available medication it takes funding. Launching a new drug can take years and cost upwards of one billion dollars. We are accelerating this timeline alongside Parkinson’s UK, through the Parkinson’s Virtual Biotech, which is focused on building a pipeline of new drugs exclusively for Parkinson’s.

The Parkinson’s Virtual Biotech is directly investing in 13 medications that either address symptoms or aim to slow, stop or prevent the disease altogether. Some examples of these projects include:

  • Drug to treat dyskinesia in people with Parkinson’s
  • Clinical trial investigating the potential of a drug called ambroxol for slowing down the progression of Parkinson’s
  • Drug aimed to find ways to dial down inflammation in Parkinson’s.

The Parkinson’s Virtual Biotech ensures that promising Parkinson’s treatments are not lost in the development pipeline due to lack of funding. Through this exciting initiative, we believe we can find the next life-changing treatment in years, not decades.

3. Help Accelerate Clinical Trials with Genetics

Genetics research can fast track the discovery of new PD treatments. Right now, pharmaceutical companies are developing early-stage therapies or drugs that target people with specific genetic mutations. These new drugs are being designed to slow or even stop PD. Some studies are already enrolling people in clinical trials. However, it can take years to fill these trials. For just one trial that needs 300 participants with a specific PD genetic mutation, researchers may screen up to 15,000 people.

PD GENEration: Mapping the Future of Parkinson’s Disease accelerates clinical trial recruitment — and their results. Our groundbreaking study offers genetic testing and counseling to people with PD at no cost. So far, more than 10,500 people have enrolled in the study and 12.7% of participants have tested positive for at least one of the seven Parkinson’s-related genes. Seventy-four percent of participants have never participated in a PD research study prior to PD GENEration, opening doors for people to join other research studies and advance the field.

The faster we recruit participants in this study, the sooner clinical trials can begin — and the closer we are to a research breakthrough.

DONATE TODAY

Each year, 90,000 Americans are diagnosed with Parkinson’s disease. By participating in A Day to Reach Further, you are directly investing in research that we believe will lead to new treatments and ultimately, a cure. Make a gift at Parkinson.org/ReachFurtherDay.

Fundraising Events

Moving Day Sacramento

9:00 am to 12:00 pm PDT
Free
Moving Day DC

Moving Day is an inspiring and empowering annual fundraising walk event that unites people around the country living with Parkinson’s disease (PD), their care partners and loved ones to help beat PD. Moving Day is more than just a walk. It’s a celebration of movement – proven to help manage Parkinson’s symptoms.

Leading up to the event, participants and teams fundraise to help the Parkinson’s Foundation provide vital resources and deliver quality care to more than 364,000 people living with Parkinson’s and other movement disorders, while improving Parkinson’s treatments through research.

Moving Day proceeds help bring quality care to more people with Parkinson’s, further Parkinson’s research, education and outreach initiatives. Moving Day raises awareness of Parkinson’s both nationally and in the local community.

Upcoming Events

Educational Events

Mindfulness Mondays - Mental Wellbeing

Each month, Dr. Rush invites you to slow down, breathe, and reconnect with yourself and your Parkinson’s community through a guided mindfulness practice. Together, we’ll explore simple ways to ground the body, calm the mind, and cultivate compassion and clarity that you can carry into your week.

Virtual
Fundraising Events

Moving Day Lexington

9:00 am to 12:00 pm EST
Free
Moving Day DC

Moving Day is an inspiring and empowering annual fundraising walk event that unites people around the country living with Parkinson’s disease (PD), their care partners and loved ones to help beat PD. Moving Day is more than just a walk. It’s a celebration of movement – proven to help manage Parkinson’s symptoms.

Leading up to the event, participants and teams fundraise to help the Parkinson’s Foundation provide vital resources and deliver quality care to more than 364,000 people living with Parkinson’s and other movement disorders, while improving Parkinson’s treatments through research.

Moving Day proceeds help bring quality care to more people with Parkinson’s, further Parkinson’s research, education and outreach initiatives. Moving Day raises awareness of Parkinson’s both nationally and in the local community.

Upcoming Events

Educational Events

Mindfulness Mondays - Mental Wellbeing

Each month, Dr. Rush invites you to slow down, breathe, and reconnect with yourself and your Parkinson’s community through a guided mindfulness practice. Together, we’ll explore simple ways to ground the body, calm the mind, and cultivate compassion and clarity that you can carry into your week.

Virtual
Science News

New Study Finds Promise In Treatment for Parkinson’s-related Constipation

Parkinson's Foundation Science News blogs

The most well-known Parkinson’s disease (PD) symptoms are movement-related — tremor, muscle stiffness, slow movement, trouble moving and walking. However, many people with Parkinson’s find non-movement symptoms — including sleep disturbances, depression, psychosis and constipation —more troublesome and disabling than movement symptoms. 

In Parkinson’s, a protein found in the brain called alpha-synuclein accumulates abnormally in the nervous system, forming clumps. These clumps lead to changes in the normal function of brain cells. Interestingly, alpha-synuclein clumps within the nerves of the gastrointestinal (GI) tract have also been linked to a decrease in the strength and coordination of the bowels, resulting in constipation. More than 60% of people with Parkinson’s suffer from constipation, and for most of those people it can be chronic, severe, and unresponsive to standard treatments.

The results of a new clinical trial published in the Annals of Internal Medicine show a possible treatment for constipation in people with Parkinson’s. The biotech company Enterin has developed ENT-01, a compound designed to act on nerve cells in the GI tract and prevent alpha-synuclein from clumping. An earlier study found that ENT-01 is not absorbed into the body, suggesting it acts only in the gut.

Constipation impacts more than 60% of people with Parkinson’s.

Study Results

Illustration of a stomach

The clinical trial enrolled 150 people with Parkinson’s and constipation, who were randomly given either ENT-01 or a placebo for 25 days. The results of the study showed:

  • People with Parkinson’s and constipation who received ENT-01 had a significant increase in the number of daily bowel movements and had better stool consistency as well as ease of stool passage.
  • There were no serious adverse effects of ENT-01. The most common side effects were nausea (experienced by a third of participants) and diarrhea (experienced by 20% of participants).
  • A small number of participants with psychosis also saw improvements in their symptoms; however, researchers note that the study was not designed to examine improvements in cognitive symptoms.

What does this mean?

In this trial, ENT-01 was shown to help people with Parkinson’s who experience constipation. The compound will undergo further clinical testing to examine the safety and effectiveness of long-term use before it can become available.

What do these findings mean to the people with PD right now?

People with Parkinson’s who experience constipation will not yet have access to ENT-01 and should talk to their doctor about current treatment options. Depending on the clinical trial process, ENT-01 may be a treatment option for the PD community in the next few years.

Can this drug also help with cognitive issues?

A small number of participants in this study who experience psychosis saw improvements in their cognitive symptoms. However, this study was not designed to examine these symptoms, so the Parkinson’s Virtual Biotech has designed a study that is. This new project will assess the potential of ENT-01 and how it may impact people with Parkinson’s who experience memory problems.

Through our collaboration with the Parkinson’s UK, the Parkinson’s Virtual Biotech, is fast-tracking the development of new therapies that could treat, and ultimately cure, Parkinson’s. ENT-01 is one of these new therapies.

Learn More

The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more about PD and the topics in this article through our below resources, or by calling our free Helpline at 1-800-4PD-INFO (1-800-473-4636) for answers to your Parkinson’s questions.

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