Tips for Daily Living

How to Spot Parkinson’s Vision Changes

Women wearing glasses

Our sensory perceptions help us navigate through the world. Changes to senses, such as vision, can sometimes progress alongside Parkinson’s disease (PD). In some cases, a reduced sense of smell can even precede a PD diagnosis by several years. Identifying and addressing vision changes early can foster continued independence and can also prevent injuries and falls.

This article is based on Sights, Sounds and Parkinson's, a Parkinson’s Foundation Expert Briefing webinar exploring PD and sensory changes, presented by Ali Hamedani, MD, MHS, Professor of Neurology, Divisions of Neuro-Ophthalmology and Movement Disorders, Perelman School of Medicine at University of Pennsylvania — a Parkinson’s Foundation Center of Excellence and PD GENEration enrollment site.

Parkinson’s and Sight

Sight guides many of our daily activities, including reading, texting and driving. In fact, about 40% of our brains are devoted to vision — making it our most dominant sense.

While vision changes are part of aging, Parkinson’s can also impact sight. The American Academy of Ophthalmology recommends a complete eye exam every year or two after 65. Your eye doctor might also refer you to a neuro-ophthalmologist — a neurologist or ophthalmologist with expertise in how neurologic issues impact vision.

While everyone experiences Parkinson’s differently, the disease can impact vision in many ways, most of which are treatable. Though exercise in general can improve many symptoms of Parkinson’s, eye muscles generally can’t be strengthened through exercise.

5 Visual Symptoms Common to People with PD

1. Dry eyes affect people with Parkinson’s due to decreased blinking, and certain PD medications such as amantadine. The condition can be uncomfortable, painful and deceptive.

Some might sense an actual feeling of dryness, while others experience blurry vision, increased glare or sensitivity to light. Soreness, stinging, itching or redness can accompany dry eyes. For some it can feel as if sand is in the eyes. Others may experience watery eyes from dryness.

Dry eyes can even be asymptomatic. Some people with Parkinson's learn from their ophthalmologist they have the condition. Even those without symptoms should take it seriously. Untreated, dry eyes can scar the outer layer of the eye. To treat dry eyes, try preservative-free, over-the-counter eyedrops or artificial tears. Avoid anything designed to reduce redness — this can irritate or worsen dry eyes.

Nighttime dry-eye drops are thicker than daytime drops, as our eyes tend to dry out during sleep. Use artificial tears from four to six times a day. If you take carbidopa/levodopa, try using artificial tears at the time you take your medication. If needed, your eye doctor can offer prescription eye drops or procedures to boost lubrication.

While good for everyone, taking part in an active lifestyle — moving and looking around, exercising and engaging with people — also boosts blinking. Be mindful of too much television or screen time, which can worsen dry eyes.

Blepharitis, eyelid inflammation due to oil and bacteria, can precede or accompany dry eyes. Use warm compresses to ease irritation. Soak a clean washcloth in warm water, then place it over your closed eyelids for 5 to 10 minutes to loosen oils and clean the area.  

2. Double vision, seeing two of the same thing — something up to 30% of people who live with Parkinson’s experience — can occur due to:

  • An eye problem such as dry eye, cataracts or the need for eyeglasses.
  • Individually healthy eyes that point in slightly different directions.

3. Convergence insufficiency — double vision when focusing on nearby objects, such as reading a book — can emerge or worsen after deep brain stimulation (DBS).

A special type of eyeglass lens, called a prism, can help resolve double vision. Wearing an eye patch as needed can help, too.

Man with glasses reading a book

Reading — a complex and demanding task — demands clear vision. Anything affecting vision, including dry eyes or double vision, impacts reading ability.

A person with Parkinson’s can benefit from having separate distance and near glasses, rather than bifocals or progressive lenses — which limit the amount of space someone is able to look through to read. People with PD have difficulty generating quick and accurate eye movements in small spaces.

4. Depth perception — understanding where things are in space — can be another common visual PD challenge. Each of our eyes only sees an image in two dimensions. Our brain combines those images to produce a three-dimensional map of the space around us.

Depth perception difficulty can happen if one eye is impaired, whether from a cataract, the need for glasses or something else. Double vision can also impede depth perception. Depth perception challenges can trigger freezing, a Parkinson’s phenomenon that feels as if your feet are temporarily stuck to the floor. This tends to happen in narrow spaces, such as doorways or hallways.

Depth perception issues are also among the Parkinson's-related visual symptoms that can affect driving. People with Parkinson's often must stop driving at some point, but usually not solely due to vision issues. Coordination challenges, delayed reaction time and cognition impairments can all contribute to the need to retire a driving license.

Impaired depth perception is not something that can be readily fixed with either medication or glasses. Management includes good lighting — essential for nighttime bathroom visits — and visual cues, such as a portable laser device that shines a line for you to step over.

5. Visual hallucinations, seeing things that aren’t there, is something about half of people who live with Parkinson’s will experience during their journey. These and other types of PD-related hallucinations can worsen with certain medications.

Research points to reduced visual function as a possible hallucination risk factor.  There is a constant balance in the brain between external and internal visual stimulation. An imbalance between visual information coming from the outside world and information stored in the brain, such as images from previous memories or dreams, can drive hallucinations.

Hallucinations can include the illusion of a presence or movement in the peripheral vision, or the sense of a brief shadow or passing shape, such as an animal or child. Visual hallucinations can also be distressing. It is important to report even mild hallucinations to your Parkinson’s doctor, who might adjust PD medications or offer targeted treatment.

PD and Other Sensory Changes

Although rare, involuntary eye closure — or eyelid-opening apraxia — can also impact some people with PD. Wearing a headband around the forehead can help keep eyes open, as can wearing goggles. Your neurologist might also consider adjusting your medications. Blepharospasm — an involuntary squeezing and closing of the eyes — can be treated with regular botulinum toxin (Botox®) injections. 

Though less studied than vision difficulties, some research suggests people who live with Parkinson’s can experience reduced hearing, compared to people without PD. This can include difficulty telling where sounds are coming from — such as the direction of an approaching car. Hearing aids or assistive listening devices can help.

PD can also impact the sense of smell. Taste and smell are linked. A diminished sense of smell might lead to a reduced appetite. Be sure to eat a nutritious, balanced diet — a key to maintaining good health with Parkinson’s.

 

Call the Parkinson’s Foundation Helpline at 1.800.4PD.INFO (1-800-473-4636) for expert care referrals and answers to all your Parkinson’s disease questions.  

Raise Awareness

How to Advocate for Your Mental Health with Parkinson’s

advocate mental health

Parkinson’s disease (PD) can greatly affect your mental health and well-being. An array of non-movement symptoms related to Parkinson’s can impact how you feel. It can be overwhelming to try to address these mental health concerns.

Care partners can also experience negative mental health effects. The stress and unpredictability of Parkinson’s may take a toll on your mental health.

When managing Parkinson’s, utilize this article as a mental health guide to help you advocate for mental health; for yourself and your loved one. Top mental health concerns related to Parkinson’s can include:

Advocating for Your Mental Health

It can be scary to address your mental health. Sharing your experiences may feel vulnerable. There are many ways to share your story and find resources for your emotional well-being. Here are some signs that you may need help with your mental health:

  • Feeling tired even when you get a good night’s sleep
  • Being easily irritated
  • Not enjoying things you have enjoyed in the past
  • Lack of motivation
  • Feeling hopeless

These are signs that you may need some extra support. The next step is to share your needs with a healthcare professional. You can talk to your practitioner or a mental health professional directly about what is the best option for you.

Advocating for Your Loved One’s Mental Health

Trying to advocate for a loved one’s mental health may feel uncomfortable and awkward. It is normal to feel worried about invading their privacy or doing the wrong thing. Many times, a person may just need to be shown support and love when they are struggling. Here are signs that your loved one might need help:

  • They stop answering your phone calls or texts
  • Their mood and behavior change
  • They make comments about feeling hopeless
  • They stop doing things they have enjoyed in the past
  • They ask for your help directly

What does advocating for another person’s mental health look like? Encourage them to seek help. Support them in the process. Share resources and celebrate their courage to talk about mental health.

How to Help Your Loved Ones Advocate for Themselves

It is not your responsibility to carry your loved one’s struggles, but there are many ways to support and encourage them in the process of getting help. Offer to go with them to their appointments. Show how thankful you are for their help as a care partner. Many people just need to know they are not alone in their mental health struggles.

It can be difficult to start a conversation with a loved one about their mental health. Here are some questions to ask a loved one struggling with their mental health:

  • Would you like to talk about your mental health?
  • How are you feeling?
  • What are some things you can do to improve your mental health?
  • How can I support you?

Help Promote Mental Health Awareness

advocate mental health tips

Many people are afraid of being judged if they bring up mental health, however it is critical to advocate for your mental health and for a loved one’s mental health. There is also a need to remove the stigma around addressing mental health, and advocate for mental health awareness — especially around a disease that affects cognition, mood and sleep.

Here are ways you can promote mental health:

Mental Health Resources

Mental health can be a difficult topic to address, but it is worth advocating for your needs. There are many ways to advocate for your mental health, your loved one’s mental health, and mental health awareness in general.

Not sure where to start? Contact our Helpline at 1-800-4PD-INFO (1-800-473-4636) for help finding mental health resources and wellness events taking place near you.

Raise Awareness

Parkinson’s Pride: Helping the LGBTQ+ PD Community

parkinsonspride-blog

Social isolation is one of many significant challenges for people with Parkinson’s disease (PD) who are also part of the Lesbian, Gay, Bisexual, Transgender, Queer or Questioning plus other sexual identities (LGBTQ+) community.

“Parkinson’s Pride: Engaging the LGBTQIA Community,” is a first-of-its-kind program funded by a 2021 Parkinson’s Foundation community grant. The program aims to address the community’s unique needs while shaping a new narrative around the group’s shared identities.

“The Parkinson’s Foundation believes in health equity for all in the Parkinson’s community,” said Alyssa Boyle, administrative and community engagement coordinator at the Parkinson’s Foundation. “We are proud to provide funding through community grants like this one that strengthens support for LGBTQ+ people with Parkinson’s.”

Based at Parkinson’s Foundation Center of Excellence Beth Israel Deaconess Medical Center in Boston, MA , “Parkinson’s Pride” hopes to model effective care and support structures for LGBTQ+ people in PD healthcare settings.

“This grant supports a bold and ambitious project that we hope will lead to not only strong community for participants, but will also inform better care for LGBTQ+ people with Parkinson’s across all of the Foundation’s Centers of Excellence,” said Lissa Kapust, project lead and social worker in the Cognitive Neurology department of Beth Israel Deaconess Medical Center.

Of the limited LGBTQ+ Parkinson’s studies, little is currently known about PD experience, care and treatment needs. Researchers have found that discrimination and stigma may hinder knowledge, diagnosis and involvement with multidisciplinary approaches to treatment.

“Sparse literature on LGBTQ+ and PD points to worse health outcomes and unique risks,” said Lissa. “These often underserved individuals may suffer from inadequate care and attention from the medical sphere, with higher rates of depression, anxiety, isolation and body image issues compared to the general population. Understandably, PD can exacerbate these issues.”

Program activities aim to help combat these known challenges through monthly group discussions and workshops. The program helps “bring light in the darkness” for participants, helping them integrate various facets of their identities and build community. A variety of topics are covered, ranging from managing finances, planning for long-term housing, social support, intimacy issues and nutrition planning.

In addition to monthly meetings, participants have the option to engage in workshop to improve overall wellbeing, including writing, music therapy and exercise. Expert speakers provide specialized education and resources, including navigating disclosure, trust and factors that can challenge engagement with care providers.

Participants will shape a “Parkinson’s Pride” virtual celebration event, in conjunction with June Pride celebrations across the U.S. “It is intended to bring our community together, highlighting our accomplishments and promoting positive social media images of people with PD from the LGBTQ+ community,” said Lissa.

Hyam K is a “Parkinson’s Pride” participant who believes in the program’s goal. "As an out and proud gay man now in my 60s, I've long reflected on how our LGBTQ+ community has successfully ushered in a new period of acceptance and understanding through hard-fought decades of enlightened education and visibility,” said Hyam. “It's therefore natural, in that tradition, that I now regard “Parkinson's Pride” as extending our historic continuum even further, by expanding recognition, appreciation and opportunities for those of us with PD."

The hope is that “Parkinson’s Pride” can be replicated in other Parkinson’s Foundation Centers of Excellence. The grant will also fund a video that will highlight key components of the program and several participant interviews.

With the help of participant engagement, Beth Israel Deaconess will create a preliminary set of provider guidelines for LGBTQ+ cultural competency in Parkinson’s.

“Our view could be limited to our location. However, the Parkinson’s Foundation has expanded our perspective, allowing us to develop personal relationships that extend far beyond Boston,” said Lissa. “The effort to make lives better for people with Parkinson’s is energized by this larger reach.”

Lissa is thankful for the Foundation’s support. “The backing from the Parkinson’s Foundation is essential for the success of the program; the reputation of the Foundation has a positive influence at so many levels. The Foundation’s logo on all grant communications conveys the mission and values that are at the core of the work.”

“Parkinson’s Pride” is offered by Beth Israel Deaconess Medical Center and the LGBT Aging Project at Fenway Health, with support from the Parkinson's Foundation. For more information or to enroll, please contact Mikayla Hyman at mhyman@bidmc.harvard.edu or 202-495-3327.

Learn more about Parkinson's and the LGBTQ+ community.

My PD Story

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People with PD

Ellen Bookman

I was diagnosed with Parkinson’s disease (PD) in 2018. Four years prior to that, I suffered through shoulder and back pain, foot cramps and hand surgery that didn’t heal — all on my left side. I was also suffering from depression, fatigue and an overwhelming sense of apathy. 

During a regular check-up, I mentioned my symptoms to my general practitioner who suggested I see a neurologist. Almost on the spot, she diagnosed me with PD and recommended that I see a movement disorder specialist. On January 29, 2018, my life changed forever as Lee, my husband, and I sat in the doctor’s office where the original diagnosis was confirmed. I was 52. 

Following the diagnosis, I felt paralyzed and sat on the couch numb. Then, I got a call that changed my life ― a recommendation to a PD boxing group. I have never exercised consistently. I never felt the endorphin rush people talk about when working out, but somehow I got myself into the gym and started boxing with LDBF Boxing for Parkinson’s (Pdboxing.org).

LDBF is my new village. I am in the best physical shape of my life. It’s more than boxing. It’s a camaraderie shared between the boxers, trainers and volunteers — all of whom contribute to my emotional healing on a daily basis.

I began to box in April, three months after the diagnosis. I did not go willingly. I hid behind the bags out of breath and demoralized. Then one day, I started to enjoy the workouts and sought out more challenging classes. LDBF’s “Inside the Ring” class taught by trainer Bryan Jensen fit the bill — a perfect mixture of inside the ring drills, sparring and floor work focusing on memory, balance and cardio.

My advice to someone newly diagnosed:

  1. Don’t wait. Find a boxing program. 
  2. Be your own advocate. Make sure you feel comfortable with your doctor.
  3. Find a mentor. I am developing an official young-onset PD mentorship program.
  4. Dig deep for the courage to reach out.
  5. Recognize there will be good days and bad. 

In addition to boxing, I also participate in the Parkinson’s Foundation Moving Day Atlanta event held every fall at Piedmont Park, as well as the special event Good Vibrations. Not only are these events fun, but they remind me and so many others that we are not alone.

FIND YOUR NEAREST MOVING DAY

My PD Story

heather_wolynic
People with PD

Heather Wolynic

I was diagnosed officially with Parkinson’s disease (PD) this past summer. I knew something was wrong with me for at least four years. I thought maybe since I'm in my 40's, it's normal to feel this fatigue. I taught art and design 13 years. I was happily married, the mother of three sons and worked part-time artwork and graphic design on the side. I lived a very healthy and socially active life.

My fatigued worsened. I noticed I was often off balance, my speech became impaired and my memory was awful. There were times during teaching when my speech would slur, and I would forget everything prepared in my lesson plan. It was embarrassing, but I was thankful to have students that loved me. I developed ulcers in my mouth, so I could only eat broth. My hair was falling out. My blood pressure was uncontrolled. I would wake up in the morning and it was 60/40 and I felt like I would pass out. Then by afternoon, I would get blinding headaches and my blood pressure would skyrocket to 160/105. I was taken medicine to bring my pressure up and then down.

The symptoms started piling up. I kept pushing myself until December 2017. I made it to Christmas break, and I thought resting would help me feel better. I began to realize this wasn't in my head this was real. I spent the entire Christmas break in bed. I knew something was wrong. There were days I didn't even have the strength to shower. I remember one night I crawled out of the shower because I was so weak, I couldn’t stand to turn the shower off. I had to yell for my husband to help me.

So, I started on the path of finding a doctor that would figure out what was wrong with me. No matter what type of physician I saw, they dismissed my symptoms. I was told it was anxiety-induced stress from being a working mother and that I should reduce the stress in my life. I was even told by a neurologist who was the head of the neurology department that if I had Parkinson’s, I would not be able to put my make up on so precisely. If you knew me, applying my black winged eyeliner was like tying my shoes. I was told that I was having a nervous breakdown, had an autoimmune disease, Epstein Barr virus, an infectious disease, sleep apnea, chronic fatigue syndrome and others.

Doctors would look at me and say I was too young for Parkinson’s or that women rarely have it. Everyone said, “Parkinson’s is an old man disease. How could you have that? You look fine." I found out people have a predisposed opinion of what the disease should look like, which is not a young woman in her early 40s who wore makeup.

I began to question myself. I wondered if I was making this up, maybe this is a nervous breakdown. Until one night my tremors got so bad, they wouldn't stop. I couldn't even speak. Finally, my local neurologist put me on carbidopa-levodopa and the tremors ceased.

Truth is several clinical studies have demonstrated that PD is less common in women than in men. It is the second most common neurological-disease next to Alzheimer’s and an estimated 10 million people worldwide have Parkinson’s.

Now here's the shocker, only 4% of both women and men are diagnosed under age 50! So why are women not receiving adequate care and research for the disease?

Researchers at the University of Pennsylvania School of Medicine found that women with Parkinson's appear to face a disadvantage: Women are ingrained with the ability to nature and care, so sometimes we go without care because we are so worried about everyone else. They're also much less likely than men to have caregivers, that's probably because women often outlive their most likely potential caregiver.

The Parkinson’s Foundation started the first issued patient-centered research agenda for women living with PD. This agenda was created to address the research gap found in the care and needs of women with PD. Together, we can address the needs of women with PD. We can win this battle!

 

Learn more about Women and Parkinson’s

My PD Story

shirley_bealor
People with PD

Shirley Bealor

Shirley Bealor drives 120 miles roundtrip to see her movement disorder specialist and 80 minutes roundtrip to her Parkinson’s disease (PD) support group.

More than 10 years ago Shirley and her partner, Elizabeth, visited Calvert County, MD, on a road trip and decided to move there. “Everything was going great,” Elizabeth said. They loved the bay, the seafood and the small-town feel. “Shirley then started having some tremors and tale-tale signs of PD.” It wasn’t long before she was diagnosed with Parkinson’s.

Shirlely’s research led her to the Georgetown Movement Disorders Program, a Center of Excellence, where she has received expert care from day one. This was also where Shirley had deep brain stimulation (DBS) surgery in December 2014.

While Shirley saw improvements after DBS, she still lives with a myriad of PD symptoms. The most visible is her worsening gait and posture. She uses a walker to maintain balance and support, but still falls. She finds other PD symptoms even more frustrating.

“My eyelids don’t blink enough thus I had to have plugs placed in my tear ducts to help maintain moisture,” Shirley said. “The invisible symptoms are actually the most frustrating. Food doesn’t move through the digestive system like it used to, swallowing, choking, speech changes, loss of bladder and bowel control – these are difficult to treat and make daily life especially challenging.

Shirley also has dyskinesia and lately, a decrease in energy, but she’s doesn’t let any of it slow her down.   

One day in the Georgetown doctor’s office Shirley and Elizabeth saw a poster for Moving Day® DC. They signed up and created Team Tenacity, the name stemming from Shirley’s stubbornness and determination to fight PD.

The retired principals put their pottery hobby to work. Shirley asked potters from across the nation for a pottery donation. They received more than 60 pieces of original, hand-made pottery. “The UPS man hated us,” Elizabeth said. Between pottery sales and donations they raised more than $10,000 for the fight against Parkinson’s.

This year Shirley doesn’t have as much energy and set out to do something less labor intensive. She applied for a NPF grant to create a local PD support group that belongs to the county. NPF agreed, and awarded Shirley the grant. After receiving NPF Parkinson’s educational booklets, Aware in Care kits and brochures, they set out. So far they have:

  1. Applied and received NPF community grant to create the Calvert County PD Support Group.
  2. Met with the Office of Aging, CEO and neurologist in the county hospital, all of which are spreading the word.
  3. Searched for their Parkinson’s community by dividing the county into three sections and hosting meetings at each one. 
  4. Fielded calls and met with people with PD and caregivers on a one-on-one basis to tell them about the support group.

They are now planning to find a central location to host meetings and build their base.

At the first group meeting, three women showed. Two had never met anyone else with Parkinson’s. “They were overwhelmed by having more information, hearing my story and meeting each other. They were almost in tears. It just made it worth everything,” Shirley said.

Shirley and Elizabeth have done their homework by participating in support groups in other counties to see what makes them successful. Their goal is to bring the people of Calvert County new PD resources, speech therapists and group exercise classes, but most importantly support and a sense of community.

Just because Shirley and Elizabeth are starting a support group doesn’t mean they have forgotten about Moving Day® DC. They are currently in the thick of Team Tenacity fundraising. “I like to see how many people are there, and that are just so dedicated – from the volunteers to the care partners who are there with loved ones. Their dedication assures and moves me,” Shirley said.

Shirley and Elizabeth want you to spread the word of the Calvert County PD Support group. For more information visit www.teamtenacity.org or call 410-257-1736. Learn more about Moving Day® DC or donate to Team Tenacity. 

My PD Story

diane_s
Care Partners

Diane S.

My husband Jay and I have been married for more than 50 years. We’ve had a satisfying and happy life, raising our family in Southern California. I worked in graphic design and, later, became a marriage and family therapist, while Jay was a professor of art at several community colleges and painted all his life. He also curated art exhibitions as a profession.

In 2009, I noticed Jay wasn’t himself. It started when he stiffened and was unable to complete a kayak lesson I surprised him with for his birthday. Soon, I saw his hands were shaking and he told me that he had trouble concentrating at work. Jay made the decision to retire, a few years earlier than we both expected, because he felt too challenged by grading papers and maintaining his focus in class.

We sought medical advice and Jay was diagnosed with Parkinson’s disease. Not surprisingly, this diagnosis immediately changed our lives and altered the course of our future.

Cats and Strangers: Unexpected Symptoms of Parkinson’s Disease

Several years after his initial diagnosis, when his neurologist was trying to find the right combination of medications to reduce the impact of the typical motor symptoms of Parkinson’s disease, tremors and rigidity, Jay’s Parkinson’s progressed in an unexpected way. He started seeing black cats all over the house that were not really there.

He would tell me about seeing groups of people in the living room, particularly at night. A man he dubbed “Big Boy” slept in our bed and, sometimes, Jay felt he needed to physically confront him, which could be scary. On other days, he believed his brother was in the room with him, and they would talk the entire afternoon away.

Jay often has trouble recognizing me. He looks right at me and asks, “Where’s Diane?”

Beyond seeing things, Jay experiences delusions. When I’m working at the computer, he is paranoid that someone (not me) is using it to access our financial information. The overwhelming worry causes me frustration and, sometimes, I leave the room to end the discussion. Occasionally, Jay’s brother or our daughter can convince him that our money is safe.

I now know that Jay’s hallucinations and delusions are the tell-tale symptoms of Parkinson’s disease psychosis (PDP), a common non-motor aspect of Parkinson’s disease. When Jay’s neurologist told me that more than half of all patients develop these symptoms, I was very surprised because I expected only motor control issues.

Jay’s doctor was impressed that we even reported the delusions and hallucinations because most patients and their caregivers don’t, possibly because it’s embarrassing to confide that your partner is acting “crazy.” To some there is stigma associated with seeing things that aren’t there and believing things that aren’t true. And who would guess that psychosis is part of a motor disorder? I certainly didn’t, but I’m glad I talked to Jay’s doctor because now we work together to manage the condition as best we can.

Unfortunately, there are no FDA-approved treatment options right now for PDP, though one may be on the horizon.

Parkinson’s Disease Psychosis and Me

Parkinson’s disease psychosis isn’t just about the patient, but also about the person who cares for them. I worry about leaving Jay alone, even to run to the grocery store, because his hallucinations and delusions are increasing in frequency. He gets anxious when he’s alone, so I call him on my cell phone, frequently, to reassure him that I’ll be back shortly.

Once, I left for just an hour and on returning, I discovered that Jay was in the hospital. Convinced he was late for a party, he had left the house and tripped down our concrete steps, suffering deep abrasions. A neighbor called the paramedics, who took him to the ER, which was distressing and embarrassing for both of us.

In order to look after Jay, I’ve dramatically reduced the time I spend maintaining my therapy practice and I spend much less time on my hobbies of gardening, yoga, and playing the cello.

It’s hard to ask for help with PDP. My adult daughter speaks or texts with me every day and comes down from the Bay Area when she can, but I don’t want to burden her. There are a few support groups in the area, but it is often hard for me to attend. Even though my friends understand that Jay is not well, they really don’t understand how his hallucinations and delusions impact us.

That’s why I’m sharing my story. Parkinson’s disease psychosis is not just a burden for the patient, but also for the caregiver. I hope that by educating others about PDP, I can help people who are in the same situation realize they are not alone.

I look forward to the day when Jay and I can find better relief for this challenging condition.

Visit our care partner resources for more information on caring for someone with advanced stage PD

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