Raise Awareness

Tips for Daily Living: Building Your Mental Health Team

Couple sitting with a counselor

Addressing movement symptoms in Parkinson’s disease (PD) is often the first step to improving daily life and overall well-being. Attending to mental health is equally as important for quality of life, especially given that stress and anxiety can worsen PD movement symptoms.

Findings from our Parkinson’s Outcomes Project, the largest clinical study on PD, uncovered that mood symptoms, such as depression and anxiety, can have a greater impact on the health of people with Parkinson’s than movement issues.

Parkinson’s mood symptoms are often intertwined with everyday life challenges and the emotions of coping with a PD diagnosis. Whether or not you are experiencing depression and anxiety, recognizing your individual emotional needs, and building a strong support network that includes mental health professionals, is part of a comprehensive plan to live well with PD.

This article accompanies our virtual round-table conversation, Building Your PD Mental Health Team, which is part of our Mental Wellness Series. In this article, we highlight tips that can help you build a support team for your unique mental health needs.

  • Reflect on your unique emotional journey.
    Take time to acknowledge the wide range of emotions that can come with PD — from sadness, grief and anger to relief, gratitude and hope — sometimes all at the same time!

    As your emotional needs change throughout your PD journey, so will the people and tools you rely on. Make a list of your mental health goals and concerns. Explore new and different types of support. Reaching out for help can seem scary and overwhelming but it is often an important step to getting the support you need to feel better.

  • Foster positive connections.
    Surround yourself with people who will listen, uplift and encourage you when you need them. Look for support among your friends, family and community.

    Creating connections with others on a similar journey can remind us we are part of a larger, resilient community and keep us moving forward. PD Conversations is an online discussion group where you can discover a network of support. Ask your healthcare team or the Parkinson’s Foundation Helpline at 1-800-4PD-INFO (1-800-473-4636) about local support groups and explore events offered by your nearest Parkinson’s Foundation chapter.

  • Rely on professional therapy.
    Psychologists, professional counselors, clinical social workers, marriage and family therapists are trained mental health providers who can offer strategies to ease stress and build coping skills. For example, a therapist trained in cognitive behavioral therapy can help you develop tools to change behaviors and thoughts that impact your emotional health.

    Keep in mind that therapists are trained to listen and provide nonjudgmental feedback that both the people living with PD and care partners can benefit from.

Does your anxiety and depression last longer than a few weeks or impact your daily life?

Anxiety and depression are treatable. Talk to your healthcare providers to find the treatment option that works best for you. Call our Helpline for referrals at 1-800-4PD-INFO (1-800-473-4636).

  • Find the right therapist.
    Mental health providers can be in short supply depending on where you live or what type of insurance you have. Be persistent and consider virtual sessions if you are unable to find a therapist in your area.

    It may be difficult to find a therapist who is familiar with PD, but those who are specialized in chronic illness, grief, anxiety and depression can often address common feelings and experiences of living with a PD diagnosis

    Look for a therapist who inspires feelings of comfort and confidence. Don’t be afraid to consider a different therapist if the relationship or chemistry doesn’t work for you. Your doctor, healthcare team, support group, friends or family may be able to offer referrals. The Parkinson's Foundation Helpline 1-800-4PD-INFO (1-800-473-4636) can also provide information on therapy professionals in your community.

  • Consider medication for mood.
    Sometimes people with PD need medications to improve depression, anxiety and other mental health challenges just as they do for the treatment of movement symptoms. Neurologists, psychiatrists, psychiatric nurse practitioners or physician assistants are among the medical providers who can help find the right mood medication for you.

    An individualized approach that includes a combination of the right medications, counseling, exercise and social support has been found to be the best approach to supporting mental health.

Learn more about Parkinson’s Medications

  • Make necessary lifestyle modifications.
    Exercise is medicine for PD. Not only is movement vital to managing movement symptoms (such as balance, strength and mobility) and overall disease progression, research has found that increasing physical activity and creating a regular exercise plan can improve depression and anxiety.

    Additionally, regular social engagement, relaxation time and non-PD-related activities help promote a healthy balance.

Tips for Daily Living

How 6 Social Workers Are Helping People with Parkinson's

Six social workers for social work month

Many people don’t realize just how much a social worker can help them because the profession is so diverse. Social workers can be found in many settings including hospitals, mental health care facilities, long-term care facilities, veteran centers and non-profit organizations. Although there are many kinds of social work, members of the profession all share common core values such as service, social justice, worth of the person and the importance of human relationships.

When it comes to living with Parkinson’s disease (PD) or helping a loved one, social workers can often provide counseling in clinics, leading support groups, engaging in research and more. 

March is Social Work month. In celebration, we are highlighting social workers who break barriers in the PD community and how they can help you navigate Parkinson’s:

1. Social workers connect you to community resources.

Emily Hall headshot

As the Southeast Parkinson’s Disease Research, Education, & Clinical Centers (PADRECC) Senior Social Worker at the Central Virginia VA Healthcare System, I break barriers in the Parkinson’s community by trying to connect the VA and available community resources for our veterans and their caregivers to ensure that any and every resource is being utilized to address their whole health needs. 

As part of our Interdisciplinary Clinic Care Team, I work to address any psychosocial barriers that may be impacting the veteran’s ability to participate in any of our team’s recommended medical or therapeutic services. We assist with addressing barriers to care by completing assessments for utilization of VA-issued iPad devices to bring therapists into the home for those unable to afford their own smart-devices and have difficulty leaving the home for face-to-face appointments.

–  Emily Hall, LCSW, Southeast PADRECC Senior Social Worker, Central Virginia VA Healthcare System

Read More: Veterans & Parkinson’s


2. Social workers help ensure that your voice is heard in Parkinson’s research.

Lance Wilson headshot

As the social worker, education and outreach coordinator for Jefferson Health's Parkinson's Disease and Movement Disorders Center, I break barriers by ‘showing up’ and amplifying the voice of individuals who are not in the room.

I recently had the opportunity to serve on a Patient Advisory Board where I was able to make sure those missing from the table had an advocate to keep them in mind as policy and programming was being created. Working with this population directly grants me the privilege to hear from those impacted by Parkinson's care and hear what they feel is most important, and I get to bear witness and advocate on their behalf.

– Lance M. Wilson, MSS, LSW, C-SWHC, ASW-G, Social Worker / Education & Outreach Coordinator, Jefferson Health's Parkinson's Disease and Movement Disorders Center

Visit our Join A Study page


3. Social workers provide ongoing support through palliative care. 

Adriana González headshot

When the opportunity came to start a neuro-palliative clinic, I was quickly on board and ready to work in collaboration with a neuro-palliative physician to meet the ongoing needs of people living with Parkinson's disease. By walking this PD journey alongside them we could be that extra layer of support to help them avoid crisis.

As a team made up of a physician, social worker, chaplain, and nurse case manager, we worked together to break the barrier of fear around "palliative care" and brought some peace to many of the anxieties experienced by people with Parkinson’s. Utilizing the palliative care lens enabled us to have difficult conversations, support families in documenting their wishes to ensure quality of life all the way through to their end-of-life experience.

– Adriana González, LCSW, Parkinson & Other Movement Disorders Center, UC San Diego Department of Neurosciences

Read More: Planning Ahead


4. Social workers organize and lead support groups.

Haejin Ban headshot

As Director of Care Lift Corp, which provides advocacy, education and support for care partners, I break barriers in the Parkinson's community by connecting people with Parkinson’s and their care partners whose first language is not English with Parkinson's Foundation programs and resources. Care Lift has monthly support groups in Korean for the people with Parkinson's and their care partners — in-person in Metro Atlanta and virtually nationwide.

– Haejin Ban, LMSW, Parkinson’s Foundation Ambassador; Director, Care Lift Corp

FIND LOCAL RESOURCES: CONTACT OUR HELPLINE


5. Social workers help plan educational programs about Parkinson’s. 

Elaine Book headshot

Sometimes barriers exist because of unintentional ignorance of facts...a lack of information or knowledge. To me, part of breaking barriers as a social worker is done by increasing awareness. Next month, our team will be holding an awareness event in our center, educating people about PD as well as highlighting what the person with PD and their families can do to achieve wellness while living with PD. Breaking barriers to live a full life!

– Elaine Book, MSW, RSW, Clinic Social Worker, Movement Disorders Clinic, Djavad Mowafaghian Centre for Brain Health, Pacific Parkinson's Research Centre

Explore our in-person and virtual events


6. Social workers create programs for special populations within the Parkinson’s community.

Lissa Kapust headshot

As the coordinator of WellnessWorks programs at the Center of Excellence at Beth Israel Deaconess Medical Center, I break barriers by creating and launching programs for people with PD and care partners that go beyond the pill bottle. A recent Parkinson’s Foundation-funded program, “Parkinson’s Pride” reached out to individuals identifying with the LGBTQ+ community who have Parkinson’s, offering an opportunity to share experiences, network with others around the country and learn about resources. 

One participant described “Parkinson’s Pride” as a powerful, “life-changing” experience. Parkinson’s Foundation community grants provide a yearly challenge for me to think outside the box, to dream about bold programs and then have the good fortune to implement them. 

– Lissa Kapust, LICSW, Health and Wellness Program Coordinator, Palliative Care Champion, Parkinson’s Center of Excellence at Beth Israel Deaconess Medical Center

Read More: LGBTQ+ & Parkinson’s

Learn more about how social workers can help you navigate a new Parkinson’s diagnosis in our podcast episode, How Social Workers Can Help Ease Anxiety About the Unknown.

Raise Awareness

Mental Wellness: Addressing Thinking Changes in Parkinson's

Husband frustrated while looking at laptop and wife comforting him

Parkinson’s disease (PD) changes the brain, which can impact the whole body. While slowed movement and stiffness are among the more familiar PD symptoms, Parkinson’s can also affect cognition — the way someone thinks, how they learn, make decisions, approach and solve problems. Though some people notice thinking changes (also called cognitive changes) decades after living with PD, others can begin noticing challenges even prior to a diagnosis. 

Cognitive changes can be difficult to discuss. People sometimes fear that others will see or treat them differently if they open up about their thinking issues. Additionally, they may worry about losing their place in the family, livelihood or independence. Though challenging, recognizing and talking about cognitive changes can help you and your care team identify the best therapies and coping strategies to promote your mental well-being.

Our Mental Wellness Series is dedicated to mental health conversations. This article complements our virtual round-table conversation, Addressing Parkinson’s-Related Thinking Changes. This article can help you recognize, treat and cope with cognitive changes related to Parkinson’s:

Recognizing PD-Related Thinking Changes

Have you ever said, “don’t talk to me while I’m cooking,” or doing a specific task? While everyone struggles to some degree with multitasking, it is particularly difficult for people with Parkinson’s. Other tasks that rely on executive function, such as participating in group conversations, reading a book or balancing a checkbook, can also be challenging. 

Executive function is an umbrella term used to cover many cognitive skills that impact daily living. These skills include attention, focus and multitasking, as well as those involved in problem solving, planning and following multi-step instructions. These abilities help us accomplish everyday tasks and make important life decisions. Parkinson’s can also impact other cognitive areas, such as thinking speed, word-finding, language and speech, vision, depth perception and more. 

Addressing Cognitive Symptoms

Since Parkinson’s disease affects cognition, it can be hard to know whether memory and thinking changes are PD-related or due to normal aging, medication, stress, sleep issues, depression, anxiety or other health conditions. If you or a loved one suspect memory or thinking changes, talk to your neurologist. Sometimes, adjusting PD medications can help. Other times, effectively treating other symptoms and conditions can improve thinking issues. 

Exercise is a powerful tool to improve not only PD movement symptoms, but some non-movement symptoms such as changes in memory and thinking. Research shows that exercising regularly can improve concentration, information processing and overall cognition. Participating in a Parkinson’s-specific exercise class, going for a walk, taking a yoga or Tai Chi class or stretching can help to improve your cognitive function. 

Your neurologist might also refer you to other specialists, such as neuropsychologist or speech-language pathologist. These healthcare professionals offer specialized assessments and teach strategies to cope with thinking changes and improve daily living.

Self-care and support are important to a care partner's well-being at every stage of Parkinson’s. When a loved one is experiencing significant cognitive changes there is an increased risk of caregiver burnout

Prioritizing Mental Wellness Throughout Cognitive Change

Self-care, creative strategies and staying social can help you maintain your mental well-being while coping with thinking changes. These tips can help:

  1. Give yourself permission to feel grief. Our thoughts, memories and the way we think form part of our identities. Experiencing cognitive change can cause feelings of loss. Recognize and honor your feelings around these changes.
  2. Lighten your load. Accept help — whether with medication management, making your home safer or transportation. Even though it can be difficult, accepting help allows you to focus on other important tasks and activities.
  3. Lessen your stress. Research suggests stress can worsen movement and non-movement PD symptoms, including executive function and cognition. Exercise and mindfulness, the practice of being fully in the present moment, decrease stress and are linked to symptom improvement.
  4. Use strategies to compensate. Sticking to a daily routine and limiting distractions can make it easier to remember the essentials. Reminders on your smartphone or on a piece of paper in the right location can also provide useful cues to keep you on track. Other strategies include gathering all items needed for a task — preparing a recipe, for example — and putting them away as you go.  
  5. Stay engaged. Building healthy social connections can help keep cognition strong. Foster relationships with friends, family and members of your community. Consider finding a new support group to share your experience and connect with others. Call our Helpline 1-800-4PD-INFO (1-800-473-4636) to find a nearby group or visit PD Conversations, our online community.

Advanced Thinking Changes

As Parkinson’s advances, thinking changes can evolve from subtle changes to mild cognitive impairment (MCI) or even dementia — more severe thinking changes that can impact independence. Talk to your doctor about how to best manage advanced thinking changes. 

Research shows some medications used in Alzheimer’s disease may have benefits in Parkinson’s disease dementia (PDD), including donepezil, galantamine and the FDA-approved PDD medication, rivastigmine.

Helpful Resources

The Parkinson’s Foundation is here for you. Explore more of our mental wellness resources now:

Raise Awareness

Redefining Intimacy in Parkinson’s Disease

Wife with her arms wrapped around her husband sitting on the couch

Research shows that touch boosts physical and mental wellness — it can lower heart rate, decrease depression and anxiety, strengthen the immune system and relieve pain. For couples, touch communicates affection and acceptance, which plays an important role in supporting intimacy.

When people talk about intimacy in relationships, they commonly focus on sex; however, there are many types of intimacy, including emotional, intellectual, spiritual and physical intimacy. These are often interconnected and build upon one another. Physical intimacy — both sexual and non-sexual touch — helps promote connection and overall wellbeing.

Like everything else in a relationship, physical intimacy evolves as people change and new challenges arise. With Parkinson’s disease (PD), changing relationship roles, self-esteem issues, stress, medication side effects and PD symptoms — including movement issues, mood changes, urinary problems and fatigue — can influence sexual health and physical intimacy. Care partners also experience stress, depression, fatigue and other health issues over time that can impact physical connection.

Our new Mental Wellness Series is dedicated to mental health conversations. This article complements our virtual round-table conversation, Redefining Intimacy in Parkinson's Disease & Beyond, which features certified sex therapist Gila Bronner, MPH. The below tips can help you find new ways to build intimacy with your partner while navigating PD-related challenges:

1. Build Connection with Your Partner

Life’s pressures and the day-to-day stress of living with a chronic illness like PD can cause couples to drift apart. Look for ways to stay connected and continue growing together. Share your thoughts and feelings. Spend quality time together. Take a walk, make a date for coffee, read to each other, watch a funny movie or take dance lessons — anything that unites you as friends and reduces stress.

Discussing sex or physical intimacy issues can be uncomfortable and frustrating. Many couples need help navigating these conversations. Don’t be afraid to seek out counseling or join a support group, either together or separately. Call the Parkinson’s Foundation Helpline at 1-800-4PD-INFO (1-800-473-4636) to find a counselor or a support group.

2. Enjoy the Moment

Even just a minute of physical touch can boost “happiness” hormones, such as oxytocin and serotonin, and reduce cortisol and noradrenaline and other “stress” hormones that can cause anxiety and restlessness. Having expectations that physical touch will lead to a specific outcome can eliminate the pleasure of the experience, create anxiety or even lead to fear.

Rather than planning for a particular result, aim for connection and pleasure. Put on a few songs, take time to exchange gentle touch with your partner, such as caressing the face, arms or shoulders, and enjoy the experience — without any demands or expectations.

3. Broaden Your Horizons

It has often been said that comparison is the thief of joy. Defining physical intimacy in terms of what it means to others, what we have been told it should mean to us or by what it has meant to us in the past can diminish our own experiences.

If you and your partner are experiencing mismatched sexual desire, talk about it. Is it due to stress, fatigue, hormones, PD or another health issue? Sexual desire and activities change over the years for a variety of reasons.

Staying connected through touch is vital to a healthy, loving relationship. Try to meet each other where you are. Of course, if you are both on the same page, sexual activity doesn’t need to stop just because it can’t be the same as it used to be. You might need to adapt your techniques, explore modifications or even plan out those moments that go beyond sensual touch.

4. Discuss Intimacy with Your Healthcare Team

Many PD symptoms affect sexual health in men and women, as well as the ability to touch, be close, communicate or even concentrate. Some of these issues can be treated, but it can be difficult to know who to turn to for advice.

For people with Parkinson’s and care partners, talking to a medical professional they feel comfortable with is often the first step, suggests Gila Bronner. Your neurologist, primary care doctor or another healthcare professional can offer advice, treatment or refer you to the appropriate specialist, such as a urologist, sex therapist or counselor.

5. Be Aware of Medication Side Effects

Dopamine agonist medications sometimes used to treat PD symptoms can lead to impulse control and hypersexuality issues. People experiencing these issues are at risk of putting themselves or others in unsafe or unhealthy situations. If you notice these side effects, let the neurologist know right away, as these medications may need to be reduced or discontinued.

Other medications, such as those for high blood pressure or antidepressants, can also impact sexual function. Discuss any concerns over medication side effects or your sexual health with your doctor, who can recommend medication adjustments or appropriate therapies.

Helpful Resources

The Parkinson’s Foundation is here for you. Explore more of our mental wellness resources now:

Raise Awareness

5 Tips for Navigating Parkinson’s-Related Life Changes

Three women sitting on a bench by a lake hugging

Parkinson’s disease (PD) is life-changing. For some people, a diagnosis can be a relief — an explanation for ongoing, unexplained symptoms. Others might experience loss or grief. Some may not even begin to process a diagnosis until years later.

Coming to terms with a Parkinson’s diagnosis is often the first of many changes a person living with the disease will navigate. The path forward, what you expect in a day, in relationships or in the future, can be uncertain. These day-to-day uncertainties can bring about feelings of ambiguous loss (a type of loss without closure).

In January 2023, the Parkinson’s Foundation launched our Mental Wellness Series, featuring blog articles and webinars dedicated to mental health conversations. The below tips are adapted from our first virtual round-table conversation in the new series. These tips can help you begin to discover healthy ways to navigate change when it comes to Parkinson’s.

  1. Acknowledge your grief or feelings of loss.
    Throughout life, we experience change. Hobbies, careers, relationships and roles can further change and evolve with Parkinson’s disease. When uncertainty feels like a frequent companion, life can be challenging. Honor your feelings around these changes.
  2. Be kind to yourself.
    Whether you are a person with Parkinson’s or a care partner, it’s important to recognize the challenges you face and take time out for self-care. Mindfulness can be helpful in processing change and practicing acceptance, and exercise can ease depression and other PD symptoms.
  3. Lighten your load.
    Connection — sharing your worries, your trials and your joys, and listening to the experiences of others walking their own path with Parkinson’s — are good reminders that you are not alone. Whether talking to a trusted friend, reaching out to a local support group or connecting through an online discussion group, such as PD Conversations, you can begin to open up about your hopes and frustrations.
  4. Build a care team.
    People experience the symptoms of Parkinson’s differently. Empower yourself with information on the disease management therapies that work best for you. Team-based care relies on various healthcare professionals with PD expertise to manage your symptoms on an as-needed basis.
  5. Mental health care can help you work through change. This can include counseling and psychotherapy (talk therapy). Find reasons to hope.
    Radical acceptance is when you acknowledge and honor the reality of life, as it is, in the moment. It can free you to channel your energy toward activities in which you find purpose, meaning and hope. For some, volunteering holds promise and purpose. Others find hope and community through raising awareness or sharing their story. In the face of continual change, exploring healthy coping techniques and finding mental wellness strategies that work for you can help you stay connected to what matters most.

Helpful Resources

The Parkinson’s Foundation is here for you. Explore more of our Mental Wellness resources now:

Tips for Daily Living

Parkinson’s Q&A: How do I manage my time and mental health?

Woman looking out the window while writing in a notebook

Navigating Parkinson’s disease (PD) can feel like a never-ending learning curve. PD Conversations is a place to ask your Parkinson’s questions and connect with others living with the disease. In this blog series, we highlight a high-interest question answered by the Parkinson’s Foundation Helpline on PD Conversations.

Question: With Parkinson’s, how do you find enough time in the day to get everything done and not feel completely overwhelmed? I'm trying to find enough hours in the day to get in the exercise, the cognitive activity, my daily household chores, eating right and taking meds. Any tips?

A Parkinson’s disease diagnosis changes many areas of your life. You may have to readjust the way you work, rest and live. The changes that come with PD can cause emotional distress. Common PD symptoms may also include anxiety, apathy and depression. It is normal to have overwhelming feelings through all the changes of living with Parkinson’s, but there are resources to support your mental health and help you live well with PD.

We're here for you

Call the Parkinson's Foundation Helpline 1.800.4PD.INFO (1-800-473-4636) for answers to your Parkinson's questions.

Time management can sometimes feel like another task for your to do list, but it is crucial to create a schedule and plan that works for you and your unique PD needs. The change of lifestyle that comes with a Parkinson’s diagnosis is unavoidable, but there are ways to actively respond to this change.

Here are tips to help you manage your time:

  • Establish a consistent schedule. You may not always be able to plan for everything but creating a consistent schedule can help life feel less overwhelming. Talking to your doctor about the priorities and needs of your health is important for establishing a schedule.
  • Make time for rest. During the busyness of life, it can feel impossible to create time to rest. Setting aside time to slow down and relax can mean just 15 minutes of your day. Rest will look different for every person, but it should be a self-care activity that brightens your day and allows you to relax. Practicing self-care and rest can help to ease the overwhelmed feelings and bring mindfulness to your day.
  • Create goals for what you want to get done each day. Small, achievable goals can help you move forward with your health. These goals do not have to always be serious; you can create fun goals like going on a walk in a beautiful park or making a new recipe that sounds delicious.
  • Make time with friends and family. During the day-to-day stress, it is normal to feel lonely. Having intentional time with people you love can help support your mental health. This can be a space to process what you are feeling and connect with loved ones.
  • Talk with professionals to clarify any confusion and process stress. You are not alone in living with Parkinson’s. It is important to talk to the people on your care team about what you are experiencing. Health professionals can help you manage and plan what needs to get done in your daily life. It may be helpful to talk to a mental health professional about the emotions you experience as well.
  • Find exercise classes and mental health activities that work for you. Looking for quick, on-demand exercises for your mind or body? Our Mindfulness Mondays videos offer guided relaxation techniques, while our Fitness Friday videos provide at-home workouts led by exercise pros.

We have resources to help with the overwhelmed feelings when living with PD:

We are here to support you and your family through these changes. Please call the Parkinson’s Foundation Helpline for answers to your Parkinson’s questions or referrals to nearby health professionals, support groups or exercise programs at 1-800-4PD-INFO (1-800-473-4636).

Do you have a question for the PD community? Check out our PD Conversation discussion groups: Newly Diagnosed, Symptoms, Caregiving, Tips for Daily Living, Young Onset and more.

My PD Story

Connie Mississippi
People with PD

Connie Mississippi

I have been an artist for more than 40 years, using an industrial lathe as well as grinders and chisels to make large geometric sculptures. In 2010, I was sitting at my drafting table and the little finger on my left hand began to shake. It continued off and on for a few weeks and was annoying enough that I eventually went to see a neurologist.

He diagnosed the problem as "essential tremor" and said to call him if it got worse. It did get worse — my entire left arm and hand began a continuous tremor, got stiff, and my balance became precarious. I was diagnosed with Parkinson's disease (PD).

I eventually realized I could no longer use the industrial power tools that had been so necessary to the creation of my work. Standing in my empty studio some months later as my son drove away with a truck full of the tools I had assembled over 40 years was a painful and sad moment, but one I couldn't deny. What was my next move?

Painting by Connie

I originally trained as a painter at Pratt Institute in Brooklyn, NY while working on my Master’s degree, and over the years had painted and drawn, but always considered sculpting my main medium. As the tremor worsened, it was clear that the condo my husband and I lived in was not safe with its 37 steps.

We sold the condo and moved to a Mobile Home Park where I could manage the six stairs. The breakfast room became my studio, my medication was finally adjusted so that the tremor was reduced, and I began work on a series of “Parkinson's Paintings.”

Painting by Connie

Art for me has always been a passion and part of my daily existence. What I've now found is that it has become major Parkinson's therapy.

I've learned there are many things I can do to lessen the impacts of the disease: keeping a positive attitude, not being afraid, exercising (my husband and I do Tai Chi every afternoon) and finding a spiritual path. Parkinson’s Foundation resources have also helped me find professional resources and more importantly, in understanding how my life with Parkinson's can be improved and enhanced. The most important though is doing that which gives me joy, my art.

There are still many anxious and depressing moments, but the painting and drawing I do every day always bring me fulfillment and satisfaction. I know doing the art definitely reduces the impacts of Parkinson's.

I believe each of us, with this difficult disease, has something similar in their lives. Finding that something will create the courage and strength needed to live well with Parkinson’s.

My PD Story

Kathleen Gleiter with her husband, son and daughter
People with PD

Kathleen Gleiter

I have come to see that Parkinson's is a disease of hindsight. As I was putting the pieces together that would eventually lead to my diagnosis, I realized how sneaky the multitude of symptoms were that crept into my life.

I used to walk around the house holding my arm stiffly next to my side as though I was wearing a cast and wonder, why I am I doing that? I took my car into the shop to determine what was going on with the gas pedal, because it seemed to require more and more effort to push with my foot. I stopped writing my work notes by hand because I could barely read my handwriting anymore. I felt chronically fatigued, but just assumed every working mother felt the same way.

The list goes on... but what really caught my attention was when my son noticed that my right arm was barely swinging. My google search informed me that "reduced arm swing is a well-known clinical feature of Parkinson’s disease (PD)."

The first two specialists assured me that there was no cause for my symptoms and that PD was highly unlikely. My symptoms persisted and so did I. The third specialist nailed it and told me I was in the early stages of Parkinson's disease. I had just turned 54. I was slightly relieved to have a flipping name for what was happening to me but mostly I felt overwhelmed and devastated. My neurologist said it often takes six to 18 months to adjust to a PD diagnosis. It took me a year.

It's been two years now and this is what I know:

I was up and down, but mostly down. I knew I had to find a community of support to feel less alone so I did. I joined three different support groups.

Kathleen Gleiter with family at Moving Day

I needed to get involved and do something within the PD community so I signed up for Moving Day, A Walk for Parkinson’s, and raised more than $6,000. Now I'm on the planning committee with my son. I needed my family and friends to just be there; I knew they couldn't fix any of this for me. I needed to honor my grief as ambiguous as it was and still is.

I needed to exercise like never before because it's the only thing that is proven to slow progression. And honestly, I needed to lighten up and try not to take myself so seriously. I discovered that Google searches can lead to really dark places if I'm not in the right state of mind when I begin the search — usually, I wasn’t.

I needed to keep being who I am, doing what I can, and embracing what is, even when I don't like it. I know that giving thanks promotes a little more abundance in life and fear gives thanks for nothing. No one wants to have Parkinson's, but I want to do what I can while I can and then say that I did.

I know that I will continue to have good and not so good days. This whole life journey is full of uncertainty with or without Parkinson's. I need to keep showing up and remind myself that I am brave.

Learn more about the unique experience of living with Parkinson’s as a woman.

Advancing Research

Health Care Needs of Veterans Living with Parkinson’s Disease

Veteran speaking with a therapist

There are more than 110,000 veterans living with Parkinson’s disease (PD). The Parkinson’s Foundation is interested in the differences between those who receive care at the Veteran’s Health Administration (VHA), a government organization within the Veteran’s Administration (VA) that provides primary and specialized healthcare to veterans of the U.S. military, and the veterans who receive care elsewhere.

A Parkinson’s Foundation survey sought to understand the health status, demographics, and health care utilization of veterans living with PD. The goal was to uncover differences between those who received care within the VHA versus those outside of the VHA.

In the U.S. today, there are more than 19 million veterans, yet less than half of these veterans receive care through the VHA. It is important to find out how care can be improved and in what areas care needs to be improved in order to provide the best possible care for veterans living with PD.

Survey Results

Infographic of the veterans survey results

Demographics

The Parkinson’s Foundation distributed the survey to 1,532 veterans living with PD in July 2021 and analyzed 409 complete responses. Survey participant demographics include:

  • Responses from 47 states
  • Average respondent age was 74 years
  • Average amount of time living with PD is 7 years
  • Primarily white males with around 94% of respondents being white and 92% being male.
  • Respondents were mainly retired (85%)

Health Service Utilization

Only one-fifth of participants reported receiving care from the VHA. Among those who utilized care from the VHA, 23% did not know that the VHA offered specialized care. Among all respondents:

  • 77% reported seeing a neurologist specializing in PD
  • 75% reported being given a referral for either physical therapy, occupational therapy, speech language pathology or mental health therapy from their PD provider
  • Physical therapy was the most common referral (67%)

Mental Health

One in three respondents reported mental health concerns in the previous 12 months. Those receiving care at the VHA were more likely to report mental health concerns and were more likely to report poorer mental health, but were also more likely to talk about their mental health concerns with someone (a doctor, friend, family member, etc.).

Reported Falls

Among all respondents:

  • One out of five reported falling frequently
  • Two out of five reported having frequent near falls
  • One-fifth of those who experienced one or more falls, did not report the fall(s) to anyone.

Key Takeaways

This study illuminated key differences and areas for improvement both inside and outside of the VHA. The results from this survey show that:

  • Getting referrals for allied and mental health early is vital for veterans living with PD
  • One out of four respondents categorized their mental health condition as poor or fair
  • Of those who reported a fall in the survey, only half reported the fall to their health care provider
  • Educating veterans with PD on the type of care they can receive and are eligible for, whether that be through the VHA or not, is crucial
  • Those receiving care at the VHA were more likely to experience negative health complications but were also more likely to utilize referrals hinting at an underlying difference between those who receive care at the VHA versus elsewhere.

My PD Story

Joel Diaz holding his daughter
People with PD

Joel Diaz

My journey with Parkinson’s began in 2012 at the age of 31 with a small tremor in a finger. My symptoms slowly progressed to my left hand and foot and I spent the next 2 years seeking a diagnosis before a movement disorder specialist identified my symptoms as Parkinson’s. I didn’t know anything about the disease at the time of my diagnosis so I started learning as much as I could.

I’m grateful to have had bilateral Deep Brain Stimulation (DBS) surgery in 2018 to help manage my tremors, ongoing medication management, Botox injections to manage my focal dystonia, and physical therapy to keep moving. Today, while no longer able to work I can focus my energy and time on all aspects of my health and wellness. As a single parent to a precocious 3-year-old, daily living is a challenge but with support from my family and online community I am at a place in my life where I am happy and content.

At the time of my diagnosis I was in the best physical and mental health of my life, unfortunately Parkinson’s changed all of that. I didn’t take the time in my life to slow down and process my diagnosis and I paid a tremendous price for it. My experience is a cautionary tale but also one of redemption and grace.

My advice to someone newly diagnosed is to focus as much energy and effort on your mental health as your physical health. Find a mental health therapist, identify healthy coping mechanisms, join a support community whether it’s online or in person and process your diagnosis. I’m really grateful to the YOPD Facebook group community for being such a great resource for information and a place to ask questions and to share my experiences. It’s here that I met other LGBTQ people living with Parkinson’s and my friend Jason. As a gay man, living with Parkinson’s you can feel even more isolated, but having a gay friend going through the same experience, I no longer feel alone.

The biggest lesson I have learned is we are not alone. Life with Parkinson’s is possible. Our identities are layered with different facets of who we are as people. Today, I’m happy to share that I’m an out and proud gay man living with Parkinson’s disease.

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