Parkinson’s disease (PD) affects everyone differently and changes over time. Symptoms can be hard to predict and may fluctuate depending on factors like medication, stress and sleep. The pressure to adapt to changing physical abilities, as well as mood symptoms, such as depression, anxiety and apathy, may be overwhelming at times and lead to feelings of hopelessness. Whether you feel this way and are searching for a way forward or just looking to boost your overall well-being, there are everyday strategies that can help.

Below we highlight ways to feel more fulfilled, foster healthy habits and build empowerment and resiliency — all of which can help you adapt to the challenges of life with PD and improve quality of life.

1.    Find what is important.

For most, meaning in life comes from a combination of connection with others, hobbies, spirituality and work. Parkinson's can cause people to withdraw from meaningful activities and lose those connections — especially if getting to places or doing the things you love are becoming more difficult. This can create a sense of loneliness or even make life feel meaningless.

The first step in restoring meaning is to look at what matters most in life and what you enjoy. For some people, it’s spending time with friends or family or giving back to meaningful causes. Try to:

• Carve out time to think about what you value.
• Take a break from screens and social media to clear your head.
• Focus on spending time with people or experiences that lift you up.
• Start small — focus on little things every day that can add joy and meaning to your life.

2.    Pave the way to healthy habits.

Working gradually to create healthy routines around exercise, diet, sleep, medications and connection with others can help with quality of life. Work towards integrating these healthy habits into your routine:

• Exercise regularly to help you move and feel better.

• Eat a healthy, balanced diet that can provide energy and ease symptoms.

• Create a consistent sleep schedule to give your body the time it needs to repair. 

• Take medications at the same times every day to help keep symptoms under control.

• Schedule daily touchpoints with friends and family to stay connected and engaged.

New habits often take extra effort and planning to take hold — especially if the behavior doesn’t come naturally to you. For some people with PD, forming new habits can be tricky since dopamine — a key part of the reward system — declines over time. Finding ways to cue new behaviors can remind you to stick to your goals. For example, plan to attend a new work out class with a buddy to stay on track.

For help identifying personal goals and any barriers getting in the way of forming healthy habits, consider cognitive behavioral therapy, a type of counseling that focuses on replacing negative thought patterns with positive ones.

3.    Believe in yourself.

You are in charge of your health and well-being. Studies show that believing in your ability to tackle life’s challenges may improve mental and physical health. This belief makes it more likely that you will pursue a goal, put in extra effort to accomplish it and stick with it, even if there are setbacks.

When experiencing self-doubt, let others inspire you. Read books or watch movies about people in similar circumstances and how they coped with their challenges. Reach out to a local Parkinson’s Foundation chapter or your neurologist's office to help find a support group that works for you.

You can also inspire yourself by remembering everything you have accomplished and overcome in the past. People are often more resilient than they believe. Most importantly, give yourself grace — coming up short from time to time is part of being human.

4.    Identify obstacles.

Up to 50% of people with PD will experience some form of depression, while up to 40% will experience an anxiety disorder. Caring for mental health and building emotional resiliency requires addressing PD mood changes — some of which require medication and talk therapy (psychotherapy).

Discuss treatment options with your doctor and look for a counselor or therapist if excessive worry or sadness, lack of motivation or other mood changes begin to interfere with daily life.

If you are trying to get back to an activity you love, write down your goals. What obstacles are getting in your way? Is there a way to simplify or modify an activity? For example, if you love baking but are struggling to follow a complex recipe, try getting out all the ingredients at the start and then putting away each ingredient as you use it. An occupational therapist can help you adapt your environment or find new ways to keep doing the things you enjoy.

5.    Take a team approach.

Whether you have lived with Parkinson’s two years or 10, building a support team can help you live better. When possible, seek expert care and rely on different types of experts to address your needs as they arise. A neurologist, speech-language pathologist, physical and occupational therapist, counselor and other healthcare professionals can offer comprehensive care. Contact the Parkinson's Foundation Helpline at 1-800-4PD-INFO (1-800-473-4636) to find professionals in your community.

Don’t limit your teambuilding to those who care for your health. Living with the challenges of Parkinson’s usually requires an “all hands on deck” approach. Look to your closest connections — people who are invested in the outcome of what you're doing — for emotional support. Connect with others also living with PD, whether in person or online, to unite with people that understand your journey on a personal level.  

Helpful Resources

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

• 5 Steps to Living Well With Parkinson’s
• Getting Support
• Parkinson’s Q&A: How do I manage my time and mental health?

When it comes to Parkinson’s disease (PD), members of the Lesbian, Gay, Bisexual, Transgender, Queer or Questioning and other sexual identities (LGBTQ+) community are more likely to face unique challenges when seeking health care and treatment. Read on to learn how PD affects the LGBTQ+ community and tips for living well.

1.  Assess your thoughts and feelings.

Stigma and discrimination against people in the LGBTQ+ community is an ongoing problem that may hinder individuals in the community from seeking care for health issues, including Parkinson’s. Research shows that members of the LGBTQ+ community are less likely to tell doctors if they are in a same-sex marriage or partnership out of fear of discrimination, and 50% of the transgender community reports being previously mistreated by medical providers.

Know there are resources available to support you. Our partner, SAGE, provides advocacy and services for LGBTQ+ elders to help you seek the care you need. 

2.  Find a Parkinson’s doctor you trust.

Trust between a doctor and patient is an essential aspect of quality, comprehensive care. Remember it is always a voluntary, personal choice to disclose your sexual orientation and/or gender identity to your healthcare providers.

For advice on how to navigate this discussion:

• Read Coming Out to Your Doctor by the Human Rights Campaign.
• Watch our LGBTQ+PD webinar to learn how LGBTQ+ individuals can advocate for themselves within the health and aging system.

For all people with Parkinson’s, it is important to share any non-PD health-related issues with your care team. This information can help facilitate your future care plan and adjust PD treatments as needed with interdisciplinary care.

For transgender individuals receiving gender-affirming hormones, you may want to discuss your hormone therapy with your doctor. Testosterone has not been found to affect Parkinson’s symptoms, but the effects of estrogen are inconclusive.

3.  Prioritize your mental health.

Research shows that LGBTQ+ people experience higher rates of anxiety, depression and body image issues compared to the general population. Anxiety and depression are also Parkinson’s symptoms, so prioritizing mental health is essential for LGBTQ+ individuals in the PD community.

Find a support system that works for you:

• See a counselor.
• Attend an exercise class.
• Take time to practice mindfulness.
• Check out our PD Health @ Home Mental Wellness Series for more tips to boost your mental health.

4.  Stay social.

People with Parkinson’s often experience isolation due to intrusive symptoms. Isolation can be even more common for LGBTQ+ individuals living with PD, who are more likely to be estranged or disconnected from their biological family.

Here are some ways to stay connected:

• Find an LGBTQ+ support group near you. If no in-person options are available, try joining a virtual group.
• Use our Guide for Support Group Leaders to start your own support group.
• Read about one of our community grant recipients, “Parkinson’s Pride,” to learn how social interaction can help you live well with PD.

5.  Engage in research.

The LGBTQ+ community is underrepresented in Parkinson’s research at all levels including clinical, epidemiological and translational. Of the limited studies conducted, researchers have found that discrimination and stigma are barriers to accessing care. Additionally, 33% of older members of the LGBTQ+ community report experiencing stigma from doctor, leading to medical mistrust.

To improve treatment and access to care, there need to be more representative efforts to include LGBTQ+ people in Parkinson’s research and population studies. Explore ongoing PD research opportunities.

6.  Find a LGBTQ+ friendly healthcare institution.

Finding a healthcare provider you feel comfortable and safe sharing personal information with is vital. Many doctor’s offices provide LGBTQ-friendly language or signs as visual affirming cues to make you comfortable.

The Gay and Lesbian Medical Association provides a directory of health care providers for those seeking LGBTQ+ friendly health professionals. You can also call our Helpline at 1-800-4PD-INFO (1-800-473-4636) for answers to specific Parkinson’s questions, local referrals and more.

Learn more about the LGBTQ+ Parkinson’s community. 

The need to belong and form relationships is as basic as our need for food and water. In fact, studies show loneliness can negatively impact our physical and mental health, possibly contributing to a number of health conditions, such as poor sleep, depression and thinking changes.

If you are living with Parkinson’s disease (PD), you may be at an even higher risk for feeling lonely and disconnected. Movement symptoms, such as stiffness, slowness and balance problems, can interfere with mobility and the ability to navigate group situations. Tremor and dyskinesia (involuntary movements) — at times visible to others — may lead to avoidance of social settings. Though less recognizable, non-movement symptoms, including fatigue, anxiety, depression and apathy, can also cause people to withdraw.

Our new Mental Wellness Series is dedicated to mental health conversations. This article accompanies our virtual round-table conversation, Finding Connection and Support While Living With PD. The following tips can help you build meaningful connections and stay engaged.

1. Make plans strategically.

Being social is tough when you’re feeling stiff, tired, depressed or anxious, but it’s important to stay engaged, even if you don’t feel like it. Set time aside to connect with your family, friends and neighbors every day — in person, over the phone, by text or through social media.

Build social activity into your routine by scheduling outings (such as exercise or hobbies with friends) a week in advance. Let your new friends know (and remind old friends) that Parkinson’s is not always the same or predictable. Meeting times may need to shift now and then, and that’s OK. If you are worried about “off” times, coordinate your social activities with medication “on” times.

2. Connect with the right support for you.

Just as the best partners and friends empower us to shine, the right social groups are ones that make us feel understood, encouraged and welcome. For some people, finding people who share common ground — perhaps of a similar age or cultural background — can be key to feeling comfortable and seen. Participating in Parkinson’s-specific support groups, exercise classes and events provides opportunities to connect with people who understand what you are going through.

“When I first got diagnosed, you know, I didn’t see anyone like me. I now have a family that I never thought I would have.”
—Gregory, person living with Parkinson’s

Ask your healthcare team or call our Helpline at 1-800-4PD-INFO (1-800-473-4636) for information on groups in your area. Explore PD Conversations, our online network of support, or consider getting involved with your local Parkinson’s Foundation chapter.

3. Branch out.

Loneliness can run deep or come and go. Though it may be easier for people living alone to lose connection with others, even those surrounded by family and friends can yearn for a different kind of connection. Fostering relationships in different social spheres among family, friends and community builds a strong web of support to help you navigate the day-to-day challenges of Parkinson’s.

Look for opportunities to make an impact in any way that speaks to you. Some options include supporting a friend in need or getting involved in a cause close to your heart. Consider volunteering to help make life better for people living with Parkinson’s.

4. Reconnect with your passions.

Facing changes in your abilities can be disheartening, but don’t let yourself get stuck. Explore ways to modify an activity or change your environment to continue doing what you enjoy. For example, golfing may look different. Maybe now you play nine holes instead of 18. Fortunately, humans can adapt, find joy and create meaning even under difficult circumstances — particularly when we stay connected and engaged.

Did you know an occupational therapist can also help you discover ways to adapt your favorite pastimes and stay engaged with people?

5. Rely on your healthcare team.

Breaking out of your shell when you are feeling lonely and isolated is no small feat. Lean on your healthcare team. One of your providers could be the lifeline you need to get out of a dark place, either by asking a question that helps you recognize mood changes or prompting you to seek mental health treatment.

Your healthcare team is there to help support your goals and work with you to identify the best treatment options. You may need to switch providers to find the right fit for you.

“The nurse told me, ‘You know, you're going to be working. You're going to be doing things.’ Basically, she was challenging me. I was in total darkness. I didn't go anywhere. I didn't do anything. But that little window of opportunity switched my light on and, before I knew it, I was participating in boxing and the rest is kind of history.”
—Alharvey, person living with Parkinson’s

Helpful Resources

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

• Episode 110: Social Isolation and Loneliness
• PD Solo Network
• Dealing with Relationship Change

Between 30-90% of people living with Parkinson’s disease (PD) may experience intimacy issues. These challenges can affect the person living with Parkinson’s as well as their partner.

Though it may seem taboo to discuss topics like sex and the human body, understanding the impact of non-movement PD symptoms like sexual dysfunction and incontinence issues can help you live well.

Navigating Intimacy

Sexual dysfunction is a common issue among the general population, but it is one of the most overlooked aspects of PD. Sexual dysfunction can encompass a variety of symptoms including sexual desire/arousal, ejaculation, sexual pain and erectile dysfunction.

Since Parkinson’s disease affects the production of dopamine in the brain, changes in levels of neurotransmitters can impact sexual function and lead to other sexual dysfunction symptoms.

There are many types of sexual dysfunction, as well as options for managing them:

• Sexual arousal. To help improve sexual arousal or libido, doctors tend to first look at other potential causes, such as stress and anxiety. Treatments include types of therapies such as hormonal and sexual therapy, which usually includes your partner as well. Oral medications can also be taken to improve sexual arousal.
• Ejaculation. To help ejaculation, behavioral techniques and/or vibratory stimulation can be effective. Oral and topical medications are also available to help with this symptom.
• Erectile dysfunction. Lifestyle modifications and oral medications can help treat this symptom. Other potential treatments include Botox injections and surgery, which is rare.
• Sexual discomfort. There are different interventions that can be used to decrease sexual discomfort such as vaginal estrogen, which comes in many forms. Additionally, behavioral, and physical interventions as well as pelvic floor physical therapy can help decrease discomfort.

Sexual dysfunction is a common problem for many individuals, but it is important to remember that these issues can be common for people living with PD. Fortunately, there are various treatments available to help combat sexual dysfunction depending on what you are experiencing and what works best for you.

Tips for Intimacy and PD

• Increase open communication
• Perform intimacy training and erotic tasks
• Work with medical staff to reduce the effects of medications on sexual function
• Understand comfortability and physical limitations of each other
• Practice growing intimacy and satisfaction through sexual stimulation without intercourse, then begin to add it back in, known as the intercourse approach

Understanding Incontinence

Incontinence is the lack of voluntary control over urination or defecation. Urinary issues are one of the most prevalent non-movement symptoms of Parkinson’s disease, affecting around 40-70% of people living with PD. These issues include urgency and/or frequency of urination, leakage and infection.

In the human body, the brain, spinal cord and nerves all interact with the bladder and sphincter. Injury or damage to nerves, which occurs in neurodegenerative diseases like Parkinson’s, can impact the signaling in the bladder and lead to urinary symptoms.

First, talk to your doctor to rule out other medical issues, such as bladder or urinary infections. If your symptoms persist, there are a variety of treatments to help cope with urinary issues:

• Behavioral modification includes timed voiding (going to bathroom every hour) and avoiding dietary irritants such as spicy foods and caffeine.
• Pelvic muscle training can be an effective method to curb urinary issues.
• Oral medications and bladder injections such as Botox are common treatments.
• Surgery can be an option, but is rare.

Parkinson’s disease can impact life in many ways, especially when it comes to intimacy and incontinence. These symptoms may be challenging to manage, but there are strategies and treatments designed to help. With proper support and open communication with your care team, people living with PD can maintain a good quality of life and enjoy fulfilling relationships.

Tips for Incontinence and PD

• Openly communicate with your healthcare provider and loved ones
• Be aware and frequently use the restroom even if you don’t need to
• Cut down on caffeine consumption
• Keep a bladder diary to record your fluid intake and restroom patterns

Learn More

Explore our resources about intimacy and Parkinson’s:

• Webpage: Sexual Health
• Video: Redefining Intimacy in Parkinson's Disease & Beyond
• Podcast Episode: Navigating Sexuality and Intimacy with PD

The Parkinson's Foundation is here for you. Reach our Helpline at 1-800-4PD-INFO (1-800-473-4636) or Helpline@Parkinson.org for answers to your Parkinson’s questions and referrals to local wellness classes and support groups