Life with Parkinson’s disease (PD) is unique to every person. The journey to a diagnosis, symptoms and disease progression varies. Roshni Patel, MD, MS, believes that diverse and inclusive care practices and research recruitment are key to ensuring access to quality care for everyone, and to learning more about PD.

“There has been a push for more diverse and inclusive patient recruitment in Parkinson’s research studies,” Dr. Patel said. “And that push actually led me to a subtopic I've become very interested in – LGBTQ+ health and neurology. Not much is known about LGBTQ+ health in Parkinson’s. People with Parkinson’s have high rates of mood disorders, depression and anxiety, and it’s also been shown that LGBTQ+ patients with other neurological disorders have high rates of those symptoms, so I wanted to see if LGBTQ+ people with Parkinson’s may be at a higher risk for mood disorders.”

During her movement disorders fellowship at Rush University Medical Center, a Parkinson’s Foundation Center of Excellence, Dr. Patel reviewed recent self-reported survey data where she looked at the movement and non-movement symptom burden among LGBTQ+ people with Parkinson’s. This is one of the first studies looking at Parkinson’s symptom burden for LGBTQ+ people and could inform care practices for this population. She recently submitted her findings and is awaiting publication.

During her fellowship, Dr. Patel became interested in epidemiological research (the study of diseases as they relate to populations), where she used large datasets to answer questions. In her current role as a neurologist at Jesse Brown VA Medical Center, Dr. Patel splits her time between seeing patients and conducting research. While she has access to the VA system’s robust clinical database, she is excited to see the current trend in research is making more data open access.

“The move to make more data available for any researcher to access and analyze is really promising,” she said. “It offers the chance for new people to take a look and possibly see new things that the original researchers might not have thought about or looked at. It can hasten discoveries and makes things more transparent.”

She also believes that genetic studies of Parkinson’s, like PD GENEration: Mapping the Future of Parkinson’s Disease, can make a big impact. “Access to data from a big genetic cohort will be amazing,” she said. “I think that data will speed up the rate of discovery in terms of identifying genetic risk factors.”

Lately, through patient visits, Dr. Patel has noticed a trend of increased telehealth neurology opportunities. The ability to see a movement disorders specialist virtually improves inclusivity since it simplifies access to care. One program she is excited to get more involved with offers telehealth neurology visits to veterans in rural areas who do not have access to a neurologist. Participants wear a device similar to an accelerometer that measures their movements and generates a report that helps their doctor see their movement response to their medications.

“This program will be a good proof of concept to show that in a cohort of telemedicine-only Parkinson’s patients, a doctor could manage their movement Parkinson’s symptoms with a remote body-worn sensing device that provides objective data. Something like this has the potential to greatly increase access to care.”

Dr. Patel credits her Parkinson’s Foundation fellowship for her deep interest in leveraging data to find Parkinson’s disease trends and information that can be helpful for doctors and people with PD — along with her passion for improving inclusivity in PD research and care.

“This unique two-year fellowship gave me time to both care for patients and develop a research interest and learn more about the research process,” she said. “Research fellowships need funding. The Parkinson’s Foundation is essential because it allowed Rush to provide that fellowship to me.”

The Parkinson’s Foundation is proud to provide several types of grants that encourage young clinicians and researchers like Dr. Patel to devote their talents to the study of Parkinson's disease.

For more information on our research grants, visit Parkinson.org/Grants.

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. 

Movement disorders specialists (MDS) are neurologists who specialize in conditions such as Parkinson's disease (PD) and have experience treating PD at every stage. Janis Miyasaki, MD, is a movement disorders specialist and Professor of Neurology and Medicine at the University of Alberta. We asked Dr. Miyasaki to delve into the doctor’s side of the Parkinson’s experience.

Why is it important to see a neurologist rather than a primary care doctor for Parkinson’s?

The average family doctor will see less than five people with Parkinson's disease in their entire career. That doesn't allow them the comfort level of seeing a patient, diagnosing them and guiding them through PD stages to help them maximize their quality of life.

A neurologist specializes in illnesses of the brain, spinal cord, muscles and nerves, which includes Parkinson's disease. A neurologist also spends four to five years in residency to obtain this expertise, which means they have a lot more opportunity to see these patients over time. They can look at the advanced therapies that have been developed in recent years to improve life for people with PD.

How do movement disorders specialists collaborate with other members of the PD care team?

Movement disorder neurologists, first, collaborate with the patient and their family. People often don't think of a spouse or family member as part of the care team, but in my mind, they are the most important members of the care team. Care partners are a second set of eyes to observe symptoms and they can help advocate for their loved one.

Then there's the traditional team. Most movement disorder clinics will include nurses who have spent their career involved in the care of Parkinson’s patients. This gives them an expertise to problem-solve in between neurology visits and reinforce messages from the care team.

We often work alongside physiotherapists and occupational therapists. As an MDS, I communicate with these specialists because they might see a symptom or challenge that we may not have seen in the clinic visit. Many units also have speech language pathologists, who help with speech and swallowing as they relate to Parkinson’s, as well as dietitians who can assist with symptoms like constipation.

It's important that the team is always communicating, so everyone is on the same page about how we can best help our patients. In my clinic, every morning we check in to discuss the patients we'll be seeing that day. Everyone on the care team has an opportunity to talk about what they have noticed recently in a patient’s life. From there, we decide what to highlight during the visit.

Diagnosing Parkinson’s can take time and not always be cut and dry. Can you walk us through how you diagnose PD? What are you looking for?

At this point, we do not have imaging or a blood test that definitively confirms a Parkinson’s diagnosis. Rather, the diagnosis needs to be taken in the context of the person. This can be frustrating for patients and families, but to me, this is the beautiful part of neurology. We have to talk to our patients, examine them and follow them over time.

If a neurologist notices your response to medication is very typical and that you develop common symptoms of PD (like motor fluctuations or dyskinesia), the accuracy of diagnosis is about 70%. The accuracy of diagnosis for an MDS with those same criteria is about 80%.

Movement disorders specialists see a lot of patients, so we know which symptoms are typical in Parkinson’s disease. Or if the symptoms don’t seem to be consistent with Parkinson's, we can think about alternative movement disorders and send this person for other tests.

What symptoms do patients find most invasive to their quality of life? How do you address them?

There are many Parkinson’s symptoms that affect quality of life. Symptoms that impact mental health can be particularly problematic. In Parkinson’s, changes in the brain can increase the risk of anxiety and depression.

One challenge we face is that many people with PD who need mental health support grew up in an era where it was shameful to ask for help. If your family is encouraging you to seek help, it's not because they find you bothersome — it’s because they hope that you can be better. I encourage people who are experiencing these symptoms to seek out help from mental health experts, because the landscape of medications and approaches available are vast compared to decades ago.

Pain is another symptom that people often don't associate with Parkinson's disease. Some patients present with pain before they develop movement symptoms of PD. You may experience pain or aching as you notice stiffness and mobility problems. Palliative care principles have been introduced to treat Parkinson's disease because palliative care specialists are experts in assisting with pain control.

Do you recommend exercise to your PD patients?

We have evidence that people with PD do better when they exercise. The baseline activity should be moderate intensity exercise five days per week, for about 30 minutes each day. Moderate intensity means you're slightly short of breath when you're doing the activity and trying to carry on a conversation.

When you exercise, keep it consistent and make sure you enjoy it. Try varying the type of activity as well. You could ride on the exercise bike twice a week, attend a boxing class twice a week and join a walking club in your neighborhood. This type of varied movement is good for your body, your joints and your brain. Exercise is even associated with a decreased risk of cognition problems and dementia.

What made you decide to pursue movement disorders as a specialty?

I entered the movement disorders field with a little bit of luck. During the last year of my residency, Dr. Anthony Lang, who is a luminary in movement disorders, asked me what I was doing the coming year. I didn't have plans, so he asked me to be his fellow.

I had already developed an affinity for movement disorders patients, especially people with Parkinson's disease. This was before deep brain stimulation was a treatment option. The patients were so brave and giving to us in our research; they were willing to help with any project that might shed more light on people with Parkinson's.

I enjoyed knowing that no matter who walked through that door, I could help them feel a bit better. This area has been a never-ending revelation to me about what I can learn about patient care.

What is it like being an Asian woman in this field?

To give you an idea of how long I've been in this field, my membership number in the International Parkinson and Movement Disorders Society (IPMDS) is 96 [Today, IPMDS states they have 11,000 members]. When I started my career, I was one of the few women in the society, and I believe I was the only Asian woman at the time.

I have not had a lot of role models who look like me, but I have had role models who embody the characteristics that I hope to bring to my work. I always say to my students, “If you get to be in a place of power, give a chance to someone who doesn't look like you.” It's so easy to choose someone who thinks and looks like us, but it’s much harder to choose someone who looks and thinks differently.

Diversity of thought can help make great leaps in knowledge, especially when people stretch outside of their comfort zone.

Why are you also interested in PD research? Can you summarize some of your work?

As an academic neurologist, research is part of what we do. I began my career as a clinical trialist focused on early drug studies for Parkinson’s disease. Over time, I became interested in palliative care for Parkinson's.

After watching patients deteriorate after decades of living with PD, it broke my heart when other physicians would say, “There's nothing more we can do for you.” I felt that there is always something that we can do for our patients. I started applying palliative care principles to Parkinson’s patients in our movement disorders clinic.

I started as one lonely voice in 2007, but now there are dedicated clinics that provide palliative care to people with Parkinson's. I’m currently involved in a research project to initiate palliative care at all the Parkinson’s Foundation Centers of Excellence in the U.S. I find this project to be incredibly rewarding, and I hope that everyone who participated now understands the benefits of palliative care.

For help finding a movement disorders specialist near you, contact our Helpline at 1-800-4PD-INFO (1-800-473-4636).