[Webinar Recording] Live Well Today: Self-Advocacy and Improving Your Parkinson’s Care–October 2024

October 2024 Live Well Today Panel

During October’s Live Well Today webinar, five panelists shared tips for building the care team you need, wherever you are. The panel included a movement disorder specialist with neuropalliative care experience; a registered nurse; a care partner; and two people with Parkinson’s, one who lives in Alaska and one who lives in Toronto.  

You can watch or listen to the webinar below. Subscribe to our YouTube page to you can be notified whenever we upload new content. 

An audio version of this podcast is available below.

SHOW NOTES 

Because Parkinson’s impacts so many aspects of life—physical, mental, social, and spiritual—it’s important to recognize that one single provider can’t give you all the care you need. To get the best care so you can live well with Parkinson’s today and for years to come, it’s helpful to build a holistic, integrated care team who understands your unique symptoms, needs, and goals.   

Building a Medical Care Team 

Movement disorder specialists 

If possible, seek out a movement disorder specialist (MDS) to be part of your medical care team. An MDS is a neurologist with additional training in movement disorders. They are the physicians who are most familiar with the full spectrum of Parkinson’s medications and treatments. Compared to primary care physicians and even general neurologists, movement disorder specialists can better identify symptoms, pinpoint the ideal timing for certain therapies (like deep brain stimulation), help you anticipate changes, and more.  

Depending on where you live, it may be difficult to find a MDS nearby, but working with an MDS help you live well with Parkinson’s. Even if your nearest MDS is a few hours away, don’t assume it is not an option of joining their clinic. You may only need to see them in person once or twice a year, and many people with Parkinson’s say that driving a few hours to these appointments is time well spent. If the closest MDS is too far away to make travel feasible, you may still be able to add them to your care team via telemedicine  

Additional medical professionals 

As panelist Jennifer Corcoran, MD, reminded listeners during the webinar, living with Parkinson’s diagnosis doesn’t make you immune to other conditions. Symptoms you experience may have nothing to do with Parkinson’s, which is one reason it’s important to have a primary care physician (PCP) on your care team (regardless of your proximity to an MDS). Primary care physicians play an essential role in problems unrelated to Parkinson’s. They can monitor your general health and make sure you stay up-to-date on preventive medical screening tests. In addition, your PCP can help identify potential medication interactions and assist you in finding additional specialists if needed.   

Nurses are also essential medical care team members. They are often strong liaisons between hospitals, medical offices, and the community, and they are often the first line of access to care.  

Non-Medical Care Team Members 

Many people who can help you live well with Parkinson’s work outside the medical community. Depending on your needs and wishes, you may consider adding to your team a psychologist or counselor; a social worker; a physical, occupational, and/or speech therapist; a spiritual advisor; and others.   

Finding Care in Remote Areas 

For all people with Parkinson’s and their care partners, it is important to be prepared for appointments. If you live in a remote area and travel hundreds of miles to see your MDS once or twice a year, it becomes even more so. You want to maximize your time with your specialist and be sure your most pressing questions are answered. The panelists offered the following advice for listeners who travel long distances for appointments:  

  • If you live in colder climates, try not to schedule appointments in the winter, when weather can prevent you from making the trip. 
  • Talk with the clinic scheduler about your drive time. If you’re traveling for several hours to get to the clinic and need to factor in early morning or late night travel, ask for midday appointments. 
  • Explore telehealth options. 
  • Get organized before your appointments. Make lists of questions you have, and prioritize your most pressing challenges. Consider using checklists to track symptoms and organize your needs and concerns so you can communicate them clearly to your care providers during appointments. Adrian Dube, a panelist who is living with Parkinson’s, said she always takes three lists with her to appointments: a list of the top 5 things she wants to talk to her specialist about; a list of her current medications, doses, and times; and a list of her current care team members (including names, addresses, and phone numbers). 
  • Advocate for yourself at the end of a visit if you didn’t get all your questions answered. Ask if you can review your notes with a nurse before you leave. 
  • Unless your MDS and your other providers work within the same health system, they likely will not automatically communicate with one another about your health. However, most clinicians are happy to reach out to other providers if you make this request. If you want to be sure your MDS connects with your PCP about a new treatment option or symptom, be sure to speak up about this during your appointment.  
  • If you and/or your care partner would like to speak with your specialist individually, make this request when you check in for your appointment. Sometimes people with Parkinson’s hold back on communicating all their current symptoms to their providers, so care partners may wish to speak privately with the physician to be sure the full picture is painted and the best care can be given. 

Accessing Care as a Care Partner 

Just as many people can help your person with Parkinson’s live well, there are many whom you can add to your care team as you navigate your role as a care partner. Some of these may be similar to members of your loved one’s team, such as a counselor, social worker, and/or spiritual advisor. Others may be unique to your needs and wishes. No matter who you choose to be part of your team, remember that the important thing is to stay connected and ask for the help you need.  

Support groups, which can be hugely beneficial for people with Parkinson’s, are often key to helping Parkinson’s care partners live well. Seek out a group near you, and you’ll likely find a new community of people who understand well exactly what you’re going through. 

Palliative Care 

No matter what stage of life and Parkinson’s you or your loved one is in, building a palliative care team can be beneficial. Palliative care, sometimes described as supportive care, refers to multi-disciplinary services that are designed to address the whole person, and to ease suffering and improve quality of life at all stages of a serious illness or medical condition for an undetermined amount of time.

Neuropalliative care, or palliative care designed specifically for people with neurologic conditions, is a relatively new and growing field. Like general palliative care, it can provide the care you need to live well, whenever you need it. Neuropalliative care is made up of a team of care providers such as doctors, nurses, therapists, counselors, chaplains, and others who provide person-centered care.  

Because neuropalliative care can improve quality of life for people with Parkinson’s (and their families) and can provide benefits from the moment someone receives a Parkinson’s diagnosis, explore options in your area that offer these services. Palliative care teams practice in hospitals, outpatient clinics, assisted living facilities, and private homes across the country, which means palliative care is accessible no matter where you live. It is also covered by most insurance plans. 

Your local Parkinson’s organization or support group may be able to help you find a palliative care team near you. Social workers can also help in the search for the best local resources for you and can be great resources for addressing practical questions about how to proceed in seeking supportive care. You can also visit getpalliativecare.org for more information and to search a provider database. 

A Note about Hospice Care 

In the United States, hospice is a part of palliative medicine, but it is only one aspect. Palliative care can be part of your treatment plan beginning as early as diagnosis, whereas hospice care is typically for people in their last six months of life. It is important to note, however, that many people receiving hospice care do live much longer than the predicted six months, and this is largely attributed to the fact that the care they receive improves their quality of life.  

COPE-PD

The COPE-PD (Community Outreach Palliative Engagement for Parkinson's Disease) study is centered around the belief that quality care for people with Parkinson’s and their families should be accessible to all, and that palliative care can address countless challenges faced by the Parkinson’s community. The project aims to improve the standards of care and quality of life for people living with Parkinson's and their families by raising awareness of the Parkinson’s community’s needs, experiences, and challenges and providing support and education to people with Parkinson’s and community neurologists.  

The study’s Neurologist & Principal Investigator is Benzi Kluger, MD, MS, Founding Director of the Palliative Care Research Center and Neuropalliative Care Division at the University of Rochester Medical Center (and longtime friend of the Davis Phinney Foundation). Dr. Kluger and his team are wholly invested in improving quality of life and care for people with Parkinson’s and their loved ones. They invite all who are interested to learn more about how palliative care can help people throughout their illness, how research improves care, and what factors may lead to unequal access to care. Through the study and its resources, they will also share educational materials, opportunities to improve your care, and opportunities to get involved with research

Self-Efficacy to Live Well 

Toward the end of this webinar, Adrian said, "Living well with Parkinson’s starts with self-awareness. Being on the Parkinson’s journey means you need to accept and be aware of what’s going on in your body, with your mood, in your relationships.” 

Adrian also said that, after acceptance and awareness comes self-efficacy. Self-efficacy is the belief that you still have control over your life, that you can impact an outcome by what you do. By practicing self-efficacy, you can increase your confidence and motivation, learn new skills, improve your quality of life, and live well with Parkinson’s today and into the future.  

Additional Resources 

Building Your Parkinson’s Care Team 

How to Build Your Parkinson’s Care Partner Care Team 

New Research Finds Gaps in Parkinson’s Care Access 

Parkinson’s Support Groups 

Rock Steady Boxing 

Parkinson’s Worksheets and Checklists 

Melanoma and Parkinson’s 

PD Self 

[Webinar Recording] Palliative Care 

COPE-PD 

[The Parkinson’s Podcast] Mortality and Parkinson’s 

Find a Davis Phinney Foundation Ambassador 

Synapticure  

Every Victory Counts® resources   

Share this post on social:

To receive our electronic newsletter and other updates, sign up now.

Related Posts

Back to top