Davis Phinney Foundation

14 April 2021

Davis Phinney Foundationhttps://davisphinneyfoundation.org
Foundation for Parkinson’sTue, 13 Apr 2021 14:48:07 +0000en-US
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3232[WEBINAR RECORDING] HEALTH DISPARITIES AND PARKINSON’S: UNDERSTANDING THE ROLE OF TRUSThttps://davisphinneyfoundation.org/webinar-health-disparities-and-parkinsons-understanding-role-of-trust/

Tue, 13 Apr 2021 14:45:36 +0000https://davisphinneyfoundation.org/?p=1063904Racial differences in Parkinson’s treatment and mortality exist. When it comes to addressing these disparities, the concept of trust comes…

The post [WEBINAR RECORDING] HEALTH DISPARITIES AND PARKINSON’S: UNDERSTANDING THE ROLE OF TRUST appeared first on Davis Phinney Foundation.

]]>Racial differences in Parkinson’s treatment and mortality exist. When it comes to addressing these disparities, the concept of trust comes up in nearly every conversation. But what do we really mean when we talk about trust? In this conversation, Dr. Altaf Saadi and Dr. Consuelo H. Wilkins examine the concept of trust, what we mean when we talk about trust, and how trust is necessary to address health disparities.

A few of the questions our panelists answered included:

  • What do we mean when we talk about trust?
  • How can trust be built?
  • What causes trust to break down?
  • How can we measure trust?
  • How can communities use existing, trusted relationships to address health disparities?
  • How can health care providers and health care institutions be more trustworthy?

You can watch the video below.

To download the audio, click here.

To download the transcript, click here.

Show Notes

  • Trust is a complex term because it can exist in a variety of circumstances. Dr. Consuelo defines trust as a reliable belief or, more specifically, a reliability, validity, or the competence of something or someone
  • For people who are marginalized, minoritized, and/or have been abused or exploited in the past, distrust of medical care may be a natural defense mechanism based on past experiences, not based on credentials or experience
  • Try not to judge people for their mistrust, but rather, have the humility to think, “I can imagine why this person might not trust this information or find it reliable”
  • Within the medical profession in particular, trust can be built on an individual level as well as on an organizational level
  • To build trust on an individual level, it is important to validate a person’s feelings and experiences as their truth; to believe that they are as important as you are; to understand and exhibit effective communication among different kinds of people; and to show empathy without invalidating the person in the process by relating the experience to yourself
  • To build more trust on an organizational level, new policies need to be enacted. Some examples of policy change that may increase patient trust might be increasing appointment lengths, creating new billing codes to support longer appointment times, and including topics such as effective communication across cultures into the educational curriculum for medical professionals
  • It is important to understand that a person who has a general mistrust of medical care may develop trust with an individual professional. This, however, does not automatically transfer to all medical professionals
  • For communities that are mistrusting of medical care in general, an effective way to get them proper medical information and care may be to give the appropriate materials to a trusted individual within the community, who can then distribute the information

additional resources

How to Communicate More Effectively With Your Doctor

Toolkit for Providers Serving Immigrant Communities

Health Disparities and Parkinson’s: Understanding the Issue

Health Disparities and Parkinson’s: Bridging the Gap Between Urban and Rural

General Academic Neurologist and Associate Director of Asylum Clinic at Massachusetts General (MGH) and instructor of neurology at Harvard Medical School. She is also associate director of the MGH Asylum Clinic.

d

d

d

Consuelo H. Wilkins, MD, MSCI

Vice President for Health Equity, VUMC
Associate Dean for Health Equity, Vanderbilt SOM
Engagement Core Director, All of Us Research Program
Associate Director, Vanderbilt Institute for Clinical and Translational Science
Professor of Medicine, Division of Geriatric Medicine
Geriatric Medicine Fellowship Program Faculty

f

 Moderator

David Leventhal

Program Director, Dance for PD®, Mark Morris Dance Group, and Board of Directors, Davis Phinney Foundation

d

Learn More about Health Disparities and Parkinson’s

We created our Health Disparities and Parkinson’s Webinar Series as part of our commitment to understanding and working to change deeply rooted inequities in healthcare that black, brown, and indigenous communities; LGBTQ+; immigrant, and refugee communities; and people of color experience. Learn more and register for the next webinar in the series here.

Presented in partnership with:

The post [WEBINAR RECORDING] HEALTH DISPARITIES AND PARKINSON’S: UNDERSTANDING THE ROLE OF TRUST appeared first on Davis Phinney Foundation.

]]>[WEBINAR RECORDING] HEALTH DISPARITIES AND PARKINSON’S: UNDERSTANDING THE ROLE OF TRUSThttps://davisphinneyfoundation.org/health-disparities-understanding-the-role-of-trust/

Tue, 13 Apr 2021 10:00:52 +0000https://davisphinneyfoundation.org/?p=1063684Racial differences in Parkinson’s treatment and mortality exist. When it comes to addressing these disparities, the concept of trust comes…

The post [WEBINAR RECORDING] HEALTH DISPARITIES AND PARKINSON’S: UNDERSTANDING THE ROLE OF TRUST appeared first on Davis Phinney Foundation.

]]>Racial differences in Parkinson’s treatment and mortality exist. When it comes to addressing these disparities, the concept of trust comes up in nearly every conversation. But what do we really mean when we talk about trust? In this conversation, Dr. Altaf Saadi and Dr. Consuelo H. Wilkins examine the concept of trust, what we mean when we talk about trust, and how trust is necessary to address health disparities.

A few of the questions our panelists answered included:

  • What do we mean when we talk about trust?
  • How can trust be built?
  • What causes trust to break down?
  • How can we measure trust?
  • How can communities use existing, trusted relationships to address health disparities?
  • How can health care providers and health care institutions be more trustworthy?

You can watch the video below.

To download the audio, click here.

To download the transcript, click here.

Show Notes

  • Trust is a complex term because it can exist in a variety of circumstances. Dr. Consuelo defines trust as a reliable belief or, more specifically, a reliability, validity, or the competence of something or someone
  • For people who are marginalized, minoritized, and/or have been abused or exploited in the past, distrust of medical care may be a natural defense mechanism based on past experiences, not based on credentials or experience
  • Try not to judge people for their mistrust, but rather, have the humility to think, “I can imagine why this person might not trust this information or find it reliable”
  • Within the medical profession in particular, trust can be built on an individual level as well as on an organizational level
  • To build trust on an individual level, it is important to validate a person’s feelings and experiences as their truth; to believe that they are as important as you are; to understand and exhibit effective communication among different kinds of people; and to show empathy without invalidating the person in the process by relating the experience to yourself
  • To build more trust on an organizational level, new policies need to be enacted. Some examples of policy change that may increase patient trust might be increasing appointment lengths, creating new billing codes to support longer appointment times, and including topics such as effective communication across cultures into the educational curriculum for medical professionals
  • It is important to understand that a person who has a general mistrust of medical care may develop trust with an individual professional. This, however, does not automatically transfer to all medical professionals
  • For communities that are mistrusting of medical care in general, an effective way to get them proper medical information and care may be to give the appropriate materials to a trusted individual within the community, who can then distribute the information

additional resources

How to Communicate More Effectively With Your Doctor

Toolkit for Providers Serving Immigrant Communities

Health Disparities and Parkinson’s: Understanding the Issue

Health Disparities and Parkinson’s: Bridging the Gap Between Urban and Rural

General Academic Neurologist and Associate Director of Asylum Clinic at Massachusetts General (MGH) and instructor of neurology at Harvard Medical School. She is also associate director of the MGH Asylum Clinic.

d

d

d

Consuelo H. Wilkins, MD, MSCI

Vice President for Health Equity, VUMC
Associate Dean for Health Equity, Vanderbilt SOM
Engagement Core Director, All of Us Research Program
Associate Director, Vanderbilt Institute for Clinical and Translational Science
Professor of Medicine, Division of Geriatric Medicine
Geriatric Medicine Fellowship Program Faculty

f

 Moderator

David Leventhal

Program Director, Dance for PD®, Mark Morris Dance Group, and Board of Directors, Davis Phinney Foundation

d

Learn More about Health Disparities and Parkinson’s

We created our Health Disparities and Parkinson’s Webinar Series as part of our commitment to understanding and working to change deeply rooted inequities in healthcare that black, brown, and indigenous communities; LGBTQ+; immigrant, and refugee communities; and people of color experience. Learn more and register for the next webinar in the series here.

Presented in partnership with:

The post [WEBINAR RECORDING] HEALTH DISPARITIES AND PARKINSON’S: UNDERSTANDING THE ROLE OF TRUST appeared first on Davis Phinney Foundation.

]]>Health Disparities and Parkinson’s: Understanding the Role of Trusthttps://davisphinneyfoundation.org/health-disparities-and-parkinsons-trust/
https://davisphinneyfoundation.org/health-disparities-and-parkinsons-trust/#respondTue, 13 Apr 2021 10:00:00 +0000https://davisphinneyfoundation.org/?p=1063831Racial differences in Parkinson’s treatment and mortality exist. When it comes to addressing these disparities, the concept of trust comes…

The post Health Disparities and Parkinson’s: Understanding the Role of Trust appeared first on Davis Phinney Foundation.

]]>

Racial differences in Parkinson’s treatment and mortality exist. When it comes to addressing these disparities, the concept of trust comes up in nearly every conversation. But what do we really mean when we talk about trust? In this conversation, Dr. Altaf Saadi and Dr. Consuelo H. Wilkins examine the concept of trust, what we mean when we talk about trust, and how trust is necessary to address health disparities.

In this episode, our panelists discuss:

  • What do we mean when we talk about trust?
  • How can trust be built?
  • What causes trust to break down?
  • How can we measure trust?
  • How can communities use existing, trusted relationships to address health disparities?
  • How can health care providers and health care institutions be more trustworthy?

To download the transcript, click here.
Note: This is not a flawless word-for-word transcript, but it’s close.

Show Notes

  • Trust is a complex term because it can exist in a variety of circumstances. Dr. Consuelo defines trust as a reliable belief or, more specifically, a reliability, validity, or the competence of something or someone
  • For people who are marginalized, minoritized, and/or have been abused or exploited in the past, distrust of medical care may be a natural defense mechanism based on past experiences, not based on credentials or experience
  • Try not to judge people for their mistrust, but rather, have the humility to think, “I can imagine why this person might not trust this information or find it reliable”
  • Within the medical profession in particular, trust can be built on an individual level as well as on an organizational level
  • To build trust on an individual level, it is important to validate a person’s feelings and experiences as their truth; to believe that they are as important as you are; to understand and exhibit effective communication among different kinds of people; and to show empathy without invalidating the person in the process by relating the experience to yourself
  • To build more trust on an organizational level, new policies need to be enacted. Some examples of policy change that may increase patient trust might be increasing appointment lengths, creating new billing codes to support longer appointment times, and including topics such as effective communication across cultures into the educational curriculum for medical professionals
  • It is important to understand that a person who has a general mistrust of medical care may develop trust with an individual professional. This, however, does not automatically transfer to all medical professionals
  • For communities that are mistrusting of medical care in general, an effective way to get them proper medical information and care may be to give the appropriate materials to a trusted individual within the community, who can then distribute the information

additional resources

How to Communicate More Effectively With Your Doctor

Toolkit for Providers Serving Immigrant Communities

Health Disparities and Parkinson’s: Understanding the Issue

Health Disparities and Parkinson’s: Bridging the Gap Between Urban and Rural

meet the panelists

Altaf Saadi, MD, MSc
General Academic Neurologist and Associate Director of Asylum Clinic at Massachusetts General (MGH) and instructor of neurology at Harvard Medical School. She is also associate director of the MGH Asylum Clinic.d

Consuelo H. Wilkins, MD, MSCI
Vice President for Health Equity, VUMC
Associate Dean for Health Equity, Vanderbilt SOM
Engagement Core Director, All of Us Research Program
Associate Director, Vanderbilt Institute for Clinical and Translational Science
Professor of Medicine, Division of Geriatric Medicine
Geriatric Medicine Fellowship Program Faculty

Presented in partnership with:

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*The Third Season of the Parkinson’s Podcast is made possible through generous support in honor of Dr. Margaret Hilgartner.

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The post Health Disparities and Parkinson’s: Understanding the Role of Trust appeared first on Davis Phinney Foundation.

]]>https://davisphinneyfoundation.org/health-disparities-and-parkinsons-trust/feed/0Thank a frontline worker with Parkinson’s Cards to Heroeshttps://davisphinneyfoundation.org/parkinsons-cards-to-heroes/

Tue, 13 Apr 2021 09:50:50 +0000https://davisphinneyfoundation.org/?p=1063845To address a common challenge of living with Parkinson’s while honoring everyday heroes during the COVID-19 pandemic, Neurocrine Biosciences has…

The post Thank a frontline worker with Parkinson’s Cards to Heroes appeared first on Davis Phinney Foundation.

]]>To address a common challenge of living with Parkinson’s while honoring everyday heroes during the COVID-19 pandemic, Neurocrine Biosciences has created Parkinson’s Cards to Heroes, a community-based program centered around handwritten letters from people living with Parkinson’s.

“One of the challenges of living with Parkinson’s…[is] losing the ability to hold a favorite pen to write a note or a letter or to sign a check. Therapeutic exercises like handwriting practice have been shown to help. This kind of practice can improve handwriting, increase brain activity, and keep patients more connected to who they are.”
– Neurocrine Biosciences

Cramped or small handwriting, called micrographia, affects a high percentage of people living with Parkinson’s. Parkinson’s Cards to Heroes was designed to help motivate people with Parkinson’s to keep up their handwriting exercises through the act of transcribing messages of gratitude to everyday heroes around the nation, including those at the frontlines of the COVID-19 pandemic. Launched in late July 2020, more than 500 letters have been written and received by frontline workers across the United States.

How it works

People with Parkinson’s, their care partners, and/or their loved ones can visit PDcardstoheroes.com and request a free kit of custom greeting cards. Neurocrine will mail you a kit with custom cards, exercise grids, instructions, and a pre-paid envelope to Operation Gratitude, which distributes the completed cards to frontline medical workers. Once you’ve written your messages, simply pack up and mail your handwritten cards in the envelope provided.

Request Your Kit

The Parkinson’s Cards to Heroes program offers those who struggle with cramped handwriting a chance to practice their handwriting while thanking those on the pandemic frontlines. To learn more and request your kit, click here.

The post Thank a frontline worker with Parkinson’s Cards to Heroes appeared first on Davis Phinney Foundation.

]]>The Victory SUMMIT® Virtual Event – How to Live Well with Parkinson’shttps://davisphinneyfoundation.org/victory-summit-virtual-event-how-to-live-well-with-parkinsons/

Mon, 12 Apr 2021 19:55:59 +0000https://davisphinneyfoundation.org/?p=1063797The post The Victory SUMMIT® Virtual Event – How to Live Well with Parkinson’s appeared first on Davis Phinney Foundation.
]]>

On April 2, 2021, we held our first ever The Victory Summit® Virtual Event led entirely by people living with Parkinson’s! From sessions on nutrition, exercise, and communication to a Parkinson’s poetry performance by the talented Wayne Gilbert, this Victory Summit event was full of expertise and experience from the people who know Parkinson’s best.

In case you missed it, you can watch all of the main session videos below.

Living Well with Parkinson’s

To download the transcript for “Living Well with Parkinson’s” with Kat Hill and Davis Phinney, click here.

To download the audio for “Living Well with Parkinson’s” with Kat Hill and Davis Phinney, click here.

Communication and Parkinson’s

To download the transcript for “Communication and Parkinson’s,” click here.

To download the audio for “Communication and Parkinson’s,” click here.

Additional Resources for “Communication and Parkinson’s”:

Exercise and Parkinson’s

To download the transcript for “Exercise and Parkinson’s,” click here.

To download the audio for “Exercise and Parkinson’s,” click here. 

Additional Resources for “Exercise and Parkinson’s”:

Nutrition and Parkinson’s

To download the transcript for “Nutrition and Parkinson’s,” click here.

To download the audio for “Nutrition and Parkinson’s,” click here.

Additional Resources For “Nutrition and Parkinson’s”:

Nurturing Resilience Throughout Poetry



To download the transcript for “Nurturing Resilience Through Poetry,” click here.

To download the audio for “Nurturing Resilience Through Poetry,” click here. 

more about our speakers

Kat Hill – Moderator
Pat and Cidney Donahoo – “Communication with Parkinson’s” Panelists
Pete Huley and Krista Ingle – “Communication with Parkinson’s” Panelists
Judith Wilson – “Exercise and Parkinson’s” Panelist
Allan Cole – “Exercise and Parkinson’s” Panelist
Anson Rosenfeldt – Moderator
Edie Anderson – Nutrition and Parkinson’s Moderator
Marty Acevedo – Nutrition and Parkinson’s Panelist
Wayne Gilbert – “Nurturing Resilience Through Poetry” Speaker

Connect with our Ambassadors

Interested in reaching out to one of our Ambassadors? They are available to speak with you through email, phone, video conference, and in-person. You can look to connect with an Ambassador in your area or reach out to anyone you’re interested in talking to, regardless of location. Click here to learn more.

THE VICTORY SUMMIT® VIRTUAL EVENT SERIES

The Victory Summit event is going virtual to reach more people than ever before with information and inspiration to live well today. Each event will focus on unique information for your unique Parkinson’s journey. Learn about the 2021 The Victory Summit virtual events here, and sign up to be notified when registration opens for the other events in the series.

Thank you to our sponsors

The post The Victory SUMMIT® Virtual Event – How to Live Well with Parkinson’s appeared first on Davis Phinney Foundation.

]]>A Day in the Life of a Parkinson’s Ambassador: Gretchen Whitehttps://davisphinneyfoundation.org/parkinsons-ambassador-gretchen-white/

Mon, 12 Apr 2021 10:09:30 +0000https://davisphinneyfoundation.org/?p=1063801Our Davis Phinney Foundation Ambassadors are at the heart of our organization. They are our fearless leaders dedicated to living well…

The post A Day in the Life of a Parkinson’s Ambassador: Gretchen White appeared first on Davis Phinney Foundation.

]]>Our Davis Phinney Foundation Ambassadors are at the heart of our organization. They are our fearless leaders dedicated to living well today, who use their knowledge, passion, and experience to support others going through a Parkinson’s journey. Each Monday during Parkinson’s Awareness Month, we will highlight a “Day in the Life” of one of our amazing Ambassadors. This week, we are happy to feature Gretchen White. Here is “a day in her life,” in her own words:

I work in a nursing facility. During the month of December, our facility was heavily affected by many COVID-19 cases. In total, we lost 32 residents. Twenty-one staff members were out of work because they’d contracted the virus. There were only five original staff on hand and five contract staff who were hired to help. I, along with the other staff, worked 10 to 14-hour shifts, every day. I missed Christmas, dinners with my daughter, cuddle time with my puppies, and a great deal of sleep.

It was during this time, though, that I had more opportunities than ever to talk to our residents who were quarantined and their families, as I became a “go-to” because no visits were allowed.  

One conversation I had, brief but impactful, was with a resident being sent to the hospital because he was having difficulty breathingHe could not say much but held my hand while I prayed for him. I never saw him again. Another meaningful moment was with the daughter of one of my favorite residents. Her mother was not eating and had been in and out of the hospital with pneumonia. I spent 30 minutes standing outside with her in the cold, listening to stories about her mother from her childhood. I didn’t say much. Just listened.  The last conversation I’ll mention here was between our oldest resident (she was 100) and her daughter. The night before finally haa weekend off, I went into her room to say goodbye. I gave her the last rites and prayed. I thanked her for making me smile, sharing her stories, and for being an amazing person. It was her daughter who brought all of what I’d done during this hard time to light. She took me aside two days after her mother passed and thanked me. I responded by saying it was my pleasure, because it had been. 

That month helped me to see that sometimes it is not about what we are going through (pain, medication adjustment, fatigue, stiffness) but what others are going through that makes us who we are. We were chosen to be Ambassadors because we have a light inside of us. Let your light shine so that it may bring those in need (with or without Parkinson’s) to you. 

WANT TO GET TO KNOW MORE OF OUR AMBASSADORS?

Each year, our Ambassadors speak with thousands of individuals and families looking for support and community to help them live well with Parkinson’s. Ambassadors are available to speak with you through email, phone, video conference, and in-person. You can look to connect with an Ambassador in your area or reach out to anyone who you think you would connect well with, regardless of location. Learn more and connect here.

The post A Day in the Life of a Parkinson’s Ambassador: Gretchen White appeared first on Davis Phinney Foundation.

]]>2018 Davis Phinney Foundation-funded research study PUSHES THE PEDALS ON LIVING WELL WITH PARKINSON’S TODAYhttps://davisphinneyfoundation.org/research-pushes-the-pedals-on-living-well-with-parkinsons/

Sun, 11 Apr 2021 10:31:38 +0000https://davisphinneyfoundation.org/?p=1063787At the Davis Phinney Foundation, we’re big fans of cycling. And for a good reason: research studies have shown that…

The post 2018 Davis Phinney Foundation-funded research study PUSHES THE PEDALS ON LIVING WELL WITH PARKINSON’S TODAY appeared first on Davis Phinney Foundation.

]]>At the Davis Phinney Foundation, we’re big fans of cycling. And for a good reason: research studies have shown that many people with Parkinson’s have experienced significant benefits such as improved motor function, aerobic capacity, mood, cognitive function, social connections, and more from pushing pedals regularly. 

The Davis Phinney Foundation funded some of the earliest research studies on the benefits of cycling for people with Parkinson’s, a few of which went on to receive multi-million-dollar funding from the National Institutes of Health. And, just as importantly, they helped countless people with Parkinson’s live well, right away.  

Pushing the Pedal on Cycling Research 

One of these studies began in 2018 when Dr. Anson Rosenfeldt and Dr. Jay Alberts led a project to determine if Pedaling For Parkinson’s™ (PFP), an existing, low-cost program typically hosted by public recreation agencies and YMCAs, can slow Parkinson’s progression. Also, the project sought to identify which individuals respond the most to this type of exercise. This study represented a translation of clinical research to everyday life, showing the power of research on people’s quality of life.  

The research team followed 50 participants, tracking their motor symptoms, non-motor symptoms, number of classes attended, and quality of life over 12 months. 

Manuel Ramos, a study participant and member of the Pedaling For Parkinson’s class in Arvada, Colorado, hopes that the study would “corroborate the belief many of us have that high-intensity exercise like cycling is one of the best things to do to combat Parkinson’s.” 

Motivation to Move 

Manuel had already been participating in the Arvada PFP class for about a year when the study began. “I felt good about the fact that something I was doing to help myself could also be the basis for potential benefits to others with Parkinson’s,” he said. “By participating, I also learned about the various tests we were taking to measure our progress, and it helped me focus on the importance of the exercises we were doing.” 

Like Manuel, Judith Wilson joined the project after having been part of a PFP class. “I frequently heard about Dr. Alberts and his work on spinning and cycling for Parkinson’s treatment. The more I learned, the more intrigued I became, and the more I came to realize that perhaps I could contribute to this ongoing effort to determine Parkinson’s cause(s), cure(s), and eventual prevention.” 

Fred Limbach, too, joined the study after having been an active part of the Arvada PFP class. “When Tom [Palizzi, the leader of the Arvada class] spoke of the opportunity to participate in a study by the Cleveland Clinic and funded by the Davis Phinney Foundation, I readily joined. I knew of both groups and their excellent reputations, and it was a chance to see if forced exercise slowed the symptoms of Parkinson’s. Being part of a study group allows one to discover a new treatment and eventually a cure hopefully.” 

The Research Study Experience 

Judith says that at the beginning of the study, the participants completed physical and cognitive assessments and were given a heart rate monitor and a cadence (RPM) monitor used to collect data in each spin episode. “Then, we were off!”  

She says that their PFP group “continued on its merry way – working hard every session but having so much fun that occasionally an outsider would pass the room and turn around and come back, requesting to join the group that was ‘having too much fun doing something as hard as spinning!’” 

Observing the quantifiable variation of one day’s ride compared to another was interesting, Judith says, as was seeing how “consistent pictures of each of our capabilities and performance outcomes became noticeable over time.” 

Encouraging Data and Personal Outcomes 

Data from the study suggested just what Manuel had predicted it would. Findings indicated that cycling might be an ideal mode of exercise for people with Parkinson’s because it enables individuals to achieve and maintain a moderate to high intensity of exercise regardless of disease severity. The study’s compliance data showed that people with Parkinson’s regularly attend community-based cycling classes without external encouragement. They can achieve and maintain moderate levels of exercise intensity without direct oversight.  

That’s because, the participants say, being part of PFP is a joy. “The best part is being with others who have Parkinson’s so we can share support, experiences, news,” Manuel says. “There is no pressure, no stress. Participants vary a lot in terms of cycling experience, and I’ve never heard anyone in the class criticize any other participant. The instructors are very helpful and supportive, and the other cyclists provide advice and suggestions, especially the more experienced cyclists who often are eager to offer tips, suggestions, and equipment recommendations.” 

“PFP is nothing short of amazing. It offers opportunities you may not see in any other Parkinson’s setting. You will build relationships. You will build a community. And, you will increase your health quotient.”
-Judith Wilson

Fred agrees, both about the physical benefits of the study and PFP itself. “The study was very positive, with both short-term and long-term personal benefits,” he says. “The short-term impact was that I grew stronger in my biking. The long-term benefit is I have had a lot of fun, and I feel better. Exercising in a group and the camaraderie you feel is very supportive. Plus, the study emphasized that exercise is one thing I can do and enjoy that has a positive impact on my quality of life.” 

Judith says she’s occasionally asked why she chose to be part of a research project that was “so hard, for so long.” The answer, she says, is “really fairly simple. I knew from the beginning that participating in this would allow me to make a difference in the lives of real people – helping to increase the body of knowledge about Parkinson’s, leading to more and better treatment options, and potentially leading to the discovery of a cure(s) and preventative measures.” 

A side benefit of being one of the study subjects, she says, was the discovery that she still can improve physical performance. “I discovered three things about myself, which I believe are directly attributable, at least in part, to the study program: 1) over time, I was able to achieve and maintain an increased intensity of effort; 2) I could improve my overall performance better under guidance (forced effort) than I could do on my own; and 3) I discovered that I enjoy tandem cycling a lot, and the 50-year relationship my husband Ken and I shared was not threatened by communication, cooperation, and trust required by the two wheels of the tandem!” 

Long-term Commitments 

Almost three years after the Pedaling For Parkinson’s study began, Manuel says he does not doubt that “cycling can slow down the progression of Parkinson’s, so I take it regularly and consistently, like any of my other medications.” 

Fred, too, remains an active PFP cyclist. “All a person needs to get is a stationary bike to get involved in Pedaling for Parkinson’s and enjoying the benefits of exercise,” Fred says.  

From left to right: Judith Wilson, Davis Phinney and Ken Wilson

Having once said about herself that “a cyclist I am not,” Judith is now a cyclist role model. “I have never been in better physical condition in my entire life than I am right now,” she says, “and PFP has had a substantial role in helping me to get to where I am today.” 

How You Can Get Involved 

Our research program at the Davis Phinney Foundation, like our core mission, is uniquely focused on helping people with Parkinson’s live well today. Each year, we partner with leading researchers and institutions to fund quality of life research that shows promise to help change how people live with Parkinson’s, not years in the future but right away. Guided by our Science Advisory Board, we have supported more than 30 research studies focused on exercise, nutrition, gait, speech, telemedicine, alternative therapies, and other interventions that affect quality of life. Many of these studies have progressed to late-stage clinical research. Others have received NIH and PCORI funding, while others have become therapies that are being used today by people living with Parkinson’s. And some, like the Pedaling For Parkinson’s study, do all of these, helping countless people with Parkinson’s live well immediately (and years later as well). 

You can play an essential role in this research by supporting our Quality of Life Research Fund. Click here to learn how your contributions help our Science Advisory Board say “yes” to more promising research projects that change people’s lives. 

The post 2018 Davis Phinney Foundation-funded research study PUSHES THE PEDALS ON LIVING WELL WITH PARKINSON’S TODAY appeared first on Davis Phinney Foundation.

]]>Building Your Parkinson’s Care Teamhttps://davisphinneyfoundation.org/building-your-parkinsons-care-team/

Wed, 07 Apr 2021 10:12:35 +0000https://davisphinneyfoundation.org/?p=1063742Living well with Parkinson’s means living well in all aspects of your life—physical, mental, social, spiritual. One provider can’t possibly treat every part of your…

The post Building Your Parkinson’s Care Team appeared first on Davis Phinney Foundation.

]]>Living well with Parkinson’s means living well in all aspects of your life—physical, mental, social, spiritual. One provider can’t possibly treat every part of your life, so, ideally, over time, you will build a holistic, integrated care team and plan that is personalized to YOUR symptoms, needs, and goals. 

In the beginning, your primary care physician and neurologist or movement disorder specialist may be the only two people you need on your care team. However, your team may grow to include anywhere from three to ten or more providers over the years. Everyone is differentand not everyone will need the same types and number of providers. To give you an idea of the many professionals who can help you live well with Parkinson’s every day, here are some to consider. 

Neurologists and Movement Disorder Specialists  

A neurologist is a medical doctor specializing in the nervous system’s conditions (the brain and the spinal cord). They can confirm a Parkinson’s diagnosis and establish an appropriate treatment plan.   

A movement disorder specialist (MDS) is a neurologist with additional training in movement disorders. Your MDS will most likely be the person on your medical care team who is most familiar with the full spectrum of Parkinson’s medications and treatments. They see thousands of people with Parkinson’s every year; so, they have probably helped people with issues similar to yours before.  

Finding an MDS close to you isn’t always possible, but having one on your medical care team can be the difference between living well with Parkinson’s and just getting by. Because you may only need to see your MDS in person once or twice a year, driving a few hours to these appointments is likely to be time well spent. And with current advances in technology, you may be able to add an MDS to your care team through telemedicine, which is becoming more mainstream every day.  

A female neurologist points to a poster of a cross section of the brainIf you don’t have a movement disorder specialist close to home, and you aren’t able to see one via telemedicine, seek out an empathetic neurologist or primary care doctor who will listen to you and your family, work with you to define your needs and goals, and be open to your suggestions and ideas. If your local care team doesn’t include a movement disorder specialist, but you can travel occasionally to see one in another city, your movement disorder specialist and local physician can work together to address your needs.    

Primary Care Physicians  

Your primary care physician (PCP) will play an essential role in problems unrelated to Parkinson’s, monitor your general health, and make sure you stay up-to-date on preventive medical screening tests. This physician also provides general health education and will work with you to diagnose and treat your general medical problems and ensure that you receive routine dental and vision care. Managing your healthcare without a PCP is like an orchestra playing without a conductor. Your PCP may help identify potential medication interactions and assist you in finding additional specialists if needed.  

Avoid waiting until you have a problem or are sick before you see your PCP. Schedule a yearly examination to focus on your current medical issues, detect new problems, and prevent future problems. Keep your PCP updated on any changes in your Parkinson’s symptoms and treatment, as this may influence how other problems are treated and help you avoid medication interactions. 

Nurses  

Nurses are important and often underutilized care team members and can be strong liaisons between hospitalsmedical offices, and the community. Nurses are often the first line of access, and if your question or concern is a problem they cannot solve, they know who on the team can.    

Neuropsychologist  

Neuropsychologists specialize in the relationship between behavior and brain function. Cognitive impairment and behavioral complications such as depression, anxiety, and apathy can be some of the earliest symptoms people with Parkinson’s notice, often before they even get an official diagnosis. Most people with Parkinson’s will experience these issues at some point. If you do, a great first step to treatment is to get evaluated by a neuropsychologist who specializes in neurological disorders. They can assess your thinking skills, including memory, attention, reaction time, language, and visual perception. They will also assess your emotional functioning. Your results will then be combined with the rest of your medical record to help your neuropsychologist develop a diagnosis and recommendations for improving your quality of life. One of the benefits of getting an evaluation like this early on is that you will see how your Parkinson’s is progressing over time and act as soon as possible to manage your symptoms.   

Counseling session

Psychologist, Social Worker, or Counselor 

Professionals who focus on emotional health and well-being will be helpful throughout your Parkinson’s journey. Counselors, social workers, and psychologists are trained to assess emotional difficulties and work with you and your doctor to promote good mental health. They can help you cope and stay positive. They can also help you manage stress that can make Parkinson’s symptoms worse, causing additional strain on you and your family. They can serve as guides for both you and your family, helping you to respond with resilience to changes you hadn’t anticipated.  

Psychiatrist  

Psychiatrists are medical doctors who specialize in mental health. They are qualified to assess both the psychological and physical aspects of psychological problems and prescribe medication. If you experience emotional symptoms such as anxiety, depression, or apathy, a psychiatrist can work with you to adjust your medication regimen in ways that can help.  

Spiritual Advisor/Chaplain  

If faith is part of your life, a pastor, chaplain, rabbi, or other spiritual advisors can help you find peace, discover meaning, and accept life changes within the comfort and context of your beliefs. Whether within the construct of traditional religions or through other forms of spiritual expression, many people rely on these advisors to provide the support and hope they need to embrace the future.  

Physical Therapist  

Physical therapy can help you improve strength, flexibility, and mobility, and it can also decrease stiffness and pain related to Parkinson’s. Many people with Parkinson’s don’t realize how valuable a physical therapist (PT) can be to their care team in the early days; however, the people we know who have worked with them consistently have received tremendous value from doing so – both physically and emotionally.   

A female physical therapist helps a female patient with walking exercisesWhen you begin seeing a PT early after your diagnosis, they can teach exercises that address any current weaknesses, which will allow you to stay stronger and mobile for longer. You may ride your bike every day or still run multiple marathons a year; however, there’s a good chance you still have some gaps in your flexibility or mobility that physical therapy could close. Also, by getting an assessment early, your PT will be able to see how your Parkinson’s is progressing over time so they can give you exercises to address areas that may be getting weaker.   

Occupational Therapist  

Occupational therapy (OT) is the only profession that helps people across the lifespan do things they want to do through therapeutic activities (occupations). Occupational therapists enable people of all ages to live life to its fullest by helping them promote health and prevent or live better with injury, illness, or disability.  

OT interventions focus on adapting the environment through modifications, modifying the task, teaching a skill, and educating the person, care partner, and family to increase participation and ability to perform daily activities. OT is practical and customizable, focusing primarily on activities that are important and meaningful to you.  

Speech-Language Pathologist  

As Parkinson’s progresses, some people find it difficult to speak loudly, pronounce words clearly, speak fluidly, and show facial expression. However, it is possible to improve all these symptoms by working with a speech therapist or speech-language pathologist. These rehabilitative professionals can also help you with eating, swallowing issues, saliva management, dry mouth, drool, and more.  

Pharmacist  

Most likely, you and your care partners will see a pharmacist regularly. And, because they will know all the medications you take — those that are related to Parkinson’s and those that aren’t — they will be on the lookout for medication interactions that your primary doctor may not always be aware of. Whenever you’re prescribed a new medicine, be sure to ask your pharmacist if there’s anything you need to know about how it might interact with other meds you’re taking. Pharmacists can also advise about crushing pills, splitting doses, easy-open bottles, and more.  

Male pharmacist looking at inventory and taking notesRegistered Dietician  

When it comes to nutritional plans, what works for you may not work for someone else. And for every article (peer-reviewed or otherwise) on why diet X is the best, there is another one that claims Y is better. To find the best nutritional strategy for you, see a registered dietician (RD) specializing in working with people with Parkinson’s or other neurological disorders. RDs are usually the most qualified health professionals on nutrition and dietetics, unless your primary care doctor, neurologist, or movement disorder specialist specializes in that field. 

Family and Friends   

Your family members are also living with Parkinson’s and will be key partners throughout your journey. They can work with you to assemble your care team and be the record keeper of therapies and outcomes. Look to your friends and community as sources of healthy social connectivity and for support. 

YOU  

Then, of course, there’s you.   

YOU are the most critical member of the team. Think about the role you want to play as the primary team member. Be an active participant in managing your condition. Being engaged and empowered in your care gets results.  

Group of people celebrating and holding hands in a circle in a parkYou, your care partner, and your family need a support system that will be in place for the duration of your journey with Parkinson’s; so, do not wait to reach out and start adopting a holistic approach. Create a team of providers who can offer expertise in many different areas. Be an advocate for yourself as you build a team of providers who listen, respect your input, and with whom you feel comfortable. Being a strong self-advocate will give you a strong foundation and help you to live well with Parkinson’s today and for many years to come.   

Want more articles like this?

Much more can be found in our Every Victory Counts® manual. It’s packed with up-to-date information about everything Parkinson’s, plus an expanded worksheets and resources section to help you put what you’ve learned into action. Request your free copy of the Every Victory Counts manual by clicking the button below.

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Thank you to our 2021 Peak Partners,  AdamasAmnealKyowa Kirin, and Sunovion, for helping us make printing, distribution, and shipping of the Every Victory Counts manual possible.

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]]>A Day in the Life of a Parkinson’s Ambassador: Patti Burnetthttps://davisphinneyfoundation.org/parkinsons-ambassador-patti-burnett/

Mon, 05 Apr 2021 10:46:32 +0000https://davisphinneyfoundation.org/?p=1063633Our Davis Phinney Foundation Ambassadors are at the heart of our organization. They are our fearless leaders dedicated to living…

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]]>Our Davis Phinney Foundation Ambassadors are at the heart of our organization. They are our fearless leaders dedicated to living well today, who use their knowledge, passion, and experience to support others going through a Parkinson’s journey. Each Monday during Parkinson’s Awareness Month, we will highlight a “Day in the Life” of one of our amazing Ambassadors. This week, we are happy to feature Patti Burnett. Here is “a day in her life,” in her own words:

Today, on vacation in Moab, my husband, Dan, and I mountain biked the Bar M Loop, a beginner trail with scattered, difficult ups and downs, through sand and over rocks, but without any dangerous, steep switchbacks that so challenge my balance and courage. As I biked along, I had some time to reflect as I relished the amazing scenery of Arches National Park. Here’s what came to mind: 

I grew up in a family of eight, with four brothers. Constantly trying to meet my father’s approval, I found myself competing with my male siblings as well as the boys at the local skating rink and ski resort. I became the first girl in my school district to compete on the boys’ interscholastic ski team. I supervised a ski patrol in the 80’s, 90’s and early 2000’s, working in an extremely male-dominated environment. I have always taken the approach that if it’s possible, I can meet most challenges. However, in May 2013, everything changed.

I learned that I had Parkinson’s, and I seriously questioned whether I could accept this hand I had been dealt.

For the first time in my life, I doubted God’s goodness or omnipotence. I lost all confidence in my ability to meet my responsibilities as a wife, mother, grandmother, and friend. 

Patti Burnett and familyOthers also questioned my abilities. Some people with Parkinson’s told me I would not be able to walk after a while, let alone ski, skate, bike, and run. A Movement Disorders Specialist PA told me that my various methods of CAM (Complementary Alternative Medicine) therapies were a waste of time; did I not realize that Parkinson’s is a progressive neurological disease – that I would continually lose more and more function in every system of my body? 

Well, the challenge was on. I gritted my teeth and looked at Parkinson’s from every angle, with the goal of exposing Parkinson’s weaknesses.

I found that through better nutrition, it was possible to improve my gut function, which improved my digestive processes. I discovered that through cross-country skiing, hiking, and running, I was able to improve my arm swing and gait. I learned that through multiple types of exercise (yoga, aerobics, high intensity intervals, weights, spinning, skiing, snowshoeing, running, hiking, stretching), I was able to keep my brain alert. 

I ran into a rather large hiccup from August 2019 to April 2020 that seriously impacted my training regimen. I was hit by a number of major accidents and illnesses: 

  1. In August of 2019, I tripped while hiking and fell onto the handle of my hiking pole, breaking multiple ribs and puncturing my left lung, which resulted in a pneumothorax. Under the leadership of my husband, who was the on-call search and rescue mission coordinator, I was evacuated from the back country, and a surgeon placed a number of plates and screws in my ribs to stabilize them. 
  2. In September of 2019, I fell while trail running and broke my nose. 
  3. In October of 2019, I was standing on a swivel chair while trying to reach some Christmas decorations and fell, badly fracturing my left wrist. Again, plates and screws were implanted. 
  4. In March of 2020, I became extremely ill and was experiencing covidlike symptoms. An appointment resulted in a negative result for covid, but I was immediately admitted to St. Joseph’s where, after many tests, I was found to have Pneumonia, fluid on my diaphragm, and two large, infected cysts, the size of baseballs, in my left kidney. A decortication resulted in my maintaining 70% function in that kidney. 
  5. The spring of 2020, I was diagnosed with osteoporosis, despite a bone scan I’d had just a few years earlier indicating very strong, healthy bones. 

A reasonable person might begin to wonder if they should be allowed outside unsupervised. My husband feared every time I did anything remotely risky that he’d get a call from one of a nearby emergency room.  

You might be wondering what this has to do with my family vacation in Moab, UT, perhaps the Mountain Biking Mecca of the United States (perhaps even the world). Before we arrived, everyone assumed that I would not participate in the mountain biking activities. A few days later, I asked about a trail that my sons-in-law and daughters had biked, wondering if it was easier than an intermediate trail they’d biked the day before. “Oh, yes!” they said. Perhaps I could bike it, then? “Oh, no!” they said. I was hurt. Maybe even brokenhearted. 

I broached this topic again the following night, the last night of our vacation. I wondered if everyone was losing confidence in my abilities.

Would everything be taken away from me, little by little? Would everything in my life become smaller? My voice, my steps, my thoughts, my plans, my life, my God? 

Last Christmas, my sister’s gift to me was a sweatshirt that features a female ski racer running gates. “Underestimate me,” it reads. That’ll be fun.” It’s not a sweatshirt I would have purchased for myself, but my sister knows me well.  

I am not one to be underestimated, and least of all by myself. Today, I know that I am still Patti Burnett. I still love my family and friends. I still love God. I still can ski your pants off. Of Colorado’s 54 14,000’ peaks, I still have 14 to complete, and I am challenging myself to climb those 14 14ers in 14 months, from July 2021 until September 2022.  

Today, and tomorrow, I do not, and will not, allow challenges to get the best of me.”

Want to get to know more of our ambassadors?

Each year, our Ambassadors speak with thousands of individuals and families looking for support and community to help them live well with Parkinson’s. Ambassadors are available to speak with you through email, phone, video conference, and in-person. You can look to connect with an Ambassador in your area or reach out to anyone who you think you would connect well with, regardless of location. Learn more and connect here.

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]]>How to Communicate What Parkinson’s Is to Friends and Familyhttps://davisphinneyfoundation.org/how-to-communicate-what-parkinsons-is-to-friends-and-family/

Sun, 04 Apr 2021 10:00:14 +0000https://davisphinneyfoundation.org/?p=1063724You’ve taken the time to process your Parkinson’s diagnosis. You’ve started exploring trusted resources about symptoms, treatments, and actions you…

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]]>You’ve taken the time to process your Parkinson’s diagnosis. You’ve started exploring trusted resources about symptoms, treatments, and actions you can take to live well. You’ve embraced your feelings, grounded yourself, planned your course of action. You’ve experienced what Parkinson’s is like for you. How, though, do you communicate what Parkinson’s is (for you) to others?

Describing Parkinson’s to people who don’t have it is complicated for a number of reasons. To begin with, it is an exceptionally complex neurological disorder, and there are still numerous aspects of Parkinson’s that remain a mystery. Second, everyone’s experience with Parkinson’s is different. So, even if someone knows another person with Parkinson’s, what Parkinson’s is for you may be very different than what Parkinson’s is that other person. Third, you may be at the point where you’re not experiencing many symptoms, or the symptoms you are experiencing aren’t noticeable to others. And fourth, because Parkinson’s is simply a part of your life, not your whole life, you probably don’t want it to dominate every conversation!

So, when a friend, colleague, extended family member, or even a healthcare professional who knows only the basics of Parkinson’s asks you to explain it, what do you say? If you don’t wish (or have the time or energy) to paint an in-depth portrait of your unique Parkinson’s, but you do wish educate others, simply stick to the basics. To help, here’s a list of short, to-the-point Parkinson’s “talking points” you can pull out when you need them.

What is Parkinson’s? 

  • Parkinson’s is a complex neurological disorder associated with a loss of dopamine-producing nerve cells deep inside the brain 
  • Dopamine is a neurotransmitter (a chemical substance) that helps regulate the body’s movement 
  • Less dopamine in the brain means less control over movement and less mobility in general 
  • Parkinson’s is the world’s fastest growing neurological brain disease, affecting 1.2 million people in the US and an estimated 10 million people worldwide 
  • Parkinson’s is officially classified as a movement disorder because it involves damage to the areas of the brain, nerves, and muscles that affect the speed, quality, fluency, and ease of movement 
  • Common motor symptoms are tremor, stiffness, slowness, and postural instability 
  • While the effects of Parkinson’s on movement are often the most visible symptoms, non-motor symptoms can sometimes have an even greater impact on quality of life 
  • Common non-motor symptoms include constipation, sleep problems and fatigue, depression and/or anxiety, pain, and cognitive changes 
  • Parkinson’s is both chronic and progressive, which means symptoms will change and get worse over time. In other words, my Parkinson’s will never get better, though I hope treatments can help mask it as much as possible 
  • The rate of progression varies from person to person  
  • Everyone with Parkinson’s experiences symptoms differently, and not everyone with Parkinson’s experiences the same symptoms 

What treatment options exist? 

  • Many pharmacological treatments for Parkinson’s work to replace or enhance lost dopamine 
  • Treatment typically includes some combination of medication, exercise, rehabilitation strategies (like physical, occupational, and speech-language therapy), and complementary therapies (like mindfulness and meditation, acupuncture, and many more), and sometimes surgical therapies
  • The gold-standard medication for Parkinson’s is levodopaa central nervous system agent that helps minimize symptoms because it is converted to dopamine in the brain 
  • Surgical therapies include Deep Brain Stimulation (DBS)carbidopa/levodopa enteral suspension (Duopa®)focused ultrasound, Transcranial Magnetic Stimulation, and more  

What are some steps you can take to live well every day 

Helping people understand Parkinson’s isn’t easy. Stereotypes, misunderstandings, healthcare, and the media have done a good job of either misrepresenting or stigmatizing people with Parkinson’s ever since it was first recognized as a disease. While it is not your job as a person with Parkinson’s to teach people about Parkinson’s (how exhausting!), finding people who are open, kind, and patient and sharing your story with them is a step toward creating a more inclusive environment for everyone living with it. Authentic conversations about Parkinson’s can create meaningful change. So, the next time you’re asked what Parkinson’s is all about, if you have the desire and energy, go ahead and teach them a little something. 

Of course, your conversations about Parkinson’s will change over time and vary depending on the people you’re talking to. Share as much as you feel comfortable sharingFind balance in your conversations. And remember that you know your Parkinson’s best, and you can guide conversations about it in the direction you choose.  

More Resources on Communicating about Parkinson’s 

How to Communicate What It Means to be OFF 

How to Communicate with your Parkinson’s Doctors  

How to Communicate with Children about Parkinson’s 

How to Help Children Understand Parkinson’s 

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