El diagnóstico de una enfermedad crónica puede ser el comienzo de muchos desafíos. Aprender los matices de una enfermedad crónica es un viaje en sí mismo. Podemos concentrarnos mucho en navegar estos desafíos y perder de vista lo que es más importante: nuestras relaciones. Este taller le ayudará a comprender mejor las enfermedades crónicas y le brindará habilidades aplicables para mejorar sus relaciones.
Presentador
Federico Mendez, LMFT
Consejero clínico y técnico
Cannenta, Center for Healing and Empowerment www.cannentacenter.com
Este programa es gratuito y está disponible para cualquier persona interesada, incluyendo a las personas con Parkinson y sus familiares, amigos, personas de apoyo y promotores de salud.
APDA Minnesota Chapter, Parkinson's Foundation, and the Udall Center at the University of Minnesota are the three leading organizations for Parkinson's disease advocacy in Minnesota. We are excited to invite you to the annual Spring Parkinson's Symposium on April 11, 2023. Attend in-person or online.
This event will feature a free vendor exhibit, lunch, and educational presentations about living well with Parkinson's disease. We will also have a panel discussion highlighting the stories and experiences of people with PD.
Speakers
Managing Exercise as Parkinson's Progresses Beth Wittry, PT, DPT, Courage Kenny Rehabilitation Institute
Research Overview: Gait and Balance Dr. Colum McKinnon, Udall Center at the University of Minnesota
Urinary Issues & Constipation Dr. Martha Nance, Struthers Parkinson Center
For in-person attendees: Check-in and resource fair is from 9 a.m - 9:45 a.m. A boxed lunch will be served at 11:30 a.m.
For virtual attendees, via Zoom: The morning's presentations (from 9:45 a.m to 11:30 a.m.) will be shared virtually. The entire program will be recorded and available for viewing on the 3 organizations' websites 1-2 weeks after the symposium.
This program is open to people with Parkinson's, their family, friends and the community.
COVID SAFETY: The health and safety of our participants, sponsors, volunteers and staff are our top priority. We continue to monitor CDC recommendations and will adhere to state and local COVID guidelines in place on the event day. Adjustments will be made if necessary.
Parkinson’s Champions athletes raise funds and awareness for the Parkinson’s Foundation while competing in some of the world’s most popular races. Every step we take brings us closer to a future without Parkinson’s disease, because Parkinson’s isn’t a sprint, it’s a marathon.
Although Parkinson’s disease (PD) is known as a movement disorder, for many people living with PD, mood disturbances, such as depression, anxiety and apathy, are some of the most troublesome symptoms. Recognizing mood changes and deciding when it’s time to seek help are the first steps to building your mental health team. An important part of this process is finding and connecting with the right specialists.
Join us to learn how others are managing mental health challenges and building their mental health team during this candid, virtual conversation.
Parkinson’s Champions athletes raise funds and awareness for the Parkinson’s Foundation while competing in some of the world’s most popular races. Every step we take brings us closer to a future without Parkinson’s disease, because Parkinson’s isn’t a sprint, it’s a marathon.
Join health psychologist, Taylor Rush, PhD, as she explores different dimensions of a mindfulness practice. She will share ways to ground and settle the mind and body. These mindfulness techniques can offer moments of respite and clarity that can be useful throughout your week. Find a comfortable seat and join your mindful Parkinson's community for a special session.
Whether this is your first mindfulness Monday or you are a returning participant, these sessions are created with the intention of including everyone. There will be time for questions following the practice.
Speaker
Taylor Rush, PhD, Health Psychologist
Director of Behavioral Services and Interdisciplinary Programs
Center for Neurological Restoration
Cleveland Clinic, A Parkinson's Foundation Center of Excellence
There is no charge to attend, but registration is required.
Parkinson’s Champions athletes raise funds and awareness for the Parkinson’s Foundation while competing in some of the world’s most popular races. Every step we take brings us closer to a future without Parkinson’s disease, because Parkinson’s isn’t a sprint, it’s a marathon.
Mindfulness of breath is one of the cornerstones of meditation practice. In this session we will review the benefits of bringing awareness to the breath in relation to managing symptoms of Parkinson’s and offer a guided meditation on mindfulness of the breath.
Whether this is your first mindfulness Monday or you are a returning participant, these sessions are created with the intention of including everyone. There will be time for questions following the practice.
Speaker
Nico Hase, PhD
There is no charge to attend, but registration is required.
Parkinson’s Champions athletes raise funds and awareness for the Parkinson’s Foundation while competing in some of the world’s most popular races. Every step we take brings us closer to a future without Parkinson’s disease, because Parkinson’s isn’t a sprint, it’s a marathon.
The referenced media source is missing and needs to be re-embedded.
Participants will learn how research helps shape treatments and identify new care strategies for managing Parkinson’s symptoms. This program will also provide information on current research in Parkinson’s.
*This program may include moderately scientific terms and concepts.
This program is open to people with Parkinson's, their family, friends and the community. There is no charge to attend, but registration is required as in-person seating is limited.
Speakers
Jeffrey H. Kordower, PhD, Center Director & Professor,ASU Banner Neurodegenerative Disease Research Center (NDRC)
Tom Beach, MD, PhD, Director, Brain and Body Donation Program, Banner Sun Health Research Institute
Chapter Supporters The Parkinson’s Foundation is grateful for the unwavering support of our Program Sponsors. We invite you to view our full list of sponsors and learn more about them by visiting our Chapter Supporters Webpage.
COVID SAFETY: The health and safety of our participants, sponsors, volunteers and staff are our top priority. We continue to monitor CDC recommendations and will adhere to state and local COVID guidelines in place on the event day. Adjustments will be made if necessary.
Parkinson’s Champions athletes raise funds and awareness for the Parkinson’s Foundation while competing in some of the world’s most popular races. Every step we take brings us closer to a future without Parkinson’s disease, because Parkinson’s isn’t a sprint, it’s a marathon.
Most people with Parkinson’s disease (PD) will experience changes in speech, voice and swallowing at some point during the course of the disease. Learn tools and exercises to help you better understand and manage speech, swallowing and communication problems in PD.
Speakers
Eric Jackowiak, MD
Neurology, Froedtert and Medical College of Wisconsin
Elizabeth Kelley, SLP
Froedtert
There is no charge to attend, but registration is required. This program is open to people with Parkinson's, their family, friends and the community.
COVID SAFETY: The health and safety of our participants, sponsors, volunteers and staff are our top priority. We continue to monitor CDC recommendations and will adhere to state and local COVID guidelines in place on the event day. Adjustments will be made if necessary.
Parkinson’s Champions athletes raise funds and awareness for the Parkinson’s Foundation while competing in some of the world’s most popular races. Every step we take brings us closer to a future without Parkinson’s disease, because Parkinson’s isn’t a sprint, it’s a marathon.
A while back, I started to notice a difference in my body. After a two-year search to identify and diagnose my symptoms, I finally got a confirmed diagnosis of Parkinson’s disease (PD) in September 2021. This diagnosis was not unexpected, as my older brother had passed away with Parkinson’s five years earlier. My brother had lived with PD for more than 30 years, and he introduced me to the Parkinson’s Foundation.
After I received my diagnosis, I immediately began to search for a gym where I could get out of the house and get someexercise. I was in touch with the Jewish Community Center in Tampa but had not yet joined any of their programs. By the end of September, I became a member of the Jewish Community Center’s Philip Shayman Parkinson’s Program and began the Rock Steady Boxing class immediately. I was not sure I could even participate in exercises due to my low energy, lack of strength and tremors.
The first person I met in the boxing class was Sam Scaff, a volunteer who was coaching the class about boxing techniques. Sam is a retired heavyweight boxer who had boxed professionally. He was instructing the class on boxing techniques designed to help with agility, strength and balance. Sam had been volunteering for this class for over three years and felt it was a calling for him, even though he does not have PD himself.
When I started the class, I was very tired and weak, but I instantly felt like this class was the right place for me. We met twice weekly, and Sam was always there to help us get the moves right. He was very reassuring, helpful and was always joking with me. We became good friends at the gym, but soon that friendship began to blossom. The JCC’s boxing class days became my favorite days of the week! With Parkinson’s disease you often lose social ties, but Rock Steady Boxing gave me the opportunity for not only exercise but also socialization with my peers. I have started a beautiful new relationship with Sam, and I also made many new friends in my classes who all share a common goal: BEAT PARKINSON’S!
In October 2022 I had my annual check-up, and my neurologist was amazed at my incredible progress. My gait, strength, balance and energy had all improved greatly. The Rock Steady Boxing program has allowed me to regain so much energy and strength that I am now able to socialize and maintain my relationship with Sam, as well as being able to play an active role in the lives of my three grandchildren. Exercise is truly the key to managing Parkinson’s. I encourage my peers to challenge themselves to exercise daily — you will feel much better.
Sam is still assisting the class with boxing techniques, and our relationship has grown into a wonderful and supportive pairing. Without the Philip Shayman’s Parkinson’s Program classes, I would have never met Sam or improved my physical and mental health. I tell everyone that exercise is the best thing you can do for Parkinson’s disease. Sam and I walk, box and continue to write our bucket list every day. I hope you will too!
International Genetics Study Reaches 50% Enrollment Milestone of 7,500 Participants
Genetics is a key step in solving Parkinson’s disease (PD). Understanding how and why Parkinson’s and genetics fit together is a mystery the Parkinson’s Foundation is looking to solve through our landmark study, PD GENEration: Mapping the Future of Parkinson’s Disease. The Parkinson’s Foundation is excited to announce that we are accelerating the path to solving the puzzle of genetics and Parkinson’s through reaching a significant study milestone of providing genetic testing and counseling to 7,500 participants — 12 months ahead of the study recruitment timeline.
“Ensuring that the entire Parkinson’s community — including the 90,000 individuals expected to receive a PD diagnosis this year — has access to their genetic status is as critical as ever,” said James Beck, PhD, chief scientific officer for the Parkinson’s Foundation. “Every PD GENEration participant plays a part not only in their own personal discovery but also in feeding results to researchers which will advance future research.”
Halfway to its goal, the study is on track to provide genetic testing and counseling at no cost to 15,000 people with Parkinson’s, which will establish the largest Parkinson’s genomic dataset in North America.
“I cannot underscore enough how relevant this landmark study is. Our current and rapidly expanding knowledge of this complex disease highly suggests that the likely ‘first cure’ to be discovered will be specific to a genetic mutation for PD, which will then serve as a stepping stone for the ultimate cure for the general PD population,” said Hubert Fernandez, MD, Head of Movement Disorders at Cleveland Clinic and co-chair of the Parkinson Study Group.
In 2022, we expanded the study and made access to genetic testing possible for people with Parkinson’s in all 50 U.S. states, Puerto Rico, the Dominican Republic and Canada. In the next two years, we will introduce PD GENEration to Israel and other countries, bringing a new level of diversity and depth to Parkinson’s genetic research, which can lead to greater insights. So far, 22% of participants represent historically marginalized racial and ethnic groups.
The study continues to expand its reach with the addition of testing sites and collaborations with clinicians in historically excluded communities. This includes a partnership with Morehouse School of Medicine, to make the study more accessible for Black and African American persons in Atlanta, GA. Similarly, the Foundation extensively engages Hispanics and Latinos and provides genetic counseling in English and Spanish, a first of its kind for a study of this scale. Roughly 11% of Latino and Hispanic participants have a 17% genetic link to PD.
“Through the expansion of the PD GENEration study to more populations, we are bringing diversity to genetics data. In turn, this will accelerate the pace of research to help all people with Parkinson’s, regardless of where they live.” — Carlos Singer, MD, professor of neurology at the University of Miami Miller School of Medicine
The study’s data are analyzed in real-time by the Parkinson’s Disease Gene Curation Expert Panel (GCEP), an international working group of genetic experts focused on neurodegenerative diseases formed by the Foundation within the NIH-funded Clinical Genome (ClinGen) Resources. Alongside the Parkinson's Foundation, Roy Alcalay, MD, leads the study as principal investigator.
Currently, investigators have found that 14% of participants have a genetic form of PD — a significant observation compared to the long-standing estimate of 10%.
PD GENEration empowers participants to understand their genetic results. This knowledge can help them make more informed decisions about care and take advantage of clinical studies that are newly accessible to them. Genetics can not only help us uncover potential causes of Parkinson’s, but results from this study can lead to improved treatments and care for everyone with Parkinson’s.
After I was officially inducted into the Parkinson’s disease (PD) community through my diagnosis in 2017, I learned to be an optimist. At first it didn’t come easy to me, but the more I recognized how important it is to keep a positive mindset about your ability to ride the rollercoaster of PD, the more I applied myself to working out my “optimism muscles.”
Lately, I’ve been exercising optimism to dispel nagging doubts about taking on my biggest post-diagnosis challenge yet: climbing Mount Kilimanjaro and making a documentary about the adventure, while raising funds as a Parkinson's Champion. Every day I visualize myself on the peak of Kilimanjaro — tired, but with a blissful grin on my face, ready to descend and celebrate by sipping a Dee’s Pilsner beer at the bottom.
I am also optimistic about what AI (artificial intelligence) can do for diseases like Parkinson’s. I decided to ask the popular AI chat tool ChatGPT to interview me by providing it with the following prompt: “I was diagnosed with Parkinson's at age 49 in 2017 and I'm going to make a documentary about my preparation and attempt to climb Mount Kilimanjaro this summer. Ask me some interview questions.”
What follows is a condensed version of this interview. Each question was generated by the AI wizardry of ChatGPT, but the answers are 100% human, produced by me.
What kind of mental preparation have you undergone to attempt this climb?
I try to redirect any negative thoughts about failure into positive affirmations that I can do this and I will do this.
How do you plan on managing your Parkinson's symptoms during the climb?
As anyone living with Parkinson’s or who cares for someone with Parkinson’s knows, symptom management is the name of the game. One of the things I need to be ready for on the climb is the cold — my body doesn’t handle it well anymore. Once I start shivering it can become uncontrollable, so I will bring a battery-operated heated vest to keep my core warm.
What message do you hope to send to others who may be living with Parkinson's or other chronic illnesses?
Keep challenging yourself to do something that pushes you outside of your comfort zone, even if just a little bit. It doesn’t need to be climbing Mount Kilimanjaro. It could be something like walking up and down your driveway, joining a boxing class or reaching out to a friend you haven’t talked to in a long time.
What impact do you hope this documentary will have on the Parkinson's community?
I hope this documentary will help people with Parkinson’s challenge themselves to keep moving and enjoying life as much as they can. I also hope that people will see how much more they can accomplish by surrounding themselves with a supportive community. This is not always easy to do, but there are resources out there that can help you!
Learn more about Marco’s climb at his website: Parkimanjaro.
