WOW! We are blown away by the support during scheduled giving. We have already reached our $2,000 goal ($2,650 to be exact!) and that is before any matching funds!
But it’s not too late for you to participate in this year’s event! Can you help us reach our new goal of $3,500 by donating right now?
We are so excited to take our new Rural Community Outreach program to communities across the state. We know how important services like exercise classes, support groups, and education are for people with Parkinson’s and their families – and we are committed to increasing access to these services across Nebraska!
Thank you for supporting our organization and the Parkinson’s community we serve. Without your generosity, we wouldn’t be able to provide the services and programs that are making a difference in the lives of people with Parkinson’s and their families.
Double your impact!
July 14, 2020
The Home Instead Senior Care Foundation is giving away $250,000 is matching funds, and we are eligible for up to $5,000!
The match is given on a first donated – first matched basis, and they run out fast. Scheduled gifts are the first to be processed and the first to match.
Schedule your gift today to increase your chance of a match and double your impact!
Thank you so much for supporting the statewide Nebraska Parkinson’s community! We would be able to change lives without you.
Scheduled giving for GIVE65 has started!
July 13, 2020
Scheduled giving for the GIVE65 Event has begun! Scheduled gifts are the first to be matched which empowers your gift to go even further in helping the Parkinson’s communities in the rural areas we serve. You can schedule your GIVE65 gift July 13th- July 14th.
Our goal is to raise $2,000 to support our new Rural Community Outreach (RCO) program.
The RCO program was created in response to the specific needs of rural communities. The purpose of the program is to actively engage with rural communities in a way that promotes community-building, expands programming based on local needs, and creates lasting change. Centered around creating meaningful relationships, the RCO program focuses on strengthening each community by connecting people with Parkinson’s to each other, to local resources and leaders, and to the statewide Parkinson’s network.
Thank you! Thank you for your support and belief in our mission to bring hope to people with Parkinson’s and their families right here in Nebraska. If you have any questions or need help scheduling your gift, please reach out to us. We’d love to help!
A Journey Shared by All
June 26, 2020
Over the past few weeks we have taken an inventory of ourselves, the organization, and our role in fighting racial injustice in our community. We want to share some information about institutionalized racism in the healthcare system, racial disparities within the national and statewide Parkinson’s community, and steps we plan to take as an organization to be more inclusive and representative of our whole community.
In early June, the Nebraska Douglas County Board of Health declared racism a public health crisis. Dr. Adi Pour, the Douglas County Health Director, said that “white people have a life expectancy of more than 10 years than African Americans” and that “7% of white people don’t have health insurance, while in African Americans it is 30%”. Even after accounting for health insurance and access to the healthcare system, disparities in care based on race still persist (Dahowala, N. & Parkinson’s Disease & Movement Disorders Center, 2013).
Institutionalized racism presents a public health crisis not only nationally, but here in Nebraska as well. But what is systemic racism? The American Academy of Family Physicians explains,
“As a system, racism has been institutionalized in a way that permits the establishment of patterns, procedures, practices and policies within organizations that consistently penalizes and exploits people because of their race, color, culture or ethnic origin. The system of racism affects the attitudes, beliefs and behaviors of one individual towards another (personally-mediated) as well as how individuals perceive themselves (internalized).”
Stated plainly in the article Uprooting Institutionalized Racism as Public Health Practice in the American Journal of Public Health, “the past and present racial patterning of disease reflects institutionalized racism” (Bassett & Gravis, 2018). Parkinson’s disease does not escape the grasp of systemic racism. The National Institute of Health states that, “African Americans are half as likely to be diagnosed with Parkinson’s disease than white people” (Dahodwala et al, 2009). But does that mean they are half as likely to actually have the disease?
Or is it that black, indigenous people of color (BIPOC) are less likely to receive a diagnosis because of barriers put in place by institutionalized racism? In the article What is known about racial disparities in Parkinson’s disease diagnosis and treatment, Nabila Dahodwala explains how a lack of diagnosis, later diagnosis, and the under-treatment of BIPOC Parkinson’s patients “translates to worse outcomes, including higher mortality” (Dahodwala, 2013).
Many of us in the Parkinson’s world know the importance of seeing a specialist, such as neurologist or movement disorder specialist. Not being cared for by a specialist can lead to differences in referrals to specialized therapy, deep brain stimulation, lower enrollment in clinical trials, lack of physician knowledge, and limited access to services (Dahodwala, 2013). The American Academy of Neurology found that BIPOC are significantly less likely to be cared for by a specialist, leading to racial disparities (Willis et al, 2011).
Beyond the barrier of access, factors such as patient preference and attitudes, trust in the healthcare system, cultural beliefs about aging and health, and low health literacy all contribute to differences in race and Parkinson’s disease. Dahodwala provides an outline for how to combat these racial disparities. The first step is to recognize that they exist. Then, identify the factors causing the disparities and develop policies to reduce them (Dahodwala, 2013).
We know we are not experts on racism – and we plan to follow the lead of black leaders and healthcare professionals in how to dismantle systemic racism within ourselves, the Parkinson’s community, and the healthcare system. We want to follow up our words with actions and are working with a local organization that is a leader in anti-racism work to develop inclusive policies. We recognize there is a lot work to be done and we are committed to advocating for and celebrating the diversity within the Nebraska Parkinson’s community.
Just like we believe the journey of Parkinson’s is A Journey Shared, we also believe the journey to fight racism is a journey we all share. We have compiled a list of resources for you to learn more about systemic racism in the healthcare system and racial disparities within the Parkinson’s community:
Dahodwala, N., Siderowf, A., Xie, M., Noll, E., Stern, M., & Mandell, D. (2009, June 15). Racial differences in the diagnosis of Parkinson’s disease. Retrieved June 26, 2020, from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2858583/v
Dahodwala, N., & Parkinson’s Disease & Movement Disorders Center. (2013, November 20). What is known about racial disparities in Parkinson’s disease diagnosis and treatment? Retrieved June 26, 2020, from https://www.futuremedicine.com/doi/full/10.2217/nmt.13.62
Willis, A., Schootman, M., Evanoff, B., Perlmutter, J., & Racette, B. (2011, August 30). Neurologist care in Parkinson disease. Retrieved June 26, 2020, from https://n.neurology.org/content/77/9/851
Health Disparities and Parkinson’s: Understanding the Issue | Davis Phinney Foundation | Thursday, August 6th | 1:00 pm | Register here
Speech Therapy and Maintanence
June 22, 2020
People with Parkinson’s can experience difficulties with speech or swallowing as the disease progresses. Just as PD affects movement, it affects the muscles in the face, mouth and throat used in speaking and swallowing (Parkinson’s Foundation).
Specialized therapy programs, such as LSVT LOUD® and SPEAK OUT®, target Parkinson’s speech and swallowing symptoms. Speech therapy can also help improve cognition and clarity in people with PD. While exercise classes are not yet meeting in person, therapy services are still being provided.
Congratulations to the Box Butte General Hospital who won a grant from the Parkinson’s Voice Project to provide the SPEAK OUT® and The Loud Crowd® programs to the Alliance, NE area.
The Rehab & Wellness Center Box Butte General Hospital 2101 Box Butte Ave Alliance, NE 69301 308-761-3372 Francis Patrick Duldulao, MS, CCC-SLP fduldulao@bbgh.org Physical, Occupational, and Speech Offers LSVT BIG®, SPEAK OUT®, and The LOUD Crowd®
Learn more about this resource and access a list of Parkinson’s therapy providers across Nebraska on the Resource Directory on our website.
We often hear about the importance of exercise for people with Parkinson’s disease. I am sure you know about the benefits of staying active in managing the disease and delaying symptoms. After physical and occupational therapy, it is important to regularly exercise to keep your muscles strong and not lose the progress made during therapy.
The same goes for speech therapy! The muscles that control your voice are affected by Parkinson’s just like all of you other muscles so we have to exercise them. Ongoing speech maintenance is a crucial – often underutilized – component to managing Parkinson’s disease. After graduating from speech therapy, it is importance to continue exercising the muscles to maintain speech volume, swallowing function, drooling and more.
Programs like the LSVT LOUD for LIFE® and The LOUD Crowd® provide ongoing speech maintenance exercise classes for LSVT LOUD® and Speak Out® graduates. Many speech maintenance groups have not resumed, but luckily there are some really great online voice resources!
All the classes below are provided online and can be found on our Online Therapy web page:
Online Voice Exercise Resources
Live IT Up! Live IT Up! is a unique Parkinson’s class designed to combine exercise and speech exercises. Tuesday and Friday | 12:00 pm Classes available with a PDWELL Plus membership ($35/month) Register here for a PDWELL Plus membership.
Parkinson’s Voice Project Daily Voice Exercises The Parkinson Voice Project is offering free speech exercise on Facebook Live to help keep your voice strong! Monday- Friday | 10:00 am Tuesday | 6:00 pm No cost for classes Tune in live on the Parkinson’s Voice Project Facebook page
The Loud Crowd LOUD Crowd is a weekly community voicing and cognition class open to anyone who has completed LSVT LOUD or Speak Out! Thursday | 3:00 pm This group is available with a free PDWELL membership. Register here for a free PDWELL membership.
PDWELL Voicing Class This class is designed to work on the muscles that control speech and swallowing. Wednesday | 10:45 am Classes available with a PDWELL Plus membership ($35/month) Register here for a PDWELL Plus membership.
Talk to your speech therapy provider today about joining a speech maintenance group!
The Resource Directory and Online Resources are continuously growing. If you are a provider of PD-specific resources are would like to be added to the Resource Directory, please contact Amber at amber@parkinsonsnebraska.org to be added.
PDWELL Awarded Teleconferencing Equipment Grant
March 31, 2020
In early March, Parkinson’s Nebraska awarded PDWELL with a grant for teleconferencing equipment to support an online pilot program. We could have never imagined how important the equipment would become just one short month later.
Talk about kismet timing!
We are grateful that PDWELL is able to use the equipment to make online support group, caregiver, speech therapy, and exercise programs available during this time.
To support the Parkinson’s community, PDWELL is offering the following online classes to the community at no cost throughout the month of April!
Support Resources
Support Group/ Daily Check-ins Daily 10:00- 10:30 am
PD Connections for Young Onset Thursday, April 16th 7:00 pm Email Cheri Prince for Zoom meeting link.
Caregiver Forum Wednesdays 2:00- 3:00 pm
Exercise Classes
Daily Online Exercise Classes 10:30- 11:30 am
Monday | Boxing Class Tuesday | Dance for PD Wednesday | Let’s Stretch Thursday | PWR! Moves Fridays | Voicing Class
Register for these free classes by visiting the PDWELL calendar and clicking on the program you would like to attend. Once you register, you will receive a link that can be used to access all of the online support groups and classes.
Thank you to Cheri and the rest of the PDWELL team for going above and beyond to take care of the Parkinson’s community during this unprecedented time. We are proud to call you a partner!
April is Parkinson’s Disease Awareness month! Test your PD knowledge with these Parkinson’s facts.
Did you know…
… the tulip is the worldwide symbol for symbol for Parkinson’s disease?
The Dutch horticulturalist, J.W.S. Van der Wereld, who had PD, developed a new species of tulip and named it the “Dr. James Parkinson” tulip in honor of the physician.
… why April is Parkinson’s Awareness Month?
April is Parkinson’s Disease Awareness Month because it is the birth month of James Parkinson, the London physician for whom the disease is named.
Dr. Parkinson published “An Essay on the Shaking Palsy” in 1817 and was the first physician to provide a medical description of Parkinson’s Disease.
… there are approximately 10 million people worldwide living with Parkinson’s disease?
Over 60,000 Americans are diagnosed with PD each year and nearly one million Americans currently living with the neurodegenerative disease.
It is the second most common neurodegenerative disease in the United States. There is currently no test or biomarker for Parkinson’s disease or drug to cure or slow the disease.
… Nebraska was the first state to implement a Parkinson’s Disease registry in the United States?
Since 1997, over 16,464 people have been diagnosed with PD across Nebraska. Nebraska was one of the first states to implement a Parkinson’s Disease Registry, which is being used in research. This is also what drives our mission to keep all donations right here to serve the people of Nebraska.
… the economic burden of Parkinson’s disease is at least $25 billion annually?
This includes direct and indirect costs including treatment, social security payments, and lost income.
This is one reason Parkinson’s Nebraska works so hard to provide funding for professionals and service providers, to help lower the cost of services and make them more accessible.
… exercise can greatly help manage the symptoms of Parkinson’s disease and can even slow the progression of the disease?
Exercise is a crucial component of living well with Parkinson’s. Parkinson’s disease causes damage to the pathways in the brain that lead to impaired movement.
Through aerobic and targeted exercises, the brain can build new pathways to replace the damaged ones, leading to improvement in motor symptoms.
… it is possible to live a quality life with Parkinson’s disease?
With access to specialized services, such as a movement disorder specialist, Parkinson’s therapy and exercise classes, support groups, and educational opportunities, people with Parkinson’s can manage their symptoms and gain the knowledge to be their own advocates.
Parkinson’s Nebraska is proud to work with local and national partners to help make these services more accessible to people with Parkinson’s throughout the state.
In 1996, the Parkinson’s Disease Registry Act was enacted by the Nebraska legislature, becoming the first state to create a Parkinson’s disease registry. Under the legislation, physicians and pharmacists are required to report any individual diagnosed with Parkinson’s or taking medications associated with the treatment of Parkinson’s disease.
In 2001, the law that created the Parkinson’s Disease Registry was briefly repealed. However, it was quickly revived and DHHS was given the responsibility to continue the program. Due to a lack of funding, the registry was terminated in October 2004. The registry was reinstated February 1, 2006 with co-funding from the Michael J Fox Foundation and American Parkinson’s Disease Association.
The Nebraska Registry created a database of information on the rate of Parkinson’s in each county in Nebraska. It has been utilized as a tool for planning health care requirements, educating healthcare providers, and Parkinson’s disease research. It provides a valuable tool for collecting epidemiological data, or data related to the branch of medicine that deals with the incidence, distribution, and control of disease.
Researchers have already been able to use this data to measure the prevalence in urban versus rural regions. They are able to then recruit samples from these areas to assess exposure to a wide range of risk factors. This 2015 study in the Journal of Rural Health used the registry data to investigate at the link between exposure to pesticides and Parkinson’s disease.
Tai Chi is a Chinese martial art that combines deep breathing and relaxation with slow and gentle movement. Numerous studies have shown Tai Chi can provide significant improvement in motor and nonmotor symptoms for people with Parkinson’s disease.
In a recent study titled The Impact of Mind-Body Exercises on Patients with Parkinson’s Disease, published on December 27, 2019 in the International Journal of Environmental Research and Public Health, Tai Chi helped improve balance function, depressive symptoms, and overall quality of life.
Motor Benefits
Improved posture
Improved balance (up 2x more according to this article from Harvard Medical School)
Reduced falls
Improved mobility
Improved flexibility
Nonmotor Benefits
Improved depressive symptoms
Improved anxiety symptoms
Improved quality of life
Improved cognitive function
Self-esteem
Perhaps even more beneficial than the motor benefits are the nonmotor benefits provided by Tai Chi. A study in the Journal of Yoga and Physical Therapy, states that nonmotor symptoms are highly impactful on quality of life. By managing nonmotor symptoms of PD through Tai Chi, quality of life can be greatly improved!
Tai Chi Classes
Tai Chi for Better Balance Hastings Family YMCA 1430 W 16th St Hastings, NE 68901 Advanced 10:30-11:15am Beginner 11:30-12:15pm 402-463-3139 Erika Knott erikak@hastingsymca.net
Virtual Tai Chi
Dee Brauninger in Alliance, NE is offering virtual Tai Chi classes.
Mondays 9:30- 10:15 am MT/ 10:30- 11:15 am CT
There is no cost to participate in classes. Contact Dee Brauninger at brauninger@bbc.net or call 308-763-1254 for the class Zoom link.
2020 UNMC Skate-a-thon for Parkinson’s
January 29, 2020
Thank you, thank you, thank you for the most successful Skate-a-thon to date! This year we raised over $34,000 to provide Parkinson’s education, support, and services throughout Nebraska.
Not only did we do a lot of good, we also had a lot of fun! Here are some highlights from 24 of our favorite hours of the year!
2:00 pm Skate-a-thon kick off. 24 hours to go!
Over 525 skaters showed up to skate, dance, drink hot chocolate, and support the Parkinson’s community!
Parkinson’s disease does not stop. Not in the middle of the night and not when it is cold outside. That’s why we have skaters and teams skate for the full 24 hours, to represent how Parkinson’s symptoms don’t stop.
The cold didn’t stop these skaters who participated in the Shiver Skate at 1:00 am.
Talk about dedication!
2:00 am- Half way there! 12 hours down, 12 to go.
Starting the day off right with a F3 pop up workout at 5:30 am. In this picture they are doing a ‘cool down’ on the ice to end their workout ….and it just happened to overlap sunrise yoga on ice. (Which is the 6 horizontal bodies in the back row stretching!)
8:00 am and still 6 hours to go!
And finally, after 24 hours of skating, fun, and raising awareness we made it to the end of the 10th annual UNMC Skate-a-thon for Parkinson’s!
Thank you to our sponsors who made this event possible!
