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 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
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.
Improved balance (up 2x more according to this article from Harvard Medical School)
Improved depressive symptoms
Improved anxiety symptoms
Improved quality of life
Improved cognitive function
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 Tuesdays & Thursdays March 3rd – May 21st Advanced 10:30-11:15am Beginner 11:30-12:15pm Cost: Free for YMCA members; $5 for non-members 402-463-3139 Erika Knott firstname.lastname@example.org
Tai Chi for Balance Visiting Nurse Association 12565 West Center Road Omaha, NE 68144 Tuesdays 5:15 PM Cost: Free 402-346-7772 Kris Lausterer email@example.com
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!
Lewy Body Dementia and Parkinson’s disease
January 3, 2020
Lewy Body Dementia (LBD) is a spectrum of closely related, progressive brain disorders characterized by a build up of Lewy bodies (abnormal protein deposits) on the brain.
When these deposits build up on the brain stem they can disrupt dopamine production and cause parkinsonism, a clinical syndrome characterized by tremor, bradykinesia, rigidity, and postural instability.
Parkinson’s disease also causes parkinsonism, but it is caused by a loss of dopamine-producing nerve cells, not a build up of Lewy bodies in the brain stem.
Dementia with Lewy body vs. Parkinson’s disease dementia
While both LBD and PD are caused by a disruption in dopamine production and have similar symptoms, the difference is the order in which the symptoms appear.
Dementia with Lewy Body: A type of dementia that presents the motor symptoms of PD as the disease progresses. The dementia always appears first, with parkinsonism appearing as the disease progresses.
Parkinson’s disease dementia : A term used for dementia that develops after several years of living with Parkinson’s disease. Nearly all people with PD will experience parkinsonism, but not all people with Parkinson’s disease will develop dementia.
For more information about Lewy Body Dementia visit www.lbda.org or click here to view the early differentiating symptoms between PD and LBD.
New Lewy Body Dementia Support Group!
If you or a loved one has Lewy body dementia and is need of support and guidance, please join Charity Brumbaugh at the new Lewy body dementia support group.
Lewy Body Dementia Support Group Milton R. Abrahams Library 9111 N 90th St. Omaha, NE 68134 2nd Monday of every month 10:00 am-11:30 am Charity Brumbaugh 402-206-3963 firstname.lastname@example.org
January 2020 Grant Recipients
January 2, 2020
Parkinson’s Nebraska is on a mission to
be the primary source of Parkinson’s disease education, support, and services
in Nebraska. One way we support the Parkinson’s community is by providing financial
support to programs that are making a difference in the lives of people with
Parkinson’s and their families. We are proud to announce our latest round of
Kris teaches the Functional Movement for Seniors class at Messiah Lutheran Church in Lincoln, NE. She attended the Delay the Disease training this past July because she wanted to provide more specialized services to the people with PD in her class. She was awarded a grant to provide medicine balls, which she can use to introduce new exercises and improve the quality of the class!
If you are in Lincoln, stop by Kris’ Functional Movement for Seniors class:
Functional Movement for Seniors Messiah Lutheran Church 1800 S 84th St. Lincoln, NE 68506 Fridays 11:00-11:45 am Cost: $30/ 6- week session or $10 drop- in Kris Costello 402-416-3600 email@example.com
Grand Island YMCA Rock Steady Boxing Class
The Grand Island YMCA, with the Grand Island Balance Mobility ands Aquatic Center, provides a Rock Steady Boxing class to the Grand Island community, and it keeps growing! We are thrilled to present the Grand Island YMCA with a training grant for another professional to become a certified Rock Steady Boxing coach!
Go and see Ashlyn and the other Rock Steady Boxing coaches at the Grand Island YMCA:
Rock Steady Boxing Grand Island YMCA 221 E. South Front St. Grand Island, NE 68801 Tuesday and Thursday 10:00 am – 11:00 am Monday and Friday 11:00 am- 12:00 pm $75 initial evaluation Contact Grand Island YMCA for membership options Ashlyn Cramer: 308-398-2170; firstname.lastname@example.org Grand Island YMCA: 308-398-9622
Craig Bontrager and Jefferson Community Health
Craig Bontrager, director of the Burkley Fitness Center at the Jefferson Community Health & Life, is passionate about increasing Parkinson’s services to Fairbury. Fairbury has a Parkinson’s support group and large number of people with Parkinson’s in the area. Parkinson’s Nebraska is proud to award Craig with a training grant to become a Rock Steady Boxing certified coach and Jefferson Community Health and Life with a grant to pay for the affiliate fee to get the class started! We are thrilled to work with Craig to meet a need and bring services to the Fairbury community.
Classes coming in Fall 2020!
Jody Augustyn at the Sherman County Senior Center
Jody teaches a Strength and Balance yoga class at the Sherman Senior Center in Loup City, NE. She attended the Delay the Disease training to be able to provide more specialized services to the large PD population in the area, and she is dedicated to improving lives. Parkinson’s Nebraska is proud to award Jody with an ongoing class sponsorship, making it our first sponsored class outside of the Omaha metro!
Join Jody at the first specialized exercise class for people with Parkinson’s in Loup City:
Strength and Balance Sherman County Senior Center 617 O St. Loup City, NE 68853 Mondays and Wednesdays 10:00- 10:30 am Cost: Contact Jody for cost information Jody Augustyn 402-525-5249 email@example.com
We are so grateful to have these professionals and organizations
on our journey to fight Parkinson’s!
January 2, 2020
Thank you for a great year!
Our biggest highlight of the year was the Delay the Disease training in July. Since July, the training has impacted:
55 professionals certified
23 specialized exercise classes
13 therapy providers
18 communities across Nebraska
a new support group in Beatrice
Other ways we have impacted the community:
We have sponsored over 450 Parkinson’s exercise class in the Omaha metro area
We gave 9 educational presentations in Omaha and rural communities across Nebraska, educating and spreading awareness to over 230 people with Parkinson’s and their caregivers.
We participated in 12 community events
We engaged with over 2,000 Nebraskans
We hosted 12 support groups, connecting the community and providing resources
Some other things we have been
working on to increase our ability to serve the community:
Regularly updated website
Online Resource Directory with the most current listing of Parkinson’s resources in Nebraska
Online Community Calendar where people can search for services by city
Growing monthly newsletter to engage with people across the state
Please join us as we build on our momentum and continuing to expand services, engage with the Parkinson’s community, and foster our new statewide relationships in the upcoming year.
Genesis Rehab Services: Vitality to You Program
July 31, 2019
definition, is “the state of being strong, active, and full of energy”. Genesis
Rehab Services (GRS) offers a unique program that embodies the essence of this definition.
Vitality to You is an outpatient therapy services that brings occupational,
physical, and speech therapy services directly to the client, in their home or
community. GRS offers this program in the Omaha Metro and in various cities
throughout the state.
Not only can they
provide therapy services in the home or their clinic, but they can also
complete therapy sessions in non-traditional environments, focusing on
community integration. Common locations include, but are not limited to,
grocery stores, the gym, church work areas, family member’s homes, camp sites,
restaurants, sporting events, accessing public transportation, and
indoor/outdoor leisure tasks. Their team of professional, knowledgeable, and compassionate
therapists assists clients in developing the skills needed to be safe and
successful at home and to confidently return the tasks they want and need to do
in the community.
Vitality to You
in Omaha is the only Vitality program based out of a skilled nursing facility.
If a skilled need is required, the Vitality therapists can develop a plan of
care at the facility, then transition to the Vitality program after discharge.
The team is able to follow clients through the entire continuum of care.
How to get
Obtain an order for occupational, physical, or
speech therapy services from your primary doctor or neurologist. The Vitality
team can assist wit retrieving orders and determining which services would be
the most beneficial.
Verify insurance coverage.
Get started with therapy services.
to You program information, referrals, skilled nursing care, or assistance
obtaining physician’s orders, please contact:
Molly Ganow Senior Director of Rehabilitation 2525 S. 135th Ave Omaha, NE Phone: 402-350-4232 Fax: 402-333-3356 firstname.lastname@example.org
information regarding the Parkinson’s specialty program in the Omaha area,
You can assist in returning to independence at home or in the community. Take
control over Parkinson’s disease, and live life to the fullest!
Delay the Disease training improves Parkinson’s services in Nebraska
July 19, 2019
Parkinson’s Nebraska welcomed 55 professionals from across Nebraska to the Midwest Delay the Disease training in Grand Island, Neb., on July 18-19. The training provided attendees with the knowledge and tools to design and implement a community-based, Parkinson’s- specific exercise class. Because of the Parkinson’s Nebraska commitment to making training accessible, all attendees were provided with the cost of registration, lodging, a mileage stipend, and meals throughout the training.
Russell, RN, BSN, CNOR and David Zid, BA, ACE, APG, the co-founders of the
Delay the Disease program and training instructors, led an informative and
interactive workshop. The training began with Jackie sharing the science and
evidence- based benefits of exercise. David led the rest of the training,
teaching exercises that target Parkinson’s symptoms and how to design a
Parkinson’s exercise class. Together, they brought a dynamic energy that made
the training fun and inspiring!
Parkinson’s Nebraska provided the attendees
with a dinner and presentation hosted at the Ramada by Wyndham Midtown Grand Island.
John Bertoni, M.D., Ph.D., professor in the University of Nebraska Medical
Center Department of Neurological Sciences, and director of the Parkinson’s
disease program at Nebraska Medicine, UNMC’s clinical partners, was
the guest speaker at the training. He presented on the role of Exercise in
Parkinson’s Disease Management and conducted a lively Question and Answer
session. The group appreciated Dr. Bertoni’s experience, and humor, in the
the second day of the training, there was a demo class for the attendees to practice
their new skills with real participants. More than 20 people with Parkinson’s
and their caregivers traveled from Omaha, Lincoln, and Grand Island to
participate in the training’s Demo Class. After the class, they enjoyed a lunch
provided by Parkinson’s Nebraska and get to meet the training attendees. It was
a great opportunity to celebrate and strengthen the Parkinson’s community and
network with others across the state.
The immense impact this training has
made on the Nebraska community is made possible through a partnership with the
Parkinson’s Foundation. The foundation awarded Parkinson’s Nebraska a community
grant to help training costs. Because of the grant, Parkinson’s Nebraska was
able to provide the training to more professionals and further increase the
number of exercise classes throughout Nebraska.
As a result of the Delay the Disease training there will be 21 new Parkinson’s exercise classes across Nebraska. Parkinson’s Nebraska has recognized a lack of services in rural communities and is proud that over 15 classes will serve under-served areas. This is just the beginning of Parkinson’s Nebraska’s commitment to the making services across the entire state.
To learn more about how Parkinson’s Nebraska is serving the Parkinson’s community, visit www.Parkinsonsnebraska.org.