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

Speech Therapy

LOUD Crowd
Thursdays | 3:30- 4:30 pm
*Must complete LSVT LOUD or Speak Out!

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!

For more information about PDWELL, contact Cheri Prince at 531-444-8945 or ChePrince@EnsignServices.net, or visit www.pdwell.com.

Parkinson’s Awareness Month

March 30, 2020

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.  

Nebraska Parkinson’s Disease Registry

February 20, 2020

Did you know that Nebraska has one of the highest rates of PD per capita in the country? 

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.

According to the latest report released in January 2019, there has been 16,464 people diagnosed in Nebraska since 1997. The Nebraska Parkinson’s Disease Registry Statistics Report (Pre- 1997- 2019) provides year-by-year diagnosis rates and a summary of Parkinson’s patients.

For more information about the Parkinson’s Disease Registry and previous reports, visit http://dhhs.ne.gov/Pages/Parkinsons-Disease-Registry.asp or contact Jill Krause at 402-471-8582 or jill.krause@nebraska.gov.

Tai Chi and Parkinson’s disease

January 31, 2020

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
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
Erika Knott

Tai Chi for Balance
Visiting Nurse Association
12565 West Center Road
Omaha, NE 68144
5:15 PM
Cost: Free
Kris Lausterer

You can find more Tai Chi for Balance classes across the state at http://taichibalance.org/

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!

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

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 grant recipients!

Kris Costello

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

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; acramer@grandislandpt.com
Grand Island YMCA: 308-398-9622

Craig Bontrager and Jefferson Community Health & Life

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

We are so grateful to have these professionals and organizations on our journey to fight Parkinson’s!  

2019 Impact

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
  • Statewide connections

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

Vitality, by 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.

The GSB team has extensive training in complex diseases, pain, dementia management, seating and positions, falls and balance, and specialized equipment evaluations. In the Omaha Metro area, Vitality to You also provides specialty programs for Parkinson’s disease. The program targets the Parkinson’s symptoms using the LSVT BIG ©️ and SPEAK OUT! ©️ Programs.

LSVT BIG ©️ is a four times per week, one month long program designed to combat the common motor symptoms of Parkinson’s such as shuffling gait, rigidity, small movements, poor posture, and loss of balance. The SPEAK OUT! ©️ program focuses on speech production, vocal quality, volume an control, along with a home exercise program to help maintain function once therapy is complete. Based on individual needs and personal goals, the team develops an individualized plan of care to increase safety and independence.

Listed below are common reasons for therapy services:

Physical Therapy

  • Unsteady gait
  • Frequent falls
  • Loss of range of motion
  • Pain
  • Decreased activity tolerance
  • Difficulty with transfers
  • Difficulty with mobility

Occupational Therapy

  • Decreased success to complete Activities of Daily Living (dressing, bathing, toileting, grooming, and hygiene, self-feeding)
  • Decreased independence with home management or community tasks
  • Adaptive equipment recommendation and evaluations
  • Decreased safety at home
  • LSVT BIG ©️ (Omaha Metro area)

Speech Therapy

  • Changes with speech, resulting in others having difficulty understanding you
  • Trouble expressing wants, needs and/or socializing less
  • Problems with understanding or following directions
  • Changes in vocal quality
  • Difficulty with cognition (i.e. focusing, problem solving, memory, organizing thoughts, etc.)
  • Difficulty swallowing
  • SPEAK OUT! ©️ (Omaha Metro area)

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 started:

  1. 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.
  2. Verify insurance coverage.
  3. Get started with therapy services.

For Vitality 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 molly.ganow@genesishcc.com

For information regarding the Parkinson’s specialty program in the Omaha area, please contact:

Amber Rieken OTR/L, MOT, Certified Dementia Practitioner, LSVT BIG©️ Phone: 402-350-4232 amber.rieken@genesishcc.com

For information on the Vitality to You program offered throughout the state, please contact RehabReferrals@vitalitytoyou.com.

Vitality to 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.  

The attendees learning about the scientific and evidence- based benefits of exercise in the management of Parkinson’s disease.

Jackie 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!

Getting ready to learn about exercises that target Parkinson’s symptoms.
Learning about taking BIG steps and counting LOUD
Improving arm swing with David’s Ziddy Sticks.

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 presentation.

Parkinson’s Nebraska provided dinner for the attendees.
Dr. Bertoni on the big screen, talking about the role of exercise in Parkinson’s disease.

On 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 Demo Class participants mingling and waiting for class to start.
Demo Class balloon fun!

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.