About Parkinson's Families
of Northwest Kansas
Founder Elaine Ptacek began giving local presentations on Parkinson's Disease in 2017 by offering information and advocacy at civic group meetings and Booked for Lunch events at Pioneer Memorial Library in Colby. Momentum and interest grew and by July 2020, a small group of people with PD and their caregivers began meeting regularly with plans to educate, provide resources, and assist people who need help with travel expenses to and from doctor appointments.
Living with Parkinson's Disease in a medical desert
Having officially received non-profit status in November 2020, today, Parkinson's Families is the only organization working to improve the lives of people affected by PD throughout the entire Northwest Kansas region – 9 counties with about 31,000 people. Even for the most basic of care, Northwest Kansas is known as a medical desert – a region with inadequate access to medial services. With no specialized experts or outreach services available. The closest support group recognized by the University of Kansas Medical Center is in Salina, about 200 miles away. Furthermore, the closest expert PD center is over 230 miles away from organization headquarters in Colby.
In rural Northwest Kansas, the newly diagnosed instantly feel alone and isolated, and the increased prevalence of mental health issues due to the Covid-19 pandemic only exacerbate the issue. The lack of specialties within close proximity is a problem for which each of the five founding members of Parkinson's Families has experienced firsthand. This barrier has even been discussed as a barrier for receiving a timely and accurate diagnosis.
The Moving to Live program is born
Now, thanks to a generous grant award received from Parkinson's Foundation, Parkinson's Families now has the capacity to provide free evidence-based opportunities in art, music, fitness and physical therapies. Additionally, weekly support group meetings are held for both patients of PD and their caregivers. And, curated information packets are available for both patients of PD, and medical professionals throughout the nine-county service area who have the ability to refer people to our program.
Meet Our Volunteer
Board of Directors
Executive Director & Support Group Leader
After experiencing mild tremors on the right side of her body for over two years, Elaine sought advice from a neurologist over 100 miles away. She was told she had anxiety and lacked sleep. For nine years, Elaine continued to meet with her neurologist regularly but as her tremors worsened and the diagnosis remained the same, Elaine finally began seeking information elsewhere. Thankfully, in August 2015, she had the opportunity to speak personally with a neurosurgeon in her hometown of Colby after he gave a presentation on Deep Brain Stimulation for Parkinson's Disease and Essential Tremors. Immediately upon hearing her story, he suggested she be evaluated for the disease.
Elaine finally received respite from living with "anxiety and lack of sleep" for nine years, and only two short months after meeting the neurosurgeon, she finally received a confirmed diagnosis of Parkinson's Disease in October 2015. So, for the next four years, she doctored in Denver and made the round trip of about 500 miles per appointment to seek care.
Like many patients of PD, the severity of Elaine's symptoms increased and new symptoms were birthed. To combat the disease, she was prescribed more and more medications; and began seeing a physical therapist for movement, balance issues and falling. She saw a speech therapist for speech, and to help her with problems like swallowing and choking on food.
In 2018, her life took an unexpected turn – but, this time, it was a blessing. After having Deep Brain Stimulation done, her quality of life began improving dramatically and she's since been able to take control of her PD diagnosis. Living with the embarrassment and isolation that comes with Parkinson's Disease is something Elaine has experienced firsthand. She is looking forward to the opportunity to share her knowledge and experience with others through Parkinson's Families "Moving to Live" program. Her primary role in the program is to make a connection with as many medical professionals throughout Northwest Kansas as possible, and to promote free therapy classes available in Colby.
If you are a medical professional or a person in a position to make patient referrals in the nine northwestern-most counties of Kansas, please contact Executive Director Elaine Ptacek if you'd like to receive patient referral packets.
Vice President & Caregiver Specialist
Linda Sowers's husband, Byron, was a father of seven, farmer, rancher, man of God and a beloved member of Colby and Thomas County. In addition to serving as Thomas County Farm Bureau President, he served three terms as one of three Thomas County Commissioners. In the public eye, his two-decade battle with Parkinson's Disease was a test of faith. Like many other victims of the disease, he battled anxiety, difficulty articulating words, and other symptoms that made it difficult to carry on his responsibilities in such a public light.
However, Byron's unwavering ability to overcome obstacles was second only to Linda's loving, compassionate and loyal nature. For 20 years, Linda served every day as Bryon's caretaker. She took on every new unexpected symptom simultaneously juggling his daily needs, her new responsibilities as his assistant during commissioner meetings, acting as travel coordinator and chauffeur to endless neurology appointments from Wichita to Phoenix, managing medications, and doing her best to take care of herself.
After a steady decline in mobility and communication, Byron suffered a subarachnoid hemorrhage and cerebral aneurysm in 2012, which caused a metaphorical bomb to go off. It took 5 months in the hospital before he was able to walk again and although his eventual recovery was a miracle, he never fully regained his short-term memory. While he recovered at a Denver hospital, Linda received real-time caregiver and physical therapy training which provided her with important skills needed to tend to his well-being once they were allowed to go home.
About a week after celebrating their 48th wedding anniversary, Byron succumbed to his two-decade battle with Parkinson's Disease. Looking back, it is easier to see that her hyper-focus on Byron, although lovingly well-placed, overshadowed her increasing need to take care of herself.
A large part of the "Moving to Live" program is focused on providing free therapies to Northwest Kansas patients of Parkinson's Disease. However, the Board of Directors of Parkinson's Families knows that taking time away from caregiver duties to maintain social connections, to provide an outlet for caregivers to ask questions and seek help are important steps to help the caregiver cope with their additional responsibilities and stress.
The first step is reminding caregivers that self-care is not only okay, but a basic life-need. When caregivers prioritize self-care, personal health, and personal happiness, they are better able to take care of loved ones.
Secretary & Peer Mentor
Many people think Parkinson's Disease is reserved only for the elderly. So, when Crystal's twitching thumb progressed to a full-on shaking hand in just a few short months during the fall of 2013, Parkinson's Disease didn't even make it onto her short list of possible culprits.
Crystal's family doctor prescribed an MRI, which ruled out many possibilities including a brain tumor. And without a definitive diagnosis, he referred her to a neurologist who confirmed Young Onset Parkinson's disease (YOPD). Like many others before her, Crystal left the clinic feeling overwhelmed, confused, lost and alone. Although her uncle also suffered from the disease, she had no real idea what PD entailed and thought involuntary shaking was about all it was.
Needless to say, Crystal quickly learned how small a part involuntary shaking is, in the grand scheme of PD.
Crystal was diagnosed with YOPD at the age of 45. Incredibly independent and outgoing with a love of piano, gardening and enjoying grandkids, Crystal quickly became frustrated and overwhelmed with the disease. It not only took a toll on her body, but on her family as well. Her happy outlook on life became tainted with isolation and depression.
However, over the past seven years of battling PD, she has discovered her love of music and piano to be an essential part of recovery. Although every day is different, and her mobility is heavily dependent on medication, she has learned she can walk and ride her bicycle better with a beat. And, every day she has to discover if she'll have a "good day" or a "bad day."
In addition to the typical obstacles that are hurled at people living with PD, Crystal says one of the biggest problems is simply living with the disease in Northwest Kansas. PD is tough, she says, but having to travel incredibly long distances to see a good neurologist is oftentimes not possible. So, she settles for one that is not necessarily a good fit for her. She has learned that any specialized services are almost non-existent and if they're available, she (like many others) doesn't know where to find them or how to learn about them. A lack of community support and communication regarding local services and resources is virtually nonexistent. And, Parkinson's Families has already proved to be a blessing on Crystal and her family. Through her role in the organization and the Moving to Live program, Crystal plans to promote the impressive benefits of art and music therapy to others and build a bridge of communication between other patients of PD and local care and resources.