For more than ten years Karen Tylka has been a part of On With Life’s Parkinson’s community. She started with the LSVT program shortly after being diagnosed with the disease in 2014, and continued to proceed with further therapy, support groups and PD programming that On With Life offers. On With Life has become a second family for Karen, and she is known amongst staff for her commitment to checking in with her fellow persons served. When Karen officially retired from her full-time job last year, On With Life Physical Therapist and Team Lead Gail McGaughy had an idea for her.
“Karen has always supported other people with Parkinson's,” said Gail. “She has a huge heart and wanted a way to give back to her community so when we saw a need at On With Life for peer mentoring, we knew just who to reach out to.”
Karen embraced Gail’s idea of peer mentoring and connected with three individuals in 2024. Her sessions were simply conversations about the struggles that come with a Parkinson’s diagnosis and tips to help combat the progression of the disease.
“People with Parkinson’s disease are always eager to hear what is working for others,” said Karen. “I have been exposed to what does and doesn’t work for me after 11 years and if I can share that knowledge with others, hopefully it can help them.”
Incorporating exercise and movement into her daily routine has consistently been a focus for Karen and sharing which exercises have worked for her are typically a part of her peer mentoring sessions. And while this information has been greatly beneficial for those she is talking to, Karen has found that just being a peer and listening ear has been significantly impactful as well.
“These individuals are so happy to know that who they are talking to gets it,” said Karen. “You can try to explain your experience to someone who doesn’t have Parkinson’s but to talk to someone who truly understands what you are going through helps you feel better. It makes you feel not so alone.”
Karen knows how a Parkinson’s diagnosis can feel isolating and hopes to evolve her peer mentoring to provide easier access for those looking for that connection.
If you or your loved one has been diagnosed and are interested in peer mentoring, call the On With Life outpatient clinic at 515-298-9696.