Shown above, from left: Sarah King (PCLA’s Information & Referral Specialist) and Lora Kurtenbach (Member, PCLA’s Board of Directors)
This month we get to know PCLA’s Lora Kurtenbach and Sarah King, both adult children of parents with Parkinson’s who got involved in PD advocacy and support after diagnosis.
Lora and Sarah, thanks for talking with us. Would you share your family’s PD story?
Lora: My dad was diagnosed with Parkinson’s in 2004. My mom broke the news on a Sunday afternoon and since I lived in Los Angeles, and they lived in Ohio, I had no idea that he had been suffering from many of the symptoms of Parkinson’s disease.
Sarah: My mom was diagnosed in 2006. There was an initial motor symptom – micrographia [cramped handwriting]. A physician friend recommended she see a neurologist, and that started the long process of working towards a diagnosis. Now we can look back ten or fifteen years prior to her diagnosis to identify the early non-motor symptoms.
What was your initial reaction to the diagnosis?
Lora: Shock and sadness. I had no idea what Parkinson’s was and how it would affect my father. Was it an aggressive disease like ALS or did it have varying “stages” like cancer? I couldn’t imagine my strong and super athletic 6’2” dad succumbing to a disease that caused mobility issues.
Sarah: I can relate to the sadness and fear Lora describes. I still remember where I was when I received the call. I was scared. I dove into research and the more I learned the more I understood that Parkinson’s is so different for everyone. It was frustrating to feel like we couldn’t know what to expect.
Every family faces unique challenges with Parkinson’s. What do you think was the most difficult part of being an adult child of a parent with PD?
Lora: The distance. I lived in Los Angeles and my family was in Columbus, Ohio and often felt guilty that I wasn’t there to help. I made sure to visit as much as possible and when my dad’s health declined, my sister and I would stay with him so our mom could take a much-needed break. I even contemplated moving closer – either back to Columbus or Chicago – so it would be easier to pop over if my family needed help.
Sarah: Absolutely the distance for me, too. When Mom was diagnosed I was living in New York and establishing my career, and she lived in Florida. It was hard to be so far away and to feel I could put things on hold to go home to help out. Her speech made communication hard and I often felt like I didn’t really know how she was doing. I traveled home as much as I could, but I felt guilty for not being there every day.
I also had trouble finding support for me. I tried some PD support groups but they weren’t a good fit. Eventually I started attending Parkinson’s events and connected with other adult children of PD. That really helped.
You have both been working with the Parkinson’s community for several years. How did you first get involved?
Sarah: After Mom died in 2010, I became an advocate with Parkinson’s Action Network (PAN), and attended their annual Forum in DC. It was inspiring to feel like I could help make change happen! In 2012 I took on a volunteer role as PAN’s Assistant State Director for California. Through that work I met a lot of members of the Los Angeles Parkinson’s community, including many of the founding members of PCLA.
Lora: When I first learned about my dad’s diagnosis, I felt helpless and disconnected from my parent’s quest to find their footing across the country in Columbus. So being the proactive type, I searched for Parkinson’s volunteer organizations in the Los Angeles area as a way to learn about my dad’s disease from the west coast. I participated in a variety of events and volunteered and fundraised for local PD organizations. This is how I found my PD tribe, which includes my fellow PCLA board members.
What advice would you offer to an adult child of a parent who has just been diagnosed with Parkinson’s?
Lora: Get involved with both national and local PD organizations. It’s a great way to learn more about the disease while finding your local PD tribe. Even though I wasn’t in the same city as my parents, I was still able to learn about the challenges those living with Parkinson’s face on a daily basis. It made me more empathic to my dad struggles with PD and to my mom’s being his primary caregiver.
Make sure to continue to involve them in your life as much as possible even if you live far away. I found that my dad felt more connected when he was able to help me solve a problem or was kept informed of my finances and car issues.
Be willing to adapt how you engage with your parent. My dad was always very active, from mowing the lawn to reading/sending emails to tossing a ball around, but as his disease progressed it became more difficult for him to continue at the same pace. When visiting, I’d often take him to his modified yoga classes and join in, and when he stopped using the computer and cell phone, I would snail mail him a card filled with pictures that were much easier to handle than a phone.
Sarah: Like Lora said, get involved in the community! Attend events, raise money for support and research, and consider volunteering for a PD-focused organization. You’ll make new friends, and it will help you stay updated on news and research. I found that taking action to help other people living with Parkinson’s helped me feel less helpless in the face of the disease.
You’ve both formed fundraising teams for PCLA’s upcoming Community Walk. Can you talk a bit about what being involved in an event like this means to you?
Sarah: Yes, my brother and I formed a team and are walking and fundraising in memory of Mom. I’m really excited to be a part of this event! It’s going to be a lot of fun, and I’m looking forward to seeing all of my friends in the PD community in one place.
Lora: Forming a team for the Community Walk allows me to stay active within our L.A. PD community, share my passion with friends and family, and enjoy an amazing day connecting with new people!
Thank you for sharing your stories with us! We look forward to seeing you at the Walk.