In 61 years of marriage, Sue and Larry have faced their share of challenges: raising a daughter while working full time, Sue’s return to school and career shift, Larry establishing a new business mid-career while battling prostate cancer, and losing their parents and Larry’s beloved sister.
Through it all, the couple forged on with things they loved most: family celebrations, travel, boating, attending the Metropolitan Opera, and generally enjoying life. Then eight years ago, what began as difficulty standing up and acute foot freeze soon proved to be something serious.
Larry’s Parkinson’s disease (PD) diagnosis was something they didn’t see coming. With no experience as a care partner and a husband who was fast developing new medical needs, Sue knew she had to educate herself about PD and prepare for possible and probable changes to their lives.
While Larry was facing down enormous challenges, Sue was confronting a complex set of difficulties of her own as a new care partner.
“We established a good routine and were managing well,” Sue said. “Larry still had a good measure of autonomy, and I was able to continue my psychotherapy practice part time.
“Then, one day, while I was at the office, I was unable to reach Larry by phone. That was a turning point for me. I realized I no longer wanted to be that far from home and Larry for so many hours at a time. I wanted to take charge of Larry’s care, to maximize quality time, and enjoy the special intimacy of being his care partner. So I took the hard next step of closing my office and retiring from my practice.”
Sue turned to the American Parkinson Disease Association (APDA) — via an APDA information & referral center coordinator, Julie Garofalo, R.N., and an APDA monthly support group at Stony Brook Southampton Hospital — for advice, encouragement, camaraderie, and resources. Sue and Larry dealt with their losses, together and separately, with the help of family, counseling, and, in Sue’s words, “the diverse, comprehensive, educational, and therapeutic programs offered by APDA.”
The journey to hope
With the help of APDA, Sue found the resources and community she and Larry needed to maintain a good quality of life. Importantly, they also found fun, friendships, and optimism through APDA and its local partner Sarah Cohen, the director of the Stony Brook Center for Parkinson’s Disease.
With APDA’s backing, Cohen tirelessly and creatively organizes support groups, exercise classes, and a host of innovative courses and experiences like “Paint for Parkinson’s” at the Parrish Art Museum and “Sing Loud for PD,” a choral group for people with PD and their care partners.
“SING is magic,” Sue said. “What a joy to see people across the nation light up on Zoom weekly, as we used to in person prior to the pandemic. In short, APDA’s engagement and support help make survival possible.”
A brighter future
By reaching out for help, Sue and Larry felt better equipped to handle most PD-related eventualities.
“APDA provides the latest research, medical information, and updates on the various therapies and support available,” Sue said. “Because of APDA, we have found an invaluable cohort of brave and spirited people in our situation.
“APDA doesn’t just talk the talk, it walks the walk in the tangible reinforcements it provides. If I were to encapsulate their approach to programming, I would say they focus on what we can do and not what we can’t. It’s wonderful.”
Thanks to supporters like you, APDA can provide the support, education, and research that help people like Sue and Larry live life to the fullest. Visit apdaparkinson.org to learn more about how you can help.