For Allyson Kinney, subtle changes sounded the alarm.
“I didn’t know it, but two years ago at Christmas time, I found out after the fact my family thought I looked awfully stiff; and I looked kind of fragile. I was moving like a robot,” says Allyson.
Allyson’s family may have written the changes off to coping with the loss, just one month earlier, of her husband of 44 years, David Kinney. After the holidays passed, however, Allyson remembers, “a month or two later, I was walking my dog and I noticed my gait had changed. I just felt like I was not walking smoothly, and my right foot was shuffling sometimes.”
She mentioned those two symptoms and “a very stiff neck” at her next regular doctor’s appointment. That was enough to send Allyson off to a neurologist for clinical tests. The tests confirmed Allyson has Parkinson’s Disease.
From that point to this day, Allyson has made huge leaps in bringing together a Parkinson’s disease support community like the shoreline’s never seen. That’s because, up until now, there really hasn’t been anything like it available in this area.
On Saturday, Feb. 6, Allyson invites shoreline residents to the Branford Community House at 1 p.m. to join the rapidly-growing Parkinson’s Support Group she leads for non-profit Connecticut Advocates for Parkinson’s (CAP).
Through CAP’s “active” group structure, Allyson is able to help facilitate educational and topical talks from visiting guest speakers and experts on as well as opportunities for group members to participate in clinical trials (including support from the CAP Clinical Trial Transportation Program), connect with special exercise programs, and, of course, share ideas and encourage one another.
The newly formed shoreline support group has been growing rapidly since its introductory meeting in December at the Blackstone Library, which packed 20 attendees into the small room Allyson booked. At the formal inaugural meeting in a larger room at the Blackstone on Jan. 14, some 50 attendees filed in. They heard news of what the group will offer, a talk given by a Yale neurologist, and met statewide Parkinson’s advocacy leaders and group representatives, including the co-chairs of CAP, who introduced Allyson as Branford CAP lead facilitator.
The monthly meetings have now been moved to the Branford Community House, where Allyson expects to see an even greater number of people with Parkinson’s and their family and friends fill the room this coming Saturday.
“I have no doubt there will be no lack of people coming. My cell phone is ringing off the hook. It’s just awesome,” says Allyson.
Attendees are coming in from Branford and surrounding shoreline towns, including Guilford, Madison, and East Haven, as well from towns outside of New Haven County. Drop-ins are welcome at all meetings, which will take place the first Saturday of every month.
“It’s like the best-kept secret: ‘Where do you go for support?’ There’s nothing else like it on the shoreline,” says Allyson. “I just got a call from Branford man who has a friend with Parkinson’s who’s been looking for a support group for a long time, and he’s putting her in touch with me. It makes me feel so good!”
What’s amazing about the burgeoning Branford-based CAP group is that it combines so many elements of the type of support Allyson found lacking in this area, but available elsewhere in the state. She just had to track it down.
“I was diagnosed a couple of years ago, and when I went to the neurologist I asked him if there were any support groups around, there weren’t any. So I decided that’s something I want to pursue,” says Allyson.
She started off on her own, gathering a small group to “chat and share” at Branford’s Canoe Brook Senior Center for monthly meetings.
“It was great, but I had very low attendance, because you can only have people who are involved in that facility,” says Allyson. “It actually was a nice way to get started, because I was new to Parkinson’s and I’d never been to a support group before. I knew it was a good idea to just chat and share, because we were all experiencing different levels of the disease and different symptoms, but we all have something in common.”
But Allyson was also determined not to just talk about Parkinson’s—she wanted to impact the disease by creating positive change in her life and hoped to do the same for others. Her search for information led to learning about the benefits of high-intensity exercise.
“I’d heard about how high-intensity exercise benefits Parkinson’s patients in particular, and then I found about this wonderful exercise program called Beat Parkinson’s Today. But all the classes were too far,” says Allyson. “I went all the way to New Britain to see what the exercise class was all about. It was fantastic! I was so encouraged, but I couldn’t keep driving all that way to a class.”
What to do? If you know Allyson, you know she didn’t give up.
“I contacted Michelle Hespeler, who runs it,” she says. “I kept nagging her! For a whole year, I was calling her and saying, ‘So, when are we going to get a class on the shoreline? How can we start that?’”
Michelle offered to try bringing a class to this area if Allyson would help find a place to hold it. The first shoreline Beat Parkinson’s Today class was held last summer at Branford High School and has since found a weekly home at Orchard House Medical Adult Day Care in Short Beach.
“They’ve been very hospitable,” says Allyson of Orchard House, adding the class charges a small fee and features an energetic Michelle in the lead. “She’s had Parkinson’s for nine years, and you never would know it.”
Allyson strongly feels the once-weekly exercise class, together with her weekly regime of tai chi, yoga, physical therapy, a chiropractor’s visit, and “anything else I can squeeze in,” are helping to keep her Parkinson’s symptoms in check.
“I’m just such a believer in that,” she says. “I’ve seen it in Michelle and I’ve seen it in myself. If I don’t exercise for a couple of days, I feel it.”
While it’s quite an accomplishment to bring the shoreline easy access to a special exercise class designed to specifically improve Parkinson’s symptoms, Allyson didn’t stop there. That’s because she found out she could help bring even more to this area to assist people with Parkinson’s.
During the process of reaching out to Michelle, “I found out about all these other organizations, like CAP,” says Allyson. “So CAP kind of fell into my lap. There’s kind of a pyramid of support in the state, and CAP is one of the organizations at the top of the pyramid.”
Michelle Hespeler co-chairs CAP together with CAP founder, Steve DeWitte.
“They knew I had the program at the Senior Center and at the end of the summer, they approached me and said, ‘If you want to start a support group, we’ll help you.’ And they have been fantastic,” says Allyson.
CAP has made Branford home to its third support group location, the only one in this corner of the state. Founded in 2006, CAP currently serves more than 150 people with Parkinson’s and their families. CAP depends on donations to advocate for research while providing opportunities, outreach, and education for people living with the disease. CAP also collaborates with other Connecticut Parkinson’s groups, including Connecticut Parkinson’s Working Group and Torrington Area Parkinson’s Support Group.
In a serendipitous twist, Allyson has launched her efforts on behalf of CAP in Branford just six months after retiring. She taught computer science at Gateway Community College and was program coordinator for 29 years.
“I just retired, and thank God I did, because this has become my full time job,” Allyson jokes. “I am happy to be doing this, but one of the things I am going to propose on Saturday is to ask people to volunteer for different things to help out. There’s a whole myriad of things that people can get involved in.”
Being diagnosed with a neurological disorder for which there is no known cause, or cure, certainly has been life-changing for Allyson. But Allyson also says she feels “empowered” and hopes she can help others to feel the same way.
“You’re not a victim in this,” she says. “Believe that you can make your life better; you can make your life whatever you want it to be. You’re in the driver’s seat.”
The next CAP Branford meeting is set for Saturday, Feb. 6, at 1 p.m. at Branford Community House, 46 Church Street. For more information, visit www.parkinsonsct.org email email@example.com or call 203-996-8861.