36 Mike and Karen Kessler I In 2014, Mike Kessler, a member of Alzheimer Society of Windsor-Essex County, was in a car accident that caused him to suffer a non-traumatic brain injury and a concussion. But even after receiving two years of speech therapy and physical rehab, he had still not fully recovered — particularly when it came to his cognitive health. “Things were actually getting worse,” Kessler said. “It was my wife, Karen, that noticed all the symptoms that I was displaying. I would have trouble completing sentences and completing thoughts. It took a lot of personal advocacy on Karen’s part to actually get me in front of a neurologist.” Almost 18 months after Kessler’s first symptoms, he came home with a diag- nosis of vascular dementia and mild Alzheimer’s. “For me, the diagnosis was actually a relief,” he recalled. “Some people look at it as a death sentence. What I didn’t want to do was give up. I’m a fairly hopeful guy. Now that I had the name of the monster that I’m facing, I knew there had to be a path forward.” Two months after his diagnosis, his wife contacted the Alzheimer Society. The Kesslers were assigned an educa- tion support coordinator (typically either a trained social worker or a nurse, who advises new Alzheimer Society members about different pro- grams and support initiatives). And, the couple joined Minds in Motion, a four-week program that incorporates physical and mental stimulation for people with early to mid-stage demen- tia and their care partners. “After the first day, when Mike spoke about himself, the person running the program had tears in her eyes, and said, ‘Can you stay after? Could you be on my podcast?’ That’s where it started, and since then there have been oppor- tunities dropping out of the sky to advocate,” Karen said. Since those early days, the Kesslers have become champions for building dementia-inclusive communities, through participating in programs, advocating for policy at the local and federal levels, joining boards, being repeat guests on podcasts, posting vid- eos to his own channel, and speaking at major fundraising events, with crowds of 1,500 people. If Kessler had one message for those grappling with an early cognitive diag- nosis, he said, he would be to be hon- est about your situation - with yourself, at the very least. “One of the big things that gets in the way of someone’s treat- ment is denial and pride,” Kessler said. “What do I need to deny it for? It’s kind of obvious at times. If I’m able to tell my story, maybe I’ll help someone else at least face the idea of getting diagnosed, because early diagnosis is vitally important.” Kessler’s own experience of waiting 18 months for an accurate diagnosis solid- ified his belief that primary care physi- cians need to receive better educational training about dementia and its signs. And as members of the Patient, Family and Caregivers Partnership Council for the Windsor Essex Ontario health team, the Kesslers are working to make local hospitals more dementia-friendly by advocating for increased training of hospital staff when it comes to caring for patients with dementia. Further, they are seeking approval of a proposal at a local hospital to have a wristband of a different color, either light blue or yellow, that can identify patients with dementia. As soon as patients are admitted to the hospital, they would be given this wristband by the staff. Kessler believes it would change the experience of patients with dementia in hospitals and make them more accommodating environ- ments. “So they [hospital staff] know that I have dementia, they have to be patient with me, speak slowly, maybe repeat requests one instruction at a time - and my caregiver gets to go with me,” Kessler explained. Mike and Karen have been such pres- ent advocates, they say, they are becoming accustomed to being stopped by strangers occasionally and engaging in conversations about dementia. “The advocacy doesn’t stop with professional media,” he said. “I’ll advocate no mat- ter what, it doesn’t matter- [at a] coffee shop and somebody stops us and talks to us.” Community Advocates Mike and Karen Kessler Share Their Story PROFILE CONTINUED ON PAGE 38
