Whether we feel angry, have a request or want to connect with friends or family, words allow us to communicate what is on our minds. But what if you slowly lose the ability to come up with the right words to describe what you feel or think?
Individuals with Primary Progressive Aphasia (PPA), a rare type of dementia that first attacks the language areas of the brain, and their caregivers live with this reality.
In 2013, Dave Robertson was diagnosed with PPA. Janette, his wife, noticed that he began to slur his words and was talking in a way that “didn’t seem right.” The Hamilton couple was referred to Baycrest’s Sam and Ida Ross Memory Clinic, where neurologists identified Dave’s symptoms as signs of the neurodegenerative disorder.
Since the disorder is rare, there are limited services available for individuals. To remedy this problem, Dr. Regina Jokel, a speech-language pathologist and clinician associate at Baycrest’s Rotman Research Institute, has focused her research efforts on developing treatments for this illness. She is one of the few researchers around the globe to pursue this line of work, which also helps researchers better understand the progression of other neurodegenerative disorders, such as Alzheimer’s disease. As a worldwide authority on PPA , Dr. Jokel developed the first group language intervention for people with PPA and their caregivers.
After Dave and Janette participated in the 10-week group – involving language activities and counselling and education for both patients and their caregivers – Dave showed signs of bolstering his communication abilities.
“The first time Dave attended the group, he wouldn’t talk or be involved in anything,” says Janette. “By the time he finished, he was participating in what was going on. He came out of his shell and talked a little, which helped us communicate with each other.”
Prior to this experience, Dave wasn’t the type to participate in group activities, adds Janette.
“It was wonderful to meet with other spouses and discuss what we were all going through. It helped us a lot and it was comforting to know there were other people out there who had PPA since so few people know much about it,” says Janette. “There’s an aphasia group Dave went to in Hamilton, but it wasn’t for him.”
Unfortunately PPA has continued to take its course and Dave’s condition has progressively worsened, but Janette remains thankful for the ongoing research.
“Before we joined Regina’s PPA group, we felt hopeless,” says Janette. “Regina has given us hope that maybe someday, with all of her research, they will know more about PPA and even find a way to prevent it or slow it down. It made us feel good that there is some research going on about it that may not help Dave, but to help other people.”
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