John Munn has become an advocate for his wife, Nancy, as they face her illness together.
Four years ago, Nancy was diagnosed with Primary Progressive Aphasia (PPA), a rare disease that begins low in the parietal lobe and affects language skills and translation of speech. PPA is a sister disease to Alzheimer’s, but normally has an earlier onset. It usually hits people in their mid 40s or 50s.
John said he decided early on that he would learn as much about the disease as he could to become the best caregiver to his wife.
“Every year I go to a major workshop in Chicago for caregivers,” he said. “Northwestern University has done a lot of research and they share it at these caregiver workshops.”
He said attending the educational training has helped him to better understand the disease and be a better caregiver to his life-long love.
“It’s a unique and rare disease, so I can also call anytime I have questions,” John said. “If they don’t know the answers, they find people who do.”
Through his experiences with Nancy and information at the yearly workshops John has developed a concept called the Care Calendar.
“At first, I could easily leave the house for two or three hours or to sneak and get groceries for 20 or 30 minutes,” John said. “But it started getting more and more difficult.”
While at one of the Northwestern University workshops participants learned about an online calendar that could help caregivers create a schedule to organize helpers.
“I didn’t like it because it asked you to give out too much information like e-mail and phone numbers,” he said. “I didn’t want to ask them to give up their privacy.”
The first thing he did was to find a liaison between himself and the volunteers who would come in and give him a break.