It was five years ago when Forest Lake resident Sandra Cournoyer’s husband was diagnosed with a frontotemporal disorder. At that time, it was so rare that there were doctors who had never even heard of the affliction.
“I immediately began to educate myself about the disorder and what our options were,” she said. “I joined a support group at Bethesda Hospital in St. Paul, and that really helped to provide me with a lot of good information that I probably would not have otherwise had access to.”
Frontotemporal disorders lead to dementia and affect personality, behavior, language, and movement. The symptoms gradually rob people of the ability to think, talk, walk, and socialize. The disorder is typically early onset and often strikes people between 40 and 50 years old. The average longevity post-diagnosis is six to seven years.
“The support group in St. Paul was so helpful for me that I wanted to find a way to reach out to others who might not know where to turn or might want a more local option,” Cournoyer said. “That is why I started a support group meeting at the Hardwood Creek Library at 6 p.m. on the first Tuesday of every month. I am positive there are people who could benefit from this group but that might not know it exists.”
Cournoyer said that the group can not only provide vital information for caregivers and family members of those suffering from a frontotemporal disorder, it can also be beneficial on a more personal level.
“The group can provide a sense of belonging,” she said. “Being a caregiver in a situation like this can be very isolating, as very few people know what you are going through. The people in this group will be able to relate to one another in a way few others can.”
For more information regarding Frontotemporal Disorders, visit www.theaftd.org.