Treatment delayed is treatment denied, says a 46-year-old former nurse, who was diagnosed with dementia in 1999.
Early detection and treatment of dementia is essential, said Lynn Jackson.
"It's hard in Canada because first of all you go to see your family doctor, then you wait six months to see a neurologist, then you wait another six months to get an MRI and time passes," she said. "We sometimes don't get the chance for early treatment here in Canada."
After working for 14 years as an emergency room nurse, Jackson accepted a position with a large international medical supply company. She assumed the extended travel and added workload were causing her decreased energy levels and increased forgetfulness. After many tests, she was diagnosed with frontotemporal dementia in 1999.
"People with early-stage dementia get better if they're treated earlier," she said. "Dementia medication doesn't work for everybody, but it's worth a try. Even if it doesn't make you better, it keeps you at the same stage."
A dementia diagnosis is one of the worst things a person can experience, "especially coupled with the fear of not knowing what will happen next or who we will be when we die," Jackson said.
Speaking at an Alzheimer Awareness lunch Friday in Regina, Jackson's message was, "Knowledge is power, so know about the different medications. With these medications, we are staying better for longer than expected."
Jackson will have taken Aricept for four years in April.
"I'm also on a second dementia medication," she said. "A year and a half ago, there was a drug in clinical trials called Propentofylline. I didn't fit into the trials because I didn't have a diagnosis of Alzheimer, but I got it on a compassionate basis."
After Jackson started taking the drug, the drug company suspended clinical trials and discontinued patient use.
"A family in Vancouver had a loved one on it who was doing so well that they went to the drug company and made arrangements for everybody that was on it in Canada to be on it for two years and they paid for it," Jackson said. "The two years is up in June."
The thought of losing the drug that helps her so much frightens Jackson. She hopes to get it from Sweden or Japan, where it is being manufactured.
"I was slipping a little bit with the Aricept," she said."I would write a phone number down, I would repeat it to the person and then I'd go to phone them and it would be the wrong number. This would happen repeatedly with numbers or words."
Hope lies in an Internet support network called Dementia Advocacy Support Network (DASN) International, which she co-founded.
"Many of us diagnosed with various dementias did not have the support we needed in our own communities, but we did have access to the Internet," she noted. "The reason the people in my Internet group are doing so well is because we are making an effort to help ourselves, but we're helping ourselves by helping other people."