Alzheimer's patients to reveal first-hand stories of living with the diagnosis

Superior Morning9:34Bill Heibein - Living With Alzheimers

Bill Heibein was told he had early onset Alzheimers Disease 17 years ago. He's still well, but he wants to help break the stigma about the disease.

Organizers behind a presentation in Thunder Bay Wednesday afternoon hope it leads to more understanding about Alzheimer's disease and dementia.

Bill Heibein, who was diagnosed with early-onset Alzheimer's more than 15 years ago, says the interactive talk will feature people with the diagnosis sharing their perspectives.

He said he hopes it provides encouragement for people who are dealing with the condition.

"People who have been diagnosed will continue to be involved in whatever it is they like to do, whether it's playing golf, whether it's going out in public, going for dinner, whatever," he said.

He said it's critical that those with the diagnosis "don't sit down, don't withdraw into a corner."

By telling his own story, Heibein hopesit will help reduce some of the stigma surrounding the condition. After he was diagnosed he went into a "deep depression," for about three months, he said.

Defying the odds

"I guess I was believing what they were telling me," he added.

"I was told that with medication, early diagnosis I may be possibly be able to get five good years before I'd eventually end up in a nursing home. Well, that's 17 years ago," he said.

Caring for the horses he and his wife breed, as well as training and showing them, has been an important part of helping him live with the condition, he added.

Heibein said many people have a "fixed picture" in their mind about those with Alzheimer's or dementia that they're limited and incapable of doing anything for themselves, or that they'll react unexpectedly.

The fact that people who have been diagnosed with Alzheimber's, like himself, will be leading much of the discussion at Wednesday's presentation will show that those stereotypes aren't always accurate, he continued.

"With early diagnosis, medication and so forth, a person can continue to live, and live well, with a diagnosis of a form of dementia," he said.

Heibein is involved with the Alzheimer societies of Thunder Bay, Ontario, and Canada, and is on a provincial government task force aimed at establishing a long-term dementia program.

The presentation organized by the Lakehead University's Centre for Education and Research on Aging & Health, the North West Dementia Working Group and the Alzheimer Society of Thunder Bay starts 2 p.m. at Trinity United Church.