Amy Shives is one of the founding members of Dementia Alliance International, and last year was a member of the Board. She was interviewed about living with younger onset dementia recently, and has given us permission to share it here as a blog. Thank you Amy. Congratulations also, as it is a wonderful interview.
Interview from the story online :
Fighting the stigma of younger-onset Alzheimer's
"At 57 years old, Amy Shives is not someone you'd expect to have Alzheimer's, but she does. She says she started noticing a change in her memory at her job. Amy worked as a school counselor at Spokane Community College for 25 years.
"I began to experience difficulty with my memory, especially technical things that I needed to know for my position, and we started looking into what that might be," said Shives.
Amy decided it was time to see a neurologist, who diagnosed her with younger-onset Alzheimer's disease in 2011. Amy says she wasn't completely shocked because her mother also had symptoms of Alzheimer's in her early 50s.
"My mother had it. So I had never really, not at all worried about getting the disease. But when I was told that I had it, after having had the symptoms myself for a really long time before the final words were said to me, it wasn't a shock. It's harder on the family members at that point to hear that," said Shives.
Now, Amy says her Alzheimer's also affects her hearing and sight. She says she can't be in a crowded place for very long because of the noise, and it's hard for her eyes to judge depth perception. While living with younger-onset Alzheimer's is a daily battle for Amy, she says she wants people to know it's not stopping her from living an active life
"The biggest misconception is the traditional thought that we are elderly, that we aren't mobile, that we need a lot of care, which eventually we will, but there's a whole long life where we need to function as best we can in society and remain productive at whatever level," said Shives.
Watch the video, which I apologise for not being able to embed here...
Editor: Kate Swaffer