HUDSON, Ohio — An Alzheimer's diagnosis at a young age is not going to slow down Joan Uronis.
In fact, Uronis sees the diagnosis that came at the age of 62 as a blessing.
I look at Alzheimer's as a gift I have been given by God to do with what I want to do with and use it for the good of others, she said. And that is what I am going to do.
This month — National Alzheimer's Disease Awareness Month — the story of Joan and Al Uronis will serve as an example of how the disease affects families.
At first, Joan Uronis found she got lost while driving to familiar places, even to the home of family members. Then she had greater difficulty doing two or more tasks at the same time. She would forget friends' names.
Last year, she got the official diagnosis.
Uronis, 63, who worked as a general manager in the health-care field for many years, and her husband, Al Uronis, 64, her caregiver, recently were named to the 20-member National Alzheimer's Association Early Stage Advisory Board.
Only 4 percent of Alzheimer's cases are considered early onset, which affects people who get the disease before they reach 65. Joan Uronis said the disease progresses more rapidly in early onset patients like her.
Uronis was fired from her job last year, she said, when she was having difficulty doing what was required of her, such as remembering conference calls, handling budgeting and other duties.
Alzheimer's causes confusion, so if you have too many things going on at the same time, it is hard for your mind to grasp that, said Al Uronis, who works as an account manager for a Cleveland company. He said he plans to work only part time next year so he can spend more time with his wife.
The lifespan of people with early onset Alzheimer's is five to seven years, Al Uronis said.
The couple has been speaking at Alzheimer's Association meetings and traveled to Chicago for the filming of an educational video for the American College of Physicians Foundation.
Joan Uronis said she has trouble following what she reads. Her husband said that when they watch a television show, she often can't follow the storyline.
He often wonders, Are we watching the same show? he said, because of her difficulty following what's happening.
Her mother and uncle both had Alzheimer's disease, Joan Uronis said.
I was a caregiver to my mom, and now I am living it, she said.
Because she worked in the health-care field, she said, she has extra compassion for those who have the disease.
This isn't the first time Uronis has experienced a health crisis. In 1990, she had brain surgery to remove a benign tumor.
I have always taken the challenges and turned them into opportunities, she said. I turned it into something positive.
Now, she said, I have Alzheimer's, and I am out advocating for those who have Alzheimer's.
Pam Schuellerman, executive director of the Greater East Ohio Chapter of the Alzheimer's Association for nearly 20 years, said Uronis was chosen to be on the national board because she was eager to talk about the disease.
Her attitude and desire to be an advocate has a profound impact on me and the rest of the staff, Schuellerman said.
She called the Uronises' relationship an inspiration.
I love to see how proud and supportive Al is of Joan, Schuellerman said. This disease affects entire families and many people in their prime like Joan. ... When she speaks, you can hear a pin drop in the room.
It's hard to believe that she is fighting and trying to live with a terminal illness.
Uronis said that upon learning her diagnosis she made the decision to make the best of what she faced.
I said to myself that I am ‘dying to live' — not sitting back and waiting to die, she said.
The challenges are difficult.
Our world is different, Joan Uronis said.
If she loses something, it can feel devastating.
I lost my keys, and it was almost a panic, she said.
She had a hard time retracing her steps to figure out where the keys might be found.
It's not like I can walk here or think of where I was last, she said.
Still, she said, a person can approach a fatal disease in two ways.
You can say, ‘Poor me, pity me. And my life is over, and what am I going to do now?' And then die, she said.
Or you can die to live. ... I have a lot of life ahead of me and I have a lot of things to do, she said. I can't change the course of my disease, but hopefully I can be a voice for those who have a later stage and can't talk.