Alzheimer's disease can happen in some families.
Your grandma has it, your mom has it, your uncle has it, your aunts have it. Karen says that she assumed that she would have it.
June Ward said that it was always in their peripheral vision.
It has been a part of our life that our mother began to have symptoms at the ripe old age of 62.
When Alzheimer's was affecting so many family members, Karen, June, and Susie decided to find out why.
Each sister has been told if she carries a rare genetic abnormality that makes Alzheimer's inescapable. Scientists are trying to find treatments for the disease.
I met Karen and June at the first-ever conference for families with a particular type of genetic variation in which Alzheimer's is more likely to appear in middle age.
The Alzheimer's Association and the Dominantly Inherited Alzheimer's Network trials unit sponsor the annual conference.
Karen and June came to Washington, D.C. for the family conference because they learned about a cousin on their mother's side.
Alzheimer's was the cause of the cousin's death. She had a rare genetic condition called presenilin 1 that was found in her genetic tests. It's one of three genes that cause Alzheimer's to show up in middle aged people.
The three genes that cause early Alzheimer's are different from the one that increases the chance of Alzheimer's in older people. It is almost certain that an individual will develop the disease if they have the early-onset mutations.
There is a 50% chance that the child of a parent with the presenilin 1mutation will inherit it.
The sisters' mother had developed Alzheimer's in her 60's, and the genetic finding in Karen's cousin seemed to explain why. It means that any of the sisters, or all of them, could have the same genetic abnormality.
During a round of golf, Karen received the news that she was pregnant.
She said that we now have a flip of whether we will develop Alzheimer's by the time we are 62. Karen said that it was a heavy load on the golf course.
"It was shocking news, but yet there was this element of 'oh, so now we know what's been going on,'" June said.
Susie talked it over with her sisters.
The sisters were raised in the Blue Ridge Mountains of North Carolina. The three younger girls had a special bond.
In the spring of 2015, they decided.
June told me at the 2015 conference that they were doing what they could to improve the future.
They started raising money for a good cause. They volunteered for Alzheimer's drug studies.
Seven years ago, everything happened.
I met up with Karen and June again. The family conference was held in San Diego. Susie was the matriarch of the group.
By this time, all three sisters knew if they were carrying the genes.
The youngest person to find out was Karen.
She decided to do gene testing after the meeting.
June waited until the beginning of March of 2016
She said she was ready to do genetic testing because she likes to know things. If I live long enough, I'll get Alzheimer's disease if the experimental medicine doesn't work.
Susie didn't want to find out if she carried the genes.
"My husband and my two children said they would just as soon as possible," she said.
Their views changed as time went on. Susie found out in March of this year that she has the same genetic abnormality as June.
She was very upset at first.
Susie says that the next day she was wallowing in self pity. My grandchildren won't know me as a healthy person if I don't celebrate birthdays.
I was praying for him to take my worries away when I was on the front porch in the mountains of western North Carolina. I'm sitting there, rocking, and this single cloud thins and thins and thins, and then, poof, it's gone, and I'm worried.
Even though Karen is negative for the mutations, the situation is still worrying her.
She got some bad news about her health. She had a disease. Alzheimer's does not make a person feel helpless, according to Karen.
You go to the doctor. You are going to see an doctor. She says there is a to-do list. Susie had a to-do list after she was diagnosed with a disease.
June and Susie could be at risk of developing symptoms at any time. Her family will be devastated by that.
She calls them marshmallows because they're so sweet.
June has participated in Alzheimer's research studies.
She knows the drugs she is taking are not likely to help her. She hopes they will lead to treatments that will benefit younger members of her family.
She says she's all in if she can have a positive effect on their lives.
There is an annual conference for families affected by the early Alzheimer's. She feels a sense of ease when she hears about scientific advances.
She says there's a comfort in being in the presence of people who know about Alzheimer's disease.
June says that attending the conference reminded her of the extreme version of the genes.
She says that sometimes she feels guilty because she's a 61-year-old woman with the genes who can still have a conversation. People in their 30s are struggling.
The sisters are hoping for a drug that slows down the disease. They plan for a future without that drug.
Karen grew up in the Blue Ridge mountains. She and her siblings were raised in the same home. A family compound is called "the holler."
Karen says it's like the Kennedy compound. Wheels are on some of the houses. I would love to have my sisters there.
June says that the good thing is that we would be surrounded by family and friends. Somebody would help us find our way home if we left.
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