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FTD: Beyond the Reflection Part 2

Kara Kirby is 30-years-old. At 29, doctors diagnosed her with Frontotemporal Dementia or FTD.

Posted: Oct 31, 2019 6:24 PM
Updated: Nov 1, 2019 12:25 PM

PARIS, Ill. (WTHI) - Memory loss doesn't just impact older people. It can hit people in their prime. When they have kids, careers, busy and active lives.

In part one, we introduced you to Kara Kirby.

What Causes FTD?
The clinical symptoms of FTD are caused by degeneration in the parts of the brain that control decision-making, behavior, emotion and language (typically the frontal, temporal and insular regions).

How is Age-Related to FTD?
In people under age 60, FTD is the most common cause of dementia and affects as many people as Alzheimer’s disease in the 45–64 age group.

What Happens in FTD?
There are several forms of FTD that lead to slightly different behavioral, language and/or motor symptoms. Due to the symptoms, people with FTD are often misdiagnosed with Alzheimer’s disease, psychiatric problems (such as depression, manic-depression, obsessive-compulsive disease or schizophrenia), vascular dementia or Parkinson’s disease.

SOURCE

Kara is 30-years-old. At 29, doctors diagnosed her with Frontotemporal Dementia or FTD.

It's safe to say Kara lives in the moment. It's her world.

With an FTD diagnosis, time works against you. That is why the Kirby family came forward - to share their story.

Kara is the happy, caring, loving, and sweet daughter of Tim and Dawn.

"I believe God allowed everything to happen when it did because the truth of the matter is - she already had the illness," Dawn said.

The Kirbys have chosen not to focus on what might be or what's going to be. Doing this, they say, allows them to absorb the present and make memories they will hold onto forever.

"I've spent hours crying. I've asked God why. I've wondered how this happened...and why her existence is so different and it's been very heartwrenching. And believe me, I'm not special or stronger than most," Dawn said.

Dawn will quickly tell you as a caregiver, this journey is overwhelming. Connecting with others that are living this same nightmare helps.

"You see what you are going to be facing in the near future and there are times I've been on the support group before going to bed and it's been difficult to go to sleep thinking how am I going to handle that. I can start preparing for that," Dawn said.

Paying it forward is important to the Kirbys.

"I don't want Kara to have suffered through this and not something good come from it," Dawn told us.

For them, that good is raising awareness.

The Kirbys say mistakes were made in getting to Kara's diagnosis.

LINK | LEARN MORE ABOUT FTD

They don't want others to waste any time...time you can't get back.

An interview with Kara never really happened. We tried, but what we experienced was more of an encounter. This gave us a clear look at why FTD is commonly referred to as one of the cruelest diseases.

For now, you can find this young woman with a big smile watching videos on her iPad. Christian rock artist Toby Mac is her favorite.

She told us Christian music makes her feel good.

LINK | MEMORY AND AGING CENTER - FTD

She loves swinging. She told us she is at peace when she does it.

"It reminds me of the good ole days. Swinging when I was young," Kara told us. And when she's done swinging, "I'm gonna stop because I'm ready to leave."

Kara's world as she once knew it has changed. This twist of fate has her back home, living with her parents.

Kara is a fighter. Unfortunately, with no treatment and no cure, FTD will win in the end. But don't count her out...she still has a lot of living to do.

She is participating in FTD research at Mayo Clinic in Minnesota. Research that hopefully, one day will create a treatment and a cure for this devastating brain disease.

On Sunday, November 3 there will be a turkey noodle benefit dinner to benefit the Kirby family.

It takes place at Saint Mary's Church on North Main Street in Paris, Illinois.

It will be from 11:30 a.m. until 2:00 p.m. central time.

With the dinner, there will be a hog raffle, bake sale, and silent auction.

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