Alzheimer’s is a terrible disease. I saw its vicious work affect my friends, Florida Rep. Scott Plakon and his late wife, Susie. Last year, Susie went to heaven after wrestling with early-onset Alzheimer’s for a number of years. She was one of the sweetest, loveliest and kindest people I ever knew, and everyone who met her mourned her death. But what the devil means for evil God can use for good. As a result of the Plakons’ heartache with Alzheimer’s, something incredible is stirring this week in Tallahassee, Florida. I invited Scott into Charisma Media’s podcast studio to tell me about it. (You can click here or scroll down to listen to our entire conversation.)
“Just yesterday I passed House Bill 449 at its final committee—it’s been through three committees already,” Scott tells me. “It’s a bipartisan effort. Basically, the bill started out five days after Susie passed away [when] the governor appointed me to something called the Alzheimer’s Disease Advisory Council. There are 10 members, four of which have to be caregivers. … It helps advise the legislature on Alzheimer’s issues.”
The first thing House Bill 449 will do is expand the Alzheimer’s Disease Advisory Committee to 15 members, giving the speaker of the House two picks and the Senate president two picks. One of those picks must be from the House and another one must be from the Senate. The bill will also require the Department of Elderly Affairs to review and update the state’s Alzheimer’s disease plan every three years. In addition, the new legislation will establish another specific memory disorder clinic and protect certain clinics from losing funding.
This bill is important because, Scott says, “there are 550,000 people in our state and 5 million nationwide who are struggling with this disease that is so little understood. So part of my mission is just to bring awareness.”
Scott says raising awareness is crucial because too many people have an inaccurate view of Alzheimer’s, just as he once did. When Susie was first diagnosed with Alzheimer’s in 2014, Scott thought the disease was as simple as Susie losing her memory and one day passing away. But what he didn’t know was that Alzheimer’s comes with a host of other heartbreaking symptoms.
“I didn’t know anything about my wife having myoclonic short seizures or grand mal seizures with head injuries,” he says. “[I didn’t anticipate] hospital stays with staples in the back of her head and a brain tear from the fall. I didn’t know anything about agitation, almost psychotic-like breaks, where sometimes they even get violent. And in the last year and a half, she needed, of course, 24/7 care. In the last year and a half, I took care of all her bodily needs—along with the help of some other family members and a caregiver. I didn’t know about sundown syndrome. I had no idea.”
Scott tells me sundown syndrome is when Alzheimer’s patients get agitated at the end of the day. Some say it’s a result of the brain getting tired after a long day, but Scott says researchers need to do more tests on it, and thankfully, Florida scientists are doing so now.
But Scott and Susie didn’t encounter these symptoms at first. Doctors initially diagnosed Susie with stage 2 Alzheimer’s on a seven-point scale. At that stage, Susie led a relatively normal life. But in 2016, the Plakons were in a car accident, which immediately accelerated the progression of Susie’s disease. Overnight, Scott says, she went from stage 2 to stage 5. And that’s when the Alzheimer’s symptoms began to rage.
Yet through all these difficult adjustments, Scott stayed by his wife’s side and lovingly cared for her. I remember the car accident and Susie’s health decline afterward. I watched Scott take care of each need Susie had, and I admired his loyalty. Through it all, Scott says, he held on Romans 8:28, which says, “We know that all things work together for good to those who love God, to those who are called according to His purpose.” Scott sees that verse playing out right now.
“In the legislature, it’s been an amazing amount of things that have happened for the good to advance the cause of Alzheimer’s awareness,” he says. “A lot of the things we’re doing in Florida and around the country with research are some of the things around [the disease], like the Ed and Ethel Moore fund that was set up a few years ago with the Florida legislators—$5 million a year. It funds about 200 research projects.”
Scott has quite a story, and God is using it for good throughout the political and medical arenas. Scott has even found that this cause has served to unite Democrats and Republicans.
“Alzheimer’s is a bipartisan issue,” he says. “If you take red, the color of Republicans, and blue, the color of Democrats, and mix them together, you get purple, the color of Alzheimer’s awareness. So we’ve focused on that theme and have had excellent results in doing that, because [the disease] affects everyone. It doesn’t care who you are.”
I hope you will allow Scott’s words to inspire you not only to pray for those struggling with Alzheimer’s right now but also to support causes in your community that either help care for patients or seek a cure. Even though Scott thinks we are far away from finding a cure for this disease, he believes it will eventually happen as upstanding citizens continue to push forward.
Share this article on your social media to raise awareness for Alzheimer’s and listen to my podcast with Scott below!
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