“Hard- worker, Montana boy, hunter, fisherman, Army,” said Krista Payzant, describing her husband Justin. Justin was a U.S. Army veteran, a loving father, a son, a husband, and an adventurous person. Right out of high school, Justin joined the US Army.
“He wanted to serve his country, but he also wanted to be a husband and a father and close to family. That was most important to him, a big pillar of who he was,” Krista said.
While serving, Justin decided to take his service to his country overseas and deploy. “He volunteered for deployment for a unit that was not his in Afghanistan for a year. He was gone from September 2011 to September 2012, and that kind of shows who he is. It was a newer unit, not where his home really was, but he wanted to go and be over there,” Krista said.
In 2016 Krista and Justin welcomed their son, and in 2017 Krista noted that Justin's personality seemed different.
“What I started noticing probably before most other people because I was living with him day to day was some personality changes, things that weren’t very common for him. A big one for us was apathy, he just kind of lost interest in some things, he would say that he had interest but then he wouldn’t put as much effort into hunting, fishing, or spending a lot of quality family time as he and I made time for date nights,” Krista said.
In the spring of 2018, Krista and other family members also started noticing that Justin's speech seemed to change along with the personality changes.
“I think living with it every day and how slowly everything kind of progressed I wasn’t seeing it right away; at one point I didn’t know if I know this man that I had married. But then I started seeing more neurological symptoms like he would be whispering, or using not quite the right word in conversation or he would tell me that he didn’t understand what I was saying, I had to use very specific words with him sometimes,” Krista said.
After going to several other doctors and psychiatrists Justin was diagnosed with depression, but the medication that he was put on wasn’t helping, as a matter of fact, the medications were almost making Justin worse. So he had an emergency CT scan, which then led to an MRI from a neurologist which eventually led to Justin and Krista heading to Minnesota to the Mayo Clinic. After several tests and scans, Justin and Krista received a diagnosis.
“By the end of the week, we met with his team, and they told us that they were pretty confident that he has this frontotemporal dementia. Which was kind of a new term because before I had met Justin and I heard the term dementia, I thought of Alzheimer's, forgetfulness, old people, that sort of thing. And it's not. There are so many different forms of it and frontotemporal dementia is actually the first most common in people under 60 years old,” Krista said.
Nine months is how long it took for a diagnosis, and it was Justin’s age that made it more devastating.
"It was the week of his 29th birthday he was diagnosed. And typical onset of symptoms is between 40 and 65 so he was quite early. And we really don’t know why,” Krista said.
Frontotemporal dementia is also commonly diagnosed as depression, bipolar, or even anxiety, which adds to an already challenging diagnosis. And with this diagnosis came more devastating news.
“Frontotemporal dementia is always fatal, there is no treatment, any type of medication that they give is to manage behavior symptoms,” Krista said.
The medications that are given to someone diagnosed with frontotemporal dementia are to help with behavior, sleep, and eating, but with no cure, there is little that doctors and families can do to save their loved ones.
"FTD is such a thief because it strips the person of who they are slowly and it's really painful to watch too. It’s really hard for the person... it's hard to see someone that you love know something is wrong with them and not know the full extent,” Krista said.
The average life expectancy for frontotemporal dementia is between eight and 13 years.
Justin passed away in March of 2022 from FTD at the age of 33.
FTD is unique to each patient, each symptom is different for each patient which is why it is hard to diagnose those who are living with FTD. For Justin, the first symptoms of change were speech and personality changes. Patients with FTD can also become violent, but that wasn’t a symptom that Justin experienced. Justin was able to stay at home during his fight with FTD.
“As he progressed his physical ability got more and more limited. So his particular form because there are so many different types and subtypes of this disease, so many genetic factors and different sorts, so Justin had some Parkinson's type features, which affected his body and movement, he would get rigid and tremors, he slowly progressed into having in a wheelchair and then towards the end days he was bed bound,” Krista said.
While Justin was declining, the pieces of Justin were slowly starting to fade, not only was Krista walking through this journey, but so was Justin's family.
“We all lost pieces of him together and I think it takes a piece of us too. FTD doesn't just affect the person, but the whole family. Everybody that loves him and everybody that knew him feels it,” Krista said.
Before Justin was diagnosed with FTD, Krista had never heard of the brain disease. Now she is raising awareness about FTD for education and more funding for research for trials. But research and trying to find a cure is also at the front of Krista’s mind for another reason.
"I feel especially passionate about that because Justin's form of dementia does carry a genetic component to it which means that our son had a 50/50 chance of developing it himself as he gets older, so that’s scary to think about and so it's really important that people know that it exists,” Krista said.
Krista explained that she wants people to become more aware of different forms of dementia.
“Just for the kindness factors of people that look different. He didn’t always look sick he just looked a little odd sometimes, he behaved a little odd and you never really know what is going on in someone's life... we have a large group of dementia people who still deserve kindness and respect and dignity then also we need a cure because all forms of dementia are fatal and there's not treatment for them right now. It’s often called the longest goodbye, which is very true, every day you lose them a little bit more. It's painful,” Krista said.
The memories of Justin for Krista and her son remain as she fills through the pages of pictures and memories of their life together and the life that was stolen from FTD.
Click here to learn more about the disease.
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