Rare illness with strange symptoms strikes Ď63 Destrehan High graduate
Friends rally behind family with huge
Michelle Stuckey - Mar 01, 2012
The family of a Norco native stricken with a rare fatal illness now has a leg to stand on thanks to a recent local fundraiser.
Ken Hymel graduated from Destrehan High School, where he was on the football team, in 1963. He went on to graduate from Louisiana State University in 1968 and become an electrical engineer with Fluor Corporation. At 60, he met the love of his life and married his wife, Judy.
Ken and Judy had only been married for six months when he was diagnosed with frontotemporal dementia, or FTD. Six years lateras, he is living in a child-like state. He doesnít recognize anyone and canít speak. Doctors say he doesnít have much longer left to live.
The fatal illness came on suddenly. It is incurable, there is no treatment and it is unpreventable.
"I knew something was wrong," Judy said. "Itís different from Alzheimerís because usually Alzheimerís starts with memory problems. With FTD the first symptoms are behavioral changes, but itís so insidious."
Judy said she first noticed something was wrong when Ken began shopping compulsively. She also noticed a lack of hygiene and a gradual waning of her new husbandís comprehension skills.
"His behavior was so erratic that I really was afraid Iíd made a mistake (in marrying him)," Judy said.
Just before his diagnosis, Ken was working in New Orleans with FEMA after Hurricane Katrina.
On Jan. 2, 2006, Judy received a message from Ken that concerned her.
"He sounded slurred, almost like he was drunk but I had never known him to get drunk," Judy said. "I had a neurologist listen to the message; she suggested we get an MRI done."
Just six years later, Ken is mentally and emotionally gone.
"The first two years were not that bad – we fought the disease as hard as anybody could, we had the best doctors," Judy said. "But once you get this disease, itís a death sentence."
Once diagnosed, people with FTD usually have a lifespan of 2-8 years, according to Judy. Three years after the diagnosis, Ken completely lost his ability to speak or write. At his sixth year after diagnosis, Ken is now beginning to suffer from heart failure. Judy said the most devastating point in the illness was when he began to lose his comprehension.
"He really was so bright," Judy said. "He hasnít recognized me for a year."
Ken must now be cared for 24-7, meaning that Judy, another family member or a Hospice worker must watch him at all times. If left alone, Ken is a flight risk and he also is at risk due to his insatiable appetite.
"Heíll eat eight bananas if youíre not looking, peel and all, and youíve got to give him cookies to get the bananas away from him," said Helen Banquer, Kenís sister. She said he is also at risk for eating non-food items because he doesnít understand what is and what is not meant to be eaten.
Judy chose to close her business and devote her life to taking care of her relatively new husband.
"We were both very successful – our plan was to retire at 70, but this disease has devastated us financially and I chose to close my business and take care of him," she said.
Ken takes 18 pills each day. He has lost continence and must sometimes be bathed as many as three times each day. But Judy said he seems happy and will sometimes sit in his chair and laugh.
"Iím very fortunate in that he is a very sweet, kind man," Judy said. "Whatever their natural manner is becomes more intense when theyíre like thisÖA lot of these people are belligerent, they will attack you or, if they can talk, curse you out.
"(Ken) has always maintained a calm, nice demeanor. Heís a child."
Judy said that when diagnosed, Ken never once asked ĎWhy me?í
"He wanted to live his life one day at a time, and thatís what weíve done," she said.
Now that the end is drawing near, Judy is optimistic about her life.
"For me, this has been a transformative gift," she said. "I donít consider myself the same person as I was prior to this, I consider myself a lot better.
"It really deepened my faith and I have to believe that God chose me to go on this journey with him because He knew I was very strong."
At a jambalaya fundraiser in St. Charles Parish last month, many of Kenís high school friends united to help defray medical costs for the family.
"It was really touching – all of his high school buddies came together for this," Banquer said. "Itís obvious that people did not forget him. They definitely remember him, cared about him and respected him."
Judy said that the funds raised at the cookout have given her a little room to breathe.
"Thanks to that fundraiser, I now have a safety net to fall back on which I didnít have before," Judy said.
Those wishing to donate to the family to help defray the cost of Kenís medical expenses can contact Banquer at firstname.lastname@example.org.
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