The Harvey Family And “The Cruelest Disease You’ve Never Heard Of”
- Philip Thibodeau
- 3 days ago
- 5 min read
Updated: 2 days ago
The two weeks starting September 21st have been designated “Paving The Path Forward To End FTD Weeks,” according to a declaration recently signed by Connecticut Governor Ned Lamont.
Behind that declaration lies the story of a local family tested to it limits by what has been called “The cruelest disease you’ve never heard of” – Frontotemporal Dementia, or FTD.
In 2005 Esther and Kevin Harvey were living in Wolcott with their three grown children Meghan, Keith, and Shannon. Kevin was working as a cost-analyst for the State of Connecticut. Life seemed more or less normal.
One day that year Esther’s mother passed away. At the funeral one of her friends expressed a concern: “Kevin seems very distant.” At first Esther thought she was referring to the fact that Kevin sat in the back row. No, the friend replied, he is acting distant. Esther recalled that her husband, who was usually a very caring person, had not come straight home from work after hearing of his mother-in-law’s death. It seems like an indication – but of what?
Unusual behaviors began to pile up. He would promise to add his daughter to the family car insurance plan after she passed her driving test, then fail to do so, repeatedly. Did this mean he was losing his memory? He went to a formal wedding dressed in an outfit from the 1980’s that had holes in it. Was he depressed?
Things came to a head in October of 2006 when he was sent home from work. His behavior had become erratic; he seemed to have an impulse to put inedible things like pieces of paper into his mouth. Soon he was put on administrative leave. Esther was told to have him visit a work-related psychiatrist.
The psychiatrist referred him to a neurologist, who after taking one look at Kevin recommended that he visit a neuropsychologist with expertise in diagnosing rare behavioral disorders. There were some false starts along the way to the correct diagnosis – sleep apnea and male menopause had to be ruled out first. But eventually Dr. Brett Steinberg of Cheshire found the answer.
Kevin, the family learned, had a behavioral variant of Frontotemporal Dementia. While some of its symptoms resemble those of Alzheimer’s, it is not primarily a disorder of the memory. Instead, the loss of neurons in the front half of the brain causes changes to a person’s behavior; their language, emotion, and executive functioning can all undergo abrupt shifts.
Medical professionals are able to diagnose the condition, but cannot yet pinpoint the underlying reason for the neuron loss. All that is known for sure is that genetics plays some role. The upshot, tragically, is that there are few effective treatments for the illness, and no cure.
The best that families can do with a loved one who is suffering from FTD is prevent them from harming themselves or others while treating that person with as much love and dignity as possible.
Basic functions like mobility can become serious problems. One day Kevin went to the supermarket and exited through a different door than the one he had entered. Confused and unable to find his car, he reported it to the police as stolen. The family made the difficult decision to take away his keys. Although Kevin resisted the decision, they felt they had no choice.
Because Kevin could still walk, he liked to go for strolls. Unfortunately he would walk into neighbors’ houses looking for food. Soon that freedom too had to be curtailed.
Through it all, the family kept doing everything they could to keep Kevin active and engaged and to spend time with him, especially on occasions like his birthday:
Kevin spent the last 19 months of his life at the LiveWell facility in Plantsville. He died on January 26, 2012, at the age of 57, a beloved son, husband, father, and grandfather.
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FTD is a relatively rare condition that is believed to affect some 60,000 Americans -about 1 in 6,000. Esther, however, kept hearing about people who were afflicted with the disorder – another Southington resident, or the husband of an old high school friend. Eventually she and her children helped organize the Connecticut Frontotemporal Dementia Foundation.
Now in its 13th year, the foundation has raised and donated over $600,000 to organizations that work on drug discovery and caregiving. Beyond that, it offers a support group for family members of people suffering from FTD. The group meets online on the third Sunday of every month from 6 to 7pm, and is available as needed at other times to offer advice, sympathy, and help with identifying resources.
The foundation also seeks to make more people aware of the disorder. Awareness spiked in a dramatic way recently with the announcement that actor Bruce Willis had been diagnosed with FTD. Esther is careful to note that Willis has the PPA variant of the disorder, which affects the left brain and leads to loss of language and speech, rather than the behavior variant, which Kevin was suffering from.
Southington residents Lewis Schassler and his wife Kathleen are also wrestling with the disorder: Kathleen has PPA and rarely speaks. It was through the FTD support group that Lewis got to know Esther. He later invited her to give a presentation before the town’s Commission for Persons with Disabilities. She did so, and at the end of a 40-minute long speech, the commission, moved by her story and impressed by her knowledge, broke into applause.
Lewis has been working with the Commission to create a list of persons in town who have disabilities. The hope is that this list will prepare first responders to better meet their needs in crisis situations. The survey can be found by clicking here.
Esther credits another support-group member, Steve Batte, with the idea of asking the state of Connecticut to create an FTD-awareness week. She pitched the idea to State Representative Christopher Poulos, who worked to make the Governor’s proclamation a reality. At a ceremony held in the library last Monday, Poulos presented Esther with the signed text of the proclamation:
In her thank-you speech she summed up the story of her family's experience with FTD:
“My family and I are elated by Governor Lamont’s proclamation. FTD is a sick disease and as you all know, Kevin had the behavioral variant which shook my children and me to our core. With every struggle came strength, with every challenge came courage, and when it became time to provide Kevin with a new way of life, then came love – love with the dignity and respect Kevin so rightly deserved.”
This article has been updated to correct Kevin's age at the time of his death and the length of time the foundation has been operative.
