‘You have to learn to live with it’

Wife of firefighter receives special recognition at MS Walk

For Diane Kilroy, the “Most Inspirational Walker” for the Jersey City MS walk being held on April 15, supporting her husband Kevin through his experience with Multiple Sclerosis did not seem like anything extraordinary but rather a regular part of her life.
“What I do is so normal to us,” said Diane, 50. “I didn’t see it as anything out of the ordinary.” She wasn’t aware Kevin, 52, had submitted an essay about her for the honor, and once she found out, she didn’t expect to be chosen.
But for Kevin, her support and dedication throughout the years has been invaluable and helped him get through the most difficult times since his diagnosis.

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“She is the driving force.” – Kevin Kilroy
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“She is the driving force,” said Kevin, who once knew little about the disease and initially thought he was going to die when he was first diagnosed with MS four years ago. Diane was by his side when he got diagnosed and he said, “It was her confidence that everything was going to be okay [and] her reassurances,” that gave him strength.

Support through the early stages

Kevin and Diane have been married 27 years. They met in Jersey City through Kevin’s friend and brother-in-law Billy when he needed a ride to see Diane’s sister Tricia. Kevin asked Billy if Tricia had a twin and it turned out to be Diane. After the couple married they moved to Secaucus to start a family. Diane has worked as a police dispatcher for Secaucus for 26 years. The couple has two children, Matt, 26, who is a police officer in Jersey City, and recent college graduate Eric, 23.
Kevin began to show signs of MS eight years ago but he wasn’t diagnosed until 2008.
“He called me up one day and said he lost his vision,” said Diane. That it was like looking through a frosted glass.” Diane said that MS affects your vision, but that at the time doctors discovered Kevin had a dissected blood clot in his carotid artery located in his neck.
‘That was frightening,” said Diane who worried the blocked carotid artery could lead to a stroke. Kevin was due to have angioplasty but the clot cleared up on its own.
She said that after the vision issue she noticed that Kevin’s hands were often shaking.
“A year later, his fingers were going numb,” said Diane, which is another symptom of MS, however, the doctors then did not detect he had the disease. Instead they discovered he had two herniated disks. Kevin underwent an operation to fuse the discs together but two days before he was to return to work the numbness increased.
“He couldn’t go up the stairs,” said Diane. After an MRI, she said that doctors discovered the lesions, which are areas of tissue that have been damaged by injury or disease, often in parts of the central nervous system.

Learning to adjust to a new reality

“You have to learn to live with it,” said Kevin. “I could wake up tomorrow morning and have to use a wheelchair for the rest of my life.”
In the United States today, there are approximately 400,000 people with multiple sclerosis (MS) according to the National Multiple Sclerosis Society. Worldwide this chronic, often disabling disease, affects 2.1 million people. MS attacks the central nervous system, which is made up of the brain, spinal cord, and optic nerves and varies in severity, progress and symptoms from one person to another. Symptoms may be mild, such as numbness in the limbs, or severe, such as paralysis or loss of vision. There is no cure for MS but there are treatments and rehabilitation plans to manage the symptoms.
“We both believe that the medication is helping him,” said Diane.
Since his diagnosis Kevin has had only one exacerbation of his symptoms that occurred last September when he wasn’t walking correctly.
One discovery that Diane views as a positive in retrospect is that doctors discovered that Kevin had kidney cancer after he was diagnosed. She said that the tumor in his kidney was removed, and never had the chance to spread. Kevin also never had to undergo radiation.
“My hope for Kevin even if he ends up to the point that he is in a wheelchair is that he can still function and that he can be an active member of society.”

Encouraging activity

Kevin said that the biggest adjustment for him as a result of having MS is the inactivity. He was a chef and a union carpenter but is now on disability because of the weakness in his legs and arms.
“I was also always active [and] don’t like to ask other people to do things for me,” said Kevin. “[Diane] forces me to get up and get involved and do things even when I don’t feel like doing them.”
Diane said that playing a support role as a volunteer firefighter for the Washington Hook and Ladder volunteer fire department also keeps Kevin active.
“The fire department is like a blessing,” said Diane. “He helps with whatever they need.”

Walking to raise awareness and funds

On April 15, Diane, Kevin, their dog Shelby, and their Walk MS team “Firefighters for MS” that includes family and friends will walk at Liberty State Park in Jersey City as part of the 2012 Walk MS event. The event is one of 12 Walk MS sites that the NJ Metro Chapter of the National MS Society will run that day. The team has walked the past four years and includes 23 people and each year has a goal of raising $5,000.
As “Most Inspirational Walker,” Diane will cut the ribbon to kick off the walk.
The event will see over 10,000 participants with a goal of raising more than $2 million in an effort to create MS awareness, raise funds to support critical programs and services and help fund a cure.

Finding a cure

“I would love for them to be able to find a cure,” said Kevin. Although he is uncertain about whether that will become a reality he is hopeful that some form of prevention will be discovered to help others in the future.
Kevin has been actively involved with the MS Society and has dedicated his efforts to raising awareness and funds for the disease. He has helped his cousin who was recently diagnosed with MS by sharing his knowledge and experience with the disease. He said not enough information gets out to the public about the disease and that many misperceptions exist.
“Maybe if we can educate a few people by what we are doing, it is worth it,” said Diane.
“I hope the walk shows them that they are not alone.”
For more information or to make a contribution, go to: www.firefighters4ms.org

Adriana Rambay Fernández may be reached at afernandez@hudsonreporter.com.

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