Tuesday, February 18, 2014

East Haven ALS sufferer, veteran won’t stop fighting

(Mara Lavitt ó New Haven Register) Robert Giammatti and his wife, Cindy, use a letter board for communication.

By Evan Lips, New Haven Register
Posted: |

(Mara Lavitt ó New Haven Register) Bob Giammatti, who has amyotrophic lateral sclerosis, also known as or ALS, or Lou Gehrig's disease, is helped by wife Cindy and CNA Cindi Grazio of West Haven tend to him.

EAST HAVEN >> Robert Giammatti doesn’t know where it came from, this disease that slowly robbed him of his ability to walk, talk, drink or eat.

He spends his days confined to a bed. The only way he can communicate with his wife, Cindy, is by blinking his eyes, where one means “Yes.”

Giammatti has amyotrophic lateral sclerosis, the scientific name for the affliction that cut down baseball legend Lou Gehrig when the New York Yankees first baseman was just a few weeks shy of his 38th birthday.

Giammatti is 68. There’s a framed photo of Gehrig that hangs in the couple’s bedroom.

Giammatti is also a veteran of the military. The U.S. Department of Veterans Affairs has determined his condition is connected to his service, even though he never set foot in Vietnam.

“They (VA) never said what the connection is, but they did say it was connected,” Cindy Giammatti said Tuesday, during an interview in the family’s Farm Meadow Road home. “It’s almost as if they know something.”

A week earlier, Cindy Giammatti appeared before the Town Council to tell her husband’s story, to help convince members to pass an ordinance giving 100 percent disabled veterans like her husband a complete property tax exemption. There were times at the meeting when she paused to compose herself.

Council members voted unanimously to pass the ordinance, an option Connecticut cities and towns have under a new state statute. East Haven joins West Haven, Marlborough, Avon and East Hampton in enacting the ordinance, according to Town Attorney Joseph Zullo.

Mayor Joseph Maturo Jr., in a Jan. 30 memo, urged council members to pass it.

“I believe it is imperative that we honor those sacrifices and I believe that this ordinance, as allowed by state law, is the proper way to do so,” he said in the memo.

Cindy Giammatti left the meeting with a smile.

“It’s like she’s always winning these little battles,” said Cindi Grazio, a West Haven nurse who helps care for Giammatti.

Grazio, adjusting Giammatti’s ventilator, was referring to the time in October when Cindy Giammatti completed a mandatory ventilator training course in just two weeks.

“When he got the ventilator, we were at a hospital in New Britain,” Cindy Giammatti said. “I was warned, ‘You may never get your husband home.’

“I said, ‘First of all, you’ve never met me — he’s coming home.’”

First, she had to complete ventilator training. She was told the average trainee takes five months to finish the course, and even after that, many fail the test.

“The hospital told me that we set a record,” she said. “The couldn’t believe how fast we did it.”

For her, it’s a race against the clock. She does not know how much time she’ll have left with her husband.

“People ask me all the time about a timetable,” she said. “He may go three or four years or he may come down with cancer or pneumonia like anyone else.”

The Giammattis have been together 10 years. They fell in love following marriages that ended in divorce. Cindy Giammatti is 46. At the time, Giammatti was working as a custodian at Deer Run Elementary School, where Cindy’s children from her previous marriage went to school.

“The hard thing about this disease, and other people will say this, (is) we had a future planned,” she said.

From the bed behind her, Giammatti blinks once.

There’s the cabin in New Hampshire’s White Mountains that Giammatti built by hand. He was going to retire, and as soon as the couple’s children were up and out of the house, they were going to live up there.

“This cut that right down for both of us,” she said.

The hope right now, the one thing Cindy Giammatti said helps her husband look forward to another day, is that someday there will be a cure. But the rarity of ALS is also a hindrance.

“The other day on ‘Good Morning America’ everyone was wearing red for heart disease awareness,” she said. “Then in October everything is pink for breast cancer.

“There’s nothing for ALS.”
Behind her, Giammatti blinks once.

Cindy Giammatti said raising awareness is the biggest reason she and her husband allowed an interview at their home. There’s only one drug available that’s specifically aimed at slowing down the onset of ALS: Riluzole. It has provedto lengthen survival by several months, but does not reverse motor nerve damage.

Cindy Giammatti said her husband first noticed something was wrong after he backed a maintenance snowplow into a light post during winter 2010. His head jerked back, jostling his neck. Doctors discovered his left arm had become weak. Giammatti said they attributed the weakness to whiplash sustained during the accident, but physical therapy did nothing to improve his strength.

“At the same time I noticed his speech was becoming a little garbled, almost as if he had a little Novocaine in his mouth,” she recalled.

“I think he knew all along that there was something really wrong, that this was something serious, but he didn’t want to tell me, didn’t want to upset me.”

Behind her, Giammatti blinks once.

Cindy Giammatti almost began to cry when she was asked to remember some of the last words her husband said before ALS robbed him of his ability to speak.

“It’s funny you should ask that,” she said. “One of the hardest things I have trouble with is not hearing his voice.

“I cannot remember what his voice sounds like.”

But she knows he is listening.

When more than blinking is need to communicate, Cindy Giammatti pulls out a poster board outfitted with an alphabet grid. She’ll walk her husband through a series of yes or no questions about a specific letter.

“What do you think of your wife, Bob?” asks Grazio.

An interaction that takes other couples a split-second occupies a few minutes for the Giammattis.

The breaking point for Cindy Giammatti, the moment the cruelty of her husband’s diagnosis finally set in, was in late 2011. She recalled a visit to a physical therapist in New Britain. Her husband was still walking and talking.

“But the therapist put a pegboard and a set of golf tees in front of him,” Giammatti said. “He had to pick up the tees and put them in the holes.

“When I saw him struggling to pick up the tee, and he couldn’t, it hit me so hard.”

He lost the use of his hands shortly thereafter, followed by the use of his left arm. Speech then slowly went away.

“But it was like when you have a baby that begins to speak at 2 or 3, and only a parent can understand,” Giammatti said.

He finally relented and agreed to be fed via a tube after a noticeable loss of weight. Giammatti said one of her husband’s favorite treats had been Dairy Queen’s Strawberry Blizzard.

Grazio laughed when she recalled Giammatti’s reluctance to go with a feeding tube.

“He’s Italian,” she said. “The man loves his food.”

About eight months ago, Giammatti all his motor skills. The VA, Cindy Giammatti said, has helped her family immensely. There were grants to renovate the house so her husband could receive care at home. The property tax exemption will certainly help, she added.

But she’s still wondering how her husband’s ordeal can be connected to his military service, when nobody will tell her the connection.

“They’re taking the responsibility for his ALS,” she said. “But what does it mean?”

Last spring the ALS Association released a report titled ALS in the Military: Unexpected Consequences of Military Service. The report outlines several studies, chief among them a Harvard University project conducted between 2005 and 2009, that determined all military veterans, “regardless of branch or era of service are nearly twice as likely to develop ALS.”

On Nov. 4, 2009, the VA officially updated its regulations to recognize a “presumption of service connection for ALS for any veteran who develops the disease at any time after separation from service.”

The organization is still lobbying Congress to fund research that will answer the question of why military veterans are more prone to the disease.

Meanwhile, the Giammattis are still waiting and praying a cure will arrive in time. Yet as they wait, coping with Giammatti’s affliction the best way they know how, their own love story is still being written.

Cindy Giammatti spends her nights sleeping in a twin bed a few feet away from her husband’s master bed. She will jerk awake at night if she hears her husband’s ventilator change pace, meaning he, too, is awake. He cannot call out to her for help, so Giammatti has used her sense of sound to determine when he needs help.

“It’s been like this for seven or eight months,” she said. “And although it’s tough, there’s no place I’d rather be than by his side.”

Behind her, Bob Giammatti blinks once.

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