In sickness and in health, those words ring true to Linda and John Gregoire. On December 17, 2007, John was diagnosed with Amyotrophic Lateral Sclerosis (ALS or Lou Gehrig’s Disease).
“Life has had to change,” said Linda. The house is like most houses in Windham, except for the lift, special van, two walkers, a Hoyer lift and a new bed. “The house has changed, but John hasn’t.”
ALS is a disease of the body where nerves waste away leaving muscles without a way to move, but the brain stays alert and active. It took doctors a long time to diagnose John. They thought he had had a mini-stroke, then the doctor said it was neurological, or a brain tumor, but finally they gave John the diagnosis of bulbar onset ALS, meaning that the first thing it effects is the speech.
John now communicates through the use of an iPad, which can talk for him and can project the words he wants to say on the television screen.
John, Linda and their younger son Matthew, 17, travelled to Washington D.C. from May 7 to 11, to speak to representatives from Maine about ALS. Their older son, Nicholas is 26 and married. The trip was especially timely because May is ALS awareness month. Others, almost 500 people, were in the same hotel as the Gregoire’s all there to show support for ALS. Some were friends of people with ALS, who had lost their PALS (people with ALS). John represented the patient.
“Our representatives were so gracious. No matter how you vote. They were so kind to us,” Linda said. “They needed to put a face and a story to ALS. All we were asking for is ‘don’t cut the funding’,” she said.
"For the 12 years before my diagnosis, I successfully turned a small call center start up into a sales and marketing consulting firm. A key component of the business plan was turning a business, based on minimum wage work, into a business with greater growth potential and which would provide significantly higher wage jobs for Mainers,” John said.
“My role was to manage and train staff and to act as, chief evangelist, for the firm, finding, closing and setting up projects. The job required me to travel frequently to our key markets of Chicago, Philadelphia, New York City and Boston. The job also required I do a lot of talking to large and small groups.”
“Ironically, my first symptoms showed up in my speech. I would slur my words when I became fatigued. It first became an issue at dinner with a client in Chicago. We had just been seated and were waiting. I spoke a sentence and really slurred the words. Two people, sitting across from each other, exchanged a look that told me they thought I had been drinking already,” John said.
He retired in 2009 after he began falling and his speech became a larger issue.
Going to Capitol Hill was an important step for the Gregoire family. The more information John can give people, the closer they can come to finding a cure, he said. At this time there is no cure for ALS.
When in Washington, John added his information to an ALS registry. Through the registry researchers look for “hot spots” and trauma types that might have caused the onset of ALS.
“They want to fund a bio repository to collect tissue samples from patients to find common threads,” John said.
“As Linda mentioned, the cruelest irony about ALS is that, as the body wastes away, the mind stays sharp and intact. It's the same disease world famous physicist, Stephen Hawking has. Hawking is only able to move one muscle in his cheek and he uses that to control a computer to write his books and lectures. OJ Brigance, former NFL player, whose last team was the Patriots, gave the keynote address at a dinner the night before we went to The Hill. OJ can only smile and move his eyes,” John said.
“I was an avid fly fisherman and golfer, coached youth soccer and little league, but that's all gone now, obviously. It's important to note that, ALS is a disease that impacts the entire family, however. Not just the individual. An ironic twist of the disease is, if you are what the doctors refer to as a, slow progressor, as I am, the financial pressures only increase over time. The compassionate allowance program for SSDI was a God send to us, but it doesn't come close to replacing the income I was earning when I owned my own business,” John said.
“It’s hard not to have a heart for someone who coaches soccer, work and then everything stops,” said Linda.
ALS patients, on average, live two to five years after diagnosis. It’s been five and a half years for John.
Treatment is hit or miss for Linda and John. There is a medication that can offer an additional three months of life, perhaps, but it made John very ill and cost $1,000 a month. According to Linda, they have done a lot of research and have tweaked John’s diet and have given him supplements to slow the progress of the disease.
“Doctors said, ‘we don’t know what you’re doing, but just keep doing it,’” Linda said. John receives treatment at the Massachusetts General Hospital ALS clinic. They only see ALS patients and it’s a multi-discipline clinic where the specialists and therapists come to the patient instead of the other way around. The appointment lasts almost three hours and John goes every three to six months.
The routine at home is filled with daily activities that can take large amounts of time. Linda takes care of John, getting him up, dressed and ready for the day. It takes 45 minutes to floss and brush his teeth and 20 minutes to walk 20 feet, she said. “I do everything for him.”
“There’s a fine balance between being active to maintain muscle strength and conserving energy,” John said.
Most ALS patients get to a point where eating burns more calories than they consume because eating and chewing is hard for them. John lives on peanut butter sandwiches, pasta and burritos. High fat and high carbohydrate stuff, he said.
John tries to stay socially connected through Facebook. He has a personal page, a TeamIsaiah365 and a TeamIsaiahHope page. The Team Isaiah page is the page used for promoting his ALS walk team under that name. Every year on the first Saturday in September, the family walks Back Bay raising money for ALS research. The team wears a t-shirt with a blue square showing a stick man standing up from a wheelchair, which was designed by John.
“Every year it grows and grows,” Linda said. The team name comes from the Bible verse “The lame will leap like a deer, and those who cannot speak will sing for joy!” - Isaiah 35:6
The hope page is a place where people post pictures with “Hope JG” in different locations and with different materials. John is proud of his 105 likes that he has on that page.
John also creates videos to raise awareness and money for the cause. The first one he made is “An ALS story in three minutes.” It can be found here: http://youtu.be/6hnNX4IoYhM.
“ALS is humbling. ALS is cruel,” John said, but he has hope and will continue to work toward his goal of finding a cure.
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