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Diane McAllister of New Brunswick wants to let people know about ALS
Diane McAllister of New Brunswick wants to let people know about ALS
After Diane McAllister of Minto, New Brunswick, started tripping and falling inexplicably she did some research and made a list of what she thought might be causing the problem.
ALS - Lou Gehrig's disease - was at the very bottom of that list, her absolute worst-case scenario.
Her husband Roy McAllister remembers his wife's phone call after the diagnosis by the neurologist. He will never forget his wife's few short words: "It's the worst."
Two short years ago, 44-year-old Diane McAllister could run after her two-year-old daughter, laughing and playing in their tree-lined backyard.
Today she is in a wheelchair, and is slowly losing control over her hands and legs. Her once-clear speech is slurred and slow and small sips of water can make her choke.
"I am ALS," she said, trying to enunciate each word.
But McAllister is much more than the disease that is taking away her independence.
She is a loving wife to Roy, a mother to four-year-old Celeste, and a crusader for awareness of the illness.
"From that wheelchair she keeps several people hopping," says Roy McAllister of his wife's persistence in working towards awareness.
As McAllister talks about her family, a smile lights up her face and the uncomfortable and frustrating elements of the disease melt away.
But after a few moments, that bright smile turns into furious blinking as McAllister tries to hold back her emotion at the thought of the one overriding factor her family will inevitably have to deal with - ALS is going to take her life, probably within three years.
"I think, for me, the worst is knowing I'm going to die and lose all of my abilities before that," she said. "I have to live through the loss."
Every time she gets used to the loss of a movement or ability, it seems there is another loss to deal with. First, she lost most of her ability to walk and now can only take small steps with a walker and someone helping. Functions like holding a pen and typing on a keypad were lost in quick succession.
McAllister visited the palliative care unit for a week in January to prepare nurses and staff for her future admission.
"A little part of me dies every day with her," said Roy McAllister. "There have been some very emotional times. I've cried a lot. Sometimes I hit a wall. I get so tired seeing her struggle."
While the couple deals with ALS they also have to explain those changes and her eventual death to their four year old.
She has books about a little boy dealing with his grandfather's ALS. In the book the grandfather passes away, but it's difficult to know whether Celeste - a very bright child - understands what's happening.
"Sometimes she says, 'Mommy, I wish you didn't have ALS so you could come outside with me,'" said McAllister.
"I wish I could see her grow up," McAllister said and turned her glance to Roy. "I wish we could grow old together. He's an amazing man. He takes care of me very well."
The pair said they want their story to be known for several reasons.
There is not as much awareness of ALS - or amyotrophic lateral sclerosis - as there is about other neuromuscular diseases that belong to the same family, diseases such as Parkinson's Disease and Muscular Sclerosis. ALS shares some characteristics with those diseases but it causes deterioration and death much, much faster.
Dr. Beth McCann, a speech and language specialist at the Stan Cassidy Rehabilitation Centre works with McAllister and other ALS patients. She is working with a Fredericton ALS awareness group that is trying to start an ALS chapter in the city.
"You say ALS and people say, 'What's that’? ALS is as common a disease as MS but because people die so quickly and their caregivers are so burnt out, they really don't have a lot of energy to give. It's kind of an orphaned cause."
There is no cure for ALS and death usually occurs within five years after diagnosis. Rehabilitation therapists help a person with ALS deal with fatigue, pain management, nutrition, swallowing difficulties, communication challenges and the emotional consequences of this life-shattering disease.
McCann would like to see more money raised for much-needed equipment that isn't covered or subsidized by government.
"We don't want them to be dying and have to go out and spend $7,000 and $8,000," she said.
Diane and Roy McAllister work closely with McCann. She does so because she wants professionals like doctors and nurses to better understand, diagnosis, treatment and care of ALS patients.
Education is critical to the future. McAllister worries her daughter could have inherited a genetic disposition to the disease.
McAllister said the Stan Cassidy Centre is a wonderful resource that patients need to get to early.
"If it wasn't for the center, I don't know where I would be," she said. "They have given me hope where there was none."
Diane lost her battle with ALS in 2004
"The rule of accuracy: When working toward the solution of a problem it always helps if you know the answer." John Peer
MGM
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