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St. John's Telegram (Newfoundland)
July 11, 2004 Sunday Final Edition
SECTION: Digest; Pg. B1
LENGTH: 1943 words
HEADLINE: Lou Gehrig's disease ravages sufferers
SOURCE: Special to The Telegram
BYLINE: Danette Dooley

Sheila Power's grandmother died of Lou Gehrig's disease. The disease also took Power's mother, Marie O'Grady, six years ago.

O'Grady had yet to reach her 62nd birthday.

Usually fatal within two to five years of diagnosis, there is a hereditary pattern in about five to ten per cent of Lou Gehrig's disease cases. Power cannot help but wonder if she, too, will one day be handed the death sentence. Voluntary testing would confirm whether or not the disease is familial or sporadic, she says. For several reasons, she's decided to take a wait-and-see attitude.

"There's testing that can be done but, at this point, there's no treatment and no cure. So, if you're tested, there's really nothing you can do about it," Power says, adding that she eats healthily, takes vitamin E and exercises on a regular basis.

Amyotrophic lateral sclerosis (ALS) is more commonly known as Lou Gehrig's disease in memory of the great New York Yankees baseball player who died of the illness.

While the progressive neuromuscular disease rapidly destroys the body, killing two to three Canadians every day, ALS does not usually affect the mind.

"Some people have commented that it's like being buried alive because your mind is fully alert but you can't move," Power says.

"And it's devastating to have to watch someone you love deteriorate that quickly."

ALS is characterized by degeneration of nerve cells and pathways in the brain and spinal cord, which leads to progressive paralysis of the muscles and eventually affects breathing and swallowing.

The usual age of onset of ALS is between age 55 and 65. However, people under age 20 have been diagnosed. Power's mother was diagnosed at age 60. She died the following year.

"Mom was living in Ontario and we spoke on the phone a lot. One day I noticed a slur in her words. And then it was two words. And I questioned it. First she thought it was the portable phone. But it only got worse."

During a summer holiday back to Newfoundland to see her children and grandchildren seven years ago, O'Grady's voice worsened.

After returning to Ontario, she went to see a neurologist. The ALS diagnosis didn't come as a total shock. O'Grady knew much more than the average person about the killer disease. She'd cared for and watched her mother die of ALS.

Just months after being diagnosed, O'Grady returned to Newfoundland to spend Christmas with her adult children. By then, ALS had robbed her of her speech. After going back to Ontario, by April her health was failing quickly.

"That's when she decided to move back home," Power says.

"She moved in with me and then, after a couple of weeks, she couldn't even use the walker. That's how quickly it happens. And it all went downhill from there."

While O'Grady's body was shutting down quickly, her instincts as a mother to protect her children never wavered. Though unable to speak, she communicated with her family by writing things down. Feeling she was too much care for her daughter, she told her that she wanted to move into a nursing home.

O'Grady entered St. Patrick's Mercy Home that May. By August she was dead. Six years later, Power still marvels at her mother's strong faith and willingness to accept the cards she'd been dealt.

"I remember coming in the room one day and the social worker was there who was supposed to be giving Mom advice, but Mom was giving her advice," Power says, her eyes brimming with tears.

Strength is something her mother came by early in life, her daughter says.

"When my dad passed away, there were five of us. I was the second youngest. I was 12. So Mom raised all of us on her own."

O'Grady had taken an early retirement from her position as secretary with St. John's Home Care before moving to Ontario. Her daughter has followed in her mother's footsteps, and is now employed as a secretary with Health and Community Services, St. John's Region.

Power is also a board member of the ALS Society of Newfoundland and Labrador, whose head office is in Corner Brook. Working for Health and Community Services is a great resource for her volunteer work, she says.

"I find it helpful to be involved with the society to help people living with ALS. We raise funds for equipment and research, and we offer people equipment like commodes, walkers and wheelchairs and electric and manual beds that we lend out free of charge. And we offer people emotional support and information."

When Sandy Bennett's father, Aidan Kenny, was diagnosed with ALS in January 2003, the doctors told the family his life expectancy was two to five years. They were determined to make the most out of the time Kenny had left.

"Dad was diagnosed on a Friday. We all went up the shore on that Sunday with the grandchildren. We went out sliding and he went out sliding with us," Bennett says of the memories shared from that day until her father's passing, at age 67, five months ago.

Since the time of learning of her father's fatal illness, Bennett and her siblings, with the exception of her brother who lives in British Columbia, spent every weekend at the family home in Fermeuse.

"Once Dad was diagnosed, it was rapid. He lost the use of his legs and his arms. I used to have to push his glasses up on his nose. He had a lot of difficulty speaking. He was diagnosed in January, but he didn't start using his walker until August. He used a cane. But from August to October it was rapid and everything just gave out. He had to use a wheelchair and then he had to have a feeding tube. His biggest fear was always choking."

As weeks turned into months and the disease ravaged her father's body, Bennett looked to Sheila Power of the ALS Society for support. She also turned to Denise Murphy, who runs the Movement Disorder Clinic in Dr. Alan Goodridge's office, when the local neurologist took over her father's care.

Keeping things as normal as possible was important to her family, Bennett says, not only for their father but also for their mother Belle, who lovingly cared for her husband.

"Dad was an electrician and when we went there on the weekends, it was a time for chatting and a time to give Mom a break. We were close anyway, but in that last year, we all grew a lot closer. And it was never morbid," she says.

Being part of the rapid transition from her father's health to death was one of the most difficult things her family has ever had to face.

"I remember going up one day and we brought his bed from upstairs to downstairs. He knew he'd never go upstairs again. And before that, to take him from his big bed where he slept with Mom for 42 years to his hospital bed ..." Bennett says, leaving the sentence unfinished.

Bennett and her family knew the time would come when their father would leave the family home for the last time to be admitted to hospital. It was a time the entire family was dreading.

"Mom said to him, 'Aidan, we have to have an unpleasant discussion but we have to have it. I think you need to go to Palliative Care.' And he looked at her and said, 'Can we go tonight?' "

Bennett sees her father's words as getting permission from his wife of over four decades to finally let go. He died in Palliative Care 12 days later.

In speaking of her father's yearlong battle with ALS, Bennett cannot fathom a more horrific death.

"Dad was a very big man, over six foot tall. And through it all, his mind was sharp as a tack. And to watch him slouched over, with a bib on, trying to eat was devastating. Watching him go across the floor with a walker was horrendous. Now, if someone said to me, 'You could have cancer or ALS,' I'd rather have cancer. I did a lot of research early on because I thought Dad might have it. But I never thought anything could be as horrible."

While it still hurts to remember how ALS destroyed her father's body and claimed his life, Bennett tries to see her glass as half full rather than half empty. The memories made during her father's last year will last for a lifetime, she says.

"Had he gone suddenly, you wouldn't have had that chance to spend the time that you did with him. The time with my family and my dad were a gift."

When Christopher Dennis began noticing a few minor physical limitations, his wife Wanda Gushue was quick to joke, "Oh, you're going to turn 50 soon. Now, you're going to fall apart on me." It would take almost two years before the vice-principal of Deer Lake elementary school was diagnosed with ALS.

"Christopher's symptoms started in his extremities, the tips of his fingers and the tips of his toes. His fingers didn't work well in doing things like putting a nut on a screw. So his fine motor skills started to go," Gushue says of her husband's earliest symptoms.

"Then one day we tried to go for a walk. We got so far and he said, 'I need to go back or I won't make it back," she adds, looking back on what she now sees as "subtle hints" that something wasn't right.

"We were thinking maybe MS (multiple sclerosis) or that there was a tumour resting on some nerves. And of course we would have been happy with any of those," Gushue says of the day in May 2002 that her husband was diagnosed with ALS.

As ALS shifted from a disability to a disease and her husband's body shut down, Gushue says his mind remained sharp. His ability to bring a smile to the faces of anyone who visited never wavered.

"My Christopher never got mad. He accepted the fact that he was going to die and he was just him, right up to the end. He told me he had a good life with no regrets and no fears. He was very secure in everything, and part of my strength came from him," Gushue says.

Gushue took time off work to care for Dennis. The memories they shared will keep her company for a lifetime.

"We had six months to the day home in our house with the four cats. It was just in the house, because November was the last time he got out of the house prior to his ambulance ride down to Palliative Care."

Dennis passed away on April 20 of this year. He spent the last 10 days of his life in Palliative Care at Western Memorial Regional Hospital in Corner Brook.

The youngest of a family of 13, Dennis was well-known in the Cormack/Deer Lake area, having touched many lives during his 25-year teaching career. His legacy lives on, his wife says.

"Christopher believed life's greatest pleasures were in the simple things. And right up to the end, he smiled with the last iota of muscle left in his body. He really was an inspiration to all who knew him."

June was ALS Awareness Month in Canada. The provincial chapter of the ALS Society of Canada is selling tickets on 26 handcrafted woodworking pieces donated to the society by the Woodworkers' Association of North Atlantic Refinery.

Tickets, on sale for $2 each, are available until November by contacting Sheila Power at 709-437-1599 or through the society's toll-free number, 1-888-364-9499.

The annual Walk to D'Feet ALS is a national event which aims to raise funds for research, local support and public awareness. The Walk to D'Feet ALS will take place Sunday, Sept. 26 in Corner Brook, Stephenville, Brownsdale and Labrador City/Wabush.

At the present time, there is no treatment that significantly prolongs life for those suffering with ALS. However, research is investigating ways to reverse the disease and there may eventually be a cure. That hope is never far from the back of Power's mind.

"When I look back on it, ALS has been a part of my family since my grandmother had it. And it continues to be. The memories are always there, and then, of course, we don't know what the future holds for us five kids and our children. So, hopefully, they'll find something soon."