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Carole Paquin – Living with ALS

As her physical abilities diminish, Carole turns to the simpler things

As someone who worked at a school for physically handicapped children, Carole Paquin was familiar with people who did not have full use of their limbs and who needed to find the will to cope.

Carole herself was an active person who liked cycling. When she began limping slightly on her left leg, she was not too alarmed. But the limp became more and more pronounced.

“I consulted an osteopath who recommended that I see my doctor,” says Carole, who lives in Laval, Quebec. “He sent me to a physiotherapist, but he could not say much about my situation. My nephew is a physiotherapist, too, and he referred me to another physiotherapist who arranged for me to have an electromyogram.”

An electromyograph (EMG) is a device for recording the electrical activity in muscle cells. An analysis of the results is made to detect any abnormality in muscle response.

Following the EMG test, Carole saw a neurologist who referred her to The Neuro, recognized as a Canadian centre for ALS research and treatment.

“It was quite a journey going from one specialist to another,” recalls Carole.

At The Neuro in July, 2017, neurologist Dr. Rami Massie confirmed a diagnosis of ALS.

“I knew a little about multiple sclerosis and about degenerative diseases, having worked in a special school for children, but not about ALS,” admits Carole, who was 55 at the time of diagnosis.

Carole was told that she had the sporadic form of the disease, which is the most common form. The other type, familial ALS, is genetically transmitted and affects about one ALS patient in ten.

After Carole’s diagnosis, her symptoms steadily worsened.

“I can’t notice the progression from one day to the next, but looking back, I can see it,” she says. “Now I have to wear leg braces for walking and use a cane. My right foot doesn’t respond, and the other foot is starting to lose response, too. My hands, as well. I can still walk a little. All my muscles are getting weaker and it’s becoming harder to carry out routine moves. But I have a strong will – that’s what’s important.”

Carole can no longer walk upstairs to the second floor of her Laval home so she stays on the ground floor.

“A designer came recently to make a plan for re-arranging the house, so my husband and I have started that process.”

Other common ALS problems have compelled Carole in recent months to adapt her actions. She can chew food only with difficulty, so she eats soft food. Swallowing takes effort. She experiences shortness of breath. She requires help getting into bed and turning over. Nonetheless, she finds that she can still sleep soundly.

Pleasure is found in simple activity.

“I can still go out of the house. My husband helps me go up and down the steps. And I can still ride in a car, which is enjoyable.”

She keeps busy watching TV, doing crossword puzzles and socializing with friends. Although she has some trouble articulating her words, her speech as of May was easy to understand. She particularly regrets that she is no longer able to cook dinners for friends and for her husband and two adult sons.

Every two months, she goes to see Dr. Massie at The Neuro for a checkup. Under his guidance, she takes a medication called Quinidex, which is generally prescribed to treat an irregular heartbeat, but in the case of ALS patients is used to control the pseudobulbar effect, a condition that causes patients to laugh or cry inappropriately. The drug is sold under the brand name of Nudexta in the United States but in Canada is available only through a special compounding pharmacy.

“There is a pharmacy in Montreal that prepares Quinidex for all of our ALS patients in Quebec,” says Dr. Massie, who is highly active in conducting clinical trials involving ALS cases.

“I’m holding on as best as I can,” says Carole. “Sure, there are times when I feel down, but in general, my spirits are good.”

The Montreal Neurological Institute & Hospital is a McGill University research and teaching institute; delivering the highest quality of care to patients, as part of the Neuroscience Mission of the McGill University Health Centre. The Neuro is proud to be a Killam Institution, supported by the Killam Trusts.