ALS: the urgency of realizing your dreams before being slowed down by the disease

A 55-year-old man suffering from amyotrophic lateral sclerosis will leave for three weeks in the Arizona desert to realize his dream of observing and photographing the local fauna, before the disease prevents him from doing so.

• Read also: Sherbrooke activist dies of ALS

In November 2020, doubt settled in the mind of Steeve Baker. For no apparent reason, the biology teacher at Cégep de Sainte-Foy began to experience speech difficulties during his classes, which he initially attributed to fatigue.

But the symptom worsened a few weeks later and his left arm was no longer responding as before. The diagnosis finally fell in April 2021.

The 55-year-old suffers from amyotrophic lateral sclerosis (ALS), an incurable neuromuscular disease that causes progressive paralysis of the body. Death usually occurs two to five years after diagnosis.

“For several months, I saw my body deteriorating little by little. I hoped to have Lyme disease, cancer or even multiple sclerosis, this diagnosis scared me so much, ”says Steve Baker.

An old dusted list

But once the shock of the news cashed, Mr. Baker saw himself “animated by an urgency to live beautiful moments”.

A lover of biology and photography, he had drawn up a list of dream places to visit to observe local biodiversity, with his friend Éric Le Bel, while they were at university.

After letting this list gather dust for several years, the two men decided it was time to look into it, before the disease took over.

“We thought it was now or never to take advantage of it,” said Mr. Le Bel, who accompanied his friend to Grand Manan Island, New Brunswick, to photograph more than 300 species. of birds last summer.

At the top of this list is the Arizona desert, where the duo will be heading for the next few days for a three-week period. They will make excursions to five strategic sites to take pictures.

Show ingenuity

But this journey promises to be particularly difficult, because of Mr. Baker’s ALS which is gaining ground. He must now move around using a walker, he no longer has strength in his arms and his swallowing is made difficult.

“We will have to be ingenious and deal with that. Lucky that I have a big-hearted assistant to help me!” laughs the biology teacher.

The pair will be posting the best shots of their trip on their “Spring in the Desert – Arizona 2022” Facebook page.

If all goes well, the duo then plans to go to Point Pelee, a national park in southern Ontario known for its variety of birds, in the coming months.

What is ALS?

◆ A neuromuscular disease that progressively causes paralysis of the body.

◆ Also called “Lou Gehrig’s disease”in memory of the baseball player who died.

◆ Strike 2 in 100,000 people.

2500 at 3000 people have it in Canada.

◆ No treatment currently exists.

◆ Usually triggers between age 40 years and 75 years old.

◆ Death occurs of them at five years after diagnosis.

◆ It is the most fatal neurological disease in the country.

Source: Amyotrophic Lateral Sclerosis Society of Quebec

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