learning about als
but his first instinct was to comfort his wife, who was very upset. he says neither of them knew much about the disease, other than that patients lose control of their limbs. they would soon learn it was much worse. als is a motor neuron disease that causes progressive paralysis when the brain is no longer able to communicate with the body’s muscles, according to the
als society of canada
. as the muscles break down, patients eventually lose the ability to walk, talk, eat, swallow and breathe.
in about 80 per cent of cases, als is fatal within two to five years of diagnosis, although many people live decades longer. the exact cause is not fully known, and there is no cure. the main type of the disease is called sporadic, which targets people of any gender, ethnicity or age, although it typically strikes people between the ages of 40 and 60. (mary jo has the sporadic form.) the other form is familial, meaning it is inherited, and affects only 10 to 15 per cent of cases.
a few weeks after the diagnosis, the couple’s first stop was at the als clinic at calgary’s south health campus, where they met with specialists who prepared them for what was to come. they also learned about resources, such as the availability of a physiotherapist, occupational therapist, respirologist, and an equipment loan program, which they would soon avail themselves of. as the disease has progressed, mary jo’s legs have further weakened, to the point where she at first used walking sticks, then a walker, and now a motorized wheelchair on loan for use inside, and another that michael purchased for use outside.
life as a caregiver for als
as her primary caregiver, michael’s day is full. in the morning, he moves her out of the hospital bed they’ve installed in their bedroom and into the bathroom with the help of a
hoyer lift
, a mobility device that helps transfer patients from one point to another. after he gets her showered and dressed, he wheels her into the kitchen where he makes and serves breakfast.
7 minute read
