My name is Paul La Frenais. You may not know me but you might know my father, David La Frenais, who owned MSC Electronics Ltd. which, in 2005, was purchased by Novanet Communications Ltd. I worked for MSC/Novanet in many capacities for almost 30 years until, finally, in May of this year I “retired” due to my illness, although, at that point, the only symptom I had was the inability to speak.
In January of this year, I was diagnosed with ALS (Amyotrophic lateral sclerosis), also known as Lou Gehrig’s Disease. ALS is a form of motor neuron disease, a progressively fatal, neurodegenerative disease caused by the degeneration of motor neurons, the nerve cells in the central nervous system that control voluntary muscle movement. Today, renowned physicist Stephen Hawking is the best-known living ALS patient. The disorder causes muscle weakness and atrophy throughout the body as both the upper and lower motor neurons degenerate, ceasing to send messages to muscles. Unable to function, the muscles gradually weaken, develop fasciculation’s (twitches) because of denervation, and eventually atrophy because of that denervation. Although it varies from person to person, death usually occurs in 3 to 5 years from the onset of the disease.
ALS usually progresses from the “ground” up or from the extremities. I was diagnosed with Bulbar ALS, which progresses from the top down. The life expectancy for Bulbar ALS is shorter, and the progression is considerably quicker.
The first symptom I, and co-workers, noticed was the slurring of some words. As this progressed I went for a number of tests where it was finally determined that the diagnosis was ALS. Currently, I have lost the ability to speak, and the use of my tongue (so cannot eat most foods), 75% of the strength in my arms and legs, and I am losing my sense of balance (e.g. managing stairs is difficult). This disease, like many others can be very taxing, not only on the patient, but also to the family members. The eventual outcome is confinement to a bed, with no ability to move, followed, typically, by death from respiratory failure or pneumonia.
Amid the overwhelming gloom brought on by this relentless disease is a ray of sunshine – the support provided by my friends, and family, that, in these dark times, I have found to be extremely uplifting. To keep this article short, in extending my thanks for the support I have received, and continue to receive, I will list only my parents, David and Nara, and my daughters, Brittany and Normandy. However, suffice it to say that the support from my friends, and co-workers, has been nothing short of outstanding. Actually, three of my friends took me on a golfing trip to Myrtle Beach in May, just before the disease progressed beyond my loss of speech and the swallowing issues. I will remember that forever.
If you would like to learn more about ALS, please visit either the ALS Society of Canada or on-line sites such as Wikipedia. About as many people are diagnosed with ALS as MS each year, however because the life expectancy is much less for ALS, there are much fewer people living with ALS and so it does not get the funding that MS and other diseases do.