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My Dad and ALS

Updated on May 7, 2011

At the age of 78, my dad was struck with ALS, commonly referred to as Lou Gehrig's disease. We lived over 8 hours away, so didn't see him often, so I first heard about it from my brother Jacques, who lived nearby. The first indications of the disease were passed off by everyone who knew dad as drunken slurrings - he was, after all, a binge alcoholic.

As the slurrings got worse, he was persuaded to see a doctor, who referred him to a specialist, and the diagnosis was made - amyotrophic lateral sclerosis (ALS), a progressive and usually fatal disorder that attacks the nerves and muscles.

For him, the first symptom of this insidious disease, and the most obvious, was the deterioration of his speech. As the nerves in his throat atrophied, his speech became more and more slurred. About 25% of ALS cases are "bulbar onset" , where patients first notice difficulty speaking clearly. Speech becomes garbled and slurred, with an inability to speak loudly. Difficulty swallowing, and loss of tongue mobility follow. Eventually total loss of speech and the inability to protect the airway when swallowing are experienced.

My dad was an intelligent and well-read man who loved to have long discussions on many topics, so this was a real blow for him. I remember my first visit after his diagnosis, when I hadn't heard the test results. An article about the disease had appeared in a recent issue of the Globe and Mail, and he had kept it. He showed it to me, pointing to the article. As I read it, I asked him if this was his problem, and he nodded, with tears in his eyes.

In some ways, dad was lucky in how the disease progressed. In 75% of cases, the motor nerves are affected first, and patients experience awkwardness when walking or running, or they notice that they are tripping or stumbling more often. Other limb onset patients first see the effects of the disease on a hand or arm as they experience difficulty with simple tasks requiring manual dexterity such as buttoning a shirt, writing, or turning a key in a lock. He never did have those symptoms to any degree - his disease seemed confined to his throat and chest muscles and the nerves controlling them.

As it progressed, over the next two years, his speech became completely unintelligible, and he resorted to communicating with writing and body language. As the paralysis continued to get worse, his swallowing, chewing were causing some choking. When swallowing became impossible, he had a feeding tube. Maintaining his weight became a problem, and he started to look gaunt.

Eventually, breathing was affected as the diaphragm and intercostal muscles (rib cage) weakened, and lung capacity and inspiratory pressure diminished. Bilevel positive pressure ventilation (frequently referred to by the tradename BiPAP) was used to support breathing, first at night, and later during the daytime as well. As his breathing got less and less effective, a tracheotomy was necessary. Throughout all this, he was able to remain at home, with regular visits from the nurse.

ALS mainly affects the motor neurons, and in most cases the disease does not impair a patient's mind, personality, intelligence, or memory. Nor does it affect a person's ability to see, smell, taste, hear, or feel touch. Control of eye muscles is the most preserved function; and bladder and bowel control are usually preserved in ALS, although as immobility sets in and the diet changes, intestinal problems can require continual management.

I've often thought that this awareness and knowledge of what he could expect must have been one of the most difficult aspects of this disease for him to accept and live with.

The End

On his birthday, July 7th, the family gathered for his birthday (his 82nd) at his home. He couldn't eat the cake, but he was able to be there, gaunt and slow, but still walking, and to enjoy his whole family. His mind remained sharp, despite the progressive degenerating condition of his body. It was the last time I saw him alive. Most people with ALS die of respiratory failure or pneumonia, not the disease itself. He was hospitalized in late July, needing permanent ventilator support, and three weeks later, he died.

The ALS Cornflower: A Symbol of Hope

The Cornflower (Centaurea cyanis) is a native annual/ biennial plant from Mediterranean Europe. Representing positive hope for the future, the Cornflower is a humble reminder of nature's simple beauty and the fullness of life's cycle. The Blue Cornflower is to ALS what the Daffodil is to Cancer....they are the Flower of Hope for both diseases. The Blue Cornflower is the international flower of hope for ALS/ MND.

The Blue Cornflower plant is a very courageous plant, being able to stand up all the elements of nature (something many other plants cannot do) and the flower, with its star-like blossoms of brilliant blue, is one of our most striking wild-flowers. When you relate this to people with this disease, you can see that they have to also show courage, something that is not always easy, and strength of character to cope with the devastating changes that occur to the muscles in their bodies.

The Blue Cornflower was chosen to symbolize ALS, as it is hardy despite its fragile appearance. It is also long lasting, and grows in most locations in Canada. As the Blue Cornflower is planted, awareness of ALS grows along with it across the country.


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    • stephanie mclain profile image

      Stephanie 7 years ago from Texas

      Thank you for sharing your story.

      I also lost my father to ALS.He lived with ALS for 7 years and then passed in 1998.

      My father was also a talker. He told the best stories, full of life. His first symptom was also the "drunken" slurring, followed by the rest of the symptoms. :(

      I've known many men and women with ALS over there years. They are some of the most courageous people I've ever met.

      Again, thank you for sharing your story and helping to raise awareness.

      I'll be joining your fan club. :)

    • Nolimits Nana profile image

      Nicolette Goff 7 years ago from British Columbia

      Thanks for reading, Stephanie. A close neighbour also had ALS a few years ago. Shirley was one of the bravest people I've met.

    • SEM Pro profile image

      SEM Pro 7 years ago from North America

      I am sorry for your loss NoLN...

      Very well written to raise awareness. I was fortunate to have met the first person diagnosed with the disease about 22 years ago. More fortunate to share that his overcoming it became my inspiration to overcome my own challenge. Once seeing and experiencing that, it is difficult not to want to help everyone - shout from the rooftops to say it can be overcome!

      Then, I spent time with my mom who has Picks and am humbled by her acceptance of the slow deterioration. Acceptance. love and compassion are often all a person truly needs - or wants.

    • deleapsforward profile image

      Deanna 7 years ago from Edmonton, AB

      Thank you for your beautiful article on ALS. It seems to be a disease that no one really know about until they know someone who has it. Sadly I have known 2 people to loose their lives to this heart wrenching disease. Most recently was a dear sweet women, whose battle was only a year and a bit. And watching her battle through, with so much courage and strength was amazing. She lost her battle on the 18th of Sept. At a young age of 59.

      But because of her, my children became aware and raised money through their schools for ALS. We raised a total of just over $1700.00. But we informed almost 600 kids about the disease and what it does. Hopefully this year we can push that number up a little more.

    • Nolimits Nana profile image

      Nicolette Goff 7 years ago from British Columbia

      Thank you for the comments. How wonderful that your children did such a positive thing after being aware of this disease, and are continuing to do so.

    • technorican profile image

      technorican 6 years ago from Houston

      I am sorry for your loss.

      My younger sister died last year. She was 52 years old and a fitness trainer. Her symptoms started with her left foot and went up from there. It only took 18 months for ALS to claim her.

    • conradofontanilla profile image

      conradofontanilla 5 years ago from Philippines

      I have not seen a cornflower but I think I feel what it stands for. I myself is a victim of free radicals and reactive oxygen I am battling with. If we can control free radicals and ROS half the battle is won from where we proceed with stem cell therapy to rebuild nerves and muscles.I have just posted a Hub "How to treat motor neuron disease also called amyotrophic lateral sclerosis (ALS)."

      A shift from the germ theory of disease to free radical theories of disease is needed.

    • FlourishAnyway profile image

      FlourishAnyway 3 years ago from USA

      I am sorry for your loss. This was a beautifully told personal story, and I am touched by it. Thank you for sharing it.

    • Nolimits Nana profile image

      Nicolette Goff 13 months ago from British Columbia

      Since writing this, I have witnessed two more friends pass away after battling this debilitating disease. Both of them showed amazing courage and strength. The 'ice bucket challenge' has raised awareness of this disease, and we hope for a cure.

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