My Dad and ALS
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.
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.
Find Out More...
- Amyotrophic lateral sclerosis - Wikipedia, the free encyclopedia
- ALS Society of Canada
ALS or Amyotrophic Lateral Sclerosis, also known as Lou Gehrig's Disease is a fatal motor neuron disease.
- ALS TDI | The world\'s largest ALS research center
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