Amyotrophic Lateral Sclerosis or ALS, an incurable, degenerative neurological disease, is imprisoning my mother-in-law in her own body. The disease that’s killing her neurons has robbed her of muscle control and the effects thereof have turned a 75-year-old lady into a 95 year old who will eventually become paralysed.
This Beast disease first made its appearance around November or December 2005 when her speech began to slur and her left hand gave her trouble. At first she did not have enough strength to do small tasks, then not enough strength to walk; now she can hardly move his arms or legs. At first everyone put it down to fatigue or loneliness because in September 2004 my father-in-law passed away and she had to live alone. Speech difficulties would happen more often, especially when she was excited or emotional. And then the twitching started. First in her left hand and arm. These twitches are called fasciculations and are a trademark of motor nerve irritation.
To cut a long story short she came to Pretoria in July 2006 and we went to see a Neurologist who diagnosed her with ALS. My mother-in-law asked him how much time she has left. (The usual progress of the disease is two to five years from onset, and death is normally caused by failure of the diaphragm muscles that control breathing.) Anyway, the Neurologist replied, “Who knows how much time any of us have left? The secret is to live one day at a time and make the best of every day.”
With ALS, the nerves no longer communicate with the muscles. Tighten those biceps, the brain might instruct, but the message never arrives. Eventually the muscles, figuring they're not required, deteriorate.
The muscles for speaking, swallowing and breathing are affected. These are called the bulbar muscles; I know this because the Neurologist told me so. She can hardly chew or swallow, eventually I will have to suction her throat, wipe her face when he drools and feed her through a tube. Speaking is a major problem and she battles to make herself understood, her lips are too weak to form the consonants required for basic words, luckily I have quickly adapted to her manner of speaking so I usually translate for her. I am her Caregiver and Communicator.
When she was first diagnosed with Amyotrophic Lateral Sclerosis she went through four stages until she acknowledged her condition.
At first came the denial stage. Maybe they were wrong and this only looks like ALS. Maybe the Neurologist was too young, too stupid, too sure of himself. Maybe they’ll find a cure this year. Maybe, maybe, maybe. What if, who knows, perhaps, if only.
During stage two she experienced anger. Why me? I’ve never hurt anyone; I’ve worked hard and been a good wife and mother. There are people around us that are committing horrific crimes, why not them? Why me you son of a bitch bastard? She curses and looks up at the skies towards her late husband. “Where are you? I need you. You can’t let this happen. Talk to the man and work it out please. I’m so scared!”
This then pushed her over the edge into the third stage, depression a sad and agonizing depression. She didn’t just cry, she sobbed uncontrollably, tears that came from some tormented place deep within her soul. She wanted to die! And we her children stood by and watched. We could not ease her pain and there were no words to comfort her. It broke our hearts.
Then at last came acceptance. The day that she finally realized that all this was true and she was going to die. From here on she would try to live all her remaining days well.
This too is part of life and we can only do the best we know how. We try to make her days as happy and comfortable as possible.
She shuffle walks past me in the passage and despite this grueling battle she always finds a way to laugh and smile at most things.
ALS, three letters that can change peoples lives forever!
(690 words)
Date created: 2006-12-05
Times displayed: 384
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