– by Trysh Ashby-Rolls –
September is Amyotrophic Lateral Sclerosis (ALS) month. Also called Lou Gehrig’s disease after the famous baseball player who suffered from this motor neuron disease that eventually claimed his life. It’s one of those diseases nobody wants to talk about.
When Kim Davis experienced some of the early symptoms he didn’t tell a soul. Maybe he thought the weakness a figment of his imagination, that the difficulty walking would go away. A tough man, tree surgeon, talented actor in community theatre, sculptor, friend, husband and father, there was no way he would admit anything was wrong. His best buddy noticed not all was well after a bunch of guys had played pool one evening over a few beers. He offered his assistance, thinking Kim had simply had one drop too many.
It took a while before anyone realized it wasn’t a question of too much to drink or exhaustion or all sorts of other possibilities mentioned by people in the community. The signals to and from his brain to his spinal cord and on to his muscles – the motor neurons transmitting “electric messages” that tell muscles when to move – were not getting through. His muscles were slowly losing strength and wasting away, a process called atrophy or amyotrophy. Gradually, with the signals from brain to spinal cord blocked, Kim’s muscles became stiff and slow, called spasticity. His doctor suspected ALS, but to rule out other possible causes for his symptoms, sent him for tests.
Electromyography (EMG) is used to determine whether the problem is in the muscle or the nerve cells. This test works by measuring the electrical activity in the muscle. Magnetic resonance imaging (MRI) of the head or spine was also used to exclude other conditions that can damage or compress nerve cells such as tumours or degenerative disc disease. Based on where in the body symptoms first appeared, and where or how they progress over time, doctors can tell the difference between ALS and other conditions.
When the results came in, the doctor broke the bad news: Kim was one of the seven out of every 150,000 people who get ALS. More common in men than in women, ALS usually appears between age 50 and 75. Most devastating is that life expectancy averages two to five years after diagnosis. Kim fell slap-bang within the parameters.
The cause of ALS is uncertain at this point. There’s a family history of the disease in 10% of people, but researchers are working on theories as far apart as heavy metal exposure and other environmental factors, to excessive levels of glutamate, free radicals or viral infections. This means, of course, that at this stage there is neither prevention nor cure for ALS.
Medications help control symptoms and even slow the progress of the disease. Some folk require a feeding tube, some a respirator. Others need speech or physical therapy. If the person wants to stay at home good emotional support and practical help are vital. It can be terribly frustrating for the ALS sufferer because, although the physical body weakens and worsens, mental capacity does not. Kim wanted to stay at home with his wife and daughter, which he did thanks to a team of loving friends, caring community nurses and a doctor who still makes house calls.
Support groups can also be helpful: the ALS Society of Canada can be contacted at 1-800-267-4257.
