Coming to terms with the symptoms of ALS

Bernie Jaeger was the type of man who could never sit still. As an avid outdoorsman, Jaeger was always hiking, fishing, hunting, and generally pursuing an active lifestyle. He loved his jobs as a taxidermist and a big game outfitter. “I was a workaholic,” said Jaeger from his five-acre farm just outside Vernon, B.C. “I was always on the go and couldn’t stop for more than 10 minutes at a time.” Now, at the age of 59, Jaeger has slowly lost the ability to keep up that lifestyle. Around four years ago, he started to notice the loud, slapping sound of his feet walking on a concrete floor. He would stumble when he hiked. Sometimes he couldn’t stretch his legs. He once fell and cracked a set of ribs. At first, Jaeger didn’t know what was wrong. He sought medical treatment but doctors couldn’t reach a consensus on his condition. Initially, he was diagnosed with chronic inflammatory demyelinating polyneuropathy (CIDP), which is characterized by progressive weakness in the limbs. That diagnosis didn’t seem to fit, so he was treated with antibiotics for a possible case of Lyme disease. But that didn’t help. After eight months of misdiagnosis, it was finally concluded the Jaeger had ALS. “I was sort of in denial at first,” said Jaeger. “I spent the first two years of diagnosis working my jobs because what was I supposed to do? Drop everything and say ‘poor me’? “I wanted to keep everything as normal as possible.” Jaeger was able to deal with most of the changes happening to his body for nearly two years. But he had less energy and it was becoming harder to move around like before. To keep his mind off of his newfound reality, he kept on working. “By working and staying active, I figured I would live a lot longer this way,” said Jaeger. A year after his diagnosis, Jaeger completed the Walk for ALS to raise funds for ALS societies across Canada. The year after that, he had to participate in a wheelchair. It’s been about threeand-a-half years since his ALS diagnosis, and Jaeger is now confined to a wheelchair and, due to limited mobility in his hands, needs help to eat his meals. Coming to terms with the symptoms and conditions of ALS is one of the biggest obstacles for ALS patients, and Jaeger said he was no exception to that. “Deep down you’re still hoping for some miracle cure, because it’s easy to lose your ambition in life,” said Jaeger. “But rather than looking at what you can’t do, you look at what you still can do.” For Jaeger, that meant appreciating the scenery and the people around him. He takes the time to soak in the wildlife around his acreage that he was too busy to notice before. He said he also has great support from his family and friends, who at a moment’s notice will take him for a ride in the backwoods whenever he needs. Outside of his immediate support group, Jaeger said he is extremely thankful for all of the support he receives from the ALS community. Without their support, Jaeger said it would be financially ruining to pay for the basic necessities, such as an electric wheelchair, respiratory assistance, and lifts around his home to help him get around. Jaeger is active in the ALS community by attending the ALS support group in Kelowna and doing what he can to help other people in his position. He hopes that people will continue to make donations to help ALS patients like him, as he continues to be an ambassador of hope and optimism for people with the disease. “I often say I’m not dying of ALS; I’m living with ALS,” said Jaeger. “And I want to live as long as possible.”