by Anne Finlay-Stewart
Bob Wallace has built his radio career "coast to coast, up and down the dial" on being a likeable guy you think you know. So it comes as a real surprise to discover that he lives every day with a condition that he describes as having electrodes stuck into your face and connected to high voltage wires. Simple daily actions like eating or brushing teeth can be agonizing for him.
Trigeminal Neuralgia (TN) is the name of this torturer, not that Bob had ever heard of it until long after it had brought him to his knees more than once. It is a disease that shows up most commonly after the age of 50, and the diagnosis is made by eliminating other possibilities like tooth or gum issues. It took five years and a wise dental assistant for Bob to seek out a knowledgeable neurologist. He learned that the source of his excruciating pain was an abnormal compression of a cranial nerve.
Bob takes a cocktail of approximately fifteen pills a day to control the TN, and there have been days when even they have barely held the pain at bay. Every person responds differently, and effective treatment depends on people with TN constantly being their own advocates. Although the most experienced specialists are in large urban centres, Grey-Bruce has access to video-conferencing between doctors here and neurologists at the Toronto Western Hospital. A surgical intervention called microvascular decompression has a 90% success rate, but is not without risk of serious complications.
Diana Meder, Bob's partner on the radio and in life, has learned just how hard it can be when the person you love is in severe pain. When Bob's tone turns uncharacteristically sharp, Diana knows "that's the face talking". Trigeminal Neuralgia has been called "the suicide disease" - so unremittingly painful it can bring a person to believe there is only one way to relief. Partners and caregivers can get to a similar point of frustration, and Diana says they should try not to be hard on themselves – those feelings are completely normal when you are powerless to help.
Bob created a Facebook page called End Trigeminal Neuralgia which has attracted almost 1400 members worldwide and is growing daily. A venue for mutual support and sharing treatments and coping strategies, it has also been the place where local people have discovered that they are not alone – even in their own community. Although it is estimated that TN affects only one in 15,000 people, there are a number of people with the condition in Owen Sound.
Why does Bob advocate for more awareness of this condition that affects him so personally? Simply put, he says "Because I can. I have a platform, and the skills and support to get the word out. And thank God for benefits." He knows he has it easier than many. There are children with Trigeminal Neuralgia and people so completely debilitated by TN they are unable to work at all. Because he knows that a correct diagnosis and effective treatment can save months and even years of suffering, Bob has made it his mission to do what he can to support his fellow travellers and continuing research in the field.
Bob Wallace is the kind of guy you want to have over to watch the big game. And he's also the one you want on your team when it counts. This is one he really wants to win.
