When he was a child, Paul Willis loved to entertain his friends with demonstrations of his flexibility. He would twist his arms and legs in bizarre ways that made them squeamish. He’d easily put his feet behind his head. He could fit himself into the tiniest spaces—the overhead compartment of the bus, inside school lockers—by folding himself like some high- tech gizmo.
Just as debilitating were the gastrointestinal symptoms, especially severe nausea and digestive problems—common issues with this form of Ehlers-Danlos syndrome. He missed nearly all of the last two years of high school because of the effects of the illness and had to go through a special program to get his high school diploma.When he was nineteen, he was hit by another cruel condition. He had been having a good day, so he accompanied his mother to get a gift for a friend at Toys R Us.
Hemiplegic migraines are rare. Their hallmark symptom, besides a headache, is extreme muscle weakness, usually on one side of the body. It’s often mistaken for a stroke. Paul’s parents hoped it would be an isolated incident, but less than a week after his first attack, he had another episode. This time there was no headache, just sudden paralysis of half his body.
The worst paralyses lingered for eight hours. When Paul came out of the longer ones, he would tell his parents how boring it was to be stuck in a body that wouldn’t move. The family tried to keep him entertained. Someone might put on a movie for him. Or they’d joke with him. Then one day during a paralysis, Paul stopped breathing. He could handle everything else, but not this. The inability to breathe was the start of a new and frightening turn in the disorder. Someone always had to be nearby, ready to use a manual bag- mask ventilator or race to get his bilevel positive airway pressure machine, which he used at night to make sure he breathed when he was sleeping.
As Oscar the beagle’s folks did when they were looking to train their dog to be a diabetic-alert dog, the Willis family ended up finding dog trainer Mary McNeight. Mary ran the then-Seattle-based Service Dog Academy that focused on training diabetic-alert dogs. Her own service dog had gone from helping her with her hypoglycemia to spontaneously alerting to her migraines with no training.
She says that in her experience, as long as there’s some kind of biochemical change, there’s a chance a dog could alert to it. “We’re not talking trick knees,” she says. “But there’s a lot of potential for dogs to be able to alert to illnesses in areas we haven’t thought of yet. We just have to try.”
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