BETHANY SPENCER & STINSON

If the weather is nice, you may be able to find Bethany studying by the river. She is a Masters student studying clinical psychology at Western Carolina University. Her research looks at the effect of specialized summer camp on children with neurodevelopmental disabilities’ self-esteem, self-efficacy, and comfort with their diagnosis. It’s a topic that’s particularly close to her heart because Camp Twitch and Shout is basically a second home for her.

Bethany says her coworkers at her full-time job at Subway make work a fun break from school. When she isn’t studying or working, Bethany enjoys crocheting, cooking, and sewing. She shares her apartment with her cat Izzy and a roommate.

Bethany has multiple chronic conditions, with the prominence of each condition changing over time. Currently her most significant condition is recurring status migrainosus, sometimes known as intractable migraines. Bethany’s migraines present with a series of intense auras that can last up to two weeks proceeding the headache phase and may also follow it. The auras come on gradually and because of other conditions she isn’t always aware that she is having an aura until it is too late to take preventive medication. Early signs include reduced sensation in her body and a kind of detachment in her body, followed by intense vertigo, reduced processing speed, and slurred speech. She may forget things she knows well like how to get home. During an aura, she has poor motor control which causes her to trip while walking and drop things regularly. At times she can’t feel or move a portion of her body (typically on her right side), ranging from a hand or a leg to, rarely, that entire side of her body. She can be stranded at onset of a bad aura because she can’t safely drive.

Bethany also has Tourette syndrome and hypersomnolence. Her Tourette syndrome currently presents with mostly mild to moderate tics characterized by vocal sounds including chirps and phrases, kicking, shaking and nodding her head, punching herself in the chest, and, less often, dystonia such as freezing. Her hypersomnolence, or excessive daytime sleepiness, is currently controlled by medication but she continues to need significantly more sleep than average. She also falls asleep at inappropriate times when she isn’t active such as in class, despite a full night of sleep. She may nod off for very brief periods, particularly in the mornings and evenings when her medication isn’t fully covering, or she may fall asleep and be “out for the count”. Her brief spells may repeat, or cycle, rapidly, and they can transition to a longer period of inappropriate sleep.

Bethany also has some idiopathic symptoms that she and her medical team are investigating. She measures her heart rate and blood oxygenation every hour and checks her blood glucose 1-2 times a day to look for correlations with her symptoms. They have found that her heart rate can vary considerably (as low as 35 and as high as 140) from her normal range of 90-110, and her oxygenation has dropped below 90 at times. Her blood glucose doesn’t seem to vary much. A friend’s service dog has alerted to Bethany’s high and low heart rate as well as migraines.