Henry Ford College Student's Medical Mystery
“I can kind of hear them talking with my mom and they say, ‘Is there any chance he could be faking it?’” Disbelief sets in as Henry Ford College student, Andrew Bedard, presumably pushes another dislocated rib back into place with a wince of pain.
Rewind about two years ago when life for Bedard seemed completely normal. Bedard was a teenager living in Southgate, Michigan, with his family. Medical problems were not a significant part of Andrew’s life at that point, “I had asthma,” he tells me with a shrug. That was about the extent of it, until something changed. While at a restaurant with his family, Bedard sat down at the table and out of nowhere felt a strange painful shift at his shoulder, like something popped out of place. He was confused and said it hurt like a 5/10 on the pain scale. He grabbed his arm, moved it, and felt something shift back into place.
Thinking not much of it at the time, a couple of weeks later at his primary physician’s office, Bedard demonstrated his strange new trick during his completely unrelated yearly checkup, asking if it was normal that when he moved his shoulder a certain way, he could get it to pop in and out of the socket. He was promptly told that it was not normal and that his shoulder just dislocated, and it was a cause for concern. The doctor recommended he schedule appointments with a variety of healthcare specialists.
Bedard says that soon the pain with every subluxation and dislocation increased exponentially, and that more joints began to show this unexplained laxity. To date, he has seen five physical medicine and rehabilitation doctors, nine different physical therapists, and a slew of occupational therapists, cardiologists, not to mention specialists in neurology, genetics, and neuromuscular systems. This constitutes an impressive lineup for a young man not yet 20 years old.
After a full battery of tests including blood, urine, genomic (for him and his parents), X-rays, MRIs, and physical examinations, the most common refrain is a look of defeat paired with an “I’m sorry, I don’t think I can help you.” Every healthcare professional seems to try to refer him to a different kind of specialist, and Bedard repeatedly informs them he’s already seen someone in that field. The closest diagnosis he has heard is that his condition is some kind of hyper connective tissue disorder, but it’s considered too severe to be Ehlers Danlos syndrome. According to the Ehlers-Danlos Society, EDS “are a group of hereditary disorders of connective tissue” characterized by “joint instability.”
Bedard says, “It’s like when you roll a snowball down a hill, and it just keeps getting bigger and faster.” First his right shoulder, then the left shoulder, then ribs, then his back. Before long he was dislocating joints with considerable pain numerous times throughout the day.
The dislocations continued to his knees and ankles at which point Bedard’s doctors insisted he use a wheelchair until they could figure out what was going on. “It started happening to my wrists; I’ve had to learn to write three times now. It’s a very progressive thing, I’ll move my wrist a certain way and there’s a grinding feeling and a popping sound, then something slips out of place, then I squeeze my wrist and it feels like it pops back in. It’s weird.”
“I have chronic pain. I’m used to it. I am at, like, a 7/10 on any given day.” Bedard takes pain medication multiple times per week. Bedard says, “Yeah, they don’t do much. I’m weaning off NSAIDs and I refuse to take opioids. I don’t like the way they make me feel. The only time I resort to them is when I have such a bad dislocation that I can’t get it back in myself and I have to go to the ER.” He adds, “I’ve dislocated so many joints, my jaw, my kneecaps.”
About a year after that first dislocation, Bedard began to make progress very slowly. He worked in outpatient clinics on strengthening the muscles that stabilize his joints with such minimal resistance that at first, he says, “It’s like the resistance band wasn’t even there.” In time, he developed a series of daily home exercise programs, while continuing to go to physical therapy multiple times per week, and over the course of several weeks, his shoulders stopped dislocating every day. Bedard was going to the YMCA in Southgate four days per week to work with one PT who was so committed to his rehabilitation that he nearly got himself fired for refusing to discharge Bedard after several weeks of negligible improvement. That’s where Bedard was first introduced to aqua therapy.
Using a makeshift PVC wheelchair, physical therapists would wheel him into a pool where he would have floats attached to him, making him feel like he was in zero gravity. In the water without gravity bearing down on him he could handle the bodily stress of treatment. They’d have him move his legs in a motion like walking without his feet touching the bottom of the pool or do some isometric work strengthening his lower extremities by gently flexing his hips against the wall. Over time they’d move him from the deep end to shallower and shallower water letting gravity come back into the equation bit by bit. While a valuable entry point into gait training, it was not completely without incident. He did have EMTs drag him out of the pool on a few occasions. Bedard was doing aqua therapy two days per week and “regular” physical therapy in a clinic two days per week for quite some time.
To regain the ability to write, he says his physical therapists stuck a pencil through a tennis ball to give him a larger object to hold onto, they slowly reduced the size of the ball until all that remained was the pencil itself.
His condition required Bedard to rely on a wheelchair. “I was horribly dependent on the wheelchair at that point. I couldn’t even wash my own hair with how bad my shoulders were. My hips were just as bad, I couldn’t walk, I couldn’t do anything. Even going over bumps while in the wheelchair could dislocate my hip.” And he told me how he was managing with school, “I was homebound. I kept up with my schooling, but they didn’t have anything like Zoom available. My school was not very accommodating.” The school sent him his homework and all the information and he completed it at home and stayed on track.
“The only class I was going in person for was band because I really needed the social interaction. I like people. Being stuck at home by myself all the time was hard. My mental health took a giant dip.”
Bedard says, “I’ve adopted an indifferent attitude. I go to meet some new specialist and I tell myself they probably can’t help me. If they say they can do something for me then great, if they can’t then I’m not too torn up about it. I’ve adjusted my expectations because I don’t want to be let down anymore. That’s still my attitude.” Over the course of several months without significant setbacks, all Bedard’s small hard-earned victories slowly added up to noticeable improvements. He says he was ready to start gait training outside of the pool. “They have this thing called the cage. It sounds scary but it’s kind of cool. They’d wheel me into this thing and put harnesses on me, like bungee cords, and they’d suspend me in mid-air. They said it’s usually used for kids with cerebral palsy, but they wanted to try it on me too.”
To progress his gait training further PTs would have him in a gravity-eliminated-side-lying position and have him move his legs in a walking motion. He progressed to parallel bars, and eventually he could walk with a walker, then two canes, then a single cane. “This was like two years after my first incident. I was doing good. I was starting to feel better about things. I was back in school for half days, I only used the wheelchair for long distances. And then, I got sick.”
Bedard was diagnosed with an autoimmune disorder. “I was told I have some kind of dysautonomia. I had severe flu-like symptoms and ended up in the hospital multiple times and everything went downhill with my joints. Back into the wheelchair, my dislocations started reoccurring but not nearly as bad as before. My shoulder would dislocate like once a week. Only problem was, now I couldn’t get them to pop back in myself anymore.”
After four months in and out of the hospital, Bedard got his autoimmune disorder under control, but much of his progress on his joints and mobility were compromised. The following year he had another similar autoimmune flare up, and another slow build to earn back his progress. “I never stopped with PT. When I was too sick to go to the clinic, I still had my home exercise programs. I did band work and isometrics when I wasn’t too sick to do them.” Bedard did a variety of exercises on his own to strengthen the muscles around his hips, shoulders, elbows, wrists, and ankles drawing from his extensive PT experience.
“It’s my junior year of high school. I’m walking again, I’m back in school. The only dislocations I was having at this point were my ribs. And then, COVID!” Just as he was looking forward to getting back to normal life a global pandemic swings into full effect, dramatically changing the lives of everyone on the planet. Bedard’s condition remained relatively stable for the next year and half as everyone transferred to virtual schooling.
Bedard showed up at the end of his senior year for a long-awaited reunion with his high school friends standing on his own two feet without an assistive device to receive his high school diploma. “Mentally I was doing really well. I had a job working at a suit store in Wyandotte. I felt independent. I was driving. I was in a good place.”
All seemed well until a few weeks into his first semester as an Honors Program student at Henry Ford College. Bedard was playing with his dog in his backyard when he felt a horrible pain in his lower back and both his legs went totally numb. “I collapsed to the ground. I couldn’t feel anything below my waist; my legs were just dead weight.” Bedard says that after a few weeks the strength and sensation in his left leg came back and expected the same of his other leg, but it hasn’t yet. After several weeks of physical therapy, Bedard can finally get a small contraction in his quadricep and can wiggle the toes of his weak leg but the calf isn’t working. Bedard currently uses an ankle-foot orthosis to help him walk. “At first, it was almost like my leg was erased from my brain. I’m still resetting my ribs like eight times a day. Anything can make them pop out of place, bending over, sitting, standing, anything.”
While still partially dependent on a wheelchair, Bedard tells me that a big part of his current home exercise program includes everyday activities, like doing chores. “I load and unload the dishwasher, I fold laundry, and that takes a lot of physical effort at times. My PT tells me to drive my car, go to school, walk, these things are better than what can be accomplished in the clinic.”
Bedard couldn’t drive for about eight months, but he is back behind the wheel of a car. “I take things a day at a time. Pain gets annoying. It interrupts my sleep a lot. I usually wake up three to six times a night because of back pain.”
One particularly frustrating aspect of his condition has been the impact on his ability to play the trumpet. It already interrupted his marching band career in high school but his passion for his craft hasn’t wavered. “It’s one of the most annoying things. Anytime I try to play any notes above a high concert C my ribs start popping out.” Anytime he plays for longer than 15 minutes he has the same problem.
Time spent in physical therapy has translated over to improving his body’s ability to play trumpet by working on his abdominal strength. Bedard says “My abdominals have not gotten much better, but they haven’t gotten worse. They have me doing bands, ‘sucking it in,’ some weights, sit ups, planks, and stability stuff. I’ve learned that a lot of mid to low back exercises translate to ab strength.”
While Bedard is mentally stronger, he says, “I’m more cynical. I’m not bitter or colder, but I’m different. I’m not always happy. I’ve learned to put a mask on my face, literally and figuratively.” He tells me while gesturing at his cloth mask, “I can smile when I’m not smiling on the inside.”