On Wednesday, June 22, 2011, we left mid-morning to make the five-hour drive to Wellington, Nevada for a visit with Andrew’s parents. Both of us uncomfortable on the drive and affected by the altitude change, we did not think much of the tingling he felt in his toes after we arrived that night.
The sensation, he said, was like when you wake up in the middle of the night and you’ve been sleeping awkwardly. Your foot has fallen asleep and is initially numb, but as the blood recirculates through it, you feel an intense tingling as feeling returns to normal.
But the next morning, the feeling hadn’t returned to normal. In fact, it had gotten a little worse. Rather than just the toes tingling, he now felt the sensation throughout his foot and, by the end of the day, even in his heels. Oddly, he could sense it in both feet rather than one or the other.
Around this time, he also complained of a pain in his back, what he described as a strained muscle or pinched nerve. It’s the altitude, we thought. Or the long, uncomfortable drive in our little Toyota Yaris. We expected that it would gradually go away.
By the third day, the tingling had spread to his fingertips and hands. The back pain was worse, and he complained of headaches. We theorized that he had a pinched nerve, probably in his back, and that it was causing the tingling feeling.
By Saturday morning, the tingling in his feet turned to numbness, and the feeling worsened when he wore shoes. Disconcerted, he made first contact with medical advisers.
Saturday morning, before we left for home, Andrew called the Kaiser advice nurse. He described his symptoms, and she scheduled an appointment for 8 a.m. Monday morning. We said our goodbyes and began the trek home, but Andrew was unable to finish the drive because of his discomfort.
By that night, the feeling was worse — now constant, rather than only when he moved, it even seemed to weaken his legs, making going upstairs difficult and exhausting. He called the advice nurse again and, with the recommendation from an ER doctor, we left for the emergency room.
Once they finally called him back, the doctors did several tests, looking at his arm and leg strength and reflexes. Each doctor asked the same questions: Do you have diabetes? Can you feel my fingers touching your toes? He told the same story over and over again.
They drew blood and theorized that the neuropathy (we now had a name for tingling in the extremities) was caused by some sort of vitamin B deficiency. They told him they would run the tests and he could review the results with the doctor at his Monday morning appointment. Then they sent us home.
The next day, he took a vitamin and sat around as his symptoms got progressively worse. His coordination was off and his knees weak. Here’s a 32-year-old guy that usually jogs up and down the stairs who could barely make it walking upstairs without stumbling. As I cleaned the kitchen that evening, he sat at the dining table researching his symptoms.
“This is what I have.”
With certainty, he rattled off the symptoms for something that we had both never heard of: Guillain-Barré Syndrome.
He was, of course, terrified as he read that it is a rare, somewhat mysterious autoimmune disorder that can strike anyone for seemingly no reason at all. The body’s immune system begins to, for reasons yet unknown, attack its own nervous system, slowly chipping away at the myelin sheath protecting the nerves, like a nation’s military attacking its workforce. The site described a horrible, rapid progression to full-body paralysis.
We printed the description, called the advice nurse yet again, and returned to the ER.
At this point, I thought he was acting like a hypochondriac. He had an appointment scheduled for the next morning, I thought, why go again tonight? What could they tell us that the doctors last night could not? I worried that he had psyched himself out and that his own anxiety may have been heightening his symptoms.
He was insistent, though, and scared. So we went.
This time the doctor met him at the door and took him back. He asked the same questions and did the same strength tests. When Andrew presented him with the findings of his research, the printout on GBS, the doctor was adamant.
“I’m familiar with Guillain-Barré,” he said, “and this isn’t it.”
He was convinced that Andrew was having a very slow panic attack, a theory he supported by looking at his medical history. Despite that, he agreed to recommend him for an appointment with a neurologist later in the week “for peace of mind,” he explained.
The doctor prescribed him three days’ worth of Ativan, an anti-anxiety medication, to test his theory. He expected that, when calmed, Andrew’s tingling would disappear.
That night, Andrew took one pill. The next morning, his symptoms had worsened, so rather than cancel his appointment, he returned to the hospital for the third time in three days.
He drove himself to his appointment and saw the doctor at 8 a.m. The doctor called in a neurologist who tested him again, then sent him to have a nerve conduction velocity test, which basically times how quickly a signal travels along the nerve.
The diagnosis was GBS, and they checked Andrew into the hospital immediately. He would not leave for six days.
Right after the doctor diagnosed him, Andrew sent me a message that I didn’t receive for several hours thanks to crappy cell phone service. The hospital admitted him, moved him to the ER where he was hooked up to a machine that would monitor his vitals, then ultimately moved to a glass box of a room in the stepdown unit, where they continued to watch his vitals and he had 24-hour attention by a few careful nurses.
My initial reaction after hearing his message was panic, and I frantically rushed to the hospital to meet him. On the way there, between fits of crying and hyperventilation, guilt hit me: he had been at the hospital all day, processing this by himself, with no one there for support.
When I finally saw him, though, he was laughing and joking with his nurse. His calm made me calm.
He explained that he would receive five days of intravenous immunoglobin therapy, all under the constant monitoring of doctors and nurses. He also explained that the doctors had warned him that the condition would get worse for two or three days before it would begin to get better.
The first administration of immunoglobin took 13 hours. They kept it slow to make sure that his body was accepting. Each shampoo-size glass bottle contains antibodies extracted from thousands of healthy blood donors. Over the course of five days, he received 175 grams of immunoglobin diluted to over 60 ounces of clear liquid that he received through an IV.
That first night, I made the call to family and a few friends to let them know what was going on. None of them had heard of the syndrome, so a lot of Googling happened. The horror stories about GBS are just that — horrifying.
His parents printed nearly 60 pages of reading material about it. Friends read about people paralyzed for months, unable to move or eat, and at its worst, unable to breathe. The scariest part of the whole ordeal was the speed at which it progressed. Less than a week before hospitalization, Andrew was in the weight room teaching freshman football players how to dead lift. Now, he couldn’t lift the weight of his own arm.
We spent the first night in the hospital, unable to sleep because of the alarm on the respiratory monitor that would sound whenever he nodded off to sleep and his breaths per minute dropped. The next morning he felt drowsy and his symptoms had worsened.
We were told it would get worse, but we had no idea what worse would look like.
Turns out it was quick-progressing paralysis. On Tuesday, Andrew’s attempts to walk were difficult. He stumbled during physical therapy and found it nearly impossible to lift himself up. By the evening, he struggled to swallow and the tingling had moved up his legs toward his hips.
On Tuesday morning, seven doctors visited Andrew, and techs came by regularly to draw blood and test his respiratory strength. The head neurologist visited to test his strength and reflexes, of which he had practically none.
By Tuesday night, he was in a bit of a panic. The tingling had moved quickly up his legs to his hips. If it moved this quickly today, he wondered, will I even be able to breathe tomorrow? Late into the night, we were able to get a doctor to come up and visit him, and the doctor assured him that his experience was normal. That gave him the peace of mind to get a few hours of sleep.
On Wednesday afternoon, he hit the bottom. Andrew had lost control of much of his body. Virginia, one of his little old Filipina nurses, could walk right in and kill him if she wanted to, he said. He had no strength.
Mid-afternoon he needed to use the restroom, and that’s when I really got a sense of just how weakened he was. With the help of a tech, he was going to try to use the walker to get into the restroom. It took immense effort and raising the bed to the highest level to get him standing. He locked out his knees and shuffled to the restroom. As he shifted to turn, one of his knees bent and he fell immediately to the floor, dropping from our hands like a lead weight. An emergency call went out and though others gathered to help, it took a large male nurse to lift him back up.
“He’s so young. Looks so strong,” the tech said after. Deceiving.
That afternoon his spirit was low, depressed. I tried to remind him that we knew it would get worse, but it made no difference. A healthy 30-something becoming paralyzed over the course of a week doesn’t have much time to process what’s happening. Beyond that, he felt powerless to fight against it.
We imagined the worst and thought of all the stories we had read or that others had told us. People unable to move anything but their eyes. Tracheotomies required to breathe. Complete loss of bladder and bowel control. Irreparable damage.
Doctors had told him from the beginning how lucky he was, that he caught it early and that it wouldn’t likely progress too severely. But at the lowest moment, we certainly weren’t feeling fortunate.
Wednesday night, the end of day three of IVIG treatment, it turned.
The first sign was a boost in energy. Andrew felt better, stronger, though no more mobile. He ate an entire dinner for a change. He felt more optimistic, though he wasn’t sure why.
At the time, we were both hopeful but hesitant. That night, despite some intense back pain, which was probably caused in part by the hospital bed, he got several solid hours of sleep. In the morning, he awoke improved.
Slowly, the weakness and tingling regressed. First, it left his hips and began to drop down his thighs. He could lift his arms a little and roll himself to the side. He ate.
We felt good about the improvement, as did his many doctors. Their and our concern on Wednesday turned to relief on Thursday as we saw the symptoms slowly fade. The IVIG treatment seemed to be working, and we could not have been more thrilled.
At this point Andrew was still unable to walk, even with a walker, but we did see positive signs, like his ability to lift his legs. With his physical therapist, he lifted himself from a seated position to a standing position four times with the support of a walker. This wiped him out, though, and he wasn’t able to do much else after. It took everything he had.
Friday was miracle day. Standing from a lower seated position progressed quickly. He showed significant improvement but still failed the stair test. His legs were weak but improving.
At that point, after receiving his final dose of IVIG, his medical team began talking about sending him home. They agreed that after meeting with the physical therapist and learning how to ascend and descend stairs with his walker and cane, he could be discharged and finally return home to continue his recovery. That night his dad stayed with him and I spent the night at home for the first time in several days, but only after my sister and I made our home handicapped accessible.
Before noon on Saturday, we were on our way home. A hospital staffer wheeled Andrew out to the curb in a wheelchair, giant stuffed bear in his lap. Shaky, he stood from the wheelchair then shuffled around to drop heavily into the seat of the car.
On the way home, he smelled the air — his first fresh air in about a week. He sighed often, relieved to go home but trepidatious about the obstacles ahead.
The stairs up to the house posed the first challenge. He would need to get out of the passenger seat into a standing position and walk up about eight steps, all deeper and less stable than the one he had practiced with in the hospital.
With the support of both our dads, he took his first precarious steps, using a lot of upper body strength to compensate for his weakened legs.
The slow, awkward process made us all anxious, but he made it. He collapsed onto the couch, where he remained for much of the evening.
As the doctor explained, the muscles in his legs work, but because of the nerve damage, his brain is unable to send the message to the muscles efficiently. It’s a lot like trying to drive a car down a destroyed road. It’s not the car that’s broken. It’s the road that slows it down.
So he has begun the process of relearning to walk, which includes not only building strength but confidence. Falling several times in the hospital left Andrew feeling deflated and uncertain.
By mid-day Monday, he moved up and down the stairs more steadily. He began to abandon the walker for the cane. It appeared as though the recovery speed might just match the speed at which the paralysis progressed, which was promising.
Doctors told us from the beginning that this was best case scenario for GBS. Early diagnosis, early treatment, early recovery, they said.
We can’t help but hope that they’re right and that Andrew makes a complete and quick recovery. He fully expects to be back out at practice by the end of the week. Jogging again by the end of July.
We hope so, but we also know that many GBS patients take months and even years to recover. Some never fully recover. He’s beginning to walk again, but he’s still troubled by a droopiness on the left side of his face, something the neurologist believes will go away with time.
Doctors don’t seem to understand what causes GBS, and there is no cure, though the IVIG treatment is highly successful.
As we left the hospital, saying goodbye to doctor after doctor, they all say the same thing: hope we never see you again. We hope so, too. Those who have had the syndrome have a slightly higher chance of getting it again, but for most people, it strikes like lightning — unexpectedly, randomly, and one time only.
We hope that at some point medical researchers discover what actually causes the immune system to turn on the nervous system. There are theories, some related to flu vaccines. But no obvious pattern has emerged.
We also hope that by sharing what happened to Andrew, others will become aware of the syndrome and take something as simple as tingling toes seriously. Andrew’s persistence saved him; hopefully others will be willing to listen to their bodies, go back to the hospital again and again, and talk to just one more doctor. Even carry a printed description of the condition you’re certain you have into the hospital at the risk of appearing crazy.
We hope that others are as fortunate as we were, and we hope that families afflicted by this — because the condition affects the entire family — receive the same support and extensive care that we did. Yes, lightning struck. It was unfortunate. But in the end, we know it could have been severely worse. For that, we’re fortunate.
In the midst of the chaos, we spent each moment of the day just living, doing what needed to be done. Helping Andrew hold a fork. Giving him washcloth baths. Trying to shave his chin without slicing him open.
I wanted to keep him from feeling the loneliness that seemed to radiate from every room I walked by on my way in and out each day. We cuddled on his bed, watching Dexter and eating mint chocolate chip ice cream. We joked with nurses who asked, “Which one is the patient?” I smuggled in Chipotle and set up his side table as a makeshift dining table. We grasped at normal life.
For the first time Saturday night, we had a moment to process what we had just lived through. “I need a will,” he told me. A hospital staff member had asked him when first admitted if he has a last will and testament.
I had thought about what it would be like to raise our child alone, if something terrible were to happen. I thought about how unhappy he would be if he was unable to walk, unable to run around the field with his players or take his dog outside. All of these fears, I finally had the restful moment to share with him.
I learned that sometimes our pride and fear of judgment or hesitance to challenge authority prevent us from listening to our inner wisdom. Andrew’s didn’t, but mine may have. I admire him for that.
I learned that the feeling of invincibility we carry over from youth often prevents us from preparing for what could be. No will. No life insurance. No Plan B. All of those seemingly grown-up things that we always thought we could wait on now seem urgent.
I learned that our bodies are imperfect machines, and sometimes they malfunction. Though medicine is advanced, much of what happens to us and why is still a mystery. Cue Robin Williams whispering “seize the day” here.
I learned that donating blood does matter and makes a very real difference in people’s lives. My mom is a regular donor. I try to be. But we have thousands of blood donors to thank for gifting Andrew with the immunoglobin that saved him from his own malfunctioning system. I will always, always give blood because of it.
I learned that our families are amazing, swooping in at our time of need. Cooking, cleaning, pestering the nurses again and again. They brought sanity to an insane situation.
And I learned that I love my husband and he loves me, and to live without each other would be impossible. While he felt distant and alone, isolated from our everyday lives, I was overwhelmed by everything that needed to be done. Household chores felt like they didn’t just double but tripled. Everything felt challenging, cumbersome and pointless. How could I bother responding to emails while the person I care most about lies helpless in a hospital bed? What difference did it make if I remembered to cancel our dentist appointment or not? Or if I forgot to check the mail?
We know life goes on, and it will, and we will return to normal eventually, but this week — this test of our will, our strength, and our marriage — is a part of us now. It always will be.
About Us
We are young and just starting a family, with a baby due in December. Andrew has always, always been physically active. Formerly a football and rugby player and now a coach, he runs and hits the weights regularly. That’s why when, at the end of June, he began to feel strange sensations in his feet, we were surprised. And as the tingling sensation and numbness continued to spread — quickly — we were concerned.
Only five days after his first symptoms appeared, a neurologist diagnosed Andrew with an autoimmune disorder called Guillain-Barré Syndrome. Two days later, he could not walk.
We were fortunate, though. Andrew’s insistence that something was wrong led him to return to the hospital three days in a row, something I don’t think many people would do. Because of that, he was diagnosed early, received early treatment, and avoided the horrifying and quickly-spreading effects that this rare syndrome can cause.
It has been a difficult journey, and it’s not over yet, though each day gets better. His recovery could take weeks or months, and there are some side effects that may never go away. Yet even if he does make a full recovery — and we have every reason to believe he will — our lives are forever changed because of it.
Michelle Balmeo 