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Recovery and Gratitude

One Year Ago I Lost the Ability to Move from the Neck Down and Here's the Story of my Journey to Recovery

By Andy Johnson III

August 12^th, 2023

This week marks the one year anniversary of my startling encounter with a rare disorder called Guillain-Barré syndrome. In less than 36 hours I transitioned from living life as normal to unable to move from the neck down. Although my full recovery is ongoing, I'm grateful to say that my day-to-day functionality feels normal and all that remains is the ability to regain the ability to run and jump. Over the past few weeks I've been able to start standing on my tiptoes just a little, an encouraging sign that my strength continues to improve!

Since it has now been one year since this life changing event, I decided to finally try to write up the whole story. I wrote up the first portion of this story while I was still in the hospital and after my fingers have recovered strength. It's now time to share the rest of the story.

From Normal Life to Unable to Move

It was an unfamiliar sensation in my fingers that first caught my attention. We had just returned home from an anniversary party for Bethany’s aunt and uncle in Wisconsin. Feeling completely fine, I enjoyed the party, pushed my daughter and niece on a swing and drove the family home with no idea of how life was about to change.

I first noticed the stiffness in my fingers because I wanted to get some work done on my computer. As I worked on a report I found that my fingers lacked their typical dexterity making it difficult to type. I also noticed when I walked up the stairs that my legs felt a little more weak than usual but this was easy to dismiss as simple tiredness. Bothered by the sensation in my fingers, I wondered if I had drank too much coffee and not eaten enough for the day.

After dinner, my fingers felt the same so I decided to focus on putting the kids to bed and then to try sleep it off. I instantly knew that I was losing strength when I had to grab a dresser to help me stand up the next morning. Struggling to button my shorts, I told Bethany that something was very wrong. I walked tentatively into our dining room and paced back in forth feeling slow and unstable. I tried to jump or run with no success.

When I sat down for breakfast I couldn’t even hold my fork correctly relying more on my thumb and index finger since the other fingers were already beginning to curl up. I walked upstairs to get my computer bag and had to use both arms to brace myself on the railings.

Bethany‘s mom was thankfully in town and came over quickly to watch our children as we prepared to leave. Bethany did a quick Google search for the best neurology hospitals in the Twin Cities and concluded that the place to go was Abbott Northwestern Hospital in Minneapolis. There are many reasons to be grateful for that choice.

I walked into the emergency under my own power. My condition perplexed the emergency room doctor and he spent some time researching it. The symptoms didn’t seem to line up the way he expected so he suggested that we go home, rest and return to the ER if I got any weaker. Bethany and I looked at each other unsure if it was a good idea to leave the hospital. As I got out of bed, got dressed and prepared to leave, I took a step to the side and collapsed. The nurse in the room saw my fall and said that she didn’t believe I should be going home so she was going to talk to the doctor. In retrospect, this fall probably saved us from an ambulance ride and delayed treatment as my condition declined rapidly.

Everything accelerated after a neurologist came to ask some questions. My room was a revolving door of doctors and nurses asking me questions, ordering tests and assessing the declining function in my legs and my hands. The EKG confirmed that my heart was fine. The infectious disease team wanted to know all about my travel history and especially about the rotavirus that I contracted during my trip to Uganda in May.

I walked to the bathroom with a walker and fell again when I tried to step away from it. The nurses had to use a sling to get me up and back into bed. This is when I realized that it would not be safe to try to walk any more.

By Sunday evening my left leg could no longer move. The MRI that evening was the longest three hours of my life, scanning my brain and spine. They offered to play music from YouTube so I requested my current favorite band called Bears Den. I counted songs to try to figure out how much time was left. One of the first songs to play is called Elysium and it features a line that has stuck with me ever since. “Just hold out against the night, guard your hope with your life.”

I was clinging to hope that I would one day be able to hold my children again. Having never heard of a condition where one recovers from losing the use of the extremities, it was hard not to imagine the worst case scenarios. After the MRI I lost the ability to move my right leg. With my hands declining fast, I struggled to send a few text messages and knew that I wouldn’t be able to use them much longer.

I had brought a Field Notes notebook and pen from home in case I would no longer be able to write. Sensing that this was coming, I asked the nurse to hold the notebook for me as I tearfully wrote a letter to my children and to my wife. By morning I could no longer move my hands. In 36 hours I had gone from living my life like normal to unable to move my body from the shoulders down.

After what felt like the longest night of my life, a Nurse Practitioner named Anna walked in and said, “We think we know what’s happening.” I held my breath as she said, “We believe that you have Guillain-Barré Syndrome. The good news is that you are going to recover but it will get worse before it gets better.” Tears of gratitude and relief streamed down my face. I would recover and for now that’s all I needed to know.

Facing the Diagnosis

Tears of joy that my condition was treatable, gave way to concern as I processed what it might mean for my health to continue to decline for another 1-2 weeks. It was Monday morning, August 8th, and I had just been diagnosed with Guillain-Barré Syndrome (GBS). Over the past 36 hours I had gone from a normal Saturday afternoon with the family to flat on my back and unable to move from the shoulders down. Glancing up at the calendar in the room, I calculated the target dates for my condition to stabilize, hoping and praying for the best.

Dr. Young, the attending neurologist, explained to me that GBS is a confusion within the body that causes one’s immune system to mistake the proteins in the nerves with a virus that it’s sending antibodies to attack. This autoimmune attack on the nerves damages the peripheral nervous system often starting with a loss of strength in the hands and feet that spreads throughout the body.

It doesn’t really matter what virus caused the condition, he confirmed, since people have come down with GBS from many viruses including ones as simple as a common cold or even a flu shot. Confirming that I had just been through a sore throat and a cough the week before, he explained that whatever the virus was that I had been dealing with would likely have been the catalyst for my condition.

There’s no way to test for GBS so you have to look for similarities to other cases and rule out a range of related conditions with testing. Every other initial test, including the scans of my brain and spine, came back clear. What a relief to know that my condition was treatable and that I would eventually get back on my feet!

Thanks to the quick diagnosis, we were able to start the treatment for GBS on Monday morning. Intravenous Immunoglobulin Therapy, or IVIg for short, puts donor antibodies into the body through an IV. The donor antibodies go on a peacekeeping mission, binding themselves to the attacking antibodies and neutralizing their fight against the nerves. The impact of IVIg treatments can begin to make a difference within a few days but takes around 21 days to take full effect.

My mother came to visit on Tuesday and I’m so thankful for the week that she spent with me during the hardest time when I couldn’t move. The nights were long and I slept poorly, spending most of the time longing for 8 AM when visitors could arrive. Every morning, she walked in right at 8 AM, caring for me, managing my nutrition, and showing love in ways that caring mothers do best.

The nerve pain in my hands and legs became a constant challenge over the next few weeks. If you’ve ever slept on your arm and woke up to find that you couldn’t feel it, while you wait for feeling to return there’s usually an awful tingling like pins and needles with a numbing feeling in the arm until the feeling returns. This is the closest comparison I can make to my persistent nerve pain. I often felt that I was vibrating with electricity. One interesting sensation was that when somebody would touch my hands, it would it would make them feel normal to where I could feel my fingers without nerve pain. When visitors held my hands, it relieved the pain and meant the world to me.

From Monday through Wednesday I began to feel my breathing getting weaker. The doctor had warned me that since GBS often affects the diaphragm, it would be probable that I would need to go on a ventilator given my rate of decline. We asked our community to pray that my breathing would hold up so that I would not need the ventilator.

Bethany brought our children to visit on Wednesday so that they could see me while I was breathing on my own. When Havana walked into my room, she said, “Dadda, where’s your owie?” I explained that she couldn’t see my “owie” because it was inside me. Seeing Bethany and the children encouraged me with playfulness and love during a time of such gravity.

On Thursday, Melissa, the Nurse Practitioner for neurology, walked into my room and said, “You know, your symptoms haven’t changed much over the last three days. I’m thinking that maybe you’ve plateaued.” This was the best news I had received since I learned that my condition was treatable. She confirmed that if my condition didn’t decline over the next 24 hours, we could begin to focus on the next stage of my recovery. Hope and gratitude welled up within as we waited to see what good news the next day would bring.

Signs of Hope

While trying to comprehend the impact that this illness would have on my family, I asked the doctor how long they thought it might be until I could do something as basic as sitting up and typing on a computer keyboard. Time takes forever when you are waiting for something that feels so incredibly important and yet the doctors can't promise a timeline that they don't know. The doctor told me that although it was impossible to know how long it might take, it could be at least 3-6 months before I would type. It was in the midst of this uncertainty that small signs of hope began to emerge.

One of the first hopeful signs is that my breathing strengthened to the point where the doctors no longer discussed the possibility of me ending up on a ventilator. This was a huge answer to prayer, due to the additional impact that this process can have on recovery. One morning Melissa told me that the first thing she did every morning she came into work is to check to make sure that I had not been sent to intensive care for breathing assistance. I was so grateful for her care and concern!

During this time when I could not move, I felt so needy and wished that I didn't have to ask for help with everything. Nigh times were especially difficult as I could not sleep or move to adjust my position. Over and over the nurses would come in to help out, assuring me that they were happy to do so. One of the nurses named Hannah asked me one evening about what I did for work. As we talked about our experiences abroad, the personal connection made me feel less like a helpless patient and more like a human again. My experience with the nurses there gave me so much more respect for what they do and for the compassion that they show to so many people while caring for them.

On August 13th the neurologist noticed slight movement in my upper leg and that my triceps were starting to flex. We were encouraged by these small improvements. She also observed that since I hadn't lost my sense of feeling, this could indicate a quicker recovery of my motor skills. Occasion physical occupational therapy visits helped so much during this time since my lack of movement was starting to make my muscles tighten up causing severe especially around my lower back and hips. I reached a point where I simply could not sleep at night, getting only 15 minutes of sleep several nights in a row before I started requesting to be moved to a wheelchair where for some reason I could doze off and sleep a little bit more.

The next day an occupational therapist helped to sit me up on the edge of my bed propped with arms to hold me up. I sat there for about 15 minutes tenuously hoping I wouldn't flop over but grateful to be up again. I still couldn't move from the neck down but the feeling of strength was starting to return to my quads and upper arms. I couldn't feel my stomach area at all as is typical with this condition. The nerve pain was my constant companion but also a reminder that my body was beginning to heal and that the nerve function would gradually be restored.

Wall of Encouragement

With my breathing restored, the slightest bit of strength starting to return, IViG treatments behind me, no sensory loss and the sense of feeling improving, there were many signs of hope. The pain discouraged me at times but I reflected on the idea of being brought back to life. Nerve recovery felt like going from being physically dead, unable to move no matter how much muscle was present, to restored functionality where the nerves could once again begin to instruct the body on how to come to life.

One of the great encouragements during this time was the many visitors who came to see me providing "distraction therapy". I loved visiting with people, talking about their lives and interests and sharing my own journey with them. The members of Mill City Church showed up for us in a major way, visiting me in the hospital, bringing Bethany meals and helping with needs around our house during this overwhelming time. For every visitor photo here there are several more visitors who I failed to take a picture with but each and every one of them meant so much to me!

One visit that impacted me and my outlook on the situation was with our good friend Steph. She shared about a difficult medical situation that she had faced when somebody wrote up on a wall for her the small signs of hope that were occurring along the way. She called this the "Wall of Encouragement" and used a marker to write on a door in my room some of the positive milestones along with the people who had visited me up until this point. Reflecting on the good things in life helped to improve my outlook!

On August 16th, my Mom suddenly exclaimed, "your finger just moved!" The movement was imperceptible to me but when I focused on my hand I realized that I could make the slightest movement with my fingers. This was the encouraging sign that I needed during my final day in the neurological unit before being moved to the inpatient rehabilitation center the next day.

Moving to Inpatient Rehab

The day that I moved into inpatient rehabilitation brought hope that finally moving my body again would reduce the pain that had been getting worse for days. I was at a point where when the nurses put me into bed, I had to give special instructions as to where to place pillows under my knees to keep the muscles around my waste from shooting pain. Stretching my body out straight was not possible and whenever a nurse didn't realize this and tried to move me into a normal position, it was excruciating.

In the neurology unit I had grown accustomed to a level of responsive care that was not possible for the lesser staffed rehabilitation wing. This took some adjustment and I had to accept that it was simply going to take a longer time to get the care that I needed which at this point was still to do pretty much anything. One of the occupational therapists had set up Amazon Alexa to be able to control the TV in each room and this was a great help since managing a remote was still impossible.

During my time in rehab, I developed a deep respect for the patience, skills and dedication that physical and occupational therapists bring to their work. I looked forward to my appointments each day as though I were meeting up with friends, engaging in lively conversation as I worked to recover my ability to move. Over my first few days, I could barely move hands, even less my arms and not at all with my legs. Dr. Querubin told me that the good news was that I had a 50% chance of walking within a year and this was much longer than I had previously heard. Bethany worked so hard on adjusting our home life for the uncertainties that my return would eventually bring.

Arm & Hand Strength

My occupational therapist was an extraordinary guy named Justin who made working together great fun while enabling my progress. I started off using a machine that held my arms in place and took some of the weight off, enabling to rotate my arms, shoulders and wrists while engaging in simple games that challenged me to expand my range of movement. Justin also incorporated virtual reality using Oculus glasses that immersed me into gaming systems that helped me to forget for a moment that I could hardly move while pushing me to increase my range of motion.

One day an occupational therapist named Theresa, asked if I wanted to play basketball. This sounded great to me since basketball has long been my favorite sport. I just had to laugh at myself when I realized that I couldn't get my hands to perform the basic motion of shooting a basketball that I had done since childhood. With the rim barely over my head and a few feet away, I couldn't hardly make a shot. An old friend from my high school basketball team wrote that he wanted to play me in one-on-one and I called my cousin Austin with whom I had long competed to laugh about the state of my game. I found throughout the healing process that laughing at myself, making jokes about my limitations and celebrating small victories made the whole process more fun. When we got the basketball hoop out a week later or so, I was able to make just about every shot since my hands had recovered so much coordination in that short time.

I remember the day when I could first reach up and do something basic like adjust my glasses. This was on August 20th. We thought maybe I would need to use a stylus with my mouth to type on an iPad but within a few days of receiving it, my hands had improved enough to do basic one finger typing. During my darkest days, I marveled at the complexity of the human body allowing for such basic functions as sitting at a table, sipping coffee and writing in a notebook. On September 1st, I rolled my wheelchair outside into the sun, sipped on my coffee and wrote in a notebook again for the first time since the day I first went to the hospital. This small victory is a moment I will never forget! To go from barely moving my finger on August 16th to writing in a notebook by September 1st felt like a dream. Having learned that 20-30% of people who experience GBS don't recover full functionality, it was so encouraging to experience this surge of progress.

Learning to Walk Again

Recovering strength in my legs came more slowly than my arms. When I found the slightest movement in my legs on August 20th, it encouraged me to know that recovery was underway. My lead physical therapist throughout the inpatient period was named Katy. The wisdom and skill that Katy deployed while guiding my progress was remarkable. The entire team of therapists continued to surprise me by their knowledge of the human body and what it would take for me to progress. I remember the day when it was time to start stretching my body out so that I could lay flat again. Dreading the pain but longing for the progress, I worked with the therapists and couldn't believe when a few days later I was laying flat again, able to fully stretch out my legs and with the pain I had been experiencing dissipating.

During my second full week of physical therapy, Katy said that it was time for me to start standing up. There's a progression of machines that help one to stand with decreased assistance as it's no longer needed. The first machine is just to stand you up and make sure that your body is ready for being upright again. On Monday we started with the machine that carefully supported my knees with me in a harness in case I lost strength. We then progressed to parallel bars where I used my arms to support me as I walked. After two days in the parallel bars, Katy said that it was time to progress to the next step which was a walker called the Eva which required more strength but enabled me to support myself with my arms. I went from walking two laps the around the gym the gym the first day, to four the next and then up to nine laps.

By the following Monday, I was up using a walker and then practicing on steps later in the week. When Katy told me that we would not need a wheelchair ramp at home since I would be able to climb steps, we were so relieved! The therapists couldn't believe how fast the progress was coming along and I was stunned but so grateful to be experiencing increased strength by the day.

Visits and so Much Love

During these critical days of recovery, so many people reached out to visit, touch base over a call, check on my progress with a text, and even help Bethany with needs around our house. Our distributed community really came together and this experienced reminded me that from family to friends and from coast to coast, we are loved and I am so blessed! One special highlight was visits from Bethany and the kids where we would meet up outside. Each time they came it lifted my sprit and energized me to get home to be with the family again.

Among my other visitors during this time in inpatient rehab were friends from church, old friends I hadn't seen in years, friends that I've made through watch collecting and a good friend of ours who consistently brought me delicious food. When Austin asked what I wanted to eat one evening, I told him that what I really wanted was a burrito but that I didn't know where to find one. He sent me the menu from Pineda Tacos and their California Burrito has been my favorite local meal and the best burrito I've encountered outside of San Diego!

Adam and Janelle are a couple that I have known since childhood and they drove all the way up from Indiana to help build a deck so that I would be able to get in and out of our house when I went home! What an incredibly generous gift of their time and their love! Rob from our church later came over and built the railings so that I could go home safely. Incredible!

The People I Met

The physical therapists, doctors and nurses that I encountered at Abbot Northwestern were extraordinary professionals whose care I will always appreciate. Justin and Katy in particular did so much as therapists to lead the way in my recovery and to prepare me to return home. Elizabeth was one of the nurses that took special care to take care of needs that others overlooked and Tori helped me to sneak out to get some coffee, amongst many other ways that she looked out for me. Anna made recreational therapy fun with card games and conversation. If one has to go through a health crisis, these are the kind of people that you want caring for you!

One special gift of my time in the hospital was meeting Brad and Jenny Johnson. Brad came down with Guillain-Barre Syndrome about a week after I did and we spent a lot of time together during our recovery. I loved our discussions, comparing experiences with recovery, watching football and just having somebody to connect with during this time. We would sit outside on the deck and just enjoy the September weather and a break from therapy. On the last night that I was in the hospital, Jenny brought cherry cheesecake (my favorite) to celebrate my release! What a thoughtful thing to do! Brad and I have stayed in touch through our respective recoveries and I'm so grateful for this friendship!

Going Home

On September 16th I returned home to my family with so much gratitude to be able to walk with a walker and to hold my wife and children in my arms. Bethany had prepared a bedroom for me on our front porch where I could fully access what I needed to continue the process of recovery at home until I could navigate our house more comfortably. I will never forget the sight of Havana holding the "Welcome Home Daddy!" sign as I walked slowly toward our new front steps. With my Mom there to help and so much love from Bethany, Havana and Denali, coming home was an unforgettable gift. From August 6th to September 16th, I went from living life like normal to unable to move and then back again. What a journey of recovery and gratitude!

The Ongoing Recovery

After leaving the hospital, I transitioned to outpatient physical and occupational therapy. I met with Krista mostly for 2-3 times per week through the end of January. Within a week of returning home, I began to walk short distances without needing the help of the walker. A few weeks later I transitioned to arm crutches loaned to us by a good friend and by November I no longer needed walking assistance. After my last appointment with Krista in February she noted so much progress that further physical therapy would not be necessary. Her expertise and guidance through this process helped me to continue the path to recovery.

Friends and family keep on asking if I'm fully recovered and the truth is I am not 100% there but I'm getting closer than ever. One of the limitations I've encountered is that strength in the feet is the last to return so I have not been able to do things like stand on my tiptoes or push off with my toes to jump or run. Over the past few weeks, however, I've found that I am able to start pushing my body weight up with toes again and I'm able to push off with enough strength to accelerate for short distances. Running, jumping and playing sports will come soon but in the meantime, I'm so grateful to God for healing, recovery, medical expertise and the love that I received from friends and family through this journey. I'm still recovering and full of gratitude for this experience and what it is teaching me. Health is not guaranteed but it is a gift while we have it. I'm so grateful!