Patient Stories

My GBS journey started on April 29th of my 60th year. I received my 2nd COVID vaccine shot the day earlier with no complications. I cut the grass and walked with my wife. I went to work the next day, but didn’t feel right so my boss sent me home. I went to bed figuring to sleep it off, but couldn’t sleep. I panicked when my arms and hands started to go numb. I thought I was having a heart attack so my wife took me to the local ER. After many tests, they released me and sent me home. I was back to same ER the next day when my primary DR noticed my speech slurring and face drooping while on a telehealth appointment. I was still able to walk into the ER, but lost feeling in my legs and fell once I got there. They admitted me to the hospital for neurological testing. After multiple MRIs, a heart catherization and a lumbar puncture, I was diagnosed with GBS.

I underwent 5 days IVIG treatment in the hospital. I was anxious about the first IVIG treatment so I was given Ativan to relax me. The Ativan gave me hallucinations all night and I woke to angry nurses and an electric monitor robot in my room. My voice volume diminished while in the hospital to the point I could barely be heard. I couldn’t walk or use my hands. I was transferred to Moss Acute rehab in Philly where I remained for nearly 7 weeks. My voice returned quickly with speech therapy. I worked hard to do physical and occupational therapy and my therapists were a great combination of cheerleader, coach and drill instructor. When I left Moss Rehab, I was able to dress and feed myself and walk using a walker. My best therapist by far though was my wife.
Because of COVID rules, my wife was only allowed to come see me on odd numbered days. While juggling work, house chores and everything else, she would bring me different things for my hands to work on my fine motor skills. At night, she would read through material she found on the GBS/CIDP Foundation website and tell me about what she read. I focused on the things that I couldn’t do; walk, drive, button a shirt whereas she focused on the things that I would do to get back what I lost. I don’t know where I would be without the love and support of my wife.

Once home, I started in-home OT and PT. I moved to outpatient therapy for both OT and PT. I quickly added strength to my legs that allowed me to do stairs, walk with a cane and then walk without needing a cane or leg braces. My hands didn’t cooperate as much as my feet and legs. Although stronger, I still lack feeling in my fingers and finger tips that make most fine motor activities very difficult for me. My outpatient PT now focuses on balance rather than strength. Most of my outpatient OT still focuses on strength for my hands. My wife supplements the OT activities with many tricks and things she has used in her classrooms throughout the years.
Nerve pain has been one constant throughout this journey through GBS recovery. The nerve pain medication has managed pain in my feet and legs pretty well, but doesn’t seem to help my hands much. I have good days and bad days with the nerve pain, but I try not to let it stop me from doing anything. I’ve tried CBD cream on my feet and hands with some limited success.

I’m now 8 months out from my GBS diagnosis. I can walk and climb stairs without assistance and without my leg braces. My balance still needs work. I’m getting more movement with my feet so hopefully driving may be possible soon. I have more strength in my hands, but still lack feeling in my fingertips. Buttons are my new mortal enemy. I hope my healing isn’t complete, but I still worry about how much feeling I will get back. So I press on and keep working and hoping.