What did you say I had? And how do you spell it again??

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On November 9th I went to my parents house to fix their computer and felt fine after getting over a nasty head cold that made the back of my throat feel exceptionally raw.  The next day I drove my son to school and felt like my feet were asleep for some reason.  I disregarded it and continued with my day, by lunchtime the numbness had spread to my head and hands and legs and arms I was talking very nasally plus I was feeling dizzy. My wife came home a little early and she brought me to urgent care in Stillwater.  We thought I might be having a stroke.  The Doctor did some physical tests (tracking with eyes squeezing hands etc...) to check for stroke.  They also tested me for strep and everything came back negative.  They said it was probably an inner ear thing and sent me home with instructions to take some sinus medication and use a humidifier.  I did all that and disregarded my parents request to go to a different hospital, I figured the Doc was probably right and did what they told me. 

The next morning I woke up and felt fine, not as numb as the day before, I got out of bed and took a step, my legs were really jerky and my dizziness and numbness came back immediately.  I said "oh shit" to myself and it was way more nasal than before.  I was scared and went downstairs and called my wife who had left for work for the day and told her to come home and take me to United Hospital in St. Paul.  I took a drink of water and the water ran out my nose, I called my boss at work and said I was not coming in again (the message was horrendous because of how I was talking- I really thought I was having some kind of stroke).  When we arrived at United, they did some tests and said I was very attaxic, my vision had started to go (the world looked like I was looking at it through a blurry kalidoscope).  They took me in for an MRI which came back negative for stroke (I thought thank GOD for that).  They then said they were going to do a spinal tap, they gave me a shot of versed and I felt the needle going into my back. 

The next thing I know I am in New Mexico and we are looking for a Doctor someplace in the country to help me with my issue (which we still do not know what I have).... I'll stop there and just say I was in an induced coma and intubated at United, I was having a very vivid dream, it was very real to me, I remember all of it and the story is incredible and traumatic (but would make this story 8 times longer, so I am leaving it out for brevity), lets just say that when I finally woke up and realized I was still at United, that I was scared to death of my wife (she had left me for another man and he wanted me dead, I thought we had lost our baby (she was pregnant during all this) and I had lost my house, all my dogs and cats, and my job and was never admitted to United.  None of this was true thank god). 

I woke up to my wife sitting over me there was a smaller image of her exactly one half her size that was doing it's own thing, at one point while she was sitting and reading a book, her smaller self came over and sat on her lap and started reading the same book (I was seeing double and still hallucinating from the drugs they gave me so a lot of times the right image was upright and the left image was off to the left and leaning further to he left at an angle, sometimes my brain would incorporate the other image so it looked like it was normal - like one of the balloons I got was coming out of the blinds in my hospital window).

I could not talk because they had trached me ad they had me in a vent the entire time I was under, I stopped breathing the day after I was admitted. They said "You have Guillian Barre Syndrome", I moved my lips to them saying "What did you say I had?  And how do you spell it??".  I was completely paralyzed and dying of thirst.  My tailbone, feet and legs were in crushing excruciating pain. 

My dreams were extremely vivid and I would wake up thinking I was still in my dream, I had to use my hospital bed as a constant.  One night after my arm movement had returned, I had pulled myself out of my bed (I thought I was in a friends basement and was having trouble getting out of a cot I was lying in, I hit the floor and was still mostly paralyzed, my head hit the floor with a horrific crack, I yelled for help (still thinking I was in his basement and nurses from united ran into the room I thought I was in, the room slowly returned back from my friends basement to the actual hospital room I was in, I was lying on the floor next to the bed. 

A few days later, they gave me a valve in my trach so I could talk.  Not long after this, my wife had contacted the GBS CIDP foundation and they sent out a nice young man to visit me in the hospital. He said he was diagnosed with GBS in 2013, he told me he had completely recovered within a year, he looked fantastic and like nothing was wrong with him. He really gave me hope when I was completely hopeless.

On Dec 9th they took me off the ventillator. On Dec 12th they finally removed my trach, I could talk naturally again and it was fantastic.  3 days later they moved me to Physical Therapy at Courage Kenny on the 8th floor. 

I was still unable to stand on my own, but I could sit up with assisitance for up to a minute at a time.  1 week later I was able to stand unassisted and take a few steps in the paralell bars.  A week later I was using a walker and able to go over 100 feet with assistance.  I still could not swallow and was still not allowed to drink water or eat.  I had lost over 40 lbs since I was diagnosed.  We had Christmas Eve at the hospital, my Mom and Dad came to visit, my Brother and his family wanted to come, but they were all sick - they stayed away to keep me safe. Later that night my cousin and her husband came to visit, I kept running out of gas way faster than I used to, the fatigue was a real bitch. ould not keep my eyes open, I The week between Christmas and New Years, I had finally passed my swallow test and was able to eat and drink again. 

On New Years Eve, they let me have an overnight pass to go home.  Being home again was wierd and my Dogs were totally freaked out by this thinner former shell of their master.  They eventually got used to me.  The steps at my house were a real challenge and I still needed to use my walker, I wore an eye patch because I was still seeing double.  The next day I had to go back to the hospital, returning back to the hospital knowing I was going to need to stay another week really sucked after being home, I did not want to go back to the hospital I wanted to stay home. Regardless, I was finally discharged from Courage Kenny inpatient on Jan 5th (3 days ahead of their innitial discharge date!) I was thrilled. 

Being back in the real world was strange, but I started to adjust. I still had issues with fatigue and weakness. One of my best friends who had been helping me out a LOT during all this came over and helped me put in some new spot lights that had burnt out on my house outside, stepping out of my garage (down about 12 inches to the sidewalk from my garage door) and I went straight to the ground - I was without my cane (my fault) - and I hit the concrete, not too hard but enough to make me realize I had a ways to go before I could do that again. My friend helped me to my feet and I went back inside a little discouraged.

I had a home care nurse and PT and OT therapist come to my house for two weeks. They quickly discharged me because I was making such rapid progress. I did the 4 square test in 8 seconds and was able to go up my stairs using reciprocating steps without the railing 3 times already! He said I could ditch the walker and just use a cane! I only used my shower chair once, on the 20th of January, I sat up in my bed and looked at my TV which was still on after I fell asleep. I was watching it for 5 minutes before I realized I was watching it without my eye patch and only saw one image! My vision had returned to normal! At first I could only go about 1/2 a day without my eye patch before I started to get headaches and my double vision would return and had to put it back on. A week later, even that had passed.

The second week of February I had started my outpatient therapy at Courage Center in Stillwater. My OT therapist performed a community safety screening and had me use the Dynavision board (the same I had to use at Courage Kenny at United Hopsital). I blew my old score out of the water and scored perfect on all tests - they even told me I probably broke the Courage Kenny record with a score of over 430 during the 4 minute endurance test! I was cleared to drive again! As I write this I am sttill waiting to be cleared to go back to work but I am sure that will be soon.

Remembering the young man from the GBS CIDP foundation made me decide I wanted to give back the same hope to others I was given, it really got me through a dark period of my life. I joined the foundation. If you are reading this and have GBS and are in the hospital and live in the Twin Cities or Western Wisconsin and need to talk to someone who had suffered through this, contact me either through this site or through the GBS CIDP foundation and I will be happy to come out to visit you!

 

God Bless You All!

 

Chase