Patient Stories

Alan’s Story

I am not sure where to start with my GBS journey, so I will begin where my family’s life was changed forever.  It was Memorial Day weekend 2013; I had just got back from a week’s vacation to Destin, Florida.  I was sitting on my dock watching the grandkids ride their jet ski.  I was talking with my daughter and told her my feet felt funny, like they were asleep.  Neither one of us thought about it being a life changing sign.

On Tuesday May 29, 2013 began as any other normal day, I got up fixed my coffee, grabbed my newspaper, kissed my wife bye as she left for work and I sat on my screened in porch enjoying my morning.  I was babysitting my youngest granddaughter so we had planned to work in the garden.  I didn’t really notice anything different at the time but within a few hours things would begin to change.  We take care of an elderly neighbor and had someone doing work at her house.  The guy working came to get paid and that is when I noticed that something was wrong, I couldn’t hold a pen to write him a check.  I immediately called my son to come take me to the hospital fearing I was having a stroke.  We met my wife and daughter at the hospital.  I was able to stand and get in a wheelchair.  We waited for several hours before being seen, my blood pressure was increasing the longer I waited along with excruciating pain in my back.  I just wanted to go home and lay down, finally getting into a room wasn’t much better since they dropped me trying to get me into a bed.  I had lost all control of my lower half in a few short hours.  They immediately got the doctor who in turn called for a neurologist.  He examined me and told me he felt strongly that I had an autoimmune disease called Guillain-Barré syndrome.  He told us most are not life threatening but it could cause me to be on a ventilator if it went higher than my waist.  Sadly enough within the next few hours mine took over my whole body and I was on a ventilator scared for my life unable to communicate.  My family was all there by my bedside as scared as I was.  I could hear and see them but couldn’t help.  From here it all went black for me.  I was given the Immune Globulin Intravenously (IVIG) for 5 days.  This is the drug that is supposed to clean all the bad antibodies out that were attacking my system.

Next journey from what I told was a bumpy one; I was what they called “Locked In” for 9 days.  My family struggled not knowing whether I was in there or not.  They doctors ran all kinds of test and found that I did have brain activity, which meant I was still there.  This gave them hope.  I lost all track of time but once I gained enough sense I made out what everyone was saying.  From this point I thought I can’t live like this, I will just shoot myself.  Then I thought how could I do that, I can’t even hold a gun.  I began to talk to the Lord.  I told him Lord I have followed you all of my life and if you will just help me get through all of this, I will continue to follow.  I knew that only God himself could get me through all of this.  My daughter tried to document with pictures and videos my journey through all of this.  She has the first movement of my head on the 10th day in the hospital.  This gave my family hope that I was coming back.  From here they would notice little changes every few days, by the end of the 30 day stay I was able to open my eyes and move my head.

However still on a ventilator I had to leave the hospital for a Long Term Care Facility.  This was another challenge because there are so few hospitals that take vented patients.  Let’s just say that the lack of good medical care for these types of patients is sad.  My family had to hire someone to sit with me during the day and night because I didn’t have a way to communicate; they came every day after work.  My wife was so very strong through this all the while being diagnosed with Breast Cancer two weeks after me being admitted into the hospital.  I stayed in this facility for another 30 days.  I was then transferred to a Nursing Home Facility that wasn’t any better.  If it were not for my family insuring I get the best care I am not sure where I would be.  I feel so bad for ones that go through this without family support.  I stayed here about 4 months. While here I was able to finally come off the vent and was able to communicate and learn how to swallow all over again.  Every day was a challenge but I thanked the Lord that he had brought me this far.

Finally on October 5, 2013, my journey took a positive note and I was able to move to Siskin Rehabilitation Hospital.  I knew the only chance of me having any type of recovery was to get the most aggressive therapy available.   This place is amazing and I could not say enough great things about it.  The doctors and therapist were eager to get started with me and made me feel like I could conquer the world.  I worked from 4 to 6 hours a day doing all the different types of therapy.   This may have been the hardest and most rewarding job I have ever had to do.  There were days I was so tired and wanted to give up but between the Lord, my Siskin family and my family I made it through.  After 2 months I was able to go home.  I was still in a wheel chair but I could talk and sleep in my own bed.  It was still a hard journey but I continued with outpatient therapy for a year.  I also joined the gym and was able to work out on my own time.  I was even able to swim, which was wonderful.  Siskin Rehab Hospital now has a separate wing that admits vented patients; this is a lifesaver for some people.  You can start your therapy as soon as you’re admitted.

My life now is a new normal.  I have graduated to just a walker but am working just as hard to move to the hand canes next.  My hands and feet are not 100% back but I working very hard to be 100%.  I am not going to say any part of this was easy but with the Lord and my supportive family, extended family and friends I have began to live life again.  All I ever wanted to do was enjoy my retirement with my family and grandkids.  I am slowing getting to enjoy this again.