Sunday, September 29, 2013

Message from Scott

Scott wanted to reach out to everybody and asked me to type a message.

I wanted to start by thanking everyone for the amazing outreach and support.  Katrin and I are truly humbled by the generosity of both friends and strangers.  I read about Guillain Barre Syndrome before I was even diagnosed and I knew if I held out and did not lose my respiratory function that the recovery could be pretty fast, but now I know I have a long road ahead of me.   I was never so scared as the day they decided to intubate me.  It was my worst nightmare coming true.  It was a rough three weeks in Kansas City.  Thankfully my mind has blocked a lot of that out and I don't remember all that much.  I feel like that was not me in Kansas City, but a sick sick person.  On a good note I have come to Madonna Rehab in Lincoln, NE and they are changing my life. I am getting great physical therapy, occupational therapy, speech therapy and respiratory therapy.  I am finally comfortable with sharing a picture of me.  Up until this point I could not stand to see myself in the mirror as I looked like a very sick person.  For those of you who do not see me on a regular basis.  
Here is a picture of before and a picture of me after I have lost 50lbs (Those are Katrin's sunglasses. She made me wear them, because I was going outside for the first time in over 6 weeks).

I have a long road ahead of me, but I am a very motivated person and I am going to walk out of here.  My motivation is my beautiful wife and my kids.  They visit every day and Hannah has become an honorary nurse (she is very known around the unit).  Even though I cannot smile at them (my facial muscles are still paralyzed),  hold Evan or chase Hannah around I still feel like I am finally a part of their lives again.  Katrin and the kids live in an apartment just a few miles from the hospital.  Katrin does an amazing job splitting time between the kids and the hospital. 

I am hoping to walk again by November or December.  My voice is stronger every day and I have almost full range of motion in my arms.  Unfortunately my hands have not come back, which is really hard for a guy that texts a 1000 times a day.  My quads have woken up, but the rest of my legs have not.  It's amazing they can stand me up in a frame and I cannot tell if my feet are on the ground or not.  I have absolutely no feeling. 

In the end with an amazing family, amazing siblings, dedicated parents and great friends I will walk again and the old Scott will be back.  


  1. This is such a great update!! So good to see you sitting up! We continue to pray for your recovery and for you to walk out of there somer than you can hope for!!

  2. Hang in there Scott! Keep up the fight! I just learned of your story and you will be in my prayers. Your family is beautiful and so blessed to have you.

    Sending prayers from Texas~ Melissa (Huber) Buchan

  3. What an amazing story you have! You are such an inspiration to those around you. Keep up your hard work and know that many prayers are being said in GC!
    Continued blessings....
    jane krug

  4. You are amazing Scott Clubine! I had no idea this was even going on until today. If anyone can do this, it's you.
    Know you and your beautiful family will be in our thoughts every day.

    Much Love! Kellie Dagestad & family