It’s a long trip back…
Dear Lost Wife,
First, I want to tell your husband how lucky he is, and believe me, I do know. I will not go through all my story with GBS, but I was misdiagnosed, did not get either IVIg or plasmapheresis treatments, got another neurological disease, Transverse Myelitis, a blood staph infection (staphylococcuss aureus), a tracheotomy and hooked to a respirator, internal bleeding, pneumonia, a temperature of 107.9, BP 44/0 by Doppler, and an EEG that showed no activity. My wife, Rosemary, was told to make arrangements for a post-mortem. But she did not make those arrangements. And I can safely say that my two pcp’s, and the two neurologist did not have a clue as what they were doing, how to diagnose, or how to treat me. I was totally paralyzed and the only thing that worked on my body was my eyelids – I could blink, and that is how I communicated for about 2 weeks, then I went into a coma – That was on Jan 5th 1997, and I don’t remember anything until Jan 30th 1997. But I do know my wife saved my life at least 2 times!
After 5 weeks in the Hospital ICU, I was transferred to the Rehab floor of a nursing home, still totally paralyzed and on a respirator. After approx 4 mos in Rehab I was released to come home…and could walk about 30 ft with a walker. My legs/feet were in severe pain but I had no medications. I continued Rehab 3 x a week as an out-patient for another 4 mos, and could walk with quad canes about 300 ft. From there it was self therapy. Long story short, the GBS went into CIDP, and I started IVIg treatments, was put on neurontin for the legs/feet pain, klonopin for my chronic back problems, and topomax for my axonal nerve damage.
As a man that came out of a coma, I knew I was alive, but barely. I have always had a strong will to accomplish or overcome anything. It didn’t take long to acknowledge this would be the biggest obsticle I had ever faced, but I sucked it up and went after it head on. I kept a possitive attitude, a strong will power, faith that God would give me the strength to survive and overcome, and a strong love and sharing relationship with my family.
When I got home I set a schedule that I did every day: 1 hour every morning working my upper body with two 10 lb dumbells; 2 hrs every afternoon walking up and down my driveway (paved, 200 ft long), first with my walker, then with my cane. Then I broke my right ankle – a two month set back.:(
Today, I get regular treatments of IVIg; lyrica 150mg x 2/day; cymbalta 60mg x 1/day; topomax 100mg x 2/day; klonopin 1mg x 4/day; (no neurontin); and OTC drugs; omega 3 (fish oil); vitamins B-12 and B-Complex. I do take three more meds for my heart (Inderal, isosorbide, plavix).
During these past 13 years I have learned that a strong spiritial and family love will heal, restore, and protect life more than anything else on this Earth.:)