The rest of the story…

Elayne,

Not only a lot of faith – But I had a very strong will and positive attitude to overcome whatever I had. The trache was removed first, then I could move a little finger on my left hand…and I spent all day, with all the energy I had just moving that one little finger, then more fingers on the left hand, then the left arm…then the right fingers, etc. But my legs weren’t doing nearly as well.

The day they strapped me on a tilt table, after laying flat on my back for about 3 months, and started tilting me upward – my body felt like it weighed a ton…and I asked myself if I would ever walk again…for the first time I had doubts. But afterwards, laying in my bed, I said that was just an obsticle – and it may take time, but I would get over it, and over it I did get. Then I started to get more movement in my legs. In mid April we went to the parallel bars, but with 2 therapist trying to help me up…never made it. For the 2nd time I had doubts, and I ask myself if I would walk again. But, just like the last time, I viewed it as an obsticle – it may take time, but I would get over it, and within about 2 weeks I was walking the parallel bars – and finally finished the bars onto a walker just 2 or 3 days before I was released to come home in May.

I continued out patient therapy 3 days a week – and soon was walking with quad canes, and by the time my therapy was up in mid August, I could walk about 300 feet with quad canes. Then it was self-therapy. I set-up a work out plan for 1 hour each morning with 2 10 lb dumbells with my arms, and in the afternoon 2 hours walking – I lived in the country and had a paved driveway that was approx 200′ long…so, I walked up and down my driveway. First with the walker, then with the quad canes, then with a cane. I finally got to about 2-3 miles in those two hours, but still, my legs just didn’t have the strength they should have.

I had enough dexterity in my fingers to punch type, and started doing research about GBS, flu shots, etc. I was reading one article that stated if progress was not being made, and if a GBSer had never had an IVIG treatment, it should be tried. Well, I had GBS, had never received IVIG before, was not recovering well, and I wanted a treatment – my doctors wouldn’t listen to me, I wrote a letter to the neurologist (that misdiagnosed me) and my pcp’s – telling them that I thought I had CIDP and I wanted IVIG treatments….I never even got a phone call. So, about a month later I made an appointment on my own at a University Hospital (UofL) Neurology. After doing NCV/EMG test, they confirmed a dx of CIDP and started me on IVIG. My leg strength progressed immediately, but from about 40% to 65%. That is about as good as it will get because of the axonal (nerve cell) damage.

But, I can walk unassisted, mow my grass, and come and go as I please. I do not have 100% balance though, and the Transverse Myelitis caused major bladder and bowel dysfunctions – I have control, but severe dysfunctions.

But I am blessed to be able to do the things I can do…all things considering. And, if Rosemary had taken the advice of doctors – I wouldn’t even be telling you this story.:rolleyes:

Jethro