In Their Own Words

In each issue of the Journal, we will bring you a column that presents the experiences of our members.  Their stories are presented In Their Own Words by way of letters they have sent us.  We are most appreciative of their willingness to share their very personal stories.  It is our hope that through the sharing of these experiences, we will all learn something about each other and about ourselves.  It is our hope that the stories will help us all realize that we are not alone.  We are particularly grateful to those people with Acute Disseminated Encephalomyelitis who wrote articles for this publication of the Journal.  You may submit your stories by sending them either by e-mail or through the postal service to Sandy Siegel.  Please be sure to clearly state that The Transverse Myelitis Association has your permission to publish your article.

Don R. Batchelder 
Florida
My Transverse Myelitis

When I was 70 years old, I was diagnosed to have Transverse Myelitis.  It left me very weak from the belly button down.  I went to bed healthy and woke up unable to walk.

Before I go on about my sickness, I thought it might be worthwhile to provide a little background.  When I was a small child, my Father was an invalid.  After going to Mayo Clinic in about 1935, they determined my Father had Multiple Sclerosis.  He weakened very slowly, never loosing the use of his upper body and remaining mentally alert.  Dad was in his early 60’s when he died.

It is amazing how similar my TM is to my Father’s MS.  Maybe they hadn’t even heard of TM when my father was diagnosed.

Back in 2001 when I woke up and couldn’t walk, it was my right leg that was bad.  Just a few days later it affected my left leg also.  My wife and I went to Mayo Clinic and Johns Hopkins, and they confirmed that I had TM.

The good part about my TM is that with strong arms I could use the walker and get around.  But I could only sit for a couple of hours before my bottom hurt.  It would feel like I was sitting on a bunch of marbles.  When I lay down in bed my legs are very uncomfortable and after a couple of hours they feel very cold.  Before going further, the following is a brief synopsis of my onset:

My wife and I took a trip and drove a few hundred miles.  I got a sore throat and went to a medical center in Fort Wayne, Indiana; they gave me a shot.  We drove home 300 miles to Bradfordsville, Kentucky, and I went to bed. I got up the next morning, and couldn’t walk; my right leg was numb.  I went to my doctor in Lebanon, Kentucky, who put me in the hospital. They ran tests, and then sent me to a neurologist in Lexington, Kentucky. On September 11th 2001 it was determined that I had Transverse Myelitis.  My arms were not affected, so I was able to walk with a walker.  I couldn’t sit for two hours without the feeling of sitting on marbles.  I scheduled a visit to Mayo Clinic and they confirmed the TM diagnosis.  I found out about the TM program at Johns Hopkins.  I went to Johns Hopkins and they reconfirmed TM.  There is no known cure for Transverse Myelitis.

I had retired and my wife and I lived on a 350 acre farm in Kentucky.  With a little help hooking up equipment, I could pull myself up onto the tractors and put in a good days work mowing the fields or whatever was required.  My biggest problem was that I had always been a workaholic and a big eater.  Little by little I was gaining weight.

I bought an ATV so I could check the fences and other parts of the farm.  Then one day after a storm, when I was going up a steep hill, there was a fallen tree across the path.  I couldn’t get around the tree, so I tried to back up and turn around.  As I became sideways to the path, the ATV rolled over on its side, and landed on my left arm.  It was a simple fracture of my left humerous.  I was taken to the local hospital in Bradfordsville, Kentucky.  The doctor put a pin and four screws in my arm. After a couple months, I was getting around again, but not as well as before.

Being off my feet for a couple of years was not good.  I was constantly gaining weight.  In fact by now I weighed over 400 pounds. 

Late December, 2004 my wife and I moved to Florida.  Up until now, I was able to get along with my TM and still get around.  But now a new problem exists.  With the broken left arm, I can no longer get around using my upper body strength and the walker.  With a pin in my humerous bone, it didn’t take long until I was able to put some weight on my left arm.  After four months, things were looking good.  But in the 5th month, when we went to the doctor, the x-ray showed a gap between the broken area of the bone.  A specialist was called in and he confirmed there was infection and recommended removal of the pin and screws.
 
You may wonder why I’m telling you about my broken arm; all of my problems seem to be coming from infections.  They say my TM was the result of a sore throat and bronchitis caused by a viral infection settling in the spinal column causing the dreaded TM.  Now an infection gets into my arm and eats away at the bone.  The doctor says it is a water based bacterial infection called Serratia Marcescens.  So, now I’m in the hospital waiting for the antibiotic “Rocephin” to take affect.  When my system is back to normal, then the doctor will remove the fixator and put a new germ free pin and screws back in the bone.

If you have any questions, please contact me at 5625 Huntington Street, Leesburg, FL 34748.  My phone number is (352)315-1604.

Sincerely,
Don R. Batchelder