Georgia TM Support Group
Charlene Daise

I would like to take this opportunity to introduce myself to the Transverse Myelitis community and simultaneously thank you for giving me an opportunity to share my story.  Prior to my diagnosis, I lived and worked very hard to ensure that the emotional and physical needs of my three children were provided. I often dreamed of how life would be once they were adults and my role as primary caregiver would diminish. When my youngest child graduated from high school, it was finally time to think about me.  I cautiously examined my personal needs as well as professional aspirations in public education and decided it was time to step out of the box and work independent of all existing systems.

Five years later, I was happily and successfully working; serving diverse groups of people in different cities, strategically planning how to cultivate each community’s resources in an effort to build better cities.  Suddenly and without any warning, my wings were clipped.  On Thanksgiving Day 2002, I experienced my first attack of TM. Its manifestation was a burning, sharp and electrifying pain on the right side of my head radiating to the neck. The pain and my response horrified family members. We were bewildered but a medical emergency room was fifteen minutes away and there we went.  While in the ER, a second pain attack occurred. This time the residual effect left one side weaker. We had no idea this was the beginning of one of the most arduous experiences that could be imposed upon a family and their friends. 

Six months later, I had been medically examined by multiple doctors, i.e., neurologists, internists, dermatologist. Each prescribed an abundance of pain killers, anti-depressants, and other drugs.  My body was weakening from the condition, but no diagnosis was determined until one night in one of the most distressed physical states of my life, an ER doctor at Crawford Long Hospital in Atlanta gave me hope.  He spoke confidently about their ability to treat the problem rather than the symptom.  Within a few days, a wonderful neuromuscular physician, Dr. Jackie Washington, ordered the first MRI, diagnosed the illness, inspired me to remain positive and referred me to a neurosurgeon.

The next seven and a half months were spent between hospitals and rehabilitation centers. I endured two surgeries on my spinal cord along with steroid therapy. However, I was completely paralyzed from the neck to my feet and not responding to medication. At this time, my treatment plans were modified by a persistent, compassionate, and talented neurologist, Dr. Donald Orr. His recommendation included plasma exchanges, and I received eleven treatments. Once we completed the third or fourth exchange, movement returned in one toe. My internist, Dr. Jimmie Williams, worked and walked closely with me, as well. His calm and relaxed persona during early morning daily visits set the tone for me to successfully complete multiple MRIs, CAT and PET scans, therapies (occupational/physical), ICU, threats of pulmonary challenges, spasms, blood clots in both legs and constant pricks from a team of friendly techs.

With C 3, C 4 injuries, I required twenty-four hour care for seventeen and one half months. Family members, including aging parents, scheduled hours of providing me with constant care.  There were many friends and volunteers from churches who readily and willing came to assist me.  Pastoral visits gave me hope and this remains a critical role in my rehabilitation process today as I am now able to walk and use my hands.  Both hands were manipulated twice.

I believe one of the strongest and most profound impacts in recovering from any disappointment is to have a venue that encourages dialogue about the problem. Secondly, we must be supportive of each other as we all learn “how not to give up.”  A wise woman once told me, “Information is power.”  Certainly, a traumatic unexpected chronic illness might suggest that your life is over, but for me, I feel a strong sense of a “new beginning.”

I am very excited about initiating a support group in Georgia.  I live in Decatur.  The TMA has a large number of members in our state and I am hoping that many of you will be interested in getting involved.  You can reach me either at my email address:  cdaise@bellsouth.net or by phone at: (404)289-7590.  If you write to me by email, please include TMA in the subject line so as to avoid being identified as spam.  I am looking forward to hearing from you.

Charlene B. Daise