New Jersey

My name is Robert Pall and I live in Central New Jersey. I was diagnosed with TM a little over ten years ago. I found it startling that a state as large as New Jersey does not have a support group. Therefore, I am volunteering to start one.

The onset of TM hit me one week after my 50th birthday.  It started with a slight tingle in my right thigh and within several hours I was totally paralyzed from the waist down.  I had zero feeling in my legs, but nevertheless, I thought I must have pinched a nerve or something else quite treatable.  How wrong I was!  First of all, I never heard of TM nor did I understand what it had done to me.  Living in the New York area, I was lucky to have access to premium medical care. That being said, I was immediately put on 1000 mg per day of steroids, which I imagine prevented my condition from being worse.  I was transferred after a week from my hospital in New Jersey to Columbia Presbyterian Hospital in New York City, and was finally diagnosed with TM. The diagnosis was made after two spinal taps and three MRI’s. The third MRI showed the lesion on my spine.

After two weeks at this hospital, I was transferred to Kessler Rehabilitation in New Jersey (the same rehab hospital that cared for Christopher Reeves).  I remember asking the doctor if I would ever walk again.  She told me that she thought that I would, but didn’t know if I would need some assistive device (e.g., walker or crutches) to do so. While at Kessler, I developed a clot behind my right knee which broke and caused me to have a pulmonary embolism.  After a week of being treated at a nearby hospital, I returned to Kessler.  I remember thinking how great it would be if I could just use a walker to be able to make it to the bathroom by myself!  

After a few weeks, I was using a walker, and by the time I left Kessler (after ten weeks), I was able to get around with a quad cane. I was very excited that I had started to see some improvement almost everyday. I was convinced that if I worked real hard, I would become “all better.” Well, as most of us realize, we do not get all better. We simply become better adapted to dealing with the condition.

After one year, no matter how hard I tried (physical therapy, exercise); I could no longer see improvement. This caused me to become extremely depressed to the point of needing medication (Paxil).  I was having a difficult time coping with the realization that I was not going to get “all better.”  I found it so frustrating that nobody understood what had happened to me, nor had anyone heard of TM.  Consequently, as my walking improved, everyone thought I was cured.  They thought that my just having a limp was not that terrible.  What they did not understand was that as my walking got better, I was now experiencing pain, numbness, pins and needles and excessive banding.  I did not see this coming!  I never realized that when some feeling returned that this feeling would be horrible; and it remains so to this day.

After six months I returned to work.  I am an accountant and have a desk job.  I would not have been able to perform physical labor.  I also rededicated myself to exercise and getting myself into the best shape I possibly could.  Probably the best thing I did after one year was to see Dr. Kerr at John Hopkins Hospital.  First, he was able to confirm that I do indeed have TM.  He also prescribed various medications which he has adjusted or changed every year I see him.  I do make sure to see him once a year and Dr. Kerr is the only neurologist I see.

I consider myself one of the lucky ones with TM.  I am still able to work and drive; I am on the road more than two hours per day.  I walk with a limp, but use no cane or other device.  As many of us understand, the pain or discomfort is with us 24/7.  Until a cure is found, I basically try to stay in shape and treat my condition with medications that either reduce the discomfort or aid my walking.

I try to maintain a positive attitude. I never (well almost never) ask “why me?”  I am often embarrassed by my condition, even though I know it is silly to feel this way.  Regardless of whether it is real or imagined, it bothers me that I might be seen by others as disabled.  So I try to walk and act normally. Walking “normally” takes a great deal of effort, and I fatigue very quickly.  Fatigue has been one of my most difficult problems.  It frustrates me that no one, including my wife and family, understands how much more difficult all of our lives have become. They may say they understand, but unless you walk in my shoes, you cannot truly understand.
           
The TMA website has been an enormous help for me in understanding the condition and how best to deal with it.  Many members have helped me with advice and understanding. After ten years, I hope I can share my experience, help and hope with other members, especially the new members, as other TM’rs have helped me!

Robert “Rob” Pall
4 Victoria Court
Morganville NJ 07751
(732)536-5308
robthecfo@aol.com