TM Support Group in Upstate New York

I would like to start a TM Support Group in Upstate New York.  I have had TM since December, 1964; almost forty-five years ago.  I was twenty years old.

My attack was sudden and dramatic. A short period of time prior to the attack, I had been a finalist in the Miss Ottawa Rough Rider Beauty Pageant and had a budding future ahead of me as a fashion model and commentator which I had been aspiring to since the age of fourteen. This all took place in Ottawa, Canada where I was born, the eldest of seven children.

One night I had been feeling a sensation of ringing in my ear and was not feeling well.  My parents contacted our physician who made a house call (as they did in those days). He checked me over, was not able to determine anything, and just told me to rest. The next morning I awoke and tried to get out of bed.  My sister, with whom I shared our bedroom, saw me begin to fall and ran to catch me.  Her foot got caught in the bed sheets and we both fell to the floor. I was in a state of total paralysis and an ambulance took me to the hospital.  My family was totally devastated. I spent the next three months hospitalized.

The initial tests that were done were a Spinal Tap and Myelogram; the MRI had not yet been invented.  Back in 1964 not very much was known about TM. If you can imagine, I was a total quadriplegic with no sensation whatsoever from the neck down, and I remember those tests caused such pain that I was screaming.  I was diagnosed after a process of elimination. They determined that I had Acute Transverse Myelitis, an inflammation of the spinal cord located at the base of my neck.  I remember during my stay in the hospital that I always gave permission to the many doctors who wanted to come visit me, because this condition was so rare and they wanted to observe my symptoms.  I also remember visits from doctors from the Montreal Royal Victoria Neurological Hospital.  I was given daily injections of what I believe was Vitamin B12.  I received other medications.

I started physical therapy and occupational therapy. During this period my dear father visited me twice daily, offering constant encouragement.  I received visits from the rest of my family giving me the support needed to endure this difficult time.  My mother made delicious homemade food packages for me and being of very strong faith went so far as to make a promise to G-d that if I got better, she would completely quit her habit of chain smoking. (My mother never smoked a cigarette again in her life.) Eventually, after three months, I was able to walk out of the hospital with the use of only one cane.  I used this cane for only a short period of time. I was very determined that I was not going to spend the rest of my life in bed.  Thank G-d, I had the support of a wonderful family.

In 1965, my father and sister accompanied me on a trip to Quebec City, a few months after my discharge from the hospital.  We made a special pilgrimage to St. Anne de Beaupre, located 20 miles from Quebec City.  There is a Holy Shrine dedicated to St. Anne.  I left my cane behind in the main church with the thousands of others I saw there.

Fortunately, I had a miraculous recovery and completely regained the use of my limbs.  I was able to live the next forty years of life in relative normalcy; no cane and no physical therapy.  I had only a slight limp as there was damage on the right side of my body.  I did not have much feeling and especially in the right foot.  My life as a model, walking down a ramp, was over.  I was asked to judge beauty pageants, organized and was the commentator for many fashion shows, appeared several times on television and taught others how to model and show clothes.  I never talked about my illness to anyone and literally forgot about it.

My family eventually moved to Montreal where I had a career as a make up artist and skin care specialist.  Then I became a key representative for a major cosmetic company. I did a lot of traveling, drove a car, got married to a wonderful man and moved to Syracuse, New York.  I lived a relatively normal existence during those many, many years.  I was able to complete my college education, acquire a real estate brokers license in New York State and in Florida and even traveled extensively for several years in the capacity as representative of the women of my church in my region and also on a national level.  I compiled a cookbook which was sold with all proceeds going to benefit my church.  I never sat idle and lived a very full, meaningful life.

Then age hit me. It was when I was around the age of fifty-six or so.  I started to have problems with my legs, spasticity, and bladder problems. Most of the doctors did not know what to do for me.  I finally went to visit a neurologist who sent me to an urologist.  I received the help needed to treat the bladder issues.  I tried the pills for spasticity which did not help; they just put me to sleep.  So I got off of these medications and I am happy to say that now I only take the minimum of medications.

Then in 2004, I fell to the floor on three different occasions. I was petrified, because I thought I was getting another attack of TM.  For a period of time, I had to walk with crutches and then two canes.  Finally, after x-rays and other tests, it was determined that I needed a full right knee replacement.  I started physical therapy to strengthen my legs before the needed surgery.  I had the knee replacement in June 2005.

One day while I was at Physical Therapy, the therapist left me alone in the room.  I was unable to stand on my own and was not able to get to the door to call anyone.  This was a very scary feeling.  After a while, somehow my legs got better and when I was able to stand, I asked the therapist to please walk me to my car.  I was not sure I would make it home.  When I got home, I had to sit on the stairs and go up the twenty-eight stairs backwards, one step at a time, just to get up the stairs of my house. I live in a tri-level house.

It was about this time that I went to visit my OBGYN doctor for an annual visit. He asked me how I felt.  I responded that I did not feel great.  I feel I am getting older and no one knows anything about Transverse Myelitis to be able to help me.  He asked if I knew how to use a computer.  I told him that I did. He told me to try to Google Transverse Myelitis and see what happens.  I followed his advice and was absolutely shocked to discover a TM Organization.  It blew me away.  I started to search, read and devour the site.  I contacted Sandy Siegel and was so happy when he actually telephoned me. This was just before the Symposium held in Baltimore in 2006. 

Sandy advised me to try to find a physiatrist and I did (after I said a what? I had never heard of a physiatrist.)  They put me into an AFO for a period of time and gave me the confidence to try to learn to walk again after the surgery.  Having surgery on a leg that does not have total sensation and has muscles suffering from spasticity, did not lend itself to an easy recovery.  The Orthopedic Surgeon told me the recovery should be about three to six months, at most.  In actuality, I was not able to drive for two years after the surgery. Three years after the surgery, I am still going to physical therapy three times a week.  I work very hard just to maintain the ability to walk using a cane and regain a sense of balance. This was the third time in my life I had to learn to walk.  All of this has been very taxing on me and has held me back in my ability to maneuver in my occupation as a real estate broker.

Sandy Siegel with his kind words convinced me that if I was at all able to attend I should not miss the Baltimore Symposium.  Thank G-d I have a wonderful husband who was able to drive us to Baltimore.  I found what I learned at that Symposium to be revolutionary, and I thank G-d every day that I did go, because I learned things that have actually helped me in my everyday life.  It was also the first time in my life that I actually met others who were suffering with TM.  Only after this trip was I able to start opening up and started talking about my experience with TM to others.

In 2008 we decided to attend the Seattle Symposium.  After attending this symposium, I decided that I would like to start a support group in my area.  I feel that if I can help even one other person suffering with this ailment, my life would have been worth all the suffering I have endured.  The realization hit me that my suffering was nothing compared to the many others with TM that I have met.  I wondered why I was miraculously spared a life spent in a wheelchair.  I want to share my experiences and encourage others to keep a positive attitude; to live life one day at a time, to make the best of what you have, and, above all, to never give up hope.  As Dr. Kerr has told me on two different occasions, someone suffering with TM for 45 years is now prone to post TM syndrome caused from aging.  This has led me to believe that it is very important to keep exercising, stretching and moving to fight the onset of age.  If I do not, I will end up in a wheelchair.

I was not able to participate in the Accelerated Cure Project because I do not have any medical records from the time I was diagnosed with TM.  It is so important to keep copies of all of your medical records.  I would encourage you to do this.  I also encourage everyone to enroll in the ACP repository.  

If you live in the Upstate New York area and would like to get involved in a support group, please call or send me a letter or email. I look forward to hearing from you.

Laraine Mahshie
313 Wedgewood Terrace
Syracuse, New York 13214
(315)446-0611
lmahshie@myelitis.org