BENEFITING: Transverse Myelitis Association
EVENT DATE: Jun 22, 2014
June 14, 2010: a day I will always reflect on, not because it was the day after my beautiful daughter’s 17th birthday, but because it was the day that a rare disease changed my life forever. Instead of enjoying the summer with my daughter, I spent six weeks in a rehab hospital while she was on her own. Thank goodness we had already completed the college search process, decided on her choices, and she had her license.
I got started as usual and by 7am I had not been called into work for my substitute teaching job. I made myself a second cup of coffee and proceeded to read some emails. Shortly after, I had a sharp shooting pain in the right side of my neck and my right hand started to tingle. I thought I had just pulled a muscle in my neck! Thinking the symptoms were no different than I had experienced in the past, that my neurologist had never been concerned about, I told my son to go ahead to work.
Forty-five minutes later a more intense sharp shooting pain started in my neck and this time my left arm and left hand started to feel numb and tingly. I also felt dizzy and nauseous so I moved to the kitchen floor, knowing that this was different from the occasional problems I had in the past. I thought was that I was having a stroke!
I called my husband and then 911, he called my son, and both arrived with the ambulance. The trip to the hospital was not long time- wise but felt like it took an eternity. The ER ran a series of tests and ruled out a stroke and heart attack; although good news, the sensations were not improving. I was started on a heavy dose of steroids and Neurontin. Over the next few hours, my legs started to feel numb and weak. I was admitted to the hospital and they proceeded to perform a number of tests including MRI’s and vision tests. As nothing was conclusive, they led me to believe that I would be back to normal in no time.
After four days in the hospital, I did not have a diagnosis and in an attempt to relieve the numbness and pins and needles in my hands, they tripled the dosage of Neurontin which yielded no benefits. As my condition had stabilized and I showed some improvement, I was transferred to the rehab hospital. I remember it well. It was a Sunday at dinner time and, hoping to get a heart healthy meal, I was quite surprised when a high fat meal was served. My husband got me settled and left to get things in order at home. Within a short time, my body started to feel different and I realized I was completely paralyzed from the neck down! I could not press the call button or use my cell phone. I could not wake my roommate or get the attention of the nurses over her very loud TV! I had to lie in bed crying, unable to move waiting for the nurses to make their rounds in the morning! I was frightened, confused, and scared.
The next morning, I explained what happened to the nurse, my husband who had arrived, and then the rehab doctor. The strangest part of it all was that although I could not move anything from the neck down and my bodily functions had shut down, I could still feel the doctor’s touch as he examined me. Thank goodness, with all of this happening, I could still think and talk! I talked at length with the doctor and we went through the meds that I was on and the only thing that had changed was the tripling of the Neurontin. Given my history of not metabolizing certain meds and the fact that I had not had improvement with the nerve pain, he agreed with me to stop the Neurontin, my blood pressure, and my statin drugs.
No one could explain what was going on with my nervous system or why it decided to take a vacation. My husband and I were both frightened and confused and to be frank, angry with what had happened as I had always taken good care of myself and frequented many doctors over the years who could not explain symptoms I had been experiencing.
A few days later, my neurologist stopped in and he had no explanation as to what had happened but he shared these words of wisdom, “you are toast and there is nothing that can be done for you.” He was referring to the damage to the spinal cord sheathing and although I am certain he did not mean for it to come out that way, it is what left a lasting impression on me and my husband who could not believe what he was hearing.
Within that first week I had started to slowly (very slowly) get some feeling back and was able to move my left thumb. Within the next few weeks, I regained some movement in my hands and feet. I frequented Mass and thank goodness I had a physical therapist (PT) that pushed me and was determined to give me a fighting chance so I could have some semblance of a ‘normal’ life. As my husband says, “our new normal!” I was thankful to have loving and supportive family and friends to visit and keep me company. My sister would give me pedicures and my daughter would play games while the rehab hospital became my husband’s second home.
During my stay at the rehab hospital, my husband and I celebrated our 30th wedding anniversary. Peter had my parents bring our china and ordered a wonderful dinner and dessert as we celebrated on the terrace of the hospital. The rehab hospital was a far cry from Italy where we had hoped to celebrate with our children but hopefully one day we will make that trip a reality.
After a couple of weeks of intense physical therapy, my PT also set up five sessions on the Lokomat, which trains your legs to relearn walking movements. I looked and felt like a robot but it was starting to work. After five weeks in the rehab hospital, I was released to go home. It was my goal and the goal of my PT to NOT leave the hospital in a wheelchair. I am proud to say that I was able to ‘walk’ out the door of the hospital with the assistance of a walker all the way to the car.
Now my real journey began! I decided to search for a new neurologist as both my husband I did not see eye to eye with him. I started physical therapy (PT) and occupational therapy (OT) at home but unfortunately, insurance was cancelled after two months because I didn’t have a confirmed diagnosis. I had originally been diagnosed with Multiple Sclerosis even though tests were negative. In October I started to see a neurologist at Yale who diagnosed me with Transverse Myelitis (TM). She had me start seven plasmapheresis treatments at Yale. It was not a cure all but it did help to somewhat regulate my body temperature (one of my symptoms is always being cold regardless of the outside temperature) and movement.
In January 2011, I started outpatient PT and OT at a nearby rehab facility. Unfortunately therapy was cancelled after three months by the insurance company as they felt I would not show improvement with my diagnosis. Since then, I have made going to the gym a daily routine and have made great strides to regain my balance and strength over the last three years.
Although I have many low moments, wondering why me and still trying to understand my new life’s purpose, I am thankful that after almost four years later I am able to continue a positive attitude, walk (although assisted), have regained my bodily functions, and have some balance and strength back. I just wish that the chronic pain in my hands and hypersensitivity to cold and touch would also get the memo. I am not crazy about this new normal and this is not how my husband and I had envisioned our lives as empty nesters but thankfully I can still enjoy time with my family and friends.
On June 22nd, we will be participating in a Walk-Run-N-Roll campaign at Goucher College to raise awareness and money for Transverse Myelitis research. Please consider making a contribution and supporting Peter and I in this effort. If you prefer to send a check, please make it payable to: The Transverse Myelitis Association, with a reference to MD Walk – Cheryl MacInnis. Then mail your check to: The Transverse Myelitis Association /1787 Sutter Parkway / Powell, OH 43065-8806.
Thank you, Cheryl