My name is Mary Lou Qualtrough and I had a sudden onset of Transverse Myelitis on September 27, 2004. I was 62 years old and I was working full time in my profession as a Physical Therapist in home health care and living independently in my town house. At approximately 9:30 AM I was working with a total knee replacement patient when I felt a sudden change in the strength in my legs. I knew something was drastically wrong. This was the last day I worked in my Physical Therapy profession. The goal of this article is to show how I went from denial to acceptance by being my own patient advocate to “make it happen” with this life change. I had many trials and treatment options. Some were successful and some were not, but all were worth attempting with the hope that my symptoms could be controlled. I also had many challenges with my health insurance company for coverage of services. I want to share my experiences to encourage and inspire others who have this disease.
By the time I got to the ED at 11 AM on that day I was not able to fully support my own body weight. They diagnosed me with a possible stroke. I remember lying in the ED experiencing the rapid decrease in the strength in my hands and legs and the starting of paralysis. I had severe weakness in my trunk muscles. I was not able to sit without support and I was not able to roll over. I had a band of numbness around my chest extending down to my feet. I could not perform a straight leg raise on the left and could only raise the right leg five inches off the bed. A Magnetic Resonance Imaging scan and neurological evaluation were performed and I was started on IV steroids. A definite diagnosis was not made, but the MRI findings did show abnormal findings in the spinal cord in my neck. My strength and mobility continued to decrease rapidly over a few hours. My left leg and right arm were weaker than the right leg and left arm. I had no strength or movement in the right hand and very limited movement in the 3rd through 5th fingers of my left hand. There was no movement in the left thumb or index finger. It took two people to help me walk and they really were dragging me.
I was accepted to the acute rehab spinal cord unit at the University of Rochester, Strong Memorial Hospital on October 4, 2004. Every possible test and evaluation was performed and the Neurologists made a diagnosis of relapsing-remitting Multiple Sclerosis. I refused to accept this diagnosis because I felt I was too old for an initial episode and never had symptoms of weakness or a remission in the past. Of course I was sure I knew everything, but the Neurologists were firm with the diagnosis. I cried for eleven days, then realized I better get going and take advantage of the great rehab care that was available to me. The MD in charge of my case told me not to think of the end, which I knew all too well, but to think of the journey along the way. I will never forget this and her words come back to me often.
I was so overwhelmed when this happened. Even though I was a Physical Therapist, I did not know my elbow from my knee about what was happening to me. I needed all the direction and intervention that I could get. My PT consisted of spinal stabilization exercises, balance exercises on a small trampoline, and every strengthening exercise imaginable. My strength improved in the right leg, but weakness persisted in the left leg. There was no return of motion in my right hand. With the intervention of Occupational Therapy, I was able to dress, feed myself, write and use the bathroom with assistive devices. Transfers from the bed, chair, toilet and car were independent with a walker. I was able to move about unaided with a walker for short distances. The IV steroids were tapered and I was started on zanaflex, an oral medicine to decrease the spasms. Recommendations and modifications were made to my town house and I was discharged home on October 19, 2004.
The Neurologist at SMH, who specialized in MS, evaluated me two weeks later and felt I did not have MS. He diagnosed me with Transverse Myelitis. He said TM is an autoimmune disorder attacking the spinal cord in my neck and this is probably a one-time event. Treatment is focused on symptomatic therapies. He also said the prognosis of the disease was impossible to predict at this time. I could not believe this was happening to me. I started my appointments in the Urology Department at SMH for treatment and monitoring of my complete bladder incontinence. At about this time a friend of mine gave me Allen Rucker’s book, “The Best Seat in the House.” His experience with TM was a good source of information and was an inspiration to me. Many of his experiences echoed some of my own.
I had never been dependent in my life and now I needed someone to take me every place I needed to go. I had just bought a new car one month before this happened and could not even hold onto the steering wheel. In April of 2005 I started going to Rochester Rehab at the Al Sigel Center for driver evaluation and training. After testing, it was determined that the spasticity in my legs was too severe and unpredictable to safely use them on the gas and break pedal. I started training with a hand control lever for the break and gas with my left hand and a brace for my right hand to hold it on the steering wheel to turn the wheel. I was terrified and felt I did not have any control of the car. I had the most patient teacher in the world. He also had nerves of steel. I will never forget the first time he had me drive on the expressway. I credit him for a great deal of my success. My confidence and ability slowly increased and after eight months it was determined that I was safe to drive with hand controls. All of the modifications were made to my little 2005 Toyota Corolla and off I went. Without this ability I would be very homebound and dependent on family and friends for all my appointments. That certainly gets very old for everyone after a while. This was a major accomplishment for me and encouraged me to continue to fight this disease.
While I successfully built my confidence with hand-controlled driving, a series of medical conditions proved I had plenty of challenges yet to face. I had been very healthy all of my life and belonged to a fitness center and a hiking club. But during 2005 I was hospitalized twice for extremely low blood pressure. Then, the Physiatrist monitored and increased zanaflex and initiated baclofen, another oral medicine, for the pain and spasms in both legs. My Neurologist ordered MRI scans February, July and October to monitor my condition. And, my Urologist treated recurring urinary tract infections. I started outpatient physical therapy for ongoing strengthening and stretching of my muscles. All told, I had a total of 53 different medical appointments during the year.
In June of 2006, pain was so severe down the left leg that two spinal blocks and botox injections to both hamstrings were given with no decrease in pain. During this time I developed an abnormal curvature in my back, a scoliosis. This was caused by the severe spasms on the right side of my back. I always continued my exercise program to help prevent formation of contractures, but I was losing the battle. I also was given a trial of a series of seven infusions of IV Solu-Medrol, a steroid to help decrease inflammation, but these were discontinued as no benefits were achieved. During the remainder of 2006 oral baclofen and zanaflex were increased.
The spasms in my hamstrings and hip flexors were so severe that I developed contractures and was unable to stand up straight and unable to lie on my stomach. My pain was 8-9 on the pain scale when the spasms were at their worst. At night the spasms would cause my heels to draw to my buttocks and would almost throw me out of my bed. I performed my home program of stretching and strengthening exercises as much as I could within the limits of the spasms and pain. The scoliosis on the right side of my back increased and my height decreased from 5 foot 0 inches to 4 foot 9 inches and my posture was very bent over. I needed to use a scooter for most mobility in my home. The oral baclofen and zanaflex were the only treatment I had for the spasms and pain. I felt my doctors had given up on me and they were going the status quo route.
Reaching the Low Point
My safety in my town home was becoming very risky. My town house was a two-story unit with the full bath on the second floor, powder room on the first floor and the laundry room in the basement. I required a home health aid two times a week to assist with bathing, dressing and personal care. I could not safely climb and descend the stairs and had the bed brought down to the living room. During this time I had numerous falls. My niece and her husband invited me to come and live with them to give me time before I would inevitably have to go to a nursing home. They made a wonderful, safe, first floor apartment for me. It was large enough for me to use the scooter for all my mobility. I sold my town house and moved to their home in early February of 2007. This was my lowest point in coping with this disease and the loss of my independence.
A Ray of Hope and Planning
As I coped with this low point in my life, a ray of hope arrived with an issue of The Journal of The Transverse Myelitis Association. The Journal was a part of my extensive research on the disease and in it I learned that there was a center for TM at John’s Hopkins Hospital in Baltimore and that gave me hope. Patients from all over the world came there for a second opinion from a Neurologist who specializes in Transverse Myelitis. So, in February 2007, I started the process of having all my records sent to the TM Center and I set up an appointment.
In preparation for the appointment, I had to get prior approval from my insurance company for reimbursement for this out of area second opinion. My primary care physician had to provide justification for the evaluation and get a referral. The actual evaluation by the Neurologist cost $675.00 and I was reimbursed $178.50. All the travel costs were at my expense. I thought I would receive more reimbursement because I had prior approval. I challenged this low reimbursement, but I lost this one. Next time I will investigate the rate of reimbursement better so I won’t be surprised.
This trip process was difficult to put together because the TM Center did not return my phone calls with answers to my questions, however, on June 1, 2007 off to Baltimore I went with a friend. This trip was frightening for me because it was the first time I was out of a protective environment since the onset of my TM. However, I really thought there was some miracle news there that would make me all better.
Once at the hospital I received a very thorough evaluation and assessment. Essentially the Neurologist confirmed the diagnosis of TM and the only treatment is based on symptom control. I was very disappointed with this information, but I needed this reality orientation to start to adjust to my life change and plan for the long-term management of my symptoms.
Recommendations and Help
One of the many recommendations that he made for symptom control was a baclofen pump for spasm management that could be used if maximum oral drugs were ineffective. He explained in detail all the risks and benefits of this intervention. Higher doses of baclofen could be given with fewer side effects of drowsiness, dizziness and weakness. I researched and found that the baclofen pump is made by Medtronic and is known as Intrathecal Baclofen Therapy. Lioresal Intrathecal is a liquid form of baclofen and is injected and infused into the fluid filled area surrounding the spinal cord requiring an implanted drug delivery system. I had never heard about this treatment before and was just intrigued with it. The Physiatrist I had at Strong Memorial Hospital discouraged the pump with the rational that it was too difficult to monitor the dosages. She said that I should continue taking the oral medications. However, I was not satisfied with that answer and I pursued what I felt was a better solution. I was referred to a Neurologist in the Neuromedicine Pain Management Center at Strong Memorial Hospital who managed and worked with the pump. He evaluated me on May 19, 2008 and referred me for a standard screening test one month later. At last I received an intrathecally administered test dose of baclofen via a lumbar puncture. I demonstrated a positive reaction with a decrease in spasms and a slight increase in mobility after four hours. I was on my way.
After a series of delays, the pump was surgically placed in late October, some 17 months after the Neurologist at John’s Hopkins Hospital first made the recommendation. However, everything was not smooth sailing as I then developed a seroma in my abdomen. When the first pump refill was attempted in December it was determined that the pump had rolled over. A second surgery was performed in early January 2009 correcting the position of the pump. There was actually nothing to this second surgery. When I went to the pharmacy at Strong Memorial Hospital for the first refill kit I was charged $300.00 saying my insurance did not cover the refill kit. I challenged this with several phone calls and letters pointing out that it did not make sense that the Insurance Company would reimburse for the baclofen pump surgery by a Neurosurgeon and then not reimburse for the Leoresal refills. I won this one. They related the mix up was due to a Pharmacy billing code error. If I had not challenged this I would have lost the $300.00 on this refill kit and possibly been charged for every refill kit.
I did have one chuckle with the insurance company. I purchased a rolling walker with a seat and received a reimbursement of $69.71. I cashed that check. I received another check for the same amount two months later. I sent this check with a letter back to the insurance company thinking it was an error. They again sent another check for the same amount. This one I cashed. I also had a disagreement over another small billing error. With a letter and two phone calls, the insurance company ruled in my favor.
Then over a one year period each week, I went for gradual increases in the flow of the Liorsal into the spinal canal. This was non-invasive and all done by computer. During this time the oral baclofen and zanaflex were being tapered. There was the most amazing gradual decrease in spasms and the horrible pain in my hamstrings, hip flexors and hip adductors. The Nurse Practioner who managed the increases was so extremely capable, knowledgeable and encouraging to me. I received a computer print out of each increase, the dosage and date of refill. I also went to a Physical Therapist for myofacial release to the hamstrings, hip flexors and back muscles and this helped to decrease the contractures in the hips and knees. I was able to perform my stretching and strengthening program at home again and I slowly progressed to ambulating with a walker for long distances and a forearm crutch for short distances. I put the scooter away in the closet.
I realized that I did not need to live with my niece and her husband for their assistance in my care and moved to an independent apartment in June of 2009. It is a first floor, two-bedroom apartment with a galley kitchen. The kitchen is small enough for me to move food and dishes safely. I can prepare small meals and have not starved to death. I had several friends who were very against this move away from the support of my family, but I am being successful. I am able to drive my car with my hand controls and strong enough to go to the market for shopping. I even went on a four-day vacation to Charleston South Carolina last July and I am planning another vacation to Boston this April.
I have now been in my apartment seven months with success in this delicate balance. I continue to have a home health aid two times a week for assist in bathing, dressing and help with the laundry. My family and friends are always there for help when I need it, but respect my safety judgment and need for care. In November of 2009 I started volunteering as a receptionist at the American Red Cross one time a week at a blood donor site very close to my home. This is a wonderful fit for me. My baclofen pump levels seem to be just right now to allow me to perform at this level. I have refills to the pump every two months with increases or decreases as needed depending on the spasms. I recently applied to be a volunteer for the Medtronic Ambassador Program to share my experiences with individuals and family caregivers who are considering the Intrathecal Baclofen Therapy. I would never have believed that I could progress to this level after five years since the onset of the Transverse Myelitis.
I had professional Physical Therapy and Occupational Therapy at every level in the course of this disease, either with home care or out patient. I now have a good home exercise program for stretching, strengthening, and positioning exercises and I know when to increase or hold the exercises depending on the spasms. I have every imaginable adaptive device for my hands to help with activities of daily living from very innovative Occupational Therapists. I feel the most beneficial PT for me is hydrotherapy. It is just amazing, even to me, how straight I can walk in the water and how the buoyancy of the water decreases the amount of fatigue I feel with regular exercise. This is just what works for me and may not work for everyone.
I have been asked many times how I was able to keep going through all these changes in my life. The reason is because of the wonderful family, friends and caregiver support that I have. They have encouraged me and praised me for every advance I have made. They also helped pick me up when I was down. This whole disease has been so overwhelming for me that I cannot imagine what it would be like for someone who does not have the basic knowledge that I have as a Physical Therapist and who knows community resources and the workings of health insurance companies. Maybe this review of my experiences can help someone who is going through a similar devastating experience. I want to thank The Transverse Myelitis Association and Sandy Siegel for this opportunity to share my experiences.
Mary Lou Qualtrough
Mary Lou Qualtrough
36 Boxwood Lane, Apt. #8
Fairport, NY 14450
Education and experience:
BS Degree in Physical Therapy from St. Louis University in 1963.
MS Degree in Public Administration in Health from the State University of New York at Brockport in 1998.
Forty-one years of Physical Therapy experience in the acute care general hospital setting, short-term rehab and long-term care in nursing homes, rehab in a Veterans Administration Hospital, and rehab in the home care setting.