In Their Own Words

In each issue of the Journal, we will bring you a column that presents the experiences of our members.  Their stories are presented In Their Own Words by way of letters they have sent us.  We are most appreciative of their willingness to share their very personal stories.  It is our hope that through the sharing of these experiences, we will all learn something about each other and about ourselves.  It is our hope that the stories will help us all realize that we are not alone.  We are particularly grateful to those people with Acute Disseminated Encephalomyelitis who wrote articles for this publication of the Journal.  You may submit your stories by sending them either by e-mail or through the postal service to Sandy Siegel.  Please be sure to clearly state that The Transverse Myelitis Association has your permission to publish your article.

ADEM:  A.L.
Michigan

Diagnosis and Initial Treatment:

My name is A.L. and I was twenty-four when I was diagnosed with ADEM.  I presented symptoms of dizziness and back pain at the beginning of March 2003.  At first, I attributed the symptoms to a possible injury I incurred while weight lifting, such as squatting or bench pressing.  As time went on, the symptoms progressively became more pronounced.  I lost the ability to urinate and began to have painful back muscle spasms in the thoracic region of my back.  On March 6, 2003 I checked into a local hospital (Henry Ford Hospital in Wyandotte, MI) and believed that I had kidney stones (a condition that is prevalent on my father’s side of the family).   Regrettably, as time went on that day, numbness crept from my toes up to my thighs.  At the time the doctors believed that the symptoms were not a result of kidney stones, but indicative of a neurological illness, such as transverse myelitis or guillain barre.    Nonetheless, I was administered solumedrol (a cortical steroid) for the inflammation, along with morphine to alleviate the pain.  

A day after my admittance to Henry Ford Hospital Wyandotte, I was transferred via ambulance to Henry Ford in Detroit where they had better imaging technology and more specialized facilities in the event surgery was necessary.  Upon my admittance, I was given an MRI and a lumbar puncture/spinal tap and it was determined I had an inflammation of the spinal cord.  Subsequently, after a number of tests and further MRIs, it was determined I had ADEM.  My preliminary treatment was five treatments of solumedrol to quell the inflammation by suppressing the immune response bringing about the demyelination/lesions in the spine.  After my treatment, it was determined through follow up tests that I was not responding to the solumedrol and that a round of intravenous immunoglobulin was necessary to bring the immune response under control.   Fortunately, my body did respond and the inflammation was brought under control.  It should be noted that I had to return for follow up solumedrol treatment, because of a remission of demyelination.  

Recovery:

Instead of a discussion about my illness, I will focus on the rehabilitation process I went through.  Currently, I am able to walk with some tightness below the knee of both legs with residual chronic back pain localized in the thoracic region of my back.  I also have some residual urogenital complications such as a spastic bladder, bowel, and sexual dysfunction.  All have improved greatly due to specialized rehabilitation exercises I took at the advice of my urologist.  I cannot say for certainty what exactly has contributed to my rehabilitation, other than I took a very proactive approach to my recovery.      

Overcoming the initial trauma to my psyche was the first important step towards my recovery.  In fact, I believe that rehabilitation is 70% mental and 30% physical.  It is important that one develop some sort of emotional management system.  A book that I highly recommend is Mind Over Mood by Dennis Greenberger and Christine Padesky.  The basic premise of the book is to help the reader develop techniques to work through emotions rather than ignoring them.  My affected areas of injury were from the caudal region of the brain throughout my spinal cord.  As time progressed, parts of my spine did heal (re-myelinate).  But when it came to my case, I did not focus too much on the radiological reports presented to me by the neurologists.  The reason is that MRI imaging only tells the doctor which part of the spinal cord is inflamed; it is not yet refined enough to view the tissue with clarity.  

My main approach to rehabilitation was to focus on parts of my body that did work and improve them through physical movement.  At first, both my legs felt numb and I had little muscle control with severe deficiencies on my right.   I, therefore, worked with my family members and physical therapists to constantly stimulate my muscles through stretching.  One novel approach I took to rehabilitating my legs was taking showers in which I had a family member change the shower temperature from luke-warm to extreme cold and back.  I noticed that my nerves responded strangely and for a short time interval regained greater motor function.  It should be noted that I rested a lot during the initial phase of my rehabilitation and ate a balanced diet with approximately four to five small meals a day.  By balanced, I made sure I ate a substantial proportion of protein with some carbohydrates and consumed two to three portions of fruits or vegetables.  As soon as I regained some muscle control of a part of one of my legs, I would improve it and exercise it by doing free-weight movements, such as attempting to move it in different directions with someone applying resistance.  

As I slowly regained greater muscle function, I would begin to exercise with thera-bands.   I focused exercise on my upper body with thera-bands to develop greater strength and to become more proficient in using my wheel chair and thus help my care-givers move me around.  It must be noted that my recovery occurred not in inches, but rather millimeters.   As time progressed, my legs did slowly begin to function, and I, therefore, worked with my outpatient physical therapist to develop more self-care abilities.  I continued the exercises and incorporated a resistance weight training program.  In fact, a good book that describes the basics of exercising along with diet is Body For Life by Bill Phillips.   My regimen was based on a day-on and day-off strategy.  Specifically, I exercised the parts of the upper body (chest and shoulders) on day one and then took a day break.   The reason for the day break is to give the body a day to recover.  I would take a day to relax; to go outside and get some fresh air.  Then the next day I would perform leg exercises (quadriceps and hamstrings).  On the third exercise day I would work-out the rest of the upper body (arms and back).  On the fourth exercise day I would work-out the calves and adductors/abductors. 

It may be a good idea to get a personal trainer for help in getting started.  The muscle physiology of the human body consists of many muscle groups.  Therefore, by working with a certified personal trainer, he/she may be able to assess deficiencies and give supplemental advice in conjunction with your physical therapist.  Your physical therapist will focus on gaining functionality through novel techniques, but may have limited knowledge on the implementation of weight training.  Resistance training was the best way for me to develop my strength.  It was important for me that regardless of what was neurologically working, I wanted to develop a strength training program to compensate for neurological deficiencies.  

Current state:

My current state has improved enough for me to walk and carry on daily activities with a high degree of normalcy.  As stated in the introduction, I still have urogenital deficiencies which I have improved through muscle tightening techniques I learned from my urologist.  It is a difficult and sensitive topic, but one that has to be addressed, because I believe that it, too, has helped in my overall recovery.  Bowel, bladder, and sexual function are associated with the most distal part of the spine (furthest from brain).  The techniques I utilized was tightening and compressing the muscles of the lower abdomen in the pelvic region along with the tightening of the sphincter of the anus (usually three sets of ten).  The use of erectile dysfunction medication can help in maintaining the physiology of the penis and stimulate the muscles and nerves involved in the erection response.  

The two effective ways I have found to treat erectile dysfunction involve the use of oral medication and injection therapy.  Use of drugs, such as Cialis, Viagra, or Levitra may be effective enough for a person with neurological damage.  These drugs are not instantaneous; rather they allow vascular caverns of the penis to relax and, therefore, may require some sort of stimulation.  The side-effects of these drugs can be headaches, vision problems, and flushing of the face.  Regrettably the use of some medications, such as anti-depressants and pain killers may reduce the efficacy of this class of medication.   A more aggressive alternative is the use of injection therapy.  The plus side of using this type of medication is that it is almost instantaneous and no stimulation is necessary and there are no pronounced side-effects, as is the case with oral medication.  The medication used forces the vascular caverns of the penis to dilate.  The problem with this medication is it requires an injection and if an incorrect high dose is used, one may have to go to the hospital to treat the priapism (erection lasting longer than four hours).   In order to learn more about injection therapy, visit the Boston Medical Group website: www.bostonmedicalgroup.com.

Everyone is different and I am not sure what if any of what I did helped in my recovery.   It has been an arduous journey that I feel can only be described as a soul sacrifice.  But in the end one learns, adapts, and in the process becomes a more humbled and stronger individual.  Allow me to reiterate how important it is to manage one’s emotions in order to deal with and continue living with the effects of a neurological illness.