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: Dwayne
Pennsylvania

I will attempt to describe the events of my 45 year old son’s bout with ADEM.

Dwayne made his entrance into our world as a healthy 8 lb 5 oz baby boy on January 22, 1960.This was our first child, and my husband and I were both very young, 19 and 21 years of age.However, having been one of 12 children, I felt very comfortable with being such a young mother.His development equaled that of his cousin who was just 10 days younger.When he did not walk at 15 months, my mother suggested that we should have him checked.At that time, he was being seen by a general practitioner, and he referred us to a pediatrician.Forty-five years ago, the diagnostic tools in place today were non-existent.At that time, he was diagnosed with cerebral palsy and put in braces from the waist to his feet.He never learned to walk unassisted until the age of 3-1/2, while his braces were being repaired.He had spoken words at 10-12 months of age, but we noticed that he became less and less verbal.His lack of developmental skills was very insidious.A friend gave me a book on autism about 15 years ago, and I am now convinced that this is Dwayne’s true diagnosis.I plan to pursue that in the near future. He is “non-verbal;” however, over the years, there are times when he speaks sentences using correct English!He does use signs to communicate.

He was quite mobile until the summer of 2004, when we noticed he would no longer walk unassisted.This condition worsened on a weekly basis.In September, 2004, we had a young physician visiting us from Germany who knew Dwayne for more than 12 years, and she suggested we have an MRI done.A few days after she left to go home, Dwayne suddenly collapsed one morning.At that point, I called his physician, and he advised us to get him to the emergency room, which we did.Dwayne has to be put under general anesthesia for a procedure such as a CAT or MRI, so maybe this is why one had not been done before.During the two months prior to his diagnosis, we made quite a few trips to his medical doctor questioning why he was regressing.

There were no solid, only treating bladder infections, arthritis, sinus problems, and other issues.Before he collapsed, we also saw diminished mental abilities, and the GPs could give us no explanation for that, except the one physician who said this was “normal” with mentally retarded individuals.Two days after he was hospitalized, the results of the MRI were in.We live in the Harrisburg, PA area, and we are very fortunate to have a group of neurologists who were familiar with ADEM.Wow, having worked as a medical secretary many years ago, and still being an avid researcher on medical issues, I had never heard of that one!

The neurologist explained that the demyelination was actually seen taking place as the procedure was in progress.He asked if Dwayne had any previous MRIs done, and voila, I flipped the test results from out of my purse.I had gone to the hospital armed with any information I thought might be helpful.The 1994 MRI test results showed that, at that time, he had a normal, healthy brain.That doctor was mighty happy to have something for comparison.At this time, Dwayne was physically regressing on a daily basis.He became mostly paralyzed.He would not eat; he did not want to drink; he just lay on the hospital bed following our movements with his eyes.He did not even make any sounds anymore.

They also did a spinal tap to confirm the diagnosis.If I recall correctly, they had to send some tests away for diagnosis, and that is why they discharged him until the test results came back.The difficulty of taking care of Dwayne has been incredible!When he became ill, he weighed 285 pounds at 6 feet tall.When he was sent home from the hospital, he weighed 238 pounds. We were home only one day when the doctor telephoned to say that the latest test results definitely pointed to ADEM and he instructed us to return him to the hospital that same afternoon to start out-patient IV steroids.He was started on 1000 mg Solumedrol for a ten day period.

We did not see any significant improvement, so we made a decision to take him to Johns Hopkins in Baltimore for a second opinion.We secured an appointment in a few days, and he was admitted there and treated by Dr. Douglas Kerr, who is an international authority on Transverse Myelitis and other neuroimmunologic diseases.Dr. Kerr, after doing additional testing on Dwayne, concurred with the Harrisburg neurologist’s diagnosis of ADEM.Dr. Kerr prescribed the steroid, Decadron, to be administered intravenously.This was, once again, a ten-day treatment plan, and he arranged for us to have it done at Holy Spirit Hospital in Camp Hill, PA, where he received his initial treatment.

While at Johns Hopkins, they had a caseworker speak to us about having him sent directly to a nursing home, since he was still almost totally immobile.On a Thursday afternoon, I made numerous telephone calls to friends and acquaintances as to their opinions of different facilities in our area.After speaking with a good friend who worked at our nearest facility, we decided to apply there.I knew the Director of Admissions personally, so I called her at home, and she assured me they could have a bed ready for him by the following Tuesday.Friday morning, Dr. Kerr and one of his assistants came into the room with wide smiles on their faces.I will never forget his words; “We have reason to believe, after spending all last night comparing the different MRIs Dwayne had, that he will get better on a daily basis.”My husband and I exchanged glances, and we knew what our response would be.We would be taking him home with us where he had been living for the past ten years.

We had a full-time and a part-time caregiver prior to the ADEM, so we felt we could enlist their help in this adventure.

We didn’t see significant improvement until after about eight weeks.Since then, he has continued making progress on a weekly basis. He is now living in his own home with three full-time and two part-time caregivers.We bring him home with us every weekend.The past two weekends home, he has actually progressed to taking several steps on his own.I know he is going to walk again!We also see him making great improvement mentally. He now can focus enough to watch his favorite videos.He is doing puzzles again, and working with his tools in his workshop.He is still in a wheelchair, but not as dependent on it as he once was.The staff takes him on outings, and one of his favorite things is visiting Blockbusters and picking out the videos he wants to watch.Adam Sandler and Robin Williams are two of his favorite actors. We noticed that he is again anticipating what is coming up next on the video,ifhas seen it just once before, and he will alert the staff to watch.

Dwayne had three months of physical therapy, but I don’t feel that it made any difference.We and his staff devised our own therapies to suit his needs.We would encourage him to crawl, climb stairs, and play with a large rubber ball to re-establish eye/hand coordination, as well as other exercises and activities.We also get him to walk with his hands on our shoulders.He lost bladder control about one month after his ADEM diagnosis, and he has still not regained full control and must wear Depends.The control seems to be intermittent.We noticed that he is more incontinent when he is stressed or anxious about something.

I am so very grateful for the information provided by The Transverse Myelitis Association.With our son not being able to communicate his symptoms and pain, I was able to guess what he was experiencing based on what other ADEM patients had to say.

This week, I have enrolled him in the local YMCA for water therapy to help with his balance in walking.This past year has been so challenging, and today, I am so pleased with the progress that he has made - and is making!
His sense of humor has also returned. During the illness, he became very depressed and so very sad.His neurologist prescribed Zoloft for him two months ago, and it has made a great difference in his self-confidence and happiness.Our son is returning to us more and more every day! We are very optimistic about his outcome.

Donna Rode
Dwayne’s Mother