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| Charlotte |
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My wife Charlotte was basically the picture of health until one morning when she woke up and
said that something was desperately wrong. A couple of hours later, she was in ICU at a large local
hospital. It became evident early on that the doctors realized something very unusual had occurred and
that a whole range of testing was needed.
As the following days went by, such things were put forth such as a brain tumor, a catastrophic emotional
breakdown, or poisoning. Charlotte ended up spending a month at that hospital, where she lost virtually all
of her communication, mobility and awareness abilities. She had to be restrained with "mitts" as she tried
to pull out her IV and feeding tubes. The low point throughout all of this was when I was told that I had
"days" left with her, and actually started making funeral arrangements on our 22nd wedding anniversary.
What complicated her diagnosis was the fact that she tested positive for the bacteria "Bartonella Quintana"
(Trench Fever), which has hardly been seen since it afflicted World War One soldiers! The working theory
was that the Bartonella had induced Acute Disseminated Encephalomyelitis, but there was no certainty in
that diagnosis. At that point, Charlotte was transferred to Boston for three more weeks of hospitalization.
While in Boston, the experts there were as baffled about my wife's condition as the doctors were here in
Maine. However, they proceeded on the ADEM diagnosis and prescribed the powerful steroid
Methylprednisolone for the encephalitis and Zithromax for the Bartonella bacteria. Miraculously Charlotte
came back right from the brink of death and started to regain her speech and hearing, and some of her
mobility--but the doctors prepared me for the possibility that she might continue to be bedridden for life
and never walk again.
Charlotte was then transferred back to Maine to a Nursing Home/Rehab Facility for two more months where she received speech, physical and occupational therapy. Amazingly all of her abilities started to come back slowly. Her speech improved weekly and she also progressed first into a wheelchair, then a walker and finally was able to walk using only a cane. She then came back home finally where she could walk completely unaided--Not bad for someone who was supposed to be bedridden for the duration!
What has lagged behind for Charlotte is her reading, writing and spelling abilities which is now at about a first or second grade level--She could read and write on about a college level before. However in place of those things Charlotte has taken up painting which she never did before her ADEM encephalitis. Also her personality is now somewhat childlike but she does the best that she can.
In the past couple of years, Charlotte's walking ability has become somewhat unsteady so that she now uses a cane to assist her. In addition, she is now on anti-seizure medication. She struggles to be at home alone while I am working but is able to do it so far. At some point in the future she will likely need someone to be with her at all times, but hopefully she can retain her independence for as long as possible.
We give thanks to God for Charlotte's recovery, and would love to hear from any of you about your experiences with ADEM.
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Paul
Maine, U.S.A.
Posted: July 22, 2001 |
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