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| Ilene |
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In February 1995, at the age of 57, I awoke one morning in my home in Ottawa, Ontario, Canada, unable to speak. When I tried to talk, all that came out of
my voice was a mumble. I thought if I had a glass of water and went to the
bathroom, maybe I would be better, but this did not help. My husband thought
that I possibly had a stroke, so he had me do some arm and stroke moves, which
I did successfully, but he nevertheless felt I should go to the hospital. I
could not talk but I understood what he was saying and shook my head indicating "NO" to his request.
Next thing I knew, an ambulance arrived and took me to the Civic Hospital. I was devastated to leave home unable to communicate with anyone. At the hospital I recall people checking me and eventually my husband arrived to talk to the medical doctors. As the day passed by, I was slowly beginning
to speak a bit and I wanted to go home. The doctors appeared puzzled with my problems and indicated that I needed to stay and have more checks
done. I recall four doctors coming in to talk to me and looking very puzzled. One of the doctors who is a neurologist thought I might have Herpes
Encephalitis, but the others doctors disagreed. After tests, which included a CT scan, EEG, and a MRI assessment, it was proven that he was correct.
I recall very little about my 2 1/2 weeks in the hospital. I do recall being asked by the doctor one day, "what is the name of your husband?"
After 31 years of marriage, I couldn't remember his name. My husband and daughter who visited me each day were beginning to wonder if I would
survive. I did start to improve and since my husband was retired and able to look after me I was let out of hospital and allowed to go home.
Unfortunately I lost the job at a private school which I was looking forward to starting in a few weeks. I was a supply teacher at the school, but had been hired to
work in the office, which I was looking forward to. I felt so terrible when I phoned
them and discovered they had hired someone else after they learned of my disease. I
was so sure that I would be better soon.
Feeling unhappy about my illness, I decided I needed to get away, so I went to visit my mother. I stayed for 3 1/2 weeks, just enjoying being away and
well looked after. My mother no longer drove, but she still had a car and I discovered that I still remembered how to drive. I was sensible enough
not to drive in rush hour or on busy streets, but enjoyed going shopping and visiting my mother's friends.
When I returned to Ottawa, I had an appointment with my neurologist. I happily told him that I was feeling better and had no problem driving again.
He overwhelmed me when he told me not to drive till he felt sure that I was capable. I was devastated and cried. He told me in the future he would
reconsider my driving ability. It was two and one half years before I was able to take a test and drive again, a year to get my doctor's OK, and
an unbelievable 18 month bureaucratic hassle with the licensing authorities to get tested by occupational therapists and driving examiners.
For the first year after I was out of hospital, I spent an hour twice a week with
a Speech and Language Pathologist. At first I found my memory to be very poor, but
with my classes, as well as plenty of homework, things did improve. I still enjoy
reading the paper every morning, but I have a problem remembering what I read.
Reading a book and trying to remember the people in it is a problem. I find that
the best thing for me is to write down the names of the people in the story so that
I can refer to them when I need to.
One of my biggest problems with this disease has been my inability to sleep. For
the first eight months after I was home from hospital, I slept like a log, then
I began waking up in the middle of the night unable to get back to sleep. I have
taken sleep tests and told there is nothing wrong. I have also tried various
prescription pills but nothing seems to help once I have been on the pill for a
while. Despite all this, I do a lot of volunteer work and a lot of exercising and
walking to keep myself in good shape.
During one of my many appointments with my neurologist, I asked if he knew anyone else
with my disease, as I would love to speak to someone with a similar problem. My
doctor replied that my disease is rare and that I had done amazing well and he knew
of no one else he would refer me to. Since my Dilantin pills were causing swelling
gum problems, I asked if I could discontinue medication. The choice was mine, but
I was told that I would not be able to drive for four months, to make sure that I could not suffer problems without them. Fortunately, I have had no problems without medication and my gums have improved and I am driving again!!!
My daughter and her husband gave us a wonderful Christmas gift of hooking us up to Internet. How fantastic it has been, a wonderful boost to my life to read the stories of other people who have had the same disease. I love reading people's stories and finding some so similar to mine, thus I have written out my story and hope I can be in touch with others who have a similar problem.
We have recently moved to a warmer section of Ontario than Canada's winter cold capital Ottawa, and I have felt much better in Leamington (on Lake Erie) which is one of the farthest south places in Canada. I have had much better sleeping since we moved, but still not back to being normal. Just wish that I could have my memory back and not be so forgetful of things people tell me. Of course I never remember names, which is difficult when you move to a new area and have to get to know the new neighbours. This place is much smaller than Ottawa and it makes driving much easier than a big city. Do continue to hope that someone will find a cure for this crazy disease.
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Ilene
Ottawa, Ontario, Canada
Posted: June 28,2000 |
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