ENCEPHALITIS CASES

Encephalitis Cases

Ilene

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 was a mumble. I was able to get up and tried to have a drink of water thinking maybe things would improve, but this did not help. My husband thought I had a stroke and made me do some arm moves, which I was able to do. Nevertheless, he decided I should go to the hospital and I shook my head indicated "NO" I didn't want to go to a hospital.

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 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 to talk to me and looking very puzzled. One of the doctors who was a neurologist thought I might have Herpes Encephalitis, but the other doctors disagreed. I was taken by my husband to another hospital where I had a CT scan, EEG, and MRI assessment, which proved the neurologist was correct. I recall very little about my 2 1/2 weeks in the hospital. I do recall one day being asked, "what is the name of your husband?" After 31 years of marriage, I couldn't remember his name. My husband and daughter visited me each day and were beginning to wonder if I would survive. I did slightly improve and was allowed to go home and take Dilantin pills.

Unfortunately I lost my 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 about my illness. I was so sure I would improve before too long.

Feeling unhappy about my illness, I decided to get away, so I took off on my own on a bus and went to visit my mother. I stayed for 3 1/2 weeks and enjoyed being away and well looked after. My mother no longer drove, but she still had her car and I discovered that I still re-membered how to drive. I was sensible enough not to drive in rush hour or on busy roads, but enjoyed getting out with my mother.

When I returned to Ottawa, I had an appointment with my neurologist. I happily told him that I was feeling better and had no problems 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 that he couldn't take my license away, but if I drove and had an accident, I would be sued and lose everything I owned. 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 months bureaucratic hassle with the licensing authorities to get tested by occupational therapists and driving examiners.

For the first year 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 of plenty of homework, things did improve and still enjoy reading the paper every morning, but I have a problem remembering what I read. Reading a book and trying to remember is still a problem. Consequently, I write down names and who they are and keep track which help me understand a book.

One of my biggest problems with this illness has been my inability to sleep. For the first eight months after I was home from hospital I slept like a log and then began waking up in the middle of the night unable to get back to sleep. I have taken sleeping tests and there is nothing wrong. I have tired prescriptions but after taking them for a while my body seems to rebel. Despite all this, I got involved in doing a lot of volunteer work and exercising to keep my body in shape.

During one of my many appointments with my neurologist, I asked if he knew anyone else with my illness as I would love to speak to someone else with similar problems. My doctor replied my illness was rare and that I had done amazingly well and he knew of no one he could refer me to. Since Dilantin pills were causing swelling gum problems, I asked to discontinue medication. The choice was mine but I was told not to drive for four months and make sure I did not suffer without them. Fortunately, I had no problems without medication and my gums improved and was delighted to drive again, and food now tastes better and enjoying life a lot more.

My daughter and her husband gave us a wonderful Christmas present of hooking us up on Internet a number of years ago. How fantastic this has been, a wonderful boost to my life to be able to read the stories of other people who have this illness and thanks to Daniel for organizing the project. I did once teach computers many years ago when things were simple, but now a great way to keep in touch with people especially for someone with this crazy illness.

We moved sometime ago to a warmer section of Ontario than Canada's cold capital. Being in a smaller place and on Lake Erie has really helped me feel much better. My doctor here agreed that I needed good sleeping pills which I take daily and life has certainly improved and I am feeling much better and continuing to do a lot of exercise each morning. Along with many people I hope that a cure will be found for this miserable illness. Reading stories written by people with this problem I can see some do recover completely and they are fortunate, while others suffer and do not recover.

Ilene
Ottawa, Ontario, Canada

Posted: December 15, 2009

[ADULTS]	[CHILDREN]	[HELP]	[SUBMIT STORY]	[EMAIL]	[HOME]