ENCEPHALITIS CASES

Encephalitis Cases

MaryAnn

March 25, 1997- My husband, Daniel, came home from work (a very important government job, computer operations manager for 6 government agencies) and complained of having a headache and being dizzy. He took some Tylenol and went to bed thinking he would get a good nights rest and go to work in the morning. When he woke up he still felt terrible so he called in sick to work and went back to bed. I went to work and called to check on him later in the day. He still felt pretty bad but didn't think it would require a doctor. Another good nights sleep and he would be as good as new, or so we thought.

The next day it was clear he wasn't getting over this "FLU" so we went off to the HMO, they gave him Meclizine and told him to take Tylenol and rest. The next morning Daniel woke me up at 4:00 am shaking uncontrollably. He had a temperature of 107 and was burning up with fever. The next thing was a run to the emergency room. They packed him in ice and got him as comfortable as they could. They sent him home with different medications and an order to rest. We were glad to leave thinking the worst was over.

Daniel rested all night but I could tell he wasn't himself. Again, 4:00 am he began shaking so hard I thought there was an earthquake shaking our bed. I took him back to the ER. More ice packs and more IV's. They sent us home again. This time within 2 hours of being home Daniel became agitated and seemed very unusual to me. He became angry (very unlike Daniel) if I asked him questions like "How are you feeling?" or "Do you want a drink?" He couldn't answer, it was just too difficult to think, it hurt his head to try to think.

We then went to one of the major hospitals in Boston where Daniel was immediately admitted with a diagnosis of "Viral Encephalitis. We (my daughter and I) were sent away (it was 2:00 am) and could do nothing but go home and wait. We called the hospital and found out that he was out of the ER, in a regular room and on IV for serious dehydration. He had 2 spinal taps and 2 cat scans. I don't know how many other tests they put him through, I just know he was being tested for hours and hours. We didn't know how serious this illness was. We wouldn't find out for months.

Daniel was hospitalized for about a week and sent home with an electric pump attached to him for an additional 9 days. We had a visiting nurse come everyday to change the IV. Daniel got phlebitis from the IV in one arm and they had to remove it and put it in the other arm. He got phlebitis in that arm also. The doctors didn't tell us how dangerous this illness was. They said things like "he would be back to work in a month or two". Perhaps they didn't know themselves? It has been 12 years since Daniel got sick and he hasn't been back to work yet.

As the days went by Daniel became like a infant. He couldn't do simple things for himself; I had to do everything for him. He was completely bed-ridden for about four months. It took all his strength to get up to go the bathroom, so he began a routine of not drinking anything. If he didn't drink he didn't have to get up. This has carried over into the recovery phase of this illness, Daniel has become so accustomed to not eating and drinking that he doesn't remember to eat or drink unless I am there to remind him. It became my job to be Daniel's advocate because there was no one else who understood how serious this had become.

Now, I want you to understand my outlook on this whole issue. I love my husband dearly and I would go to the ends of the earth to get him what he needs to recover. I have had to become the biggest pain that the HMO has ever had to deal with. I am constantly on the phone with one person or another, researching on the Internet, library or any other resource available at the time. I have had to yell at, beg and try to out smart more PhD's, MD's and PsyD's. I have become quite competent at reading doctors thoughts and knowing what they are going to try to solve everything with pills or how they will choose one facet of the illness and dwell on it completely ignoring the actual problem.

Let me say that a person with encephalitis NEEDS someone in his or her corner, whether it is a husband, wife, son, daughter, mother or father. It could be anyone who cares (I mean really cares) about the ill person. Not caseworkers. They will just shuffle your loved one to the bottom of a stack of papers. If you have a caseworker please stay informed about the patients care yourself. Don't take a backseat. I believe with all my heart that if I hadn't been an advocate as far as Daniel's care was concerned that he would still be home in bed waiting to get well. He couldn't express to the doctors how seriously weak he was, they saw him but they didn't understand.

I called rehab centers and questioned the secretaries about their therapies. I talked to the insurance and referral specialists at the same centers. I talked to anyone who would take the time to talk to me. After I had a 5-inch thick 3-ring notebook filled with information the doctors finally listened to me. Of course, before Daniel could get the therapies I was asking for they had to call a meeting with all the doctors involved (about 6) and then the red tape really started. I asked for Daniel's therapies in August of 1997, 5 months after he had become ill, 1 month into his real recovery, you'll remember he was in bed for 4 months. Daniel finally received permission to go to the rehab center for occupational, physical and speech therapy on February 5, 1998. He was also given permission for computer therapy, which immediately became his favorite therapy. He began his computer therapy on February 14, 1998 on our first wedding anniversary. Did I mention we had been newlyweds when all of this happened? In fact Daniel got sick only 5 weeks after our honeymoon. Daniel and I were childhood sweethearts.

Daniel still suffers daily headaches as a result of the encephalitis, compounded by the fact that no medication seems to help the pain much. We are lucky because Daniel doesn't have a lot of problems related to encephalitis as there could have been. Some people end up with many serious health issues because of the encephalitis.

Daniel's walking was very shaky at first but he never needed a walker or a cane. He still has difficulty, when 2 people are trying to get down the same corridor; Daniel will back up and let the other person go by. He doesn't like people to be too close to him still. When Daniel first started rehab they had to do his exercises in a private room because any activity was too distracting for him. His balance was so bad too, they were always afraid he was about to topple over. They would have him do something called "tandem walking", one foot in front of the other in a straight line. The first time he did it the physical therapists were sure he was going to fall over. Daniel would use his hands and arms to balance himself. Now when Daniel does "tandem walking" there is no arm movement at all. The people at the rehab center praised Daniel and they wanted to make him their poster boy because he works so much harder then anyone they have seen before. They all kid him about the fact that he exercises more and harder than any of them. They say he puts them all to shame. His personal therapist says, "I need to be more like you Daniel, you are so motivated." He is more motivated than anyone they have ever had in their rehab center.

We struggle on day by day, one new medication after another, one new side- effect after another. Encephalitis has changed our lives drastically. We don't look at things the same way we used to; we take things as they come, the good and the bad. We know that it is the little things that mean a lot like a ride on Sunday and it's who you are not what you've got, Daniel is the most wonderful human being you would ever want to meet. The way I look at it is that I am very lucky to be married to him, illness or not. We are the same people we were before this happened, we are just better, stronger, closer and a lot more understanding.

I hope that my story can help someone understand just a little of what it is like to get such a devastating illness or to be a related to someone who has had to suffer from such a terrible illness.

MaryAnn
Massachusetts, U.S.A.

Posted: June 30, 1999

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