June 1, 2002 Rocky Mountain News (Denver, CO) by Lou KilzerThe first time Tracie McEwen sensed something was wrong with her husband, Doug, was Mother's Day, 1998.
"He always made me homemade cards for Mother's Day, and I liked them better than any store-bought cards," she said. "He didn't make me a card. And I remember thinking: Is he mad at me?"
The reality was far worse.
A rare disease had begun ravaging Doug's brain. Ten months later, Tracie was a widow raising two daughters alone and facing many unanswered - and perhaps unanswerable - questions. At first, she says, she was told by federal officials who rushed to Utah to investigate Doug's illness that he may have been the first American victim of mad cow disease.
But an autopsy made it clear that Doug had not died of mad cow, which leaves a distinct pattern in the human brain. Some scientists still wonder whether his case and the deaths of four others could somehow be connected to a related disease in deer and elk, chronic wasting disease.
Doug McEwen was an avid hunter.
But the national Centers for Disease Control and Prevention determined that there is "no strong evidence" that his death was connected to CWD.
Before losing Doug, Tracie McEwen wrote the following account of the ravages of the disease for a support group serving families of Creutzfeldt-Jakob disease (CJD) victims. CJD is of the same family of illnesses as mad cow and chronic wasting, but occurs naturally in humans.
This letter was written in January 1999:
My name is Tracie McEwen and I am 28 years old, my husband is Doug and he is 30. We have two little girls, Sharon who is 8 and Rilee who is 3. We live about 30 miles north of Salt Lake City.
My husband began having problems that I noticed in early summer. The first thing I remember was he forgot how to spell my name. Then I just noticed things like if I called him at work and asked him to bring home milk, he would forget the milk or that I had even called. He was having problems getting all of his paperwork done, so I was doing his monthly expense report.
I didn't realize until about a month later that he was actually having a hard time doing basic math. By the end of July, he was really having trouble. He was in Idaho on business, and was very late calling home one night. When he did he told me he couldn't remember our phone number.
I asked why he hadn't called directory assistance. He told me he couldn't remember how to spell his last name.
I told him to come home right away. By the middle of August he could hardly perform his job tasks. He blamed it on the stress from being out of town on business so much. He felt that if he got another job, things would be better. So I typed up a letter of resignation for him (because he couldn't remember how to use the computer).
Well, he found he couldn't fill out a job application by himself. Near the end of the month, we sold the mobile home we had lived in while we were finishing college. We had just had a house built and were supposed to be moving in, but now he had no job, and I hadn't found a contract to teach yet.
When some good friends of ours came to help us move, and he didn't know who they were, I told him that he was going to the doctor. When he resigned, we lost all of our insurance, but the house builder was very nice and gave us back all of the money we had put down on the new home. We used that money to go to the doctor.
The first was a family practitioner, who did the standard blood tests and then when they all came back negative referred us to a psychologist. He felt Doug was either depressed or suffering from a conversion disorder (meaning life had become too stressful for Doug and all of his problems were in his head, or at least mental so that he could get out of working).
I knew this was wrong. Doug was a hard worker, always had been. The psychologist . . . recommended a neurologist. The night before I took Doug to the neurologist was the first time I ever heard of CJD. . . .
When we got to the neurologist the next day, I still remember him saying, "I know what you are worrying about, but he is too young and this disease is too rare." So began a long period of testing, over 100 lab tests, 4 MRI/MRA's, EEG (that was fine), CAT scan, spinal tap (that showed elevated protein, but tested negative for CJD), a cerebral angiogram, and finally a SPECT (single photon emission computed topography) of the brain, which showed an area of low and no blood flow on the left side of his brain.
With no other alternatives, we had a brain biopsy performed and a second spinal tap. He had the biopsy on November 24, and on November 25 I was told he had TSE, which of course was indicative of CJD. I argued that he had had the EEG and spinal tap which had been fine. They assured me there was no mistaking what they had seen.
Two weeks later, I was told this CSF (cerebrospinal fluid) sample also tested for the CJD. I was told that he had six to eight weeks left to live, at best. Despite doctors' protests, I checked him out the day I found out, straight out of neuro-critical care. My feelings were if there was nothing they could do for him, then he might as well be home with those who love him.
I quickly arranged for home hospice. That is working out nicely. He is doing better than expected, but I told a friend yesterday that he is not the man I married and loved, he is the shell of that man. I have let go of my husband the best that I can. I am dedicated to caring for him at home until this is over.
Our youngest really seems unaffected, she just turned three last month and is very happy-go-lucky. Our eight-year old is heartbroken. Her daddy goes through periods where he will not speak to any of us. She will climb up on his lap and say I love you daddy, and he will not even look at her. These two just this last June were the best of buddies, they were together all of the time.
I made the very painful decision to have her go stay with some close friends the other day until this is over. He gets easily agitated and the other night he thought she said something she did not and tried to chase her, arms flailing, yelling. It was horrific. She was devastated.
Shortly after she climbed on his lap, to apologize for making him mad (which I tried to explain wasn't her fault), she begged him four or five times to talk to her, but he wouldn't even look at her, and then he pushed her off his lap.
I knew then that she can't stay, she can't have these as her last memories of her daddy, her best friend. This is the worst thing I have ever seen, I wouldn't wish it on my worst enemy.
Last night, he had his first seizure in bed that lasted for about three minutes, maybe, but when it was over he looked right at me and said he loved me (I have not heard those words from him in over two months), while he tried to get his breathing back to normal. I feel that my time with him is soon to end.
This is who we are right now, but this is not who we were six months ago. Then we were two recent college graduates, with two little girls, getting ready to move into a new home, and begin a whole new chapter of our life. Now we are finishing the book of our life together, and I want to know why, how, and when this disease will get enough attention, so that someone, somewhere, is allowed to find answers and solutions to this life stealer.
Sincerely, Tracie McEwen
After her letter, Doug's condition continued to worsen. "He was still trying to talk to me in January. He couldn't very well, but he was still trying," she said.
Soon after, communication stopped.
Tracie doesn't trust the verdict that Doug's case was a chance occurrence of the rare, naturally occurring Creutzfeldt-Jakob disease. She says she told federal officials: "I'm not buying it. You guys don't want to tell me. ... There's something else. There's some other cause."
She says that before Doug died officials gave her a list of 10 diseases that he might be suffering, in order of their likelihood. CJD was last. Alzheimer's was No. 8.
Doug McEwen died at home on March 26, 1999. He was 30.