Hello, An Introduction

[Guest guest]

Hello,

I have been added to the list by Melvin Steiger of SLC, Utah, at my

request. He has been a great help to me these past few weeks. My name

is Tracie McEwen and I am 28 yrs. old, my husband is Doug and he is 30

yrs. old. We have two little girls, Sharon who is 8 yrs. old and Rilee

who is 3 yrs. old. We live about 30 miles north of SLC. My husband

became 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 callling

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 suppose 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 practioner, 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 to

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 gave Doug a MMPI

after she met with him. Her feelings were that this was a neurological

problem and recommended a neurologist. The night before I took Doug to

the neurologist was the first time I ever heard of CJD. I saw Mel

Steiger on the TV talking about his wife Ellie. 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 labs, 4 MRI/MRA's, EEG (that

was fine), CAT scan, spinal tap (that showed elevated protein, but

tested negative for CJD at NIH), 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 the

second spinal tap. He had the biopsy on November 24, and on November 25

I was told he had TSE's which of course was indicitive 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 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. My work has been so good, I am now on catastrophic leave. 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 personal 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 devasted. 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