A Tribute to Jim Miles -

[Guest guest]

Hi Everyone:

In talking with Barb McGuire (McBarb3@...) last night, she told me she

had written this message and asked me to forward to all members of CJD Voice.

This is Barb's tribute to her special and dear friend, Jim Miles, who died of

CJD on January 10, 1999.

Barb has been a steadfast friend to both Jim and Pam. Pam would not have

survived this experience without Barb by her side. She guided Pam with the

help of God.

I am sure that Barb would welcome your comments.

Dolly

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Subj: for CJD voice

Date: 3/4/99 9:56:31 PM Eastern Standard Time

From: Mcbarb3

To: DBC006

My Friend, Jim Miles

A tribute

My husband met Jim Miles when he transferred to Oconomowoc High School. It

was a friendship formed around playing football together. This friendship

continued as Mike and Jim went to the same college, joined the same

fraternity, and ended up living in the same town after college. In fact, they

ended up living four houses away from each other.

I met Jim my first week of college. Jim was a year ahead of me, and he was at

school during freshman week because football players came back early. Jim has

always been a “people person.” There he was, organizing a party so the

freshmen girls could meet the upperclass guys! How strange that I met Jim

before I met my husband!

Jim married Pam, Mike married Barb, and it would be nice if we could say we

all lived happily ever after. Unfortunately, that is not the case.

Over the years, the Miles couple and the McGuire couple spent many nights

playing cards, having fun, and trusting in each others’ friendships. Six

children were added, and the kiddies also became fast friends. Spring

migrations to Florida were planned the same week, so we could join each other

while soaking up the sun.

There were times we moved in other circles, but we always kept in touch and

made sure we would spend that treasured time together. It was a ritual that

we would always spend Christmas Eve together. Jim and Pam allowed us the

honor of being Godparents to their daughter, Tricia. Initially it started

with us just dropping off a gift for her on Christmas Eve, but as the years

went on, the visits ended up being for the whole evening following the church

service. We said we would continue this forever. Another fallacious

statement!

Here is when my tribute becomes painful. Enter CJD, a horrible, incurable

disease. I wish I could end it here. I have vowed to write this message to

help others facing this wretched disease. Thus, I will continue.

I ran into Jim as he was going into the doctor’s office in late summer of ‘98.

He had been stung by a bee. His hand was swollen up to the size of a

football. Other than that, he looked wonderful. I will always remember our

chat. It's the last time I saw him whole.

Shortly thereafter, CJD suddenly wormed it's way into this wonderful man's

body. The first signs were when Jim was having trouble completing a round of

golf. He loved that game with a passion. It seemed strange to Pam that he

didn't want to play 18 holes. Then one night Jim asked Pam if he sounded

funny. She hadn't really noticed it until then, but Jim had. He remarked he

was having trouble hearing clearly. Shortly after that, Jim had trouble when

he was playing cards with friends. Pam took him to the emergency room.

Diagnosis: drunk! On one beer? It wasn't long until Pam took Jim to another

hospital. He was having trouble grasping the correct word he wanted to say,

and his slurred speech became more obvious. He went through numerous tests,

and he was sent home. Diagnosis: Probable virus which would run its course.

Such relief was felt when they were told everything really bad had been ruled

out. (Yeah, right!) It was during this hospital stay when a tiny twitching

of one of Jim's fingers began.

Jim and Pam came home from the hospital. The twitching became more apparent

and involved, and the family doctor suggested Mayo Clinic in Rochester, MN.

Pam, Jim, and Tricia headed up while the three other Miles children held down

the fort in Oconomowoc. They made several trips to Mayo, and finally it was

suggested Jim “might” have CJD, a disease which affects one in one million.

(I am beginning to question these numbers.) However, the tests of the spinal

fluid and brain activity did not correlate with CJD.

It was at this time that my cousin hooked me up with CJD Voice after he did an

Internet search on CJD. I met Dolly who spent hours talking to me and sharing

information Pam needed to have. Still, I could not believe Jim had this. I

had read so much on personality changes, and Jim was still the same sweet,

calm, loving Jim.

Mike started going over to visit Jim a few days a week. Jim had tried to

continue to work, but it was impossible. Mike had some wonderful visits with

him. Christmas was coming, and Mike had been there a few days before the

wonderful holiday we always enjoyed sharing. Christmas Eve was a shock for

us. In just a few days, Jim had lost the ability to speak. His tremors were

uncontrollable, and he had no appetite. He giggled when we walked in and

smiled almost nonstop while we were there. The only thing he could say was,

“I will fight.” It took him a long time to get this out, but he wanted us to

know he wasn't giving in to this disease. The day after Christmas Jim went to

the hospital. He wasn't able to eat, and he could no longer walk. He

remained in the hospital for about two weeks. By the end of this stay, he was

oblivious to everything. The hospital said they could do nothing more for

him. They didn't know what he had, but they didn't take any precautions. It

was Dolly to the rescue again. She faxed information to a mutual friend who

shared it with the doctors, staff, and funeral directors. It was time for Pam

to find another place for Jim. She firmly stated he would not go to a

hospice. He would go home. Jim was home for three days, and then he left

this world for a better place.

As difficult as it was, Pam allowed an autopsy for medical purposes. Jim was

the kind of person who would have wanted others to gain something from his

misfortune. Jim's funeral was probably the largest one this town has ever

seen. It took hours for all the mourners to pass through at the visitation.

Jim's nickname was Smiley. It suited him well. I close my eyes and try to

picture him as he was during our thirty-eight year friendship. I will always

remember his kindness, his compassion, and his zest for life. I will also

always remember him going through the stages of the cruelest of all diseases.

He leaves behind a beautiful wife, four lovely children, a loving mom, two

siblings and hundreds of friends who miss him so.

Barb McGuire (mcbarb3@...)