LOCKED IN?
INTERNET PROVIDES A KEY
Journal of Healing – July 3, 2002
By Mary Koch

When I first heard the words "Locked-In Syndrome" in 1993, I wanted one thing: more information.

No, I wanted two things. I wanted my husband to recover from "Locked-In Syndrome." That required more information. But information was about as available as beer at a Baptist church convention.

The neurologist who diagnosed John after his brainstem stroke offered a bleak prognosis. John's mind was functioning but "locked" inside a body that couldn't move, speak or swallow. It's a rare condition, the doctor said, adding that recovery is even more rare.

Says who, I wanted to know. I searched the medical library at the hospital and found nothing. I wanted to find other people who had this condition. But how?

I did Internet searches for Locked-In Syndrome and found only a handful of obscure references. As years passed, cyberspace exploded. Now access to the Internet is commonplace all over the world. The web has connected us to information and, even more important, to people.

* * *

THE OFFICIAL position on Locked-In Syndrome has not changed. If you go to the National Institutes of Health web site, you will read: "The prognosis for those with locked-in syndrome is poor. The majority of patients do not regain function." The NIH suggests no standard course of treatment, and no studies are underway to come up with treatments. No one knows how many LIS patients are out there. They are too frequently written off as hopeless cases.

Because there's no standard course of treatment, some patients don't get treated at all. The dismal prognosis becomes self-fulfilling prophecy.

Through the Internet, we meet people like Debbie. Her 36-year-old husband Todd suffered a brain stem stroke and resulting Locked-In Syndrome April 4. They have eight children, the youngest a one-year-old. The doctor who released Todd from the hospital sent him home to vegetate until he dies. Instead, the family has been able to get the therapy that Todd was denied in the hospital, and he's already recovering function.

We've met Debbie, Todd and others through Bill McMurray. A former auto mechanic in Pennsylvania, Bill has been locked in for 12 years. Before his stroke he had never operated a computer. Now he is an expert in assistive technology and has been key to helping LIS patients and their caregivers find each other through his web site.

Every story is compelling. LIS patients range from ages 7 to 70. They are male and female. Some have recovered a great deal; some very little. They are determined and hopeful people. They help each other, telling their experiences, what works and what doesn't. They include a disk jockey, prize fighter, housewife, soccer player, salesman, and former newspaper publisher.

* * *

WITH THE HELP of son John, daughter-in-law Becki, and their staff at ncidata.com, John and I have joined this virtual community. We have our own web site at www.marykoch.com. You can find recent columns, background on John and his stroke, and a page about his triumphant excursion across Grand Coulee Dam two years ago.

You can also find links to the LIS community that extends from France to New Zealand and all around the United States. It's a community no one would want to join, but those who are part of it are immensely grateful that they have found each other in this information age.

SOMETIMES, IT SEEMS,
THERE'S NO POINT
Journal of Healing – July 10, 2002

By Mary Koch

I needed some help writing this week's column.

I started out reading a newspaper article about stress management for second graders. No kidding. A school counselor in Maryland has developed a course to help 7- and 8-year-olds relieve stress and build self-esteem. I thought the article was going to expand on the idea that kids are over-scheduled with sports, after-school lessons, Scouts, camp, etc.

But that's not the problem, at least according to these experts. The article quoted a psychiatrist who said kids are stressed because their parents are stressed. Worse, parents don't always show kids how to "de-stress."

For example, if a stressed mother slams the door and throws down her keys, she is teaching her child one way to relieve stress. If she goes out for a jog, meditates or practices yoga, she is teaching other ways.

Ouch. I've been known to indulge in a door slamming key-throw from time to time. Good thing there are no small children around to witness it.

* * *

WELL, THIS WAS all very interesting. But what was my point? I wasn't sure.

I turned to my husband, who is the ultimate model for de-stressing. A few years ago John was on a heavy-duty regimen of drugs, medication for clinical depression and anxiety over being totally paralyzed and unable to speak. Now he no longer takes any psychiatric drugs or anti-depressants, zip, nada.

I watched him do it, but I'm not totally sure how he did it. Now, John says, he is a basically happy person.

"What makes you happy?" I asked. He answered with his eye-blink method, spelling out the words letter by letter.

"I don't think about what I am missing, what I have lost," he answered.

"What do you think about?"

"What I can do."

"What can you do?"

"Listen."

Aha. John has mastered a skill that is fast disappearing. The art of listening. How many of us just can't shut up long enough to listen? Or if we do let someone else talk, it's only because we're concentrating on what we'll say next.

John used to remark wryly about some heavy-duty talkers, "They must breathe through their ears."

* * *

SOMETIMES PEOPLE come up to John and shout, thinking that because he's paralyzed, he's deaf. Blind people tell me they have similar experiences. John's hearing was never affected by his stroke. He pays attention and he never misses a thing.

"Are you ever bored?" I asked him. He shook his head.

"What keeps you from being bored?"

"Listening."

"What do you listen to?" By this time I was thinking that because John's listening is so fine-tuned, he may even be hearing music of the spheres, divine sounds that are lost to the rest of us.

"I am listening to you," he answered.

Right.

It reminded me of one of my favorite stories, probably apocryphal, about Gertrude Stein on her death bed. Her faithful companion, Alice, believing that mortals may be given divine insight at the threshold of death, leaned over Gertrude and asked in a whisper, "Gertrude, Gertrude! What is the answer?"

Gertrude opened one eye and responded dryly, "What was the question?"

YOU CAN'T COUNT
HIGHER THAN ONE

Journal of Healing – July 17, 2002

By Mary Koch

I don't know when I got numbed-out by numbers. It could have been, as Carl Sagan would say, billions and billions of numbers ago.

Numbers are a journalist's meat and potatoes. If you want a hard-hitting, grab-em-by-the-throat kind of story, you've got to have numbers. You also have to make those numbers come alive. You can't simply say, "Farmer Quincy amassed a collection of 4,308,792 petrified corncobs." You have to say something like, "If you laid all of Farmer Quincy's petrified corncobs end to end, they would stretch from Boston to Los Angeles and back again to his Kansas cornfield."

So there I was, doing my journalist thing and reading about family caregivers. From one study I learned that there are more than 23 million Americans caring for a family member at home. From another source I read that "the value of family caregivers to the health care system is about $196 billion each year."

Any good journalist knows how to divide apples by oranges. I figured that if I divided $196 billion by 23 million, I'd know my "value" as caregiver for my husband. That's when I discovered I was numbed-out. I had no problem dividing 196 by 23. I just wasn't sure what to do with all the excess zeroes. Were we talking thousands or hundreds of thousands?

I sent e-mails to my brother and a friend, both of whom were college math majors. They gently explained how to deal with zeroes and agreed the answer was $8,521.74.

That's my "value" to the health care system. Frankly, I feel "devalued." I wouldn't do this job for that amount of money. Or any amount of money. Nor would most family caregivers.

Journal of Healing/July 17, 2002 Page 2

I can't help wondering, if I have any value at all to the health care system, why then must I hold down a full-time job in addition to my full-time care-giving, just so I can get medical insurance?

The Hospice Foundation of America, which collects these statistics, says two out of three caregivers also have jobs. Half of those spend more than 40 hours a week giving care on top of their jobs. One study figured that lost productivity, due to pooped-out caregivers, costs U.S. businesses more than $11.4 billion. I wonder if I have to subtract that from my "value" to the health care system.

Pinning a dollar "value" on caring for those we love may be necessary for economists and policy makers, but it's nonsense in the real world.

There are too many people and factors that don't fit into the equation. I'm thinking of our friend, Dave Harper, who stopped by on the Fourth of July. He was decked out as Uncle Sam, from his red-and-white striped pants to his enormous stars-and-stripes top-hat. He was just getting home from his daily visit to Harmony House, where his wife lives, and decided to show off his costume to John.

Every day, when Dave visits the nursing home, he wears a crazy hat for the amusement of the residents. He isn't really comfortable looking foolish; he's a fun guy, but not foolish. He says he was thinking about giving it up, but when he sees the smiles on the residents' faces, he knows he can't.

I asked if his wife complains when he misses his daily visit. "I don't know," he said. He never misses.

LOST CAR KEYS:
A SIGN OF THE TIMES?

Journal of Healing – July 24, 2002

By Mary Koch

It was a meeting of one of those do-gooder, save-the-world committees that I'm prone to join. One of the members, who happened to be a nun, was missing. Finally she called to explain that she had lost her car keys. Whenever that happens, she said, she accepts it as a Sign that she must examine whether she is trying to do too much. She would not be at the meeting.

That was years ago, but I think about it whenever I lose my car keys, which is frequently. I accept lost car keys as proof that I'm scatterbrained at best and a nitwit at worst. I am not yet spiritual enough to recognize messages from the divine in all events.

I especially had trouble finding anything divine in the unholy week I just went through.

I was trying to get ready for a brief trip out of town, always a challenging process. This was going to be a solo trip, but my husband never fails to break my heart by saying, "I want to go with you."

"I'd like you to go," I answer, "but it just wouldn't work this time." I was headed to a writers' conference, with meetings from 8 in the morning to late at night. Not a lot of time in there for care-giving. John reluctantly agrees, and watches, with patient amusement, my getting-ready-to-leave process.

* * *

FIRST AND MOST of all are the logistics of scheduling three caregivers – Russell, Marlenea and Kathleen – to provide the round-the-clock assistance John requires. Then comes a long checklist of things to be done, promises to be kept.

I tackle each day as my departure draws closer: Today I have 24 hours minus hours required to care for John, minus hours required to get my work done, minus hours required for chores around the house, minus hours to sleep – and before you know it, I am minus hours. Twenty-four are not enough.

So I fret and fume through the hours I have, trying to stay up with my checklists. That's when the phone rings.

"Now what," I mutter as I reach for the phone.

The "what" is one of John's caregivers, Marlenea. Her little boy is very ill and requires a trip to Children's Hospital in Seattle for a blood transfusion.

* * *

SOME PEOPLE, nuns probably, get the message in simple ways, like with lost car keys. Others of us require something bigger, like a whomp alongside the head.

There are events in life that send a message with clarion resonance. Births. Deaths. Strokes. A little child's illness. All of a sudden you clearly understand what is important. All the rest of it fades into insignificance.

Marlenea was worried not only about her little boy, but about the disruption of my plans.

"There's no problem," I said, and I've never been more sincere. "You worry about Charlie. The rest of this doesn't matter."

I delayed going to the conference by one day and thoroughly enjoyed that day of grace and relaxation as I completed my preparations. John's daughter Katie gave up some of her vacation week to stay with her dad a while. Russell pulled double shifts, taking over for Marlenea.

About all I missed at the conference was the keynote inspirational speaker.

"Heck," I told John. "I already get more than enough inspiration. I live with you."

I'm back home. So are little Charlie and his parents, all doing fine.

"It's interesting," I e-mailed a friend, "how when things don't work out, they still work out."

PUT A WOMAN IN CHARGE
AND WHAT DO YOU GET?!
Journal of Healing – July 31, 2002

By Mary Koch

Alas, it is time once again to hear from Dr. Schlock, commentator on practically everything and expert on pretty much nothing.

Journal of Healing: So, doctor, what's your reaction to the HRT controversy?

Schlock: Hmm. HRT . . . Home Run Threat? You planning to turn this into a sports column? So, how 'bout those Mariners!

Journal: No, no. Hormone Replacement Therapy. The drugs for menopausal women. HRT is a combination of estrogen and progestin, among the nation's largest selling drugs worth billions annually.

Schlock: Booorrring! Do you realize that 80 percent of your readers just turned the page?

Journal: Wrong. Only 49 percent. Women make up 51 percent of the population. And some six million women have been taking HRT.

Schlock: Why, are they sick?

Journal: No, they're going through menopause, a perfectly normal stage of life. Studies vary, but anywhere from 16 to 30 percent of women going through menopause have problems, such as severe hot flashes. A lot of women whose problems aren't severe take the pills too.

Schlock: Why?

Journal: Because they've been told HRT is good for them. They've been promised they'd stay younger, sexier and healthier. Then a federal study determined that of the six million women currently taking HRT, nearly 25,000 could be facing life-threatening side effects such as breast cancer, heart attacks and stroke. So now a lot of women don't know what to do.

Schlock: You want ME to tell them what to do? I'd rather tweak Saddam Hussein's mustache than tell six million women what to do.

Journal: No, we don't want you to tell us what to do. We just want to know what you think.

Schlock: Well, I think it just goes to show what happens when you put a woman in charge.

Journal: What do you mean?

Schlock: This federal study you're referring to is part of the Women's Health Initiative. It came about after a woman, namely Dr. Bernadine Healy, was appointed head of the National Institutes of Health in 1991. She was the first woman put in charge of the NIH.

Journal: So, did it make a big difference to have a woman in charge?

Schlock: Let's put it this way. Before her appointment, women were usually excluded from clinical studies. She put a stop to that. And during her two years as NIH head, she fought to establish the Women's Health Initiative to study the causes, prevention and treatment of diseases affecting women.

Journal: But the estrogen pills had been on the market for decades. Hadn't they been studied and approved years ago?

Schlock: Critics of the drugs claimed they had never been subjected to adequate scientific study. A study was initiated five-and-a-half years ago, and it came to an abrupt end when scientists realized they were jeopardizing the women they were studying.

Journal: So we have a woman to thank for these results.

Schlock: You do indeed. Sales of the drugs have plummeted, and you have a woman to thank for it. The manufacturer's stock is in the toilet, and you have a woman to thank for it. If a woman heading a federal agency for just two years could cause all that, can you imagine what it would be like to have a woman in the White House?