On the symptoms of sleep apnea
Jim: I was in my early 30s, about 20 years ago, when I began thinking that something must be wrong with me. I fell asleep everywherein church, at stop lights, even sitting in the living room talking with someone. One second I was there and the next second I was sleeping, like someone drew a curtain. I didn't have any control over it. I could be talking to you right now, and then you wouldn't hear my voice any more. I'd be asleep.
I worked in sales in the restaurant industry, and I had to work very, very hard not to fall asleep in the waiting room while a customer met with a rep from another company. It did not look good for business.
Nancy: Back then we had three small kids and I was working full time, and of course I would have liked a little more help. But he'd fall asleep as soon as he got home from work and sat down in a chair, so it was obvious that I couldn't really push the issue.
He was tired and irritable. A lot of our family members thought he really didn't like them, because the minute we'd sit down at their house, he'd fall asleep!
Jim: I felt very lethargic, with absolutely no ambition at all. And that wasn't me. I was never the person who was going to win the Dale Carnegie award, but I had some drive, some ambition.
Nancy: Sometimes we'd be riding in the car with the kids and he'd fall asleep at the wheel and start to go off the road. I just learned to stay awake and talk to him and say, "Are you OK?" Even now we always ask each other, "Are you OK for me to go to sleep? Do you feel pretty awake?" And he'll say "Yes, if I start to feel sleepy, I'll wake you up." To this day, we have that arrangement.
Jim: She wanted to take over the wheel and I'd tell her, you know, being the male, "No just stay awake and talk to me." But when I was at my worst, I wouldn't remember long stretches of the road; I'd be asleep or in some kind of a fog. I never had an accident, but came close a few times. Once we climbed the cement medianthat really gets your heart pumping.
Nancy: Oh yeah, we were coming up to Cleveland on Interstate 77. I was tempted to take the keys, and at that point it really made us realize how dangerous this was. It never affected us to the point where we fought about it, but I definitely got annoyed and very scared.
On Jim's snoring and breathing problems
Jim: Of course my wife complained. She often went to bed before I did so that she had a chance to fall asleep before I came in, because if I started snoring, there was no way she could fall asleep.
Nancy: When the kids were young, I remember them saying, "Daddy really snores." They could hear him clear across the house in their own bedrooms. I'd always hear jokes about how husbands snore and I thought, "OK, I got a snorer." I didn't realize that it was such a health issue.
I never slept in another room, but I remember putting the pillow over my head and turning over and trying to go back to sleep. I started to really get concerned when he stopped breathing though.
Jim: She was terrified to fall asleep, because she was afraid I'd stop breathing and then I might not wake up if she wasn't there to stimulate me. She told me on a couple of occasions that I had stopped breathing for so long that she more or less sat on me and pounded on my chest trying to get me to breathe again.
Nancy: Some nights I'd kick him. I would say, "Wake up, you're not breathing!" You don't get much sleep to begin with when you have babies around, so with a snoring husband on top of that I was tired. I remember being so tired that I could barely hang on to things, but you just do what you have to do.
On finally deciding to get help
Jim: If normal functioning in life is 100%, I was probably at 55% at my worst. I was a heavy drinker at the time, was falling asleep everywhere, and seemed to be getting strep throat a couple of times a year.
I knew that something had to change. I wanted to be healthy for my kids and my wife. I was worried about trying to stay employed. In sales you can go from hero to zero in a very short time. I'm sure I couldn't have survived for much longer without treatment, because I was almost to the point where I would have arrhythmias in my sleep. I gave up alcohol and we started looking for solutions.
My wife is a nurse at the Cleveland Clinic, where I got an appointment with an ear, nose, and throat specialist. We talked with the doctor and he listened to my heart and asked me to come in for a sleep study.
Nancy: I remember the doctor asking me, "Is it horrific snoring?" I said, "Yes, it's horrific snoring." Then he explained that Jim had sleep apnea. He told us about men dying in their sleep, and that they were just starting to understand this disorder.
It was the first time we'd ever heard of it, but it was terrifying. I don't think I realized how scared I really was until after he had the study, and they showed us how low his oxygen levels were dropping. When you're a nurse and you know what those numbers signify, it means a lot more to you.
On treatments and over-the-counter remedies
Jim: They recommended surgery. In my case, the problem seemed to be that the soft palate at the back of my mouth was falling into my throat and covering the airway.
So they did an operation to reduce the size of the soft palate, remove my tonsils and uvula, and repair a deviated septum. And for about three months I saw a real improvement.
Then I started to feel tired again, and the symptoms came back. So I got a continuous positive airway pressure (CPAP) machine. We tried all these contraptions in hopes that I could tolerate one of them; I looked like Frankenstein's brother in bed. But I just couldn't handle it; I have a problem with the tissues in my nose swelling upI couldn't get enough air, so eventually we gave up.
So I was referred to a pulmonary specialist, who determined that my tongue was too large and I was swallowing it when I laid on my back. He recommended that my wife take a shirt and sew a pocket on the back, and put a little foam football in thereso that when I rolled over on my back, it would be uncomfortable, and I'd be more inclined to sleep on my side.
Well, I'm a very large person, about six foot, five inches and 365 pounds, right now. I rolled right over on the football and it doesn't bother me at all, so pretty soon we graduated to a full-size NFL regulation football.
Nancy: The football shirt has been a lifesaver. Over the years, I think I've made at least 10I've become quite good; I should probably see if I can patent it.
He has a couple so we can alternate and we can wash them. They wear out pretty fast too: I think we're due for a new one pretty soon. We just use a heavy T-shirt or polo shirts that he didn't like to wear. I make a pocket out of Velcro and an elastic strap that helps hold the football in the middle of his back.
Jim: I also use a special pillow called the Sona Pillowit has a very odd wedge shape, and at each end there's kind of an indentation. It keeps your head in a position where your jaw will fall forward so you can't swallow your tongue and have an obstruction. It works well for me, and the combination of the pillow and the football shirt have helped me feel pretty good.
If don't sleep with either of them, I wake up groggy and with a headache, all the classic symptoms. I travel with them now, pack them in a suitcase wherever I go.
Nancy: He's also started exercisinga couple of days a weekand losing weight, which I can tell is helping him sleep better. I'm just tickled that he's working so hard to improve it. We both have a love of desserts and chocolate that we fight. So we're trying not to buy too many things that we shouldn't eat. We're both just really trying to keep his weight down, and that helps a lot.
On looking backand toward the future
Jim: I'm feeling much better these days, although I still have occasional apneas, and I know I'll never be fully cured. There's still a fear factor within my family too, like when the kids, who are now in their 20s, ride in the car with me. They'll say, "Are you OK, Dad? Do you want me to drive?"
Nancy: I still feel like I sleep with my ears openand if I wake up in the middle of the night, I always listen to see how he's breathing. I'm relieved that now it seems deeper and more even, especially since he's been exercising. But the worry never really goes away.
He says he still snores now, but it has been a long time since I remember waking up from it. It's more of a whistle, and if I do wake up and hear that he's obstructed, I say, "Hey, turn on your side a little more. Adjust your shirt or your pillow."
Jim: We never fought over my sleep apnea. I'm a certified lay speaker at church, and when I do sermons I never fail to tell people that she gets my vote for sainthood. She's had to put up with many more problems in having a relationship with me than I've ever had to put up with her.
She has always been 1,000% supportive of me, and I probably wouldn't be alive if it wasn't for the fact that she had some of the medical knowledge that she doesor at least for the fact that she worked at one of the top hospitals, when many other doctors and medical people had never heard of sleep apnea before. We just knew we had to figure it out together, and she persuaded me to look around for someone who could help.
Nancy: His snoring and his sleepiness never changed my feelings for him. I was just concernedI didn't want his children to grow up without a father. I wanted him to be around long enough that we could retire, and travel, and enjoy life.
What can I do to help him make it better? That's how I feel. I just keep telling him to keep exercising so he won't leave me alone. I want to have him around for a long time.