I can hear !

I'M SORRY - OK?

I know . . . I haven't written since the end of March and I've heard plenty about my dereliction of duty. For a while I didn't think I had anything new to report here. I repent - for now.

During my clinic visit in February, Dr. Bromberg asked me if I was sleeping through the night. I told him that I wake up two or three times each night because I need to pee. He said something like, "You think you need to pee, but if you weren't waking up you wouldn't know you needed to pee." I'm like, "Huh?" I mean, I think I know when I need to pee. I figured that guys over 60 just need to pee more often. He went on to explain that I could be waking up because my oxygen level decreases at different times during the night. Then, because I wake up, I say to myself, "Oops - gotta pee." I asked, "Are you saying that I have sleep apnea?" He said, "It is a possibility." I'm like, "Hey, according to Gerrí, I don't even snore, and I'm skinnier now than I have been for 20 years." I thought that sleep apnea was something that overweight snorers get. He said that he was going to order a pulse oximeter test for me.

So eventually a guy showed up at my door with this little doohicky that I put around my wrist like a watch. It has a connection from the thing on my wrist to one of those things that they clip on your finger when you go to the doctor for a checkup. It measures pulse and oxygen levels and records them in the little wrist thingy. So, I slept one night with the pulse oximeter and the same guy showed up the next day and picked it up. About a week later I got a call from the ALS Clinic. They told me that my test showed a problem and that they wanted me to spend the night at the University of Utah Sleep/Wake Clinic. (Why don't they just call it the Sleep Clinic. Isn't it obvious that if you aren't asleep - you are awake?) So, a couple of weeks later, I spent the night up there.

The tech person at the Sleep/Wake Clinic, hooked me up to a whole bunch of wires - on my head, by my eyes, on my chin, on my chest and tummy, on my legs and arms, etc. I was wondering if they really expected me to sleep with all this stuff. But, sure enough I fell asleep, but not for long. About an hour later they woke me up (what the heck?) and put a mask over my nose and mouth connected to a bi-level positive airway pressure (BPAP) machine. Now I knew that I wasn't going to sleep with that thing blowing air into my nose and mouth - but wrong again, I slept through the night without getting up to pee. Interesting. They woke me up at 6:30 a.m. (what the heck again) and sent me home.

Later that week, the pulse oximeter guy showed up at my house and delivered a BPAP machine and taught me how to use it.

Eventually, I learned that my oxygen levels were fine until I entered the REM (Rapid Eye Movement) sleep state. During REM your brain acts like you are awake, but your muscles are very relaxed. Apparently, my ALS mouth and throat muscles were relaxing enough to constrict my airway. Then the oxygen level was dropping from near 90% to about 65%. And guess how many times during the night. Yup - 3 times.

So I have been using the BPAP every night, and I don't wake up to pee. Dr. Bromberg is a pretty smart guy.

My speech continues to get worse. I'm using my little white board and dry-erase markers all the time now. If I'm on the phone, which I try to avoid, I use the "Speak It" program on my iPad. So, last week (May 13) I had a follow-up appointment at the Sleep/Wake Clinic. I approached the reception desk and told the person there, "I'm Kevin Taylor and I have an 11:00 appointment with Dr. Sandar." (At least that is what it sounded like in my head.) The reception person looked at me like I was speaking a language not found on this planet. So, I wrote down what I was trying to say on the little white board. I showed it to her, and she took the white board and marker from me. (First time that has happend.) She wrote a bunch of stuff on it, which turned out to be instructions on how to fill out three forms. She smiled and gave it back to me. I read the instructions then erased the board and wrote in big letters, "I can hear." She was a little embarrassed but we both got a good laugh out of that.

That was the first time that I realized that I could be mistaken for a deaf person. But since then, I've noticed that some people speak louder to me than they otherwise would. And some people talk to me like I'm about four years old. Interesting. My ears and brain are in good working order (I think) but when you talk funny some people assume stuff.

One other thing to report and I will finish this. I am no longer putting any food or beverages in my mouth. I am taking 100% of my nourishment through the PEG feeding tube. No food - not even Haagen Das Chocolate Chocolate Chip ice cream. When people hear this they tell me how sorry they are for me. But honestly, I don't miss it. You may not believe me, but it is true. Eating became such a chore. I got so that I was choking on stuff and coughing and coughing and coughing. It would really wear me out. I really am fine not putting food in my mouth. I think it is harder for some people to eat when I'm there because they assume I feel bad.

OK! That's it for now. I need to write about some experiences that we have had around the house and on a road trip to San Diego.  Our last ALS Clinic day was last week so I need to update you on what Gerrí and I learned there.  I won't let two months pass before I write about this stuff.