Fun around the yard - and - On the road.

Spring has sprung.

As our weather got warmer, I got worried that I had not yet turned my sprinkler system on.  On top of that, I found two broken riser pipes and three broken spray nozzles.  No big deal - just the typical annual lawn sprinkler maintenance, right?  Wrong!  First of all, I found that walking around on my lawn or in the garden beds is a hazardous activity.  I fell down a couple of times on the uneven surface.  And - when I kneel down to work on something, standing up is perilous.  I have the bruises and scraped elbows to prove it.   I fell backward when trying to get up from the kneeling position. It was weird because, I could feel myself falling backward, and couldn't do a darn thing to stop it. Timber!  I fell back on my butt and rolled onto my back - not too bad if falling on the lawn, but falling on the sidewalk was rough.  The work needed to be done - so now what?  I discovered that I am much more stable if I start out crawling on all fours.  So I got to work making the repairs.  If I needed a tool that I didn't have, I would crawl back to my tool box, get the tool, and crawl back to the broken pipe or nozzle.  I was able to complete the necessary repairs, but that meant it was time to stand up.  I hadn't planned for that part.  So I sat there studying the yard and decided that I would crawl to the ornamental pear tree that is growing in our park strip.  I crawled across the yard and the sidewalk to the base of that tree.  I raised myself from a crawling position to a kneeling position by walking my hands up the trunk.  Then I selected a strong lower branch on the tree, grabbed it, and with a grunt or two, pulled myself up to a standing position.  Success!

If you drove by my house that day, you would have seen this strange sight.  Not all of my neighbors know about my situation - so I'm sure that they would think that I lost a few marbles.

A few weeks ago, Gerrí and I decided to get out of town.  We decided to drive down to San Diego, and take a shortcut back through the Mojave Desert Preserve between Palm Springs and I-15 near the Nevada/California border. I knew that my left hand was weaker than my right hand, but I didn't anticipate a particular problem associated with that fact.  I did most of the driving and found out that holding onto the steering wheel wears on your hand muscles.  You just don't think about things like that, until it is a problem.  What kind of problem?  Well -- it just so happens that you use the same hand muscles to undo buttons.  And one the most important buttons you have is the one that holds your Levis up.  This wasn't a big deal until we arrived at our hotel in San Diego.  I had an urgent need to answer the call of nature.  Gerrí said that she would go to the check-in desk while I found the restroom.  I made tracks to the bathroom.  When I got in there, I went to undo my britches and found that I could not, for the life of me, undo that button.  So, there I am, working on this button until I'm breaking a sweat and having a panic attack!  I was sure that I wasn't going to make it, and that I would have to run out into the hotel lobby screaming for Gerrí - but somehow, I was able to overcome that obstacle and proceed with that which is necessary to balance one's health and hydration.  After that, I spent some time trying to figure out a work-around.  I started by leaving it unbuttoned and just relying on the zipper and my belt.  That works, but isn't ideal.  After some effort and trial and error, I taught myself a different hand position that relies more on my right hand when wrestling with that particular button.  When my right hand catches up with my left hand, I'll have to figure something else out.

See - these are the little things that you never think about until, one day, you are confronted with the challenge.

I had another little problem to cope with on that trip.  You have probably heard me say that managing saliva is one of the challenges with ALS.  Anyone who has seen a program featuring Stephen Hawking, the famous physicist, has seen the saliva management problem in its extreme.  Well - the way that the doctors treat this is by giving you a medication, which has, as a major side-effect, dry mouth.  I was taking amitriptylene which is an old-school antidepresent.  It was working for me pretty well, but it left a bad taste in my mouth - a sort of sour metallic taste - yuck!  So, I asked the doctor what other meds he had on his dry mouth list.  He wrote a prescription for the patches that people stick behind their ear when they are on a cruise - to avoid sea sickness.  A side effect is dry mouth for most people.  I was using that patch while we were on our little road trip, but it didn't seem to be working very well.  I decided that I would go back to the old medicine and cope with the bad taste.  No problem, right?  Wrong, again.  It seems that a certain percentage of patch users have an adverse reaction when they remove the patch.  I had been changing the patch every three days for a week or two - and wouldn't you know it, I'm one of those people that get the bad reaction.  So, I had two days of vertigo and nausea.  I ended up staying in the hotel room a couple of days while Gerrí ran around town. 

When I wasn't feeling well, my teeth kept chattering like I was freezing to death.  I didn't feel cold, but my teeth were chattering away.  Really weird.  When I had a chance to ask the doctor about it (ALS Clinic Day which I will write about next), he said, "You know how your reflexes are really exaggerated?  Well the teeth chattering is another reflex run amok."  He then tapped my chin with his little mallet and my teeth immediately started chattering.  He had a med student with him.  He turned to the med student and asked him what he was seeing, what it is called, and what causes it.  That poor med student was stumped.  "Brisk" reflexes is a sign of upper motor neuron disease.  ALS is a disease of the upper motor neurons and the lower motor neurons.  If you don't have problems with both, you don't have ALS.

So, now I can make my teeth chatter whenever I want just by tapping my chin.  Fun, huh?

Gerrí reminded me of another experience we had in San Diego.

When we checked into the hotel, we asked if they had any handicapped rooms available.  Those are good because they have something to hold onto when showering, the shower is big, and they usually have something to sit on in the shower.  They told us that their handicapped rooms were full but that they would put us in a room near the elevator to minimize my daily hike.  They also told us that the handicapped rooms were on the 9th and 10th floors.  The room they put us in was on the 5th floor.  No problem, right?  Wrong yet again.  At about 4:00 in the morning the fire alarms went off and a voice came over a speaker saying "Please exit the hotel. Do not use the elevators."  By the way, the elevators were disabled.  So we covered our nakedness (sort of) and hoofed it down the 5 floors.  I'm shuffling down the stairs, with a whole bunch of people pushing behind me, but we got down 5 floors without much problem.  Does this seems strange to anyone?  If someone requires a wheel chair, and they rode the elevator to the 9th or 10th floor to get to their handicapped room, what happens to them if there really is a dangerous fire?  I learned the answer to that question from a fireman friend.  Those folks would be "crispy critters."

My favorite activity in San Diego is to visit a fishing pier on Shelter Island, and watch the Southeast Asian senior citizens fish for mackerel.  I can watch them for hours.  They all have lines out with multiple hooks on each line.  They sit patiently chatting with each other.  Mackerel swim in schools, so, suddenly everybody's fishing pole starts to bend at the same time.  They reel in their lines and have 3 or 4 fish on each line.

We talked to a local dude (not from Southeast Asia) and asked him how he prepares the mackerel.  He said you lay the fish on a hickory board, season to taste, put them in your smoker (or whatever) for 15 minutes.  You remove them from the stove (or whatever), throw the fish in the trash and eat the board.  He was catching them to use as bait for "real fish."  But, those Vietnamese and Laotian people eat every mackerel they catch.

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.