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.

Home Movie

This one is a little different.  I thought that I would post a video blog entry.  I began to realize that I have almost no recordings of my voice.  So I did this to compare my voice now with Fall 2010.  Then I got the bright idea to show you how I eat. 

My voice sounds different from day to day.  On this video, my voice is much lower in the feeding segment.  I had been coughing all day.  Gerrí suggested that we do it on a different day because she said that yesterday was a bad day for being understood.  I found that it was actually pretty easy to understand.  Some days it sounds like all of the sound is coming through my nose, as if I had a cleft palate.  Every day is a new adventure.

I am using my whiteboard or my iPad more often to help if the other person is just not getting it.  We had the kids over on Sunday night and I ended up using both the whiteboard and the iPad.

Here you go:   http://youtu.be/ELVYVwzZRgs

Maui - January 2013

I mentioned in the last post that I would write about how ALS affected our trip to Maui.  So . . .

These are some of the things we like to do in Maui:

1) snorkel
2) boogie board
3) eat fresh fish
4) relax on the beach
5) look for sea glass on the beach
6) whale watching
7) walk up and down Front Street in Lahaina
8) absolutely nothing

1)  The snorkeling was great.  The weakness in my legs made it more difficult to get in and out of the water.  If there was any kind of shore break, the waves just knocked me over.  We managed to do some snorkeling at Kapalua Bay, but the waves were up a bit so I just about drowned getting situated in the water with my snorkel and fins on.  Once I was in, everything was great.  Because it's harder for me to deal with the waves we spent most of our snorkeling time at mile marker 14 - the Olawalu area south of Lahaina.  The water is really flat in that area, even if the waves are kicking up elsewhere on the island.  And, there is a really nice reef there with lots to see, including turtles.  Tiger sharks like turtles, so warning signs are posted along that beach.  I know this to be true, because one time I swam with a turtle that had one of its front flippers missing.  We also went to Makena to see if we could snorkel there, but the waves were bigger than at Kapalua, so we didn't snorkel there.  Too bad - because we almost always see turtles there.  They have a new (to me) snorkel out that has two separate tubes - one for inhaling and the other for exhaling.  There are little valves that seal on the inhale side when you exhale and visa versa.  Last year I was having some trouble breathing with the old style snorkel.  This new development made breathing easier.  I was not able to dive down and get stuff because my leg strength couldn't get me down there.  I found that I was moving around mostly with my arms, which worked fine.  If there had been any kind of semi-strong current, I'm not sure I would have been able to depend on the fins.   So snorkeling went pretty well and we had lots of fun.

 (Note: Don't mind Gerri's hand sign. She recently joined a gang.

My hand sign is the correct "hang loose" sign.)

2)  Unfortunately, boogie boading is out - at least on Fleming Beach where I love to boogie board.  Boogie boarding requires a lot of leg strength to stabilize myself against waves as I am waiting for the wave I want, and then getting a good kick when the desired wave comes.  I'm useless in the waves.  Too bad.

3)  We ate lots of fresh fish!  In fact just about every meal except breakfast included fish.  Mahi mahi, Ono, Opah, Opakapaka, etc., etc.  We had it fried, sauteed, broiled, in tacos - just about any way they can prepare it.  It's all good.  I had to eat slowly, and I didn't always finish the meal, but it was great.  It is a good thing that we went when we did because now I'm eating through a tube in my tummy.  (see next blog post)

4)  Relaxing on the Beach - no problem !!!

5)  Looking for sea glass requires walking around on the sandy beaches.  I found that the way my legs are now, my foot prints in the sand are different.  Normally, you see the whole foot, with the deepest part of the print at the toe.  My foot prints were all heel.  It made it tougher, but it also stretched my calf muscles, which felt good.  So we had fun and got exercise, but we didn't find as much glass as past years.

6)  In Maui, from December to April, the whales come to Hawaii to have their calves and to mate.  We can just sit on our lanai and watch the whales.  They are everywhere!  But every time we go, we do at least one trip with Ultimate Whale Watch.  We like these people - they are fun and knowledgeable.  Their boat is a small pontoon boat which makes it really easy to move from one place to another - compared to the big cruisers that some of the whale watch tours sail with.  We always see whales up close.  This year was no different.

7)  We didn't spend as much time in Lahaina Town.  I walked really slow - with lots of resting every few minutes.   (I used my walking stick, but I didn't have my AFO Orthotic/Brace until we got back.)

8)  Absolutely nothing - no problem !!!

I'm glad that we have been to Maui and Kauai many times over the years.  I strongly recommend that you go now, and not wait until some future ideal time to go, like when the kids are grown up or when you are retired.  If I had waited until being retired I would have missed out on so much.  And . . . it is fine to take the kids or go with the entire family, or friends - now and then.  We have taken the whole family, and the kids on some of these Hawaii trips, and we are glad we did.  But, we really cherish the times that Gerrí and I have spent there - just the two of us.  So, don't worry about the kids - they get over the fact that you left them home - I promise.  And, in fact, my kids always knew that we would spend some vacation time without them.  Our first trip together to Hawaii was in 1986 to see Halley's comet when Joey was only 2 years old.  We just tied him up outside with the dog, and he did fine (JUST KIDDING).  When we got married in the Salt Lake Temple, the officiator counseled us to always plan time away from the kids.  We have always followed that advice.  The kids say that it has showed them how much we love each other.

Dust and Doctors

We have been busy since we returned from Maui.

Before we left, our contractor started work on remodeling our main floor bathroom.  It was a small guest bathroom with a sink and toilet - no shower.  We have two full bathrooms up stairs, but we are trying to anticipate a time when I won't be able to climb the stairs.  To make use of the available space, we decided on a wet room, sometimes called a European style bathroom.  Several years ago, while on my way to Moscow, I spent a night in Copenhagen.  The room was small, but comfortable and clean.  The bathroom was a new experience.  It was small and all four walls were tiled to the ceiling.  Everything you need is in there.  In that small space you could sit on the toilet, brush your teeth in the sink and take a shower all at the same time - a very efficient use of the space.  So our new bathroom is patterned after that experience with the exception that we need enough room for a motorized wheel chair (which I will supposedly need at some point.)

We've had men here doing, demolition, framing, electrical, plumbing, dry wall, tile, etc.  While we were away, they got a lot of the heavy duty stuff done.  Next, we need to install the plumbing fixtures.  All of that stuff has been selected and should be installed within the next couple of weeks.  We have been dealing with lots of dust coating everything (cough, hack).  But we have a very good contractor - if you need one, give me a call.

Meanwhile, on the medical end of things, Dr. Bromberg had prescribed orthotics to help compensate for the weakness in my lower  legs.  That weakness causes something called "foot drop."  My toes hit the floor as soon as I put my heel down.  I cannot stand on my toes (my ballet career is over), and I am at risk of tripping on my own foot.  With a normal walking gait, you roll from your heel to the front of your foot with each step.  With foot drop, you tend to walk slowly, flat footed, with your upper body hunched over your center of gravity.  Walking in this way takes a lot of energy so I haven't taken any walks around the block - until now!

Tuesday, February 5th, we were scheduled for a fitting of the orthotics.  When the doctor explained how these things work I had a hard time  picturing it.  But now as they were fit to my feet, I could see.  This is how you use these things.  First you pull the soft insole out of your shoe.  You tuck the foot part of the orthotic into your shoe and replace the insole.  You put your foot into the shoe.  The blue part covers your shins and is attached with velcro straps that go around your leg.  The big benefit is that walking is more normal because the device holds the front of my foot up.  To me it made a dramatic difference.  Walking doesn't take as much energy with these things on.  I don't hunch over as much when I walk.  My steps roll from heel to toe just like they should.  The first thing I did when we got home was walk around the block.

Wednesday, February 6th I was scheduled at University Hospital to place a PEG tube into my tummy.  I have continued to lose weight.  Three months after my first clinic visit, I lost around 8 pounds.  Three months after my second visit I lost another 8 pounds.

My ALS started in the muscles used for speech, eating, and swallowing.  Eating can be a real pain in the butt.  I eat very slowly and seldom finish a meal.  I have felt pressure to maintain my weight and I haven't done a good job. So I need help getting all of the calories I need.  That is what the PEG tube is for.  A lot of people resist the PEG tube placement, but I was ready for it.  The illustration here shows how the tube is placed.  The procedure is pretty straightforward and I didn't have any problems.

Next, on Thursday February 7th, a couple of cases of formula were delivered to our house.  Becky, our new home health nurse came to show us how to use and care for the PEG tube.  After we got the hang of it, Becky left, promising to follow-up the next day, which she did.

 

Gerrí just read this and she feels like it is a bit of a downer, so . . . .  Three guys walked into a bar, a Catholic Priest, a Mormon Bishop, and a Jewish Rabbi . . . . . . .  now you take it from there.

 

To maintain my weight, I need to consume 6 cans of formula - two cans/three times each day.  This is how it works.  First we mix the formula with some water to make it thinner.  Then I loosen the tubing clamp and attach a large syringe to the adaptor.  We let gravity do the work, so the syringe is left open.  We pour the formula into the syringe and the formula goes down the tube and into my stomach.  We put some water into the syringe to clear the tube before and after the formula. That's it!  Very simple.  And it only takes 15 to 20 minutes to do the whole thing.  I had to work up to two cans at one time, but it only took a few days for me to tolerate that amount.  Now, if I don't feel like eating, I don't have to.  On the other hand, I can eat when I want to.

 

For example, I got a craving one day for a phily steak and swiss cheese sandwich so we went to Charlies Steakery in the mall.  We went to cheese cake factory the other day where I had the fried shimp platter.  I also like the Teriyaki chicken which is served at Teriyaki Grill.  Our friends, Mike and Tiffany Keim own it so this is a plug for them.  We have  one in Draper, but I think there are several locations around the valley. I'm feeling like I want to go get some Benihana hibachi steak and veggies.  So, I don't want to hear any pity about having a tube in my belly, because I have the best of both worlds!  I have always been a picky eater.  I have driven my mom and Gerrí crazy over the years.  I have often wished that I had a trap door in my belly to put the food in.  Now I have one! 

 

In the two weeks that the tube has been in, only twice have I had all six cans in one day.  The important thing is to make sure that I am getting enough calories to maintain my weight - either with food or the formula.  If I ever get to the point where I can't eat, I'm ready.

 

The main benefits I see are (1) I don't feel pressured to eat, (2) I can be sure that I am getting all the calories I need, (3) mainlining this stuff directly into my stomach has reduced my coughing and choking, and (4) I get to pick and choose what I eat.

 

Becky came back on Thursday, February 14th to check on me and she said that everything looks good.  She will visit one more time on Thursday the 21st.  After that we will be on our own.

 

Wednesday the 13th, was clinic day.  We visited with Doctor Bromberg and all of the specialists.  I really like those people.  They gave me some fun toys, including a small white board that I can write on, a device to help me button buttons, a thingy which makes it easier to grip and open bottles, a shoe horn that is long enough so that I can use it without bending over, and some elastic shoe laces that I can use to turn my laced sneakers into slip ons.  For the most part, I don't need any of this stuff yet, but it will be nice to have on hand if and when.  I also got a little specimen container that you receive when they ask you to pee in a cup.  This container was labeled stool sample.  Inside was a little wooden stool. HA!

 

The main things that came out of clinic are that my speech is getting worse, and that my lung capacity hasn't diminished.  My speech is getting to the point where I sometimes need to use the iPAD or a small white board to make sure that I am understood.  The lung capacity is very good news because it measures how well your diaphragm muscles are working.  The pulmonologist said that I was her star for the day. So far, so good.

 

Well that pretty much brings us up-to-date.  I need to write about how we did in Hawaii with this added dimension in our lives.  Bottom line is that we had a really nice time.  More later.

 

 

Good Bye U of U, Hello Palo.

It has been over 2 months since my last post where I wrote, "There have been some new developments at work, which I will write about soon."  I guess I lied about the "soon" part.  Let's see if I can catch this up.

In December, I was digging through the details of the University of Utah's employee benefits.  I was trying to plan ahead for a time when I might need to stop working. With much needed help from Joan Gines, Assoc. VP in HR, I learned that it would make sense to retire sooner than later. We laid it all out and it was obvious that a medical retirement -long term disability - was a really good option for me.  In fact, there was one question remaining when we were done.  "Where do I want to be - at the office or spending time with my family?"

With the facts in hand it took just a couple of days to decide that I really needed to take adantage of the opportunity.  So, as of January 18th, I am officially on FMLA (Family Medical Leave Act). Before I qualify for disability benefits I have to be away from work continuously for 6 months.  My 6 months started after my last day in the office on January 18.  The very next day, Gerri' and I left for 2 weeks on Maui.

My friends at the U organized a retirement party for me.  I was overwhelmed by the support.  The party committee made a video with several of my coworkers singing "good by Kevin" and "we'll miss you Kevin" set to two Beatles tunes.  Earlier in the day,  I went to lunch with my friends that I "supervised" over the last few years.  At the afternoon party they gave me a new IPad in a Zagg case with a built in keyboard.  I was planning to purchase one of those to use as my voice as my speech gets worse, so, I was thrilled!  Then my friends gave me a new walking stick which I have used every day since.  We even gave it a name - Palo.  Palo goes everywhere I go.  (Palo is the Spanish word for "stick.")

They also gave me a beautifully bound book about the Salt Lake Temple.  Then, because they received more donations than they needed for the iPad, they gave us spending money for Maui.  My friend Eve Mary Verde gave us a prepaid American Express Card. We will make good use of those gifts and we truly appreciate the generosity and support of our friends.  Terry Cirillo took photos of the event which can be found at this link:  Retirement Party Photos

When this party was being planned, I felt that it might be best to wait until after we returned from Maui. My boss (and friend) Eric Denna encouraged us to have the party before we left.  I'm glad we listened to his advice because the two weeks since we've been back from Maui have been crazy.  I will describe these past 2 weeks in my next post.

Mmmm - Chocolate Chocolate Chip Ice Cream

Wednesday, November 14th was ALS clinic day.  We spent another 6 hours with all of the specialists at the clinic.  I really like those people - they are all so caring and helpful.

After we checked in at the front desk we were taken back to an exam room.  I asked the guy, where is Kenya? and he said, "OOPS, wait a minute."  When he came back he moved us down the next hall and put us in the room right next to Kenya's desk.  He said, "Sorry, I forgot that this is where I was supposed to put you."  Kenya had left instructions at the front desk telling them to put Gerrí and I in the room next to her desk, so that she can visit with us and keep an eye on us throughout the day.  That is our room on our Wednesday clinic visits.  We just LOVE Kenya.  She is such a sweet girl.  If she weren't married to a nice guy, I'd be trying to line her up with my son.

So, what did we learn from this visit?

Well, first of all, I lost 7 pounds since our August visit.  Kari, our nutritionist friend wasn't very happy about that.  I'm not supposed to lose weight.  With ALS you lose muscle mass.  If you lose weight on top of that, your body starts to burn muscle instead of fat.  So, nutrition is one of the big things that they watch.  If I lose any more weight, Kari thinks it is time for me to place a PEG line.

Here is the deal.  Bulbar onset ALS weakens the muscles involved in speech and swallowing.  As I talk, the muscles involved in speech become tired and my speech becomes more slurred and nasal sounding.  The more I talk, the lousier my speech gets.  And, as I eat, I get tired of eating before I have completed my meal.  I have never been an enthusiastic eater.  I'm the sort of person who eats to live - I don't live to eat with perhaps one very important exception.  My favorite ice cream is Haagen Dazs chocolate chocolate chip.  I love that stuff, and now I'm in the very enviable position of being able to eat all I want.  You know those 1 pint containers of Haagen Dazs?  I can eat one of those in one sitting without feeling the least bit guilty.  And each container has 1050 calories and 595 of those are fat.  I eat 3 or 4 of those a week and on the off days, I consume a chocolate malt from Arctic Circle.  (I remember when they used to spell it Artic instead of Arctic.)


1050 Guilt-Free Calories

So, in February, after the holidays, and after our Maui vacation, I will probably get the PEG feeding tube placed which will allow me to bypass the usual eating process.  But here is the great news!  I'm a picky eater (right Gerrí?) and I won't have to eat stuff I don't like. . . and I can still have my Haagen Dazs chocolate chocolate chip ice cream !!!

Dr. Smith, the doctor who diagnosed me, told me last spring that it appears that I have a slow progression rate.  We asked Dr. Bromberg.   He thinks that I am on the longer end of average.  There really isn't anyway to tell, and it doesn't do any good to worry about it.  We'll just take it one day at a time and not worry about the timing.  But, as a practical matter, it is helpful to have some idea of how long this will go.

For example, we were trying to decide if it made sense to install an elevator in our house so that, when I need it, I can easily move from the garage to the main and 2nd floors of my house.  If I were going to be around for many years, that could be a good investment. But it doesn't make sense to spend $35K for a few years of use.  When you compare that to about $8K to enlarge the main floor bathroom, you can see why the timing information is good to have.  We can turn our main floor office into a bedroom and expand the bathroom for about that amount ($8K).  Ann, our MDA lady, told me that she had a wheel chair lift in storage that has hardly been used.  She would like to get it out of her storage space so she said that if I can find someone to install it, I can have it.  If I end up in a wheel chair, that would be nice because I wouldn't have to construct an ugly 18 foot long ramp.  So - a FREE lift and no 18 foot ramp!

These are some of the practical aspects of ALS.  You don't spend much time thinking about things like this when you buy a house, but you should.  We all get old enough to want to avoid stairs at some point, right?

As far as my physical condition goes, I feel like I am doing quite well.  It is getting harder to talk but that was already a known problem.  I keep thinking that I should take video of me speaking so that I can compare how I sound today to how I sound down the road.  Now, that is entertainment!!!  So I'll probably do that for your viewing pleasure. 

I have more weakness in my lower legs.  This has slowed me down some and it takes more effort to cover any distance.  I have actually been using handicapped parking spaces!  I thought I would feel guilty about using the blue parking spaces, but guess what?  I don't!  It's a really nice perk.   I also need to be a little more careful that I don't stumble and fall.  Last week I went outside to get the newspaper and slipped with both feet flying out from under me.  I'm sure it looked like a cartoon, or a Three Stooges stunt, or a silly Dick Van Dyke fall.  Walking outside in smooth bottomed slippers on an icy sidewalk isn't the smartest thing I've done.  But, I used to get away with it with very little danger to life and limb.

All things considered, I'm feeling very well.  And I'm telling everyone that as my speech gets worse, I'm getting better looking to make up for it. 

That's it for now.  There have been some new developments at work, which I will write about soon.

No offense intended.

I don't mean to offend anyone, but please allow me to share something personal with you.

But first - I'm doing really well, life is still good, we're taking each day one at a time, with an understanding that each day is a small slice of eternity.  We are learning and benefiting from our experiences.  AND, as of this moment we have 78 days until we head to Maui.  It is what it is, and it's all good.  Now . . . . down to business.

This ALS is a terminal illness - no cure.  The most likely prognosis is that it will kill me sometime in the next 2 to 5 years. There is one medication that my doctor has prescribed that has a very modest potential to extend my life 3-6 months. (I know - big WOW, huh?)  Fortunately, I still work at the University of Utah where I have really good health insurance.  Even with my great insurance, the medicine costs $1600 per month.  I'm really lucky that there is only one medicine for ALS because this is a drop in the bucket compared to what a lot of people are paying for meds. I don't know when my last day at work will be, but at some point, I will be paying COBRA premiums for my insurance to keep the cost of this medication down and to cover the other medical costs associated with this disease.  I will be eligible for Medicare in 3 years.  The social security administration could give me disability, in which case medicare would kick in in 2 years instead of 3.  Either way, I probably won't get all my FICA payments back - and this is not a complaint about taxes.

I have a daughter who, after she became a single mom, did not have health insurance. She had to put off dentist and doctor visits until she found a job at a company that provided access to health insurance. Her son was covered through his dad's insurance, so my daugher would take her son to the doctor, but she felt that she couldn't afford to go.  We are the only modern, western industrialized nation where people have to make choices like this.

I have always been very healthy.  Except for ALS, my health is still better than an average person my age.  In one day, my wife's and kid's lives, and my life changed course in a way that we never imagined. This could happen to any of you and probably will.  Anyone in your family could get so sick that dealing with the illness could take your entire life savings, and more, including life itself.  You could get cancer, heart disease, a stroke, have a serious accidental injury, or any one of a number of afflictions that could change your life forever.  Something will take you out, sooner or later.

I admit that I was supportive of the Affordable Care Act (Obamacare) even before I got sick - in fact, I thought it didn't go far enough.  Some people would label me a "socialist" for feeling that way.  I hate labels, don't you?  Maybe you have good insurance, good health, and love your doctor, so you are thinking that your situation is secure and that this is someone else's problem.  I encourage you to think again and be open to the possiblity that next week, you or a loved one could be permanently disabled, or diagnosed with a life threatening or terminal illness.  If you lose your job, and are taking something as common as blood pressure medication, you could find that you are uninsurable. 

I don't pretend to know what the right solution is, but I'm sure that good people working cooperatively can find a good solution if they only will.  I do know that I am extremely glad the election is over on Tuesday.  Whoever you are voting for, please think about this and let your elected leaders know that they must stop playing politics with this, whatever party they belong to.  Being against something, just because the other guy is for it, is the worst possible excuse for not getting this and other problems solved.

After Tuesday, some people will likely be more pleased than others, but one thing is certain - the sun will rise on Wednesday morning and life will go on.  But, aren't you sick of all this silly political bickering and demonizing?  Why don't we stop putting up with it and let our leaders know that it is unacceptable!

By the way, for those of you out there who are very lonely, here is a recommendation.  Next election, donate some money to a presidential candidate and you will have more new friends than you ever wanted.  You will need a bigger email inbox and you might need better medical insurance to cover the broken finger you are going to get punching the delete key on your computer.  And . . . the party invitations you will get . . . . I'm just saying.

Welcome to ALS Support Group !

Gerrí and I have attended two ALS support group meetings. Anyone can attend support group meetings including friends and family members. The meetings are held in Taylorsville on the first Tuesday of each month. Anne Nicholson from the Muscular Dystrophy Association (MDA) sponsors and organizes these meetings

September Meeting

Our first experience was in September. We had no idea what to expect. The meetings are kind of social and not tightly organized. Members of the group can suggest topics, and Anne arranges to have someone there to address a specific topic. Each month, they arrange to have some pizza or deli sandwiches there, and we are encouraged to bring something to eat. So you walk into the meeting and everyone scopes everyone else out with extra curiosity aimed at the newbies. As the couples or individuals arrived, it wasn't necessarily obvious which person was the ALS patient and which was the supportive spouse, so if it wasn't obvious, one of the two would point to the other and say - it’s him or her. Of those we've met so far, the ratio of men to women with ALS is about 50/50. If someone comes cruising into the room in a wheelchair, it’s pretty obvious what's up. That first meeting we had wheel chairs, walkers, canes, and then there was me walking in on my own two feet (just like my daddy taught me). The first 1/2 hour or so was spent visiting and getting to know the others in the group. Before we introduced ourselves, I felt a little out of place with no walker or chair. But when it was my turn, the others heard me speak and I could see the recognition in their faces. It was like - OK, your legs still work but your mouth is screwy, so I guess you are one of us. "Hi, I'm Kevin, with bulbar onset ALS diagnosed May 2012! Happy to be here!!"

As I mentioned, members of the group can suggest a topic. In September, a family member who had recently lost a parent brought a speaker. He was a Cache Valley dairy farmer, now a nutritional supplement salesman, and he was there to tell us all about the miraculous curative powers of bovine (cow) colostrum. So - we all know that the first nutrition delivered by a mother to her new born child is colostrum - not milk. Colostrum is important because it helps the baby have its first bowel movement, and delivers antibodies from the mother that help the baby’s immune system - very important. Well, apparently, an industry has sprung up around bovine colostrum. Not everyone in the group felt this way, but I have to admit that I felt like I was witnessing the performance of a frontier snake oil salesman. According to him, there was virtually nothing that could not be cured with this stuff, so why not try it on ALS. He was offering samples for us to try and report back to him how we felt. Not exactly a scientific trial.

Fortunately, the ALS clinic nutritionist, Kari Lane, was there. She offered a balanced, medical perspective and had some actual test data showing where this may be helpful or harmful. That saved the evening for me. Both Gerrí and I were ready to bail out when Kari stepped in and the rest of the evening was a very helpful discussion of diet and nutrition issues, including discussions about feeding tubes and such. These are all things that we will likely have to face, and some in the group already have feeding tubes. These tubes go directly into the stomach and are not visible under the clothing. They don't prevent a person from eating the regular way, but when an ALS patient has a hard time maintaining his or her weight, the feeding tube is recommended. They don't like us to lose weight.

October Meeting

So, this last meeting was a little different. I think Gerrí and I both felt more comfortable with the group. They are really nice people stepping up to some pretty tough and scary challenges. There was a new woman there named Gail. When it came time to introduce herself, I had a feeling like I was meeting a long lost, but close relative. She sounded like me - same weak and nasally voice quality and same slurred speech. I don't mean to say that misery loves company, but really, I just felt that I had met someone who I could identify with; someone who was experiencing some of the same things that I am. A sister! On top of that she had a really cool and compact walker - I mean if there is a sporty model of walker - this was it.

The speaker that evening was an attorney who was there to review legal problems that come with getting older - and all of us at that meeting are "older" than we might otherwise feel. We reviewed estate planning, wills and trusts, other legal issues, as well as legal services that are available to people over 60. It was all really helpful for us or any other person with or without ALS.

But for me, the highlight of the evening was meeting Gail and having a sense of kinship with someone who I felt shared my own experience.  Unless a person has had this experience, it is hard to understand how difficult it is to reconcile the way you sound in your own head with what actually comes out of your mouth.

In my church calling (which I don't have anymore) I was assigned to speak in other wards (congregations) and I had to make announcements almost weekly in my own ward.  I have never really had a fear of public speaking and, as long as I have prepared myself, I have felt reasonably confident.  But, as things changed, when I would get up to announce an item of church business, I would return to my seat next to Gerrí thinking, "what the heck?"  When that happened and I saw a tear in Gerri's eye, I knew that "what the heck" was that whatever I said came out messed up.  Not very fun, and not the best confidence building experience. But it is really nice to know that you aren't the only one dealing with that particular challenge; that someone elses knows from their own experience what that is like. So . . .  Gail, thanks for coming to group.  I hope to see you there next month.

A quick aside about my church calling -  Shortly after I was released from the Stake High Council, I was called to be the Bishop's executive secretary.  In that calling, I spend time calling people on the phone to schedule interview appointments for the Bishop and his Counselors.  So, the only thing that is harder than talking in a normal situation is talking over the phone.  Fortunately, I have found over the last few weeks that a large percentage of those who I call have cell phones and respond to texts.  Last week I made the majority of the appointments by text.  At this point in time, I sound like a "normal" person via text.

How are you?

These three little words are most often used as a greeting.  When you ask someone, "How are you?" you aren't expecting that person to tell you how they are really feeling at that moment.  So the correct response to that question is almost always, "Fine, thanks!"  Right?   You might add, "And you?" but you really aren't expecting an answer.  And that is OK.  It is good to be friendly and polite.  It is good to greet one another, and "How are you?" is like saying, "Hi!"

So, what if a person is asking because they really want to know?  Sometimes that happens.  If someone comes into your office, closes the door, sits down, looks you in the eye, and says, "How are you?" it probably means that they are doing more than saying "Hi!"  So how do you respond?  Do you lay it all out?  It's hard to know.  If you do, and you see the person's eyes glass over, or they can't stifle a yawn, chances are they've heard enough.  I have found that it helps to say something like, "Well, what would you like to know?"  Then I can just respond to what they are really interested in knowing.

I am an active, believing member of the Church of Jesus Christ of Latter-day Saints.  I'm a Mormon and proud of it.  I may not vote like most Utah Mormons, but I'm as Mormon as anybody in my Draper ward.

I go to church with a bunch of really nice people and I live in a great neighborhood full of really good people.  I can look around the chapel on Sunday, or walk through the neighborhood on any given day, and find people with really serious stuff going on.


My friend, Alisa Houmand

Today, before Sacrament meeting, I saw Alisa Houmand playing the prelude music on the organ.  Alisa is a beautiful young woman with a great musical gift.  I walked up to the organ, got her attention, looked her in the eye, and asked, "How are you?"  Well, she doesn't need to look at the music, or at the keys of the organ to play beautifully, so she just kept playing while she gave me a "knowing" look and said, "About the same."  Alisa has leukemia.  Much of the time she feels like crap and her life is very much at risk.  She has been on a form of chemotherapy for quite a while.  Very regularly she goes into the hospital where they take a plug of bone out of her hip to extract and test some bone marrow.  It really hurts.  I asked her if she is still on track for the bone marrow transplant that she is waiting for.  She explained that she is still on track, and she went on to explain "I am finally on disability from work."  She recently moved from her place in our neighborhood and moved in with her parents.  This means that she can focus her energy on fighting her cancer.  If you didn't know Alisa, you would never guess that she is going through this ordeal.  She is extremely warm and cheerful.  She has a great sense of humor.  She is constantly thinking of others and reaching out to help them, including Gerrí and me.  If you ask her, "How are you?" you will get, "Fine!"  But the fact is that she is not totally fine.  She is sick and hurting and probably a little scared.  But she also has faith that the bone marrow transplant will be successful, and that she will beat the cancer and move on with her life.  She is an inspiration to me and she's "fine thanks."

My friend Steve Brady

Another neighbor and friend of mine lives just around the block.  His name is Steve Brady.  He is a very good man who just happens to be a quadriplegic and has been for many years since his successful career as an eye surgeon ended after a devastating 4-wheeling ATV accident.  If you ask Steve, "How are you?" he always responds that he is fine.  But he struggles everyday with the limitations, challenges, and the pain that accompanies his paralysis.  That's right; people who are paralyzed can be in great pain all the time.  You'd think that if their nerves were damaged and they didn't have feeling in most of their body, that they wouldn't have to suffer pain.  But that isn't true.  He is a real hero to many of us - a real profile in faith and courage.  While I'm sure that he appreciates how we admire him, in a more quiet moment he would say that he gets depressed and wishes it would all go away, and that there are times when he just doesn't think he can face another day.  But, he just takes it a day at a time and maintains his faith and good attitude as well as he can.  We were visiting a few weeks ago and he told me that he had a conversation with another good neighbor.  He told me that they were contemplating whether or not he would be around 10 years from now.  Quadriplegics are not known for their longevity and he has been dealing with this for about 15 years.  They pretty much concluded that they would not be having a conversation 10 years from now.  We discussed the fact that ALS patients live, on average, 3-5 years from the time they are diagnosed, but that my ALS seems to be progressing relatively slowly - so I could stretch several more years out of this experience.  We decided it would be fun to start a neighborhood pot.  We could sell dates by month and year to anyone who wanted to bet on which of us is the first to "kick the bucket."  The person who bets on the right person, and buys the date that is closest to the "exit" date would win the pot.  Dark humor?  Morbid?  Maybe, but what it means is that Steve is "fine thanks."

After Sacrament Meeting today, I ran into Mark Selman.  Mark and Laurie have four great kids.  Their oldest, Lexe, is in a real battle for her life.  Mark, Laurie, Lexe, and the whole family are fighters.  How are they?  Battle ready.  Surrender is not in their vocabulary.  I could never describe this situation better than what you can see in this youtube video.

http://www.youtube.com/watch?v=pgFujWt4HqE

You really need to take a few minutes to watch this.  After you do, you don't have to guess how they would answer the question, "How are you?"  Her chemo treatments have been extremely dangerous.  Death's door has opened a few times through this ordeal, and Lexe keeps slamming it shut.  Mark, Laurie, and Lexe are an inspiration to all of us, and you can bet that they are going to be just "fine thanks."

After reading these stories you can guess how I am doing.  I guess I'm feeling kind of philosophical about everything.  What I have going on right now is light-weight compared to these folks.  In earlier posts I have written about other friends who have taken on major health challenges and come out winners.  With struggles like these there are no guarantees.  Some people don't make it.  I don't have to go through drastic chemotherapies that are almost worse than the disease they target.  There is no cure for ALS.  In future posts I will try to describe, for as long as I can, my physical condition as the ALS progresses.  Not everything that I will describe will be pleasant or fun, but that doesn't mean that I'm not just "fine thanks."

Someday, I'll touch the blue blue sky.

Yeah, I know.  It has been a while since my last post.  I didn't intend this to be a day by day, blow by blow, sort of account with my ALS experience.  I had a lot to say early on, because I had a lot of catching up to do.  It's not like nothing has been going on, just not tons.  I will had another post in addition to this one soon.  Like real soon.



To see my Dad's flight, click here.

After the skydiving adventure, many of you asked me, "What's next on the bucket list?"  On October 3rd, my Dad, Elden Taylor, my favorite human, Gerrí, and I drove up to Heber City.  For some time, my Pop has been interested in flying some World War II vintage airplanes that are maintained and flown by the Utah Wing of the Commemorative Air Force (CAF).  The CAF has planes at different locations around the country, plus, a few of the more prominent members have restored their own aircraft which are also hangered in Heber.  My Dad flew in a PT17/N2S Stearman biplane, painted bright yellow, which is the style of the US Navy version of that plane.  In that same hanger they also have a Stearman painted silver, in the style of the Army Air Corps (US Air Force).  My Dad was in the Navy in WWII.  During and after the Vietnam years, I spent 10 years in the Utah Air National Guard / US Air Force.  Neither my Dad nor I were pilots.  In fact we were both assigned in electronics and radio communications.  Thankfully, I never got shot at during the Vietnam War, unless you count the local Biloxi boys shooting at us to scare us away from their girl friends. (True story - I'm not making that up - real bullets!)

But, I digress . . . . .

I expected to fly in the same yellow plane, but as Dad was landing, the pilot noticed that the fuel gauge, which hangs from the center of the top wing, was leaking fuel.  The pilot explained that the fuel gauges are tempermental on that particular aircraft and apologized that I would not be able to fly in it.  They offered to roll out the silver Stearman, which was fine with me, but, they were going to have to move two other aircraft out of the hanger to get to that other Stearman.  Well, one of those two aircraft that had to be moved was a North American T-6 Texan advanced WWII combat flight trainer.  I am very familiar with those babies, and also the T-28 trainer that came later.  In fact, when I was stationed at Keesler Air Force Base in Biloxi, Mississippi, they were still training pilots in the T-28.  My barracks were located near the end of the flight line where the T-28s were taking off day and night (very noisy).


Click here to see video of my flight.
(Can't be seen from mobile devices.)
.

Anyway, I suggested that, if it was going to be too much trouble to move the two aircraft, I would be "satisfied" to fly in the T-6.  Actually when they said "yes" to that, I was really excited.  So as you can see from this photo, and the link, I had a really great flight in this classic aircraft.  I got to take the stick for about 10 minutes and put that plane into some nice steeply banked turns.  It was fantastic!

I can't really say that this was on my bucket list.  This was an item on my 87 year old Dad's bucket list.  But I was so happy to have this experience with my Dad. And I'm a very blessed man because Gerrí is, and has always been, 100% supportive of (most of) my antics.

Here is proof. She put up with this for several years.

If you want to see a video of this kind of flying,
rent the movie "Fly Away Home."



So now, people are asking me what's next on the bucket list.  I'm sure that I haven't thought of everything that I want to do, and Gerrí has a list of things that she would like to do.  Gerrí and I already have our plane tickets and condo reservation for Maui - we leave on January 19th, no matter what.

But, if I can stay healthy enough, next March I really hope to do this: http://www.youtube.com/watch?v=D5VguRugB_c

Bucket List: Skydiving? CHECK!

August 13th was my 62nd birthday.  We all went to dinner - Gerrí and I, Tom and April, Kristin and Ian, Lindsay and Brett, and Joel and Jordan.  I got to choose the place and I chose Cafe Rio.  I really like the Pork Tacos!

My kids gave me a gift bag with a piece of paper in it.  That piece of paper just happened to be a certificate for Skydive Utah at the Tooele Valley Airport.  Earlier this summer, we were at Lagoon and I tried to get some of these kids to go on the sky coaster with me.  Our day was about over and the line was very long, so we decided not to go, but that led to a bucket list discussion.  One of the group asked me if I had any interest in sky diving.  My answer was yes, but I thought that was the end of it.  Obviously not.

So, today was the day that we chose to go make the jump.  Not everyone in the family was interested in jumping out of a perfectly good airplane.  When I was flying my ultralight, I could never get Gerrí to go up with me.  She has a thing about heights and flying in airplanes without doors.  Tom, April, and Brett came to observe.  Kristin, Lindsay, Joey, and Jordan all decided to take the plunge. Because we all decided to take a video, we ended up on two different flights - a camera man for every one of us.  Joey and Jordan went first. Kristin Lindsay and I went on the next flight.

The link provided with this photo is my YouTube video of the event.  You can see Lindsay jump first, Kristin next, and I was the last one out of the plane.


http://youtu.be/1tUYeGGFaAo

So before you click on this - let me explain why some things look kind of weird.  When my trainer and I jump, I have my head back and my hands in the chest straps of the harness.  It looks like I don't want to look down, but actually, that is what they instruct you to do.  I wanted to be able to see the event clearly, so I had my prescription sun glasses on.  They gave me goggles to go over the glasses, but I found that when you are falling at a rate of 110 miles per hour, it is a bit difficult to keep those goggles in place.  Also, at the beginning of the video, I sound a bit drunk.  That is the ALS talking.  I did NOT take anything to calm my nerves - I promise!  I really was not nervous.  (What do I have to lose?)

While it only takes about 10 minutes for the plane to reach an altitude of 13,000 feet, and it only takes a couple of minutes to return to terra firma, the whole process takes about 3 hours.  So we were hungry when we got done.  Where did we go to eat?  CAFE RIO!

So, the title of this blog is Kevin LIVES with ALS.  Well - this is living!!

Flight 1:  Joey and Jordan

 

 

Flight 2:  Lindsay, me, Kristin