Church Talk - August 2014 (It could happen.)

OK - nobody knows better than me that I can't talk.  None the less, the Bishop asked me to prepare a talk and he was going to ask my daughter to read it.

Sacrament Meeting - August 17, 2014

The Bishop asked me to prepare a talk that would be delivered by my daughter, Kristin.  I have had a fair amount of time to think about this. I have written a piece here and there, intending to bring it all together in the last couple of days.  When I was done Friday night, it just didn’t feel right, so I went to bed feeling nervous.  Yesterday I remembered that the Bishop told me that he wanted me to use the “I” word, meaning he wants this talk to be about me.  So now I felt the pressure to write a talk by an inspirational person who has ALS.  That is a heavy responsibility so I cast that off right away and decided I would write a talk by a dork who has ALS.

My experience with this disease has been very interesting to me.  I am a very curious person and I want to know as much as I can about what is going on.  Three years ago this fall, I started to slur my speech and my muscles started twitching all over my body.  Everyone has muscle twitches but this was over the top.  My google search brought up a list of conditions which show those symptoms.  ALS was on the top of the list.  I put the list together so I could be better informed for my first visit to the neurologist.  One disease that is on the list is a form of Schizophrenia.  I knew I didn’t have that one because the voices in my head told me so.  So visiting the doctor was a confirmation of my list and they prescribed some tests to narrow the list by ruling stuff out.  I flunked all of the tests so they sent me to the ALS doctors at the University of Utah.  After doing some more tests they confirmed that I had ALS.

As diseases go, this one is very interesting.  It is a motor neuron disease.  The motor nerves die so the muscles they control don't know what to do.  The muscles slowly shrink, weaken and become paralyzed.  No one knows for sure what causes it. There is no cure.  Everyone who gets it has a different experience so no one can tell you what is going to happen next. The only thing that medical professionals can predict is that it is a terminal disease unless your name is Stephen Hawking.  If you ask the doctors how much time you have left, they have no clue except to say that the average prognosis is between two and five years from when it is diagnosed. I started having symptoms almost three years ago and it has been over two and a half years since I was officially diagnosed.  So, I suppose, to add a little drama to this meeting, I could kick the bucket right here and now.  All in favor please manifest it by raising your hand.  All opposed by the same sign.

As I face my own mortality, I have had a fair amount of time to think deep thoughts.  I would like to share some of the important things that have been on my mind.

LIVE YOUR LIFE

Don't just exist. This mortal state that we are now experiencing is finite and precious. Don't spend your life thinking about what might have been.

At the phone company, I had a guy working for me. Dave was a nice guy but a mediocre employee.  He got the job done but he seldom exceeded his objectives.  He did whatever it took to meet them while showing little interest in going the extra mile.  In his personal life, he married when he was older, and while single, lived with his parents so he could save and invest his money.  When he worked for me he had a young family.  As his supervisor I had the opportunity to speak with him about his goals.  I learned that he had a very specific goal outside of the phone company.  He put every dime that didn't have to be used for absolute necessities, into real estate for student housing in Utah valley.  He had committed himself to reach a specific net worth by a certain age.  He would lecture me about the money I spent on family vacations or trips to Hawaii with my wife.  He spoke of opportunity costs and how the dollars I spent on vacations were gone forever.
One day he came into my office and told me that he had met his goal.  I said "congratulations! Are you going to retire early?"  He said that he wouldn't retire but now he would focus on his work at the phone company.  He said that I would see a difference.  He was right. He became a star on our team.  In his personal life, he bought a new van for his family and took them to Disneyland.  He bought a folding camping trailer and went camping and fishing with his family as often as he could.  He was finally living.

Several months later we had another of our routine, one on one meetings.  He sat down and told me about his latest camping trip.  He told me that he was on track to make 150% of his objective.  He then explained that the reason he was missing days in the office was that he had been ill. He went to his Doctor who after some tests referred him to an oncologist.  He told me that he had been diagnosed with Pancreatic Cancer and that he had less than 6 months to live.

Over the next few months we visited in the office and then in his home.  He had many regrets about how he didn't spend enough time with his young family making memories. The last time I saw him before he died, he spoke about opportunity cost, not in terms of missed financial opportunity, but in terms of missed opportunities with his young family.  He knew that he was leaving his family financially secure, but he worried about whether or not his kids, especially the youngest ones would have any memories of him.

I'm not saying that everyone should forget about financial responsibility.  Our leaders have taught us that we should avoid debt and be prepared for hard times. But, if you sacrifice family and personal experiences, and focus on building assets, whatever they may be, you should prepare now for experiencing regret when your days are spent.

Make the choices today that will result in the least amount of regret years later.

KNOW WHO YOU ARE

Stop searching for yourself.  What could be more boring than that.  Jesus taught that the only way to find your life is to lose it.  It is much more fun and interesting to serve others.  As we do, we will realize that we like the person that we become.

The words, "remember who you are and what you stand for," have become so common and cliche, we can forget how important those words are.  We are children of our mortal parents.  They gave us a name.  It is important to us, and to our parents, what we do to honor or dishonor the name they gave us.  The older I get, the more I look like my Dad. Nothing makes me feel more proud as when someone tells me that I look like my Dad.  He and my mom taught all of us about the important things in life, both temporally and spiritually.  We all knew that my parents loved each other and still do.  Their example has stuck with all of my brothers and sisters.

GRATITUDE

Be grateful for everything that the Lord blesses you with.  I have come to realize that becoming sick has given me a way to learn things that I wouldn’t have learned otherwise.  So I have reason to be grateful even for ALS.

The Doctrine and Covenants says that nothing will kindle His wrath more than failing to acknowledge His hand in all things.  I would like to switch this around like this.  Nothing will please the Lord like acknowledging His hand in all things and being grateful for all that surrounds us.  All we have to do is open our eyes to see how he has blessed us.

Our Heavenly Father loves us beyond our ability to comprehend.  He loves us so much that he sent his son to suffer and die for us.  That means that every dumb mistake I’ve made and sins that I have committed have been suffered by Jesus Christ.  At this point in my life, where I can see an end, I feel extremely grateful to Jesus who knows what it is like to have ALS.  All that he asks of me is that I lay all my stuff at his feet and trust him enough to be grateful and to bear it well.

CHERISH YOUR FAMILY

One of the blessings I have received through this illness is that Gerri' doesn't trust me to be home alone by myself.  I have a tendency to fall and bonk my head.  One time, not that long ago, I fell and hit my head hard enough that I have no memory of the fall or of anything that happened over the next three days. So, if she has to be somewhere, or if she needs to get away and take a much needed and deserved break, she gets a baby sitter.

Our four kids have been great to come over and spend a few hours when they are needed.  This has given me some cherished opportunities to speak with each of the kids separately about spiritual things and their beliefs.  Not all of my kids have taken the path that we hoped they would.  We all think free agency is great, except when it comes to our own kids.  We have four adult children.  We wanted them to make the choices we had planned for them, and when they made different choices, it was not easy.  Any discussion about spirituality and religion made things uncomfortable for them and us.  I love our kids very much and I respect their choices even if I don't always agree.  This illness has removed the barriers. The time I have had with them lately has allowed us to open up and talk about spiritual matters.

They have presented some interesting challenges to Gerri' and me.  In that regard, we are no different than any other parents.  They are really good people.  They are kind and generous and ever concerned about the welfare of others, especially the people who need it most including those around us that are picked on or ignored, or different in a way that brings about unjust treatment.

I ask you, my four children to always remember what you have been taught at home and at church.  If you remember and align your lives accordingly you will be blessed beyond measure.  You will prosper and grow personally. You will become the person you have hoped to be.

As I said earlier I have been blessed to have the privilege of having time to sort through my own feelings and to get my affairs in order.  I have a pretty good understanding of the most likely course my life will take.  While my retirement plans didn't include dying young, I feel ready to take whatever Heavenly Father has planned for me.  Am I afraid of dying?  No, at least no more than the American philosopher, Woody Allen who said, and I quote, "I am not afraid to die, I just don't want to be there when it happens."   (close quote)

As I have thought about how I have spent my life, it is not difficult to think of missed opportunities or things that I should not have done or things I should have done better.  But for the most part, I feel satisfied and blessed with the way my life has gone.  The smartest thing I have done in my life is marry Gerri'.  The last 41 years have been amazing.  She is my wife and my best friend. People talk about having ups and downs in their marriage.  We have experienced ups and downs in our lives, but not in our marriage.  I love that girl.

I would like to express my gratitude to every member of this ward.  We have received so much love and support.  From the cards that show up regularly expressing love and encouragement to ward members taking on my yard.  Our Relief Society President, Collette and now Mary Lou have been wonderfully thoughtful and generous. The ward has been amazing.  The Bishop and the Stake Presidency has blessed our home many many times.

I would like to bear my testimony that God lives, he answers our prayers.  The restored Church and the Gospel it teaches have brought me joy my entire life.  I am excited to see what comes next.
When my Mom was dying, I asked her what the first thing was that she wanted to do when she got to the other side.  Her answer was, “I want to hug my mommy.”  I too want to hug my mommy, and I look forward that day.

Enjoy your trip? Have a nice fall.

We have had several interesting experiences over the past few months.  I was not there for all of them.  If  that seems a little weird to you it will soon be obvious.

I hoped that Gerri' would write about this one but I will do my best to tell what others told me.  We will also be using my "way back machine" because this happened at the end of February.

The only thing I remember was going to the bathroom and "waking up" 3 days later.  Apparently I fell and hit my head.  I didn't crack my skull but I sustained a really good concussion.  Gerri' was alarmed and wanted to take me to the hospital, but I didn't want to go.  Evidently I was "awake" and talking, but I don't remember a thing.  As loony as I normally am, Gerri' said that I was surpassing all previous looniness.  She evidently got her way because she took me to Alta View hospital's ER where they examined me and did an MRI.  They told her that it was just a concussion - no broken bones or brain damage.  I am guessing I was relieved to hear the good news, but I am not sure because I wasn't there.  They sent us home.  The next day she tells me that I was messing with the bi-pap settings and messed it all up.  She had to call the respiratory equipment company and receive step by step instructions to get it working again.  She was alarmed and sure that I had more wrong with my head than the ER people told her.  So she packed me into the car again and took me back to the ER and insisted that they check me out again.  They repeated the exam including another MRI and again told her that there was no damage beyond the concussion that they had already diagnosed. I don't remember any of this.

Some time during the third day, I started to become aware of my surroundings, but everything was a little whacky for me.  Everything I typed came out wrong.  I should have been concerned but instead I found it entertaining and funny.  My hearing was affected.  Everything sounded as though it came from the bottom of a well and was muffled.  For some reason I felt like I needed to adjust the settings on my bi-pap machine.  Of course I messed up all the settings.  Gerri' was very patient with me as she called the respiratory equipment people a second time in two days.

I found that I was laying in a hospital bed and there was no room for Gerri'.  It was like I kicked her out of the bedroom because I needed this new bed.  She was sleeping on the sofa.  That was no good, so within a week or two, Gerri' went out and bought a bed that would fit in the space and sit against my bed as though it was king size bed.

Over the next few days my hearing returned to normal and the general brain fog lifted.

Gerri's version:

In the middle of the night I heard a big crashing thud coming from the bathroom. I screamed like I always do when Kevin has a fall and ran into the bathroom. He was on the floor, having fallen and hitting his head on the tile.  He was conscious and holding his head in pain.  I told him we needed to call 911 and he said "no" so I got him in the car and headed to Alta View ER.  They did the MRI and other stuff and like Kevin said, determined that he had no damage other than a bad concussion.  They wouldn't give him anything for the pain until all of the tests were completed.  They gave him morphine and he was soon out of pain because he was out of it.

It was about 9 or 10 in the morning when we finally left the hospital with prescriptions for some strong pain relief drugs.  He was so "gone" that it took 2 hospital workers to get him into the car.  The morphine totally knocked him out.  He was 160 pounds of dead unconscious weight.  It took a while to finally get him in the car.  One of the hospital people got in the driver's side of the car and the other was outside the car and they pulled and lifted and grunted before they finally got him in the car. They were concerned about how I would get him out once we got home but I knew that I could find some of the great guys in the neighborhood who work from home to help get him in the house.

I had Christine Taylor's phone number in my contacts so I called her, explained the situation and asked her if Dave could meet me at the house in 10 minutes to get Kevin into the house.  I asked her to call Steve Taylor to help Dave.  I pulled into the garage and Dave was there.  He asked how much Kevin weighed and thought that he could do it by himself.  I wasn't sure that was a good idea.  It wasn't.  Luckily, Steve Taylor arrived and they commenced to get Kevin out of the car and into the house.  He was like a 160 pound bag of potatoes.  It took a lot of straining and hard work to get Kevin in the house and in bed.  Thank goodness for great friends.

Like Kevin said, he was totally out of it.  I had the strong prescription pain pills but after seeing how crazy/goofy/out of it Kevin was, I would only give him Advil.  He was so "gone" that he probably didn't realize how much it hurt.  I called Becky, our home health nurse to tell her about what had happened and she ordered a hospital bed immediately.  It arrived in a few hours.  Kevin was a total goof ball.  He did mess up the settings on the bi-pap machine twice and our supplier was kind enough to go over the procedure to reset it two days in a row. I did take him to the ER the second day, sure that he had a brain bleed that had occurred the second day.  Nope, thankfully he was okay.

It was quite the experience.  Kevin wasn't allowed to ever go to the bathroom alone again.

Back to Kevin

I definitely got my wings clipped here at home.  I am not allowed to go to the bathroom alone.  So, when my four kids are here to baby sit me they have the honor of pulling down my pants and putting me on the potty.  When you are in this situation, I'm afraid you have to let go of your ideas about modesty, privacy and personal dignity.   Oh well, that stuff is all vanity anyway.

A Doozy of a Day

This last week end, we had a day that was a real doozy (Saturday, April 19th). We thought that bad things came in threes, but we proved that wrong. Before I describe the events of the day, the following info will be helpful.

I now use a power wheel chair, so we needed to find and purchase a van equipped for wheel chair access. Besides the sliding door and automatic ramp, vans of that type have straps that hook on to the chair to secure it to the floor of the van. It is a pain in the butt for the person strapping you in and out, so somebody invented an automatic locking system. The way it works is that you wheel your chair so that a part on the bottom of the chair moves into a funnel shaped opening that narrows into the locking system. You wheel forward and, click, you are locked. To get out, you push a button and it releases the lock allowing you to wheel out. This all sounds great, but you have to know exactly whether the motor should be running or not, if the doors should be open or not, if the ramp should be out or in. There are lots of possible combinations and when we bought the van we either weren't very well instructed on how to make this easy, or we were very poor students, or they messed up the installation.

One other thing - I now have oxygen tanks to make my breathing easier. The oxygen is delivered through those attractive plastic tubes that stick up your nostrils.

As we were getting ready to go to the REAL Salt Lake, Major League Soccer game, we were trying to figure out how to attach one of the larger oxygen tanks to the wheel chair. As Gerri' started to put the regulator on the tank, WHOOSH, we had oxygen blowing out of the tank - full force. We didn't know why. We didn't know whether to run away or try to close or fix it. Pure oxygen is highly flammable and a spark from the chair could have been a very bad thing. So we sat there, frozen in a state of indecision, until after a minute or so passed and the tank was empty. We figured out that the tank came with a piece of plastic tape which, if not removed, prevents a good seal for the regulator. That piece of tape lets you know if the tank has not been used. We now had no choice but to bring two smaller tanks, one hanging on the back of my wheel chair, and the other in a gym bag for later use.  Problem solved.

This thing is possessed by Satan.

Now it was time to get into the van. The door slid open and the ramp came out.  I slowly wheeled up the ramp and positioned myself to move the chair into the automatic locking system. I moved forward. No lock. I backed up and tried it again. No lock. We closed the van doors, retracted the ramp, turned the car on, and tried again. Nothing. This went on for at least 30 minutes. Were we frustrated? Yes. Did we want to punch the noses of the folks who installed this thing? YES! After trying every combination I moved forward and, click, I was locked. We noted that the motor was running and the doors were closed. We thought we had figured it out.

We arrived at the stadium. We pushed the little green button to unlock the thingy. Nothing. We tried again. Nothing. We spent another 30 minutes trying to get me out. Finally, we must have done something right because, CLICK, it released me.

Now we were at the game. It was very exciting even though the score was 0 - 0 at the half. There were some fantastic plays and saves at the goal.  Really cool.

Now it was half time. I didn't feel like I needed a potty break (big mistake). The wheel chair accessible potty is quite a distance from our seats. I heard a voice behind me calling my name. I looked over my shoulder and there was Phil Palmer, one of my friends from the U of U. I was going to back up and turn the chair so that I could visit with Phil, but for some reason I couldn't move. I tried a couple of times and then heard the scary sound of an oxygen tank emptying. I had backed over the bag that the reserve tank was in. Everyone around us was holding their ears and looking at us with alarm on their faces. About a minute later, the tank was empty. Losing the second tank meant I would use all of my oxygen before getting home, but that is not a big deal.  I can live without it. So I had a short visit with my pal Phil.

The second half of the game was exciting. There were a lot of amazing saves by the goal keeper, but RSL kicked in the only goal of the game. Final score RSL 1, Portland 0. Time to go home.

We got to our van, which was parked facing a fence. There was no car next to us - we were somewhat secluded. I wheeled slowly into the van and positioned the chair so I could lock myself in again. Again no success after several tries. Suddenly I felt the urgent need to pee. We had to get home fast but we couldn't get me locked down in the van. I was desperate. There was no way I could hold it any longer so I asked Gerri' to open the door and let the ramp out. I anxiously wheeled out and to the front of the van where I thought that I could pee discretely. My pants were unzipped and ready to go. All I had to do was stand and hold onto the fence while I let loose. A perfect plan, except my legs were weak and my knees buckled. Gerri' was there to keep me from going all the way to the ground but now we had to get me back into the chair. When my legs go out, I am mostly dead weight. Little Gerri' was lifting with all of her might, mind and strength. She was able to back me onto the edge of the chair where I was in a position to grab the arms of the chair and pull myself up. I had just enough strength to keep myself from falling again but not enough to scoot back so that I could get all the way into the chair. Gerri' huffed and puffed and pushed my knees slowly back into the chair. After all of the excitement, I no longer had the urge to pee, so, we got back into the van, and after multiple tries I was able lock down the chair. We got out of there and headed home.

When we got home, you'll never guess what happened. We could not unlock that chair AGAIN. While we tried all of the secret combinations, the urge to pee started to grow again. By the time the chair was finally unlocked, I was sure I was going to pee my pants - that is - if my pants were not already unzipped and down around my hips from our efforts at the stadium. We opened the door and out came the ramp. I was in such bad shape, I grabbed "myself" with my left hand which took on the functions of a tourniquet. Now I just had to wheel down the ramp and go inside and take the leak that I desperately needed to take.

I must have been distracted by my critical biological emergency, because near the bottom of the ramp, my right wheel went over the edge of the ramp. The chair didn't fall, but it moved enough to buck me off. Now I was lying on the concrete with scraped knees and elbows and my left hand tucked into my underwear. Gerri' screamed like I have never heard her scream before. She ran to my side. After we checked to determine whether or not I was dead, we sat on the concrete together to figure out how we were going to get out of this mess. I became aware of the fact that the urge to pee had mysteriously disappeared! We knew that there was no way that I was going to get into that chair, so Gerri' decided to run into the house and get the scooter, which is supposedly easier to mount. When she returned with the scooter she said, "These pants are in the way," and then pulled off my shoes and my pants.

Now we began the onerous task of getting my dead butt on to the seat of that scooter. She tugged and lifted while I exerted whatever strength I had left. It wasn't enough. I was afraid that Gerri' was going to permanently injure her back. A thought came to both of us. I could not express what I was thinking but Gerri' said, "I'm going to get a neighbor." She called Jeff and Angie Lillywhite and found Jeff home. While we waited just a moment while Jeff came over, I sat on the sidewalk in my underwear wondering who might drive by and see this unusual sight. As Jeff walked up to us Gerri' said, "Why Kevin is in his underwear is a long story that can wait." With that, Jeff stood behind me, grabbed me under the arm pits, and put me on the scooter. That was the easiest thing we had experienced all day. Thank you Jeff! If it weren't for you I would have spent the night sleeping on concrete in a puddle of pee.

It was definitely not a usual day for us. It was a day that will not soon be forgotten. We laughed, cried, got angry, felt hopeless and desperate, and then laughed some more. We learned or relearned some important lessons.

First:  If you have to pee, do it before you get in the car. In fact whether you think you need to pee or not, go to the potty anyway.

Second: Make sure you get the operating instructions for any device that you buy. Don't leave the dealer until you are sure how the device works and you have tried it more than once.

Third:  If you have an extremely urgent need to pee, take your mind off of the need by suffering some other trauma. You could (a) hit your thumb with a hammer, (b) close the car door on your fingers, (c) get your foot stuck in a conveyer belt, (d) break some ribs by falling out of a tree you just climbed. Use your imagination to come up with some trauma that is worse than peeing your pants. (I have done (c) and (d) and I'm pretty sure those would take your mind off of the urgent need to pee.)

You don't have to go what we went through last Saturday. Just follow these lessons and you will be OK.

Depressed? No Way!

Yes it is true.  Mr. Cheerful, got down and depressed.  Unbelievable right? That is unless you know that I have been taking antidepressants for many many years.  I'm doing great now due to an adjustment of my meds. I know I have a good reason to be depressed.  After all, I have a disease that is killing me.

Right?

Wrong!

I have no business being depressed because I know my mental self really well.  I have been successfully medicated to take care of chronic depression.  Depression that happens because of an event - situational depression - is something we all deal with unless our permanent address is Disneyland, Anaheim, California, USA.  Even then, that mouse can really bug you.  I'm no different, but when I get stuck in a slump, I know what to do to climb out of it.

I figure that there are a couple of triggers that brought me to the edge.

First, it has been a hard year for our ALS Support Group.  We started attending support group meeting eighteen months ago.  We got to know a lot of really nice people.  We met every month, sharing our experiences and discussing specific topics that help an ALS patient cope.  Since early fall we started losing members.  It didn't slow down through the holidays and beyond.  In fact, in the last two weeks, we have lost two members of our group.  A third patient who didn't participate in our group also died.  That adds up to 12 souls since October. Anyone who joins a group of terminally ill people better be ready to see a lot of people pass on.  I was dealing with all of this really well until one of my friends died on December 21st.  This guy's ALS progressed just like mine.  When we met his speech was slurred like mine.  When I had foot drop, he had foot drop.  When I got my feeding tube, he did too.  When I needed my iPad to speak he got a similar device to speak for him.    Each time we met, we would compare notes.  It really got to me when he died.  We were like ALS brothers.  All but three or four members of our original group are gone.  Of course they have been replaced with new people, but it isn't the same.

Second, I developed a yucky problem.  I would feel like I had something in my lungs that I needed to cough out.  No matter how hard I tried to dislodge it, the stuff wouldn't come out until it was ready.  Not even the cough assist machine would help. Then, without warning, the thing would break loose and block my airway.  Of course, it plugged my airway when I was exhaling so it was hard for me to inhale.  It was really scary to struggle to get that gunk either coughed up or swallowed.  This went on for two or three weeks, several times each day.  Every day I nervously anticipated this. After a couple of weeks I thought this was my new normal, which knocked me down a peg or two.  Then just as suddenly as it started, it went away, and gratefully, I haven't had a recurrance since.

So - Happy days are here again.  No weird choking.  I still feel bad about losing our ALS friends, but that is different than being depressed.

We had an amazing Christmas and a remarkable Valentines day.  And, the last couple of weeks have been entertaining.  I'll write about that soon.  A good part of it will be written by Gerri'.

Changing With the Seasons

The trees in our yard put on a gorgeous display this year, but now all of the leaves have fallen. Last week end, young men and women, and their leaders from our LDS Ward, came over and raked and bagged every leaf.  Our good neighbor, Howard Schmidt, came over and cleaned and unplugged the rain gutters on my house. They were so stuffed that during a heavy rain storm I had a water fall landing on the soil next to the foundation on my house.  Over time, we developed a sink hole that opened up under the steps on our front porch.  Our good friend, John Jones, joined Howard and assessed the situation and came up with a solution.  The following Monday, John had some people come over and pour concrete mixed with clean dirt under the porch.  We have great neighbors and friends.  I'm not sure what we would do without them.

With the change in seasons we have made a few in-door changes around here.

We have finally moved down stairs to the main floor.  It is working out really well.  Our former office, now bedroom, turned out really nice and using the shower in our remodeled euro-style bathroom is great. The entire bathroom is tiled to the ceiling. (photos below)  It turns out that I only go upstairs once or twice a week (if that often).  I can still pull myself up the stairs if I want to, but I'm glad I don't have to. When I go down the stairs I scoot down on my butt like a toddler.

As I mentioned in my last post, I have a little scooter that I can buzz around on. Riding around on the scooter saves the energy that I would waste shuffling around. Last week a guy came to the house to start the order for a power wheelchair. I don't really need it yet because I have the scooter. I am trying to follow the advice that we receive at the clinic. I will eventually need the power chair so we are just staying ahead of the game by beginning the ordering process now instead of waiting until it is a necessity.

Several months ago our friend, Anne at the Muscular Dystrophy Association (MDA), told us that she had a wheel chair lift in their storage area.  She said that it was just taking up space and asked us if we wanted it.  It is what they call a porch lift.  It just lifts a chair (or scooter) up so you don't have to worry about the porch steps.  We have a three car garage so we had planned to enter the house via the 3 steps up from the garage. If we had to build a ramp, it would have been very long.  The ADA recommends that for every inch of vertical, you should have 1 foot of horizontal slope.  That means we would have had to build a ramp 18 feet long.  So we gratefully accepted the offer from Anne. We had a really hard time finding someone to install it for us.  It seems that the people that install these want to sell you a new one so we had a hard time finding someone to install a used one.  Kory, our respiratory supply guy, referred us to a guy who was willing to install it for us.  So we now have a nifty little elevator.  I am using it with the scooter already.  Thank you Anne!



Kevin and his voice (iPad)

I still feel like I'm in pretty good shape.  My speech has been gone for quite a while.  In March I posted a video that I thought demonstrated how my speech had deteriorated. Now, I listen to that video and I realize that I was a silver tongued devil.  Now I'm a devil without a tongue, silver or otherwise.  I'd be in real trouble if I didn't have my iPad.  I have recorded some video to show you why the iPad app is so important to me.  Check this out:

http://youtu.be/KjPrBnU2VSg

I still feel good. I am fortunate that I don't have any significant pain symptoms other than the occasional muscle cramp.  I seem to be losing strength on my left side faster than on my right.  My fingers still work, as evidenced by my typing, but I have a hard time with anything that requires fine motor skills that involve my left hand.  Buttoning a shirt is a good example.  Tying a tie is difficult and forget about tying shoe laces.  On my left hand, it is really the thumb that causes the problem.  I have come to appreciate opposable thumbs. 

When I walk I am most stable when I use my stick in one hand and hold hands with Gerri' with the other hand.  Every once in a while my left knee buckles under me, but fortunately this is not a regular occurrence. I have "foot drop" in both feet, but it is much more pronounced in my left.  My legs are skinnier.  Using the feeding tube, I have been able to maintain my weight.  Because I am losing muscle this means that I am replacing the lost muscle with fat.  As a result, my pants don't have as much slack around the waist. The folks at the ALS clinic tell me that this is a good thing. Patients who maintain their weight supposedly last longer than those that don't.

We had our clinic day last Wednesday, and it appears that I am doing OK.  My lung capacity diminished some, but my oxygen levels are good.  No surprises with everything else.  Each morning I am taking an extra very small pill (amitriptyline) that helps dry out my mouth. That appears to be working, which is great.

So, all things considered, I am doing really well. We are still counting our blessings: great friends and neighbors, our super cool family, and most important of all, Gerri' and I have each other.

Kauai - September 2013

I started writing this on the way home from our Hawaii trip, and am just now (October 22) getting around to finishing it.

Sunset from the South Shore

It is September 18th. Tonight we are homeward bound on the red-eye flight from Kauai. We have been on the island since August 23rd. It has been a wonderful three and a half weeks. For the last six or seven years we have visited Maui, including our visit last January, so it was nice to return to Kauai. We have visited the islands three times since we learned about my ALS.

In February 2012, I was able to do everything I've always done. I snorkeled, used a body board, and kayaked with no problems. My stamina wasn't as good when I used the body board but that really wasn't a big deal because I used to overdo the body boarding and totally wear myself out.

Beautiful Anahola Beach

In January of this year, 2013, I found that I was unable to body board because I didn't have the leg strength to stay upright in the surf. Waves just knocked me over. When I snorkeled I didn't have the stamina I was accustomed to, and my breathing (exhaling) was a bit weird. I used a new snorkel design which provided 2 chambers - one for inhaling and the other for exhaling. I was able to snorkel as much as I wanted, but I'd say that I was less adventurous.  I kept Gerri' close by and didn't wander off on my own.

This trip, I found that I was unable to form a tight seal with my lips around the snorkel mouth piece, so I had sea water leaking into my mouth. I also found that I didn't have the oomph to clear the snorkel if it took on sea water. I tried it in the pool at the hotel, and in calm water at Anahola beach. I had the same experience at both places. So, unfortunately, my snorkeling days are behind me.

Last January, I was able to walk on the beach. With each step my heels sank in the sand, but I could walk a pretty good distance. This visit I walked using two hiking poles which we purchased at the local Walmart. Basically, with those poles and Gerri's help, I was only able to walk from the car to where we set up our beach chairs. So there were no long leisurely strolls on the beach.

Wading in to the water was difficult because the resistance of the water pushes my feet back so that when I land my foot on the bottom,  it settles wrong, as if I am about to roll my ankle. With the slightest wave action, it was much more difficult to land my steps properly. So, my beach activity consisted of relaxing on a beach chair and reading a book, all the while being soothed by the rhythm of the waves. Not bad.

We located the glass beach near Port Allen.  It looks like a black sand beach until you take a closer look. Searching for beach glass is one of Gerri's favorite things to do, so we made several trips to that beach. Gerri' found lots of nice pieces of sea glass, and I just kicked back to enjoy the scene.

 Glass Beach

 

This trip we brought a wheel chair which was loaned to us by one of our ALS friends. It turned out that I only used it in the airports.  Last trip we relied on the airport folks to provide one of their wheel chairs.  If I had to do it over again, I would not have brought a wheel chair.  We thought that we would use it on the island, but we discovered something better.

Before the trip we found a medical equipment supplier on the island that would rent a walker to us.  We also discovered that they rented scooters.  We rented the walker for a few days but ended up replacing it with the scooter. That little scooter was really fun. It broke apart into four pieces which made it relatively easy to break down and transport in the back of our rental car.  My only real problem was that I wanted to help Gerri' with the chore of breaking the scooter into its four pieces and putting it back together again.  Every time I tried, I ended up falling (or almost falling) in the parking lot. So I had to let Gerri' do all of that work.  I couldn't use the scooter at the beach, but everywhere else we went, it was great. In fact, it worked out so well that when we got home Gerri' called around and located one for us to purchase.

So, we had a wonderful time in Hawaii.  It was great to return to beautiful Kauai after being away for six or seven years.  I'm really glad that we have visited the islands over the years. My sister Shannon and her husband Mike have visited the islands many times over the years.  I used to ask them why they always returned to Hawaii every year (sometimes more than once in a year).  It seemed strange to me that they didn't visit other places. When I asked them about it, Mike used to just smile at me.  Now I know what he was smiling about, and Mike likes to tease me and ask me why we keep returning to Hawaii.  We have planned to visit other places, but when it comes time to plan a trip, we end up returning to Hawaii.  I tell people that if they can only go to Hawaii once, they shouldn't go because they would spend the rest of their lives feeling bad about not being able to return.

Kilauea Point Light House

Endangered Monk Seal viewed from Kilauea Point

Tree Tunnel on the road to Po'ipu

Since Clinic Day - May 15, 2013

We had our field day at the ALS Clinic on Wednesdy, May 15. There are a few things that came out of that visit.

My lung capacity measurement was not as strong as three months ago. They ordered a cough assist device for me which was soon delivered to my house. I'm getting to know this device. The best way I can describe this contraption is by comparing it to a shop vacuum. If you were to put a shop vac in reverse and stick the hose in your mouth, it would blow a bunch of air into your lungs. (I don't recommend this.)  If you suddenly switched it to its normal vacuum mode, it would suck all that air back out (along with whatever). That is essentially what the cough assist does. When the respiration therapy guy brought the device over, he showed me all the settings and taught me how to change the settings and use the thing.  I have used it daily for over a month.  The main benefit of using it at this point is that it helps loosen stuff up so that I can cough it out under my own power.  For sure it "sucks." I fear that the main stuff getting sucked out is my brain. 

They also ordered me a walker with four wheels, a hand break, and a seat. I haven't had any problem using my orthotics or my walking stick. The feeding tube was not a big deal for me - in fact I like it. But the idea of walking around behind a walker does not thrill me.  It doesn't make an impressive fashion statement.  They explained it to me like this.

All of us have a certain amount of energy to expend - an energy budget. If you have ALS, your energy budget is smaller than if you were an Olympic athlete. We all have to budget our energy. So whether or not I use the walker is a question of where do I want to spend my energy budget. If I want to use it by walking around with shaky legs, feeling like I might fall down at any given moment, I can make that choice. But, that is a lot of energy to expend that can't be used somewhere else. So, I picked up the walker from the MDA loan closet yesterday. They had two of them to choose from - a red one and a green one.  I picked the "British Racing Green" because it is the sportier of the two.  I use it primarily around the house.

Speaking of falling down, I gave my friends (John and Jackie Jones, and Mark and Laurie Selman) a show last saturday evening.  I was walking around without my walking stick or the walker.  I went outside to see them off as they were leaving.  I turned to go back up the porch steps and tripped on my toe (or something).  I did my own version of a "face-plant" on the porch steps.  I scraped my leg and hand, sprained my pinky finger, and raised a nice goose egg on my forehead.  They rescued me from myself and helped me back into the house.  (Sorry you guys - but THANKS!!)

Then this last Monday evening I fell backward on the kitchen tile and put a nice goose egg on the back of my head.  So with bumps on the front and back of my noggin, my head is nicely and evenly balanced.  I've decided that if I am going to fall down, I need to plan it better and do it on the lawn.

Back to the clinic - they pointed out the difference in the muscles in my left hand compared to my right hand. My strength in my left hand is not what it was. I notice it the most when I play the guitar, or when buttoning, or unbuttoning my clothes - especially the top button on my Levis (see my previous post). I love to play the guitar, especially with my son, Joey. Heather, my physical/occupational therapist friend wrote me a prescription to go visit the hand-clinic at the UofU orthopedic center. It is possible that they could make me a specialized splint that would help my thumb strength when I play the guitar. I don't think it will help with the other problem mentioned here (the top button problem).

As usual we enjoyed the people at the clinic. Our speech therapist has left the U, so we met a new speech therapist.

My speech is crappy.  Gerrí and I converse mostly with my iPad.  I have a nifty app that allows me to type what I want to say.  I push a "go" button and it speaks whatever I have typed.  It is amazing how this technology has evolved.  The cost for this app is a few dollars.  Not that long ago many people would not be able to afford a speech synthesizer and, if they could afford it, they sounded like a robot.  Anyone who has watched a program featuring Stephen Hawking has heard what the technology used to sound like.  Now I can speak with an American or a British accent.  I can also decide if I want to get in touch with my feminine side.  That's right I can use a female American or British voice if I want to.  I need to make a little video to compare my speech with the video I posted in March and to demonstrate why the iPad does a better job than I do.  Maybe that will be my next post.

We also met a new doctor who has joined Dr. Bromberg in the clinic. Her name is Dr. Summer Gibson. Having another attending physician there means that the clinic will be able to see more patients on clinic day. Dr. Gibson is very nice - we are looking forward to getting to know her better.

Every time Gerrí and I meet someone new at the ALS clinic we ask them the same question. "Why did you choose to specialize in an illness for which there is no cure? Doesn't that get depressing?" Every time we ask this we get similar answers, and the answers remind me of when my Mom was on hospice. The hospice nurse who helped my mom and our family felt that her work was like a sacred calling. Maybe I'm overstating that somewhat, but that is the gist of it. Gerrí and I were touched when we asked Dr. Gibson the same question and we got the same kind of answer. It takes a special person to go to work every day to help people along their life journey, knowing that the results are eventually the same for every patient. We sensed the passion that Dr. Gibson feels for her work. All of the health care professionals at the ALS clinic have expressed the same thing.  Amazing!

Blessings and Miracles

 

From Gerrí -

I will admit that I wasn’t sure how I felt about Kevin starting this blog about living with ALS.  I’m a very private person and Kevin has pretty much shared everything about the progression of the disease.  Though it is hard for me to read, I know it’s been a good thing for Kevin to do.  He is very matter of fact about this so I’ve had to encourage him to “happy it up” on some of his posts so it’s not so depressing for everyone to read, including me.

When this whole situation started, we knew quickly that there was a high likelihood of Kevin having ALS.  Still, it was so hard to wrap my brain around.  How could something like this happen to Kevin?  Healthiest person I know.  But time passed with more symptoms and more adjustments in our lives and there was no denying it.  It has been about a year and 8 months since the symptoms started and I am amazed that we’ve gotten through this so far.  Kevin has been amazing throughout all of this.  He has accepted it with no anger or feeling sorry for himself.

I have accepted it too, though it’s broken my heart.  Early on when the doctors were testing for other diseases that, though terrible too, were not as bad as ALS, we prayed for a miracle that he would not have ALS.  But he did have it.  Some would say that my prayers were not answered and wonder if I was mad at God or had lost faith.  The answer is “no” because the miracles did happen and the blessings continue daily.

The biggest miracle is that we have been able to accept this challenge gracefully and even thankfully.  The miracles include the love and concern of so many people; their constant prayers, calls, cards, meals, visits, gifts, messages, cute posters left on the front door saying “we love you Kevin,” emails, an amazing neighbor who shoveled our 3 car driveway each time it snowed all winter (sometimes multiple times in a day,) a neighbor (with a broken foot) and his son who hung our Christmas lights (nice and straight the way I love them,) cute balloons, an amazing original oil portrait of Kevin and me, the continued love of Kevin's work friends, the friendship of Kevin's school buddies, the youth in our church ward doing yard work, cartons of Haagen Daaz ice cream when Kevin could eat it, priesthood blessings for both of us, wonderful supportive and kind medical people including the doctors and specialists at the U of U ALS clinic, sweet Kenya our cute friend who makes sure we get the room next to her desk at ALS clinic, the wonderful people at the MDA, the kind person that set up and continues to monitor Kevin’s bi-pap machine, the love of Violet Crawley, the Dowager Countess of Grantham from Downton Abbey, the friendship and support of all of our new friends who also have ALS and on and on the blessings continue.

I want you to know that though I am so sad that this disease has changed Kevin’s life, I am still happy.  I have the love and blessings of my dear Lord, the love of my sweet Kevin, the love of our children and family, the love of so many friends and my understanding of the Gospel of Jesus Christ.  Kevin is my eternal husband and my best buddy. 



Oooo Baby

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.