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Friday, August 22, 2014

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.

Thursday, June 19, 2014

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.

Monday, April 21, 2014

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.

Tuesday, March 25, 2014

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'.

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