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.

Dust and Doctors

We have been busy since we returned from Maui.

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

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

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

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

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

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

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

 

Good Bye U of U, Hello Palo.

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

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

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

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

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

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