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.