Click 2012 ( over there -> ) and start at the bottom if you want the story from the beginning.

Thursday, December 13, 2012

Mmmm - Chocolate Chocolate Chip Ice Cream

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

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

So, what did we learn from this visit?

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

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

1050 Guilt-Free Calories
So, in February, after the holidays, and after our Maui vacation, I will probably get the PEG feeding tube placed which will allow me to bypass the usual eating process.  But here is the great news!  I'm a picky eater (right Gerrí?) and I won't have to eat stuff I don't like. . . and I can still have my Haagen Dazs chocolate chocolate chip ice cream !!!

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

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

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

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

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

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

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

Sunday, November 4, 2012

No offense intended.

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

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

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

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

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

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

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

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

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

Saturday, October 20, 2012

Welcome to ALS Support Group !

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

September Meeting

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

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

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

October Meeting

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

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

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

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

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

Sunday, October 14, 2012

How are you?

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

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

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

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

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

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

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

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

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

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

Saturday, October 13, 2012

Someday, I'll touch the blue blue sky.

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


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

But, I digress . . . . .

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

Click here to see video of my flight.
(Can't be seen from mobile devices.)
.
Anyway, I suggested that, if it was going to be too much trouble to move the two aircraft, I would be "satisfied" to fly in the T-6.  Actually when they said "yes" to that, I was really excited.  So as you can see from this photo, and the link, I had a really great flight in this classic aircraft.  I got to take the stick for about 10 minutes and put that plane into some nice steeply banked turns.  It was fantastic!

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

Here is proof. She put up with this for several years.
If you want to see a video of this kind of flying,
rent the movie "Fly Away Home."

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

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

Saturday, September 8, 2012

Bucket List: Skydiving? CHECK!

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

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

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

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

http://youtu.be/1tUYeGGFaAo
So before you click on this - let me explain why some things look kind of weird.  When my trainer and I jump, I have my head back and my hands in the chest straps of the harness.  It looks like I don't want to look down, but actually, that is what they instruct you to do.  I wanted to be able to see the event clearly, so I had my prescription sun glasses on.  They gave me goggles to go over the glasses, but I found that when you are falling at a rate of 110 miles per hour, it is a bit difficult to keep those goggles in place.  Also, at the beginning of the video, I sound a bit drunk.  That is the ALS talking.  I did NOT take anything to calm my nerves - I promise!  I really was not nervous.  (What do I have to lose?)

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

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


Flight 1:  Joey and Jordan
 
 
Flight 2:  Lindsay, me, Kristin


Sunday, September 2, 2012

Making ALS Fun - Please give to MDA?

It is Labor Day weekend, which means the MDA is having its annual TV Telethon on the ABC TV Network.  It is a very surreal experience to watch this program and realize that they are there to help me and my family.  So, I think this is a good time to introduce you to the MDA through my own personal experience.

Now that I have been diagnosed with ALS, my visits to the University of Utah Clinical Neurosciences Center are different.  I'm now a member of a very special new family - the Muscular Dystrophy Association Motor Neuron Disease Clinic at the U of U.  I have been amazed by the work that they do at the U, and now I have a new level of understanding, respect, and admiration for what MDA does up there.  The MDA clinic is devoted to caring for patients with ALS and 40 other motor neuron diseases.

My first experience with them was on August 15th.  They conduct the ALS clinic on Wednesdays. Other days are reserved for other neuromuscular diseases like muscular dystrophy.  On Wednesdays they schedule 6 people like me - only 6!  And they spend the entire afternoon with those 6.

I was surprised when we checked in at the clinic and they would not take my $25 insurance copayment. We checked in at 11:00 a.m. and they escorted us to our exam room.  Mine was right next to Kenya's work station which made me very happy.  For the next several hours I visited with a whole team of wonderful people led by Dr. Mark Bromberg.  One by one, these professionals spent as much of their time as we needed to answer our questions and give valuable advice and support to help Gerrí, me, and our family.  Not one of them rushed their visit.  Over the next several hours I spent time with these people.

Mary Jensen is the Clinic Nurse Coordinator.  She juggles all of the resources that are offered by the clinic.  She is the go-to person if we have any questions between visits, or if we need to get in touch with any of the team members.

Lesha Krantz and Heather Hayes form a team for Occupational and Physical Therapy.  As ALS progresses, they are there to stay one step ahead of problems that I may have in dealing with my environment and in performing every day tasks.  They give advice on making our home more ALS friendly, and they assess our needs for medical equipment, including wheel chairs. I left that visit with a prescription for a support device to help me with my footdrop problem to prevent falling.

Michelle Taggart is a Speech Therapist.  She helps me in dealing with speech and swallowing.  These are problems that I am already experiencing.  They give hints on how to eat without choking and strategies on how to preserve my voice and speech like the use of voice amplification devices and, as things progress, devices that can do the talking for me.

As swallowing gets more difficult, people with ALS tend to lose weight.  They are very concerned about that, because with ALS, I will lose muscle mass through atrophy.  That happens no matter what, but, on top of that, they don't want me to lose muscle because I'm not eating enough.  So, Kari Lane is the Nutritionist that helps with this issue.  She helps by recommending ways to make food and liquids easier to swallow without some going down the wrong pipe (already a problem for me).  She is also there to let me know if a gastric feeding tube should be considered at some point.  I've always been a picky eater, so it's good to know that I will be able to eat without tasting foods I don't like.

Natalie Bee is the Respiratory Therapist.  She tests my lung capacity and the strength of muscles that are used in breathing.  She's there to recommend different ways to deal with coughing and breathing issues as they develop.  She's pretty important because breathing problems are usually what ends the lives of people like me.  I already cough quite a bit, and now I have the strength to do it well.  It is hard to imagine not having the strength to cough when I need to.  They have cough assist devices to help.  At some point I will be presented with the possibility of needing a tracheotomy and a ventilator machine.  Natalie and Estelle Harris, the Pulmonologist are there to help me make decisions about that.

Kathy Day is the clinic's social worker.  As you can imagine, ALS is hard to wrap your mind around, not just for me, but even more so for Gerrí and my kids.  Kathy is there to help me and my family deal with emotional and psychological issues.  We are looking forward to spending time as a family with her.

Anne Nicholson is the MDA Representative.  She's there to support all of us.  I was surprised to learn that MDA has a "loan closet" full of medical equipment, including wheel chairs.  I like to joke in my morbid way, that the loan closet works because ALS has a high turnover rate.  MDA also sponsors a support group that meets on the first Tuesday of each month.  My first meeting with them will be this week.

And, of course, there is Dr. Bromberg.  His specialty is ALS.  He sees patients from all over Utah, southern Idaho, and northeastern Nevada who are served by the MDA Clinic.  Again, I am amazed at how much time Dr. Bromberg is able to spend with me.  We probably visited with him for an hour or more, and we asked question after question.  He just stayed there until we were done. 

One of the last things we did was work with Kenya to schedule another appointment for November.  Kenya's husband dropped by the clinic during the day and she brought him to our room to introduce us.  He must be a great guy to have married a girl like Kenya.

These are all REALLY nice people.  I like to call them the people that are there to make ALS fun!

These services and the care they offer are available because people give to MDA.  All of the services I've described are just for ALS patients like me.  They also conduct research and clinical trials.  I am already a part of a research project that is looking for genetic causes for ALS, and I hope to participate in any trials that they do.  Trial results may not help me, but they have to keep looking for causes and cures for others that are coming down the road.

If you would like to contribute to the great work that they do, now is a good time with the MDA Telethon going on.  You can make a contribution over the phone by dialing 1-800-FIGHTMD.  That is 1-800-344-4863. You can also contribute on-line at https://secure.mdausa.org/donate/ .  You can find that link at MDA.org.  You can also text "MDA" to 20222 to donate $10 on your cell phone bill.

There are a lot of people less fortunate than I am that could really use our help.  I really appreciate it, too.  Thanks everybody!

Saturday, September 1, 2012

Make a wish.

On July 13th, I received an invitation from a dear friend of mine.  Her name is Eve Mary Verde.  We worked together at the phone company for many years.  She is part of a group of former phone company people that I like to call the boat people.  Eve Mary also worked at the U until not too long ago.  Also at the U are boat people, Judy Yeates, Linda Lane, Terry Cirillo, Anita Sjoblom, and Denise (Elwood back at the phone company).

Eve Mary is now the Development Director for Hogle Zoo.  She has had a long association with the Zoo since long before she took this position.  She is understandably very proud of the Zoo, with it's beautiful new displays for which she played an important fund raising role.

Eve Mary invited us all to a special and personal VIP tour of the Zoo.  Those who were able to accept the invitation for July 26th included Judy, Linda and her sister Pam, and me and my wife Gerri'.

Linda's sister, Pam was recently diagnosed with a nasty case of colon cancer.  On the 26th, it had only been a few days since she had been through a difficult surgery.  She is now going through chemotherapy.  She just happens to work at the Huntsman Cancer Center, where she is receiving the best treatment that is available anywhere and helping other cancer patients.

We met at the Zoo's gate where Eve Mary had a 6 passenger electric vehicle (like a big golf cart) waiting for us.  She treated us to dinner at the "Beastro," the Zoo's new dining area.  And then she guided us through the whole Zoo with a special introduction to the new Rocky Shores exhibit, where visitors enjoy beautiful views and close up encounters with penguins, seals, sea lions, and . . . BEARS!   Visitors literally come face to face with a polar bear and can watch grizzly bear siblings making mischief.

We saw the whole Zoo, effortlessly, and enjoyed Eve Mary's commentary based on her close association with everything that happens at the Zoo.  We even took a ride on the carousel!  This was a great experience for all of us, but probably most special for Pam and me.  Neither one of us could have trekked easily over the entire landscape of the Zoo.

As we were leaving and saying our "see you laters," Pam and I took a few steps away from the others. I asked Pam, "Do you feel like a make-a-wish kid?"  She smiled with me, knowing exactly what I meant.

Thank you Eve Mary Verde for your kind and generous heart.  Eve Mary has been through her own bout with cancer and has recently lost a very close family member to cancer.  Anita Sjoblom, another of our boat people, had the fight of her life with breast cancer, just a few years ago.  When she didn't know whether or not she could or should pursue a really long and difficult course of chemo, Eve Mary put her arm around Anita and took her to a support group that helped her have the strength to go through chemo.

Nobody cares and shares the worry, pain, and misfortune of others like Eve Mary.  There is only one Eve Mary.  It's very hard to imagine our world without her in it.

We all love you, Eve Mary.

Sunday, August 26, 2012

I wouldn't do that if I were you.

May 8th rolled around and I had another appointment with Dr. Gordon Smith and another Dr. who is there on a fellowship.  These are very impressive people (not just impressive doctors). And very nice people, too.  I've never had doctors spend more time with me on a visit.  And our new friend, Kenya, is still there each time I visit which is actually very comforting.

We did a repeat of all of the physical exam that was performed in February.  Again they asked us to hang around in the afternoon because they wanted to repeat the EMG needle test.  So the bottom line of the May 8th visit is this:

I don't have Kennedy's Disease.  There is a remote possibility that I could have something very rare that has some of the characteristics of Kennedy's, so they sent my blood to some folks who are doing genetic research.  Dr. Smith said that it was highly unlikely that those tests would show anything new.  The results of the EMG needle test and changes in my speech indicate that the condition has progressed since Februrary.  "Progressing" seems like an interesting word to describe a degenerative condition that we are now calling ALS.  The good news is that the progression rate appears to be slow.  They can't really predict life expectancy with any degree of accuracy, but Dr. Smith says that ALS tends to progress in a very linear fashion.  He says that the progression rate that is experienced in early stages typically stays that way through the course of the disease.  The average lifespan of ALS patients is 2 to 5 years after diagnosis.  Some people progress very quickly and don't last a year.  Others go much longer than 5 years.  We are betting that I will be around a lot longer than 5, but there is no way to predict.  This is a wait-and-see, one-day-at-a-time deal.
Kenya and her Hubby


Kenya dropped in after our visit and set another appointment for July 10th, which rolled around very quickly.  This time my youngest son, Joel (Joey) came with Gerrí and me. 

Dr. Smith and another Dr. on a fellowship again checked me out.  These younger doctors on fellowship are getting a lot of great experience working with Dr. Smith and others at the neurology clinic.  Most of these doctors will move to other areas of the country and take the knowledge gained here with them.  Each visit starts with an exam by one of the fellows and is followed by an exam by Dr. Smith.

One of the symptoms/characteristics of ALS is exaggerated "hyper" reflexes.  So the fellow sat down to test the reflexes in my knee.  He sat down directly in front of me, with his legs apart and a little hammer in his hand.  I took a look at my toe, judged its most likely trajectory and said, "I wouldn't do that if I were you."  My reflexes are very "brisk."  Heck, they're down right dangerous.  In my mind, his children and grandchildren were fading from a photo, just like in the movie "Back to the Future."  Well, of course the doctor had plenty of experience and showed me how he positions his hand to prevent damage to his man parts.  So, happily, there is still a family in his future.

The exam this time showed that the progression rate appears to be holding steady.  This time they noticed some weakness in my left leg. Over the month or so leading up to this exam, I had noticed that my legs felt different.  And, walking around the Eccles Broadcast Center at work, I noticed that my walking sounded different.  Now I know why.  The muscles in the leg that lift your toe as you walk have weakened in my left leg.  So, when I walk, especially as the day wears on, my toe drops to the floor causing my shoe to slap the floor.  So as I walk, it sounds kind of like, "step, thump, step, thump," with the thump being my left shoe.  It reminds me of the old horror movies, where the mummy walks like this - "step, drag, step, drag."  So, I'm supposed to pay closer attention to this, because eventually, I may be tripping on my toes.  Apparently, people with ALS fall down more than other folks.  I'm not having that problem yet, knock on wood (tap, tap, tap).

One day, I also realized that I could not put a spring-loaded capo on my guitar with my left hand.  Fortunately I don't use spring-loaded capos very often.  Joey also told Dr. Smith that he notices that my left hand shakes when I play guitar chords in the upper range, where the strings are stiffer and it requires more finger pressure.  (Joey and I play the guitar together almost every Wednesday night.)

So, little changes here and there, but so far, nothing too drastic.  My speech is getting messier, but I was expecting that.  Speaking spanish with our latino friends is now a real chore.  As I type this, I can hear my voice and speech as it was before - but when I open my mouth I hear someone quite different.  One day I called home and Gerrí wasn't there.  The voice mail answered and I heard my old self.  I don't think I'll be erasing that recording any time soon.

Dr. Smith told me that my next visit, in August, would be with a different doctor.  My diagnostic process was evidently behind me and now I would be working with a team of people, led by Dr. Bromberg.  Again, my friend, Kenya, dropped by to set my appointment for August 15th.

Monday, August 20, 2012

Choose wisely!

Waiting for the results of the test for Kennedy's disease wasn't so bad.  On February 28th, Gerrí and I left for Maui and had a very nice time.  We were there almost 3 weeks.  We didn't waste any time worrying or wondering about medical stuff.  I don't think that this new situation made much of a difference in our activities - we pretty much did what we always do, with minor adjustments.

The week of March 19th I made a call to find out if the results were back.  They should have been, but they weren't.  So Mary, the coordinating nurse (another very nice member of the team up at the neurology clinic), had to chase down the lab to find out what was up.  This went on for a week or so, but Mary told me that the results should be there on April X (can't remember the date).  Right after that day I called in and Mary was busy so I asked for my little friend, Kenya.  Kenya confirmed that the results were in and said she could share them with me.  Kenya was very happy to tell me that the DNA test came back negative.  No Kennedy's!  Great news!  Right??  Well . . . .actually no.  That means that I was back to flunking tests for conditions other than ALS - kind of a bummer.

I emailed Dr. Smith asking for clarification and confirmation of the test results.  He answered by email and explained that he was not satisfied with the test results and that he would speak with the lab and probably ask them to run the test a second time.  There are two notable things about what I just wrote.  1)  I have a very busy, nationally renowned neurologist who responds personally to email.  I don't know about you, but I've never had a doctor that responsive, and on a first name basis, too!  2)  Maybe I could have Kennedy's after all.  New hope!

Ian Blue Riley
Now, here is a dilemma to consider.  Nobody wants to get ALS, right?  But Kennedy's is genetic.  It is passed down on the X chromosome like hemophilia.  If I had Kennedy's, that meant that my daughters are carriers and that their sons would have a 50% chance of getting Kennedy's.  So here is a question for you.  Would you take ALS if it meant sparing your grandsons from getting Kennedy's?  I felt a little like Indiana Jones and the Holy Grail - choose wisely!  I was beginning to feel selfish about even hoping for Kennedy's even if it meant a new joke for my conservative neighbors.  So I felt very differently as I waited for the second test results.  First of all, if they know specifically what gene causes Kennedy's, which they do, then you either have the gene or you don't, right?  It should be a simple yes or no.  In my heart, I really believed that the first Kennedy's test result was the real deal.  And, now I was pretty sure that I didn't want to have a genetic disease which I could pass down to my posterity.  I only have one grandchild.  And his name is Ian.

But we did wait, and eventually the second test came back - again, negative for Kennedy's.  Mixed feelings?  Not really.  Dr. Smith said that he still wanted to talk this through.  He said that even though the Kennedy's test was negative, it is a very big coincidence to have a neuromuscular disease and gynecomastia.  Maybe there was still something to that.  He was going to do some more research and we would discuss it at my next appointment.

My next appointment with Dr. Smith was going to be on May 8th. 

You deserve it, you socialist !

So - - What I am trying to do is get this current so that I can just update this as we go.  I'm sure that I will be posting less often once I get this up-to-date.  Besides letting friends and family know what's up, I'm hoping that this account will help others who go through this diagnostic process. Of course, every case is different.  Now, where was I?

While Gerrí and I were waiting for our January 23rd appointment with Dr. Banks, I had my list of possibilities from the Internet, but we didn't discuss it much.  There was no point in speculating or dwelling on the possibilities, so we waited for that appointment.

We met with Dr. Banks who examined me.  Basically the exam consisted of looking at me - like staring at my face, testing my strength, checking my reflexes, having me touch the tip of my nose with my finger, making me walk a straight line, following my eyes, yada yada yada.  It all seemed very routine.  Then Dr. Banks said, "OK, we are going to draw your blood and run a panel of tests to identify or rule out any number of conditions."  Besides the blood tests, she wanted me to do a swallow test.  I asked her what she was looking for.  She listed several conditions, all but one of which were on my own list.  (I missed Myasthenia Gravis.) She then explained that what I was going through for the next little while was a process of elimination.  The blood panel could identify or eliminate almost everything on her list, except ALS.  So, if the tests were to come back negative, she would refer me to the University of Utah Clinical Neurosciences Center, where "all the ALS experts are."  None of this was a surprise to me, but it was weird hearing my list read back to me, and it was the first time Gerrí was faced with all of the possibilities.  So, they took my blood, sent it to the labs, and we waited.

One by one the test results came back negative, eliminating each item on our list.  So, Dr. Banks sent all of the test information up to the U of U along with a referral for me to visit with the Docs up there.  I didn't have an appointment and had no idea when I would get in to see the folks at the U.  But, I work just down the hill from the University Medical Center, so a few days after my test stuff was sent up there, I walked up to the Neurosciences building.  There, I met a very nice young woman named Kenya Arnett.  She is the scheduler for the doctors I needed to see.  At first, it appeared that I would be able to get an appointment pretty quickly, but then she noticed on my records that I needed to get an EMG test (Electromyagram) which consists of a nerve conduction test and a needle EMG test.  This was going to take longer to schedule - like another month or so.  I had a bit of a problem.  (By the way, everyone should have this problem.)  Gerrí and I were leaving for Maui on February 28th.  I told Kenya that it would be a lot easier to go on vacation if this were not hanging over my head.  She obviously understood and told me she would do what she could to get me in sooner.

True to her word, she called me within the next hour and had an appointment all set up for February 7th.  I was so grateful for her extra effort.  It felt like I was getting very close to an answer.

On February 7th, I met with two doctors.  Dr. French, who was on a fellowship at the U, and Dr. Gordon Smith, the attending physician.  Dr. French examined me, doing many of the same things that Dr. Banks had done, plus some other stuff.  He left the exam room, consulted with Dr. Smith, and both of them returned to the exam room.  Dr. Smith repeated much of the exam and then asked if I could spend the afternoon with them.  They wanted to do the  EMG test that same day.

The nerve conduction test is one where they put electrodes on your skin and zap you to measure how fast the nerve signals are traveling to and from the muscles.  That part of test appeared to be normal.

The needle EMG test is interesting.  They place little accupuncture sized needles into your muscle and hook the needles up to a computer that can measure the nerve impulses in your muscles.  Smart neurologists can tell the difference between normal and abnormal nerve impulses.  This is the first test that I aced.  I got an A for Abnormal.

If you are interested, and have no life, you can see what these tests are like here:  http://www.youtube.com/watch?v=k0uSpYd_Ics

After the test, the doctors stepped out to analyze the data and consult with one another.  Upon their return Dr. Smith had a rather odd question for me.  Dr. Smith said, "I don't mean to offend you, but I need to ask this question.  Have you ever had surgery on your breasts?"

Wow - that certainly came out of left field!  But, quite amazingly my answer was, "yes." 

Dr. Smith said they were going to return with a diagnosis of a motor neuron disease, in this case ALS, but they had just enough information from their tests to prompt the question.  It seems that there is a disease that mimics ALS called Kennedy's Disease.  Kennedy's is a hereditary disease.  It is similar to ALS in many ways but it doesn't usually kill the patient, which is a definite plus.  One characteristic of that disease is gynecomastia - or breast tissue that develops in young men at puberty.  This is not an uncommon condition - in fact, if you've ever heard of a boy being teased about "rock tits" he probably had gynecomastia.  In my case, at three different times as an adult I developed small painful lumps on my chest, which were removed surgically.  So anyway, gynecomastia is not good news when you are a teen because idiot teenage boys like to give "titty twisters" to boys with this condition.  But now, in my case this was potentially very VERY good news.  The only way to determine whether or not one has Kennedy's is to do a genetic test.  So they drew some blood and sent it off to a lab.

Gerrí and I left the clinic that day with the understanding that I had a motor neuron disease, but with the very real hope that it would be Kennedy's disease.  I kind of liked the idea of Kennedy's for more than one reason.  I tend to lean to the left of center on many of today's political issues and I was looking forward to telling my very conservative neighbors that I had Kennedy's.  I was sure that they would say, "And you deserve it, too, you socialist!"



Hanging with the guys
back in the day.

Sunday, August 19, 2012

The perils of Google

I received my MRI results the week of Thanksgiving, 2011.  The clean MRI showed that I did not have a tumor or any kind of stroke.  Both of those can affect speech so I was feeling pretty good.  I had yet another follow up visit with Dr. Butler (the ENT).  He asked me if I had an appointment set with a neurologist.  I explained with a smile that I had an MRI and that my brain looked much younger than a guy my age, so, no worries.  His response was different than I expected.  He told me that there are a lot of neurological problems that can affect speech that would not appear on an MRI.  Again, he instructed me to get an appointment with a neurologist and to do it NOW.

Well, everyone knows that you don't just call the neurologist on the corner and get an appointment for tomorrow morning.  These are busy people.  It takes time.  I was going to have to wait several weeks to see Dr. Banks, the neurologist that Dr. Hansen wanted me to see.  I had heard good things about Dr. Banks, so I decided it was worth  the wait.  But it was now early December and the earliest appointment I could get was January 23rd.

Meanwhile, I started noticing some other things going on.  I started experiencing muscle twitches in different parts of my body.  Everyone has felt muscle twitches and knows what those feel like.  But, this was different.  I was having a LOT of twitches, and not just in one place.  These were head to toe.  At times it felt like there were tiny woodland creatures crawling around under my skin.  Still, I was more curious than concerned, so I started looking on the Internet, trying to see what things could cause speech problems and muscle twitching. 

Try this some time:  Open up Google and type in "slurred speech muscle twitches" and see what you get.  The first thing that is listed is ALS.  So naturally you want to keep looking, right?  No one wants to see ALS.  So I created a list of different conditions that had the same symptoms.  None of them looked very "fun."  But if I had to choose, ALS was not on the top of the list.

Now the wait was on.  I had my slurred speech, my twitches, a list of ailments from Google, and a few weeks to kill.  So I spent the holidays speaking as though I had been enjoying the holidays a little too much for a Mormon boy, and twitching up a mini storm.  These things didn't prevent me from having nice holidays and continuing my work at the University of Utah, but hey, if you want to be constantly reminded that something might be wrong, have someone shoot novocaine into your tongue and then poke you lightly all over your body 24x7.

http://www.alsa.org/about-als/symptoms.html

Maybe this is the new me?

This all started early in the fall of 2011.  I had been experiencing some problems with my voice.  Nothing strange; mostly my voice simply got softer and more hoarse.  My regular doctor, Matt Hansen, suggested that I see an Ear, Nose, and Throat specialist (ENT).  Dr. Butler, the ENT examined me and decided that my little problem was most likely caused by some minor acid reflux.  They gave me some antacids and some advice on how to minimize the problem and asked me to follow up in a couple of months.

As the weeks passed, my voice didn't improve, and I found that I was having problems with my speech.  It was as though my mouth couldn't form words as easily as before.  This was annoying but I wasn't alarmed.  I figured it must be something related to my acid reflux problem.  One day, I was visiting with a colleague at work, our Finance Director, Lisa.  It just so happens that at this same time I was having a problem with my shoulder called adhesive capsulitis - frozen shoulder.  This is an annoying condition but not unbearable by any stretch.  Lisa was having a different kind of problem with her shoulder and that day she asked me how I was doing.  I told her that I was fine.  She asked me if I had been taking pain medication for the shoulder.  I answered that I was not.  She then asked me again, as if she didn't believe my answer.  I assured her that I would know if I were taking pain meds, and unless someone was slipping something into my Dr. Pepper, I was clean.  She then told me that she was concerned about my speech.  She said that I sounded as if I were under the influence of a narcotic substance.

Within a few days of my conversation with Lisa, I was conducting a meeting with some folks at the University of Utah, when Chuck, the Dean of the Graduate School, asked me what I had been drinking for lunch. I passed that off as just a funny comment.  Then, one day, my boss, Eric, the University CIO, also asked me, "When is that going to get fixed?"  He was talking about my voice quality and my slurred speech.  I said that I didn't know - "Maybe this is the new me," I said.  I decided that I had better ask my ENT to take a closer look at what was going on with my voice.

When I visited the ENT, I asked him if he could check to see if there was something going on that would affect my speech - not just my voice.  He gave me a concerned look, mentioned that he could hear the change in my speech, and told me that he would take a look but that he didn't think he would find anything.  He scoped my throat, vocal cords, etc., and comfirmed that there was nothing that he could see that would be changing my speech.  Then he told me that I needed to ask my regular doctor, Dr. Hansen, for a referral to a Neurologist.  I was like, HUH?  He told me that I should try to get something set up as soon as possible.

A few days later I had a follow up visit with Dr. Hansen.  I passed on the info from my ENT and Dr. Hansen said that he also noticed a change in my speech.  He said that I needed to get an MRI on my noggin as soon as possible.  He was able to set it up for the very next day.  On the paperwork, the reason given for the need for an MRI was "onset of disarthria." So, I went in, got the MRI done, and received results that said that my brain was not just normal, but very good looking!  No problems.  I breathed a sigh of relief, but I found that this was not the end of it.

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