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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.)
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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

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