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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.


  1. Hey Kevy,
    Thanks for the blog, I have wanted more details, I appericiate you sharing your story. Your a great writer, I love hearing your voice through your written words. I pray you have an abundance of time to enjoy your guitars. We love you, we support you, we pray for you. I look forward to the blog updates. See you around the neighborhood.
    Much love,

  2. Oh Kevin, I'm so sorry you have to go through this illness. You have a wonderful sense of humor about it! I didn't realize you lived in Draper, I'm in Riverton. Wow! Keep up the positive attitude and trek on! Stay in the present, not the works. Of course, you probably already know that, but it's a difficult task if you're a professional worrier, like me. My prayers and thoughts are with you.

    Randi Sharp McQuiston-classmate



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