Beginning, Part II

A little bit about this disease.
Bulbar onset, which Les has, is when the motor neurons in the brain stem are affected first and symptoms start in the face, mouth, throat and tongue - called the bulbar region.  When symptoms also show in the spinal cord affecting the limbs, Les will be considered ALS.  Amyotrophic lateral sclerosis (or Lou Gehrig's disease) is a disorder of the motor neurons in the brain and spinal cord that control the action of voluntary muscles.  For unknown reasons, in ALS these motor neurons die, and the muscles they control no longer function, gradually becoming paralyzed.  In numbers, about 2 people in 100,000 get ALS.  What a coincidence that our friend Ken who lives down the street also has ALS!

One of the reasons I started a blog is for our far away family and friends.  All of our eight brothers and sisters live away.  I have two brothers in Eastern Washington, a sister in Iowa and a sister in California.  Les has a sister in Minneapolis, a brother in Minnesota, and two brothers in Iowa.  We have cousins, aunts and uncles all over the United States.  We also have friends all over the country!  It is so much easier for me to keep in contact with them this way.  If anyone wants updates, they can read the blog; nobody gets left out of the loop.  Les didn't want to go the CaringBridge route; he felt it was too "final".  He is determined to be the guy that beats the odds and lives for ten more years.

Another reason is that I like to write!  And it will be good for my soul to share our thoughts through this journey.

Thanks so much for taking the time to read this, and for your prayers.  We definitely feel them!  We both had a good day today.

A New Season

We are embarking on a new journey - a new season of life.  Certainly not one we would choose, but we are not in control, God is.

Les was diagnosed on October 11 with progressive bulbar palsy, which most often leads into ALS. His symptoms started last April with a sore throat - couldn't sing very well.   After two different ear/nose/throat doctors' diagnosis of damaged vocal cord and acid reflux, we ended up at the UW Medical Center in Seattle.  A lady on Les' UPS route heard his voice and thought he might have what she did-larynx issues-so recommended we go to her doctor at the UW.  After a day of testing with the larynx specialist, he sent us on to the neurology department.  We spent several days over several weeks testing in the neurology department. Our Dr. Weiss is the director of neuromuscular disease, an associate professor of neurology, and we thank God that we ended up with him.  During this time, Les' speech was becoming more slurred and he continued having throat issues.  After a final EMG test and ruling everything else out Dr. Weiss diagnosed Les with PBP.  The day he told us is a bit of a blur! It took several days for us to digest this (and not looking things up on the computer as they requested) and then we went back to UW with our kids and my mom.  Dr. Weiss' nurse/counselor spent time with us going over the disease and walking through our future.  A difficult, tear-filled meeting. Nurse Jen cried with us! Again, we are so thankful for the UW and everything they have to offer us as we go through this difficult journey.

The weekend we received the diagnosis, we were OVERWHELMED with calls and visits. Les was having a difficult time with his emotions (emotional incontinence, a part of the disease) so him and Steve Groen headed to eastern Washington to hunt.  They spent three days hunting and solving life's problems :) I used the time alone to process and grieve.

We are so glad we have Sonlight church and this community. We are still receiving calls, cards, visits, and most importantly, prayers. We cannot do this alone.

And so niece Emily got me started on a blog.  We will use the blog to send out information as needed, and to keep you updated with our family.  I have lots more to write, so stay tuned!