Sunday, November 10, 2013

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!


6 comments:

  1. I am so sad that your journey has taken a turn into a difficult road...I will be praying -- and especially that, along this road, you will find times of joy and plenty of plain old everydays that are comfortingly boring. God bless you all!!

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  2. In this Season of Life may your journey bring you peace that passes all understanding, love like no other, and joy that is boundless.

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  3. Praying for your family during this new season of life...praying that God will give you peace, rest & time together as a family with that new little Grandbaby coming!!

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  4. Prayers for you and your family as you face these changes in your lives...

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  5. Gene & Linda Boersma, MNNovember 10, 2013 at 8:20 PM

    Thanks to Howard and Vicky for passing this info along, Cous. You are definitely on our prayer list. We pray for God's peace for you all along the journey and grace for the tough spots that are bound to be present along the way.

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  6. Aw, man! So sad to hear that Les and the rest of you are now dealing with such a devastating diagnosis. I'm glad to hear you are starting a blog-- I will check in with you regularly and pray for sure! Miss you all.
    Angela Lenssen

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