3 Month Progress Report

On Wednesday Les had another 3 month progress checkup.  That means it's been 9 months since his diagnosis.  The past 3 months have gone so fast - we have been busy!

We met first with Dr. Weiss.  He is such a kind, compassionate man.  When Les gets a little emotional, Dr. pats Les' knee and tells him how sorry he is.  We talked about symptoms and how Les is feeling.  Dr. Weiss is ordering a bi-pap machine for Les to sleep with.  Les has a hard time breathing when he lays down - he is already propped up on pillows.  The bi-pap machine will help him breath, and Dr. Weiss thinks it will help with Les' fatigue.  We hope so!  Les has been very fatigued lately and naps almost daily.  Les then went through the lung test, and his lungs are again a bit lower in capacity.  Nothing to get alarmed about yet.  We also discussed the saliva issue.  The Botox helped a bit, but not much.  There are no other drugs to try.  Dr. Weiss recommended talking to Dr. Hillel about this - Les has an appointment with him next week to take a "vocal fold" test.  Dr. Hillel does lots of Botox on ALS patients and Dr. Weiss is more comfortable having him perform the Botox in the throat (which would be the only other option for the saliva issue).  Dr. Weiss also acknowledged weakness in Les' right hand/arm (for example he can't turn the key in the car ignition anymore) and a "shakiness" in his legs.  Dr. referred us to Occupational Therapy and Physical Therapy to start discussions about these issues.  We haven't been to EVERY floor yet at UW, but looks like we might get there yet!

We had a quick chat with nurse Jen, which always cheers Les up.  She, too, is such a sweetheart.  Les weighed in at 190, so has gained a few pounds, but is still pretty thin.  We found out that our normal lung technician, William, took his own life this past Friday.  The whole staff in Neurology was still upset and trying to deal with this loss.  We also very much enjoyed William.

Next up was Les' appointment in radiology for the new "Mic-Key" feeding tube.  The old tube was quickly switched out for the new one; no anesthesia required.  The new tube is button size; the old one was a 6" tube.   Les was all smiles after - he was so tired of that other feeding tube always hanging down, pulling in and out.  A welcome change!!

And we were done!  7:45 am to 11:30, not a bad day.  We have several appointments next Tuesday; that will be a full day.

Here is a picture of us at a recent wedding (minus little man).  David & Mikaela, you had a beautiful wedding!!  We are counting the days for Kris & Hannah's wedding!