Therapy and Botox Part II

We had a LONG day at UW on Tuesday.  We had been staying out at Birch Bay so I was a little crabby pants about spending a whole day in Seattle when it was sunny and 82....

First up was the 9:00 with Physical Therapy.  We didn't expect too much from this appointment, and we were correct.  They just tested Les' balance and leg strength since he is a bit weaker.  With ALS you CANNOT overextend yourself physically or you will permanently lose that strength.  They suggested working on some balancing, walking just until tired.  They thought Les could start coming once a week to therapy.  "No thank you" we said!!   Our friend Lori (a physical therapist) can take good care of Les.

The second appointment was with Occupational Therapy.  This was a bit more informative.  We went over getting the house ready - grab bars, raised toilet seat, shower chairs, etc. etc.  We also went over tools to help with feeding, drinking, dressing.  We have a catalog to browse for items that Les feels would be beneficial.  Again, our friend Lori can help us with this.  We do want to be proactive and ready before it's absolutely necessary.

We had several hours' break until our 3:00 appointment.  On my agenda for the day was tracking down suit coat jackets for Kris' wedding.  We headed to NorthGate mall, hoping they would have everything we needed right there.  Ha!  Nothing.  But the salesman was very helpful and he looked up stores all across the US which carried that particular jacket.  I had some homework to do!!  We ate some lunch and headed back.  The traffic in Seattle was HORRIBLE all day long. 

Les' 3:00 appointment was with Dr. Hillel.  This is the throat specialist that he saw a year ago, our first appointment at UW.  Oh don't we wish it was only a vocal chord issue..........But that is water under the bridge.  It is what it is.  Anyway, we were told Dr. was 1/2 hour late so we grabbed coffee and settled in.  We finally saw Dr. Hillel about 4:30 and we were tired!  He did a scope down Les' nose to see the throat to make sure the vocal folds (cords) are still working properly.  Les' vocal folds  clamp shut; not allowing a breath when having a choking spasm.  There was also an intern in the room, Ginger the speech therapist, and a nurse.  The room wasn't big enough!  But then - Dr. said he was ready for the Botox.  WHAT??? we asked..........we were not expecting that!  Dr. Hillel said he had an order for Botox.  YES PLEASE! said Les.  Dr. Hillel is the EXPERT in this area.  He used an ultrasound machine on Les' throat as he guided the needle into the saliva glands.  On Les' right side, the Dr. had a bit of a struggle finding the saliva gland and used two needles and lots of juggling.  I think Les had just zoned out because he did not move! When Les sat up he had quite a bit of blood in his throat, but Dr. wasn't concerned.  Dr. made another Botox appointment for two months.  We have experienced that when anyone at UW realizes you are an ALS patient, they bend over backwards to help in any way they can.  A silver lining!

Throat scope

Botox into throat saliva gland

Les is anxious to see if this Botox round helps.  The other helped a little, but not much.  We will keep you posted!  He is also getting his BiPap machine this week and he is hoping that will help him sleep and his fatigue will be less.  We would appreciate your continued prayers.  As Les continues to deteriorate, we know that this road won't get any easier; we pray for patience, strength, peace, and the ability to find joy for each day.