ALS Clinic & FTD appointment

Today was probably the strangest ALS Clinic we have ever had.

First, got a call yesterday that they are looking for a new occupational therapist - so no OT today.  The good part of that is they scheduled us to come in an hour later since we had the FTD neurologist appointment added on at the end of the day.  Even with stopping to get gas and Subway for later we were over 30 minutes early.  I came armed with the Jim's new state id, insurance and medicare cards and Cleveland Clinic's co-pay policy printed out (an argument I seem to get into every time since once the customer service rep sees "employee insurance" they demand co-pay even though medicare covers it).  So of course they did not ask for any of it or give me a problem with the copay.

Jim was weighed in - and good news is he put on about 5-6 pounds!  (Don't I wish gaining weight was good news) - so of course I got grilled why he gained weight by the new nutritionist we have never seen before.

They were unable to do pulmonary function tests because the nurse had accidentally threw away a non-disposable part of the machine yesterday.  So no news there.

We had a fill-in physical therapist (who we have seen once before) though our usual PT was unofficially there (he had taken a vacation day.)  She didn't do any strength or flexibility measurements but said he looked good.

We saw the ALS neurologist, though not the main one.  She increased Jim's Zanaflex (anti-spasm med) to see if we can decrease some of the rigidness in his body, especially arms.  She ordered some routine blood work.  Overall she said he looked good too. 

We did not see the speech pathologist either.

We settled in for a 2 1/2 hour wait for the FTD appointment - but luckily were taken early.  We found that the original neurologist's physician assistant (the dr who originally diagnosed Jim with ALS & FTD) is now the FTD neuro's assistant which is good. 

The FTD neuro said Jim seemed good.  He scored about the same on his MME (mini mental exam).  Dr. Appleby had printed an alternate copy of the test because he thought Jim was memorizing some of the questions.  The dr added another DNA test (3rd total) we did not get the results of the last one - simply because I haven't taken Jim to have it done.  I am working on "gathering" the year's blood work together so Jim can just be stuck once for all these tests.  If there is one thing Jim hates is needles - he gets really anxious.  So I am waiting to do the optional tests until we have the orders for the routine ones.

The FTD dr said that all of our "special summer days" (our version of a spread out vacation) is really good for Jim and keeping his mood up.  That is half the battle.  So far we have done many days in the pool, Cedar Point, 2 Indians games, a drive-in movie, Jim's family reunion and tonight the Cleveland Brown's family fun night.

Two more weeks until school starts - Summer has been too short!