Mayo Clinic Visit

June 17th, 2010

We are back from a week in Scottsdale Arizona and our visit with Dr. Bosch at the Mayo Clinic.  We had three days of appointments and came away wondering if we had learned anything new at all.  Dr. Bosch, a well respected neurologist in the ALS field,  appeared very 'clinical' - not at all reflecting the 'warm-at home' feeling that the Mayo Clinic is noted for.  After another EMG to test Jim's muscle responses, we found that  his muscles had digressed quite a bit since last February, reinforcing the ALS diagnosis.  On our final visit and consultation with the doctor, we went away feeling that, though he still seemed quite removed from us personally, he was very knowledgeable and the information we received from him, especially in regards to doing any kind of 'stem cell therapy' at this time, was probably worth the trip.  Of the places we had already researched concerning stem cell therapy, none were on the clinic's 'list to avoid' (which we were given), and so we'll continue to have a guarded look at various methods and facilities doing this treatment.
We were also given several helpful websites to keep us informed on what is being done as far as ALS test studies in the U.S. and will continue to keep current on those, so that if an opportunity to participate presents itself, we'll be ready and willing. 
All in all,  the trip was taxing emotionally for both of us and physically hard on Jim.  Getting around is getting slow and laborious, although we're are not quite ready to go to a wheelchair.  Jim's pulmonary test, which showed his lung capacity was quite normal both standing and laying, was considered very GOOD NEWS to us and to the doctor, as ALS can affect breathing early on.  We are hoping to avoid this problem all together; another something 'specific' that you could all pray for.
I had forgotten how in blogging, you sort of have to go backwards and read forward.  Sorry about that!  We continue to look to the wonderful and promising blessings Jim has had that he will respond well to 'some kind of' therapy and that he yet has much to do.  Honestly - this is HARD HARD HARD beyond words, but we truly feel we are not alone.  Both of our extended families, all of our children and many many friends have been wonderful.  We know others beyond the veil are also aware of our situation and are close.  We know and trust the Lord.  We are also very aware that there is a lot of suffering out there; many whose prayers are going to heaven along with ours.  How it all works - we don't know, but it must be quite a 'wonder'!  We are relying on our faith that it will all someday make sense and be 'wonder' ful!
In the 'Hotel Marigold' movie we saw this week, I picked up a new 'catch phrase' for our plight.  "Everything will be all right in the end and if it isn't all right - well, it isn't the end!

Love to all!