Progression of a disease

Spring, 2004 – fell down mowing the yard.  No pain, loss of consciousness, dizziness or paralysis.  I just couldn’t get up for about 5 minutes.  It was like my body wasn’t obeying me.  About four weeks later I fell over in my garage and hit my elbow on the concrete floor.  As that hurt, figured I better see my doctor.

1st Drs. Visit – referred me to a neurologist as his testing didn’t show anything.

JWM Neurologists – examined my eyes and said they saw nystagmus.  I wore weird looking goggles that blocked out all light but they could still see my eyes.  Their cure for that was barrel rolls (look for this on this page – what they did when I would visit).  They (used two people) would turn me once; on a Friday; had soft wrap around my neck (just to remind me to keep my head still and up); stayed in a lounge chair until Sunday when I could remove wrap and do everything I normally did.  Did this about once/month but after a few visits, stopped for almost 6 months as I was sneezing a lot (allergies?).  When that stopped, continued treatments.  On last treatment, no wrap was used as other patients showed no change.  I could do all activities normally after treatment.  Said my nystagmus was gone.  I could resume any normal activity.  I proceeded to mow the lawn with the same results as before.

Referred to a heart specialist – he did treadmill and other tests.  All seemed fine.  The tilt table test was not good for me.  I don’t remember the test being more than about 15 minutes and I do remember speaking to the technician during the test discussing the weather and such.  I asked something and then my limbs felt weird.  Like I was getting an electrical shock all over.  I think I passed out.  A few seconds later I was returned to a horizontal position and immediately woke up.

Referred to a spine specialist (was something wrong with those nerves) – nothing conclusive found.

Referred back to JWM – saw various doctors and technicians (even the J, W. or M; I forget now) – one technician wanted to check my nerve endings with a probe that delivered a shock each time he touched one (or was it just me).  As I felt it strongly, I suggested they could mark me down as being ok in this area.  He wanted to do more over my protests.  I think he enjoyed my squirming.  A few days later I received a certified letter from JWM (at least that’s what the notice said).  Since we both were at work, no one was there to sign for it.  On my next visit I was told I was “discharged”.  That’s when I found out more about the letter but was not allowed to read it or find out why I was being discharged.

Referred to IU Med Center – Dr. Robert Pascuzzi – he gave me a few tests and after a few months gave me a name – MSA.  This was end of June, 2007.

POA - How It Was Decided

At the time it sure made sense to do it.  It wasn't until later that my eyes were opened.

Spring, 2004 – fell down mowing the yard.  No pain, loss of consciousness, dizziness or paralysis.  I just couldn’t get up for about 5 minutes.  It was like my body wasn’t planning on obeying me.  About four weeks later I fell over in my garage and hit my elbow on concrete floor.  As that hurt, figured I better see my doctor.

Mar, 2007 - let go from DCL as disabled.  It was that or they said they were just going to let me go.  I was just shy of my four year anniversary.

May, 2007 or May, 2008 - we were discussing feeding tubes and how neither of us would want that done so I/we decided it might be a good idea to create a POA to avoid any misconceptions.

June, 2007 - after waiting 3 years and seeing 4 other doctors, I was given the news I had MSA.  Look for MSA FAQ and that should give you a good place to start.  No known cause, not heredity, no treatment and wasn't even named until the 60's (aka Shy-Drager).

June, 2008 - I was falling down after just a few steps so decided to use the wheelchair full time.  Sometime soon after that I moved out of our bedroom and started sleeping in the lounge chair so I would be closer to the bathroom.  I also figured I didn't want to disturb her sleep just getting in/out of my chair.

Nov 2008 - we were sitting in the living room, maybe watching TV, and she said

"I'm no longer going to give into you.

I've been doing it since Beech Hollow"

Besides the thought "what does that mean?" the only thing I could think of at that moment is the movie Sleeping With The Enemy.  Since I'm sure nothing like that ever happened, I was left with that first thought.  After a moment, I asked her what that means and all she did was get up and go into our office (which later became her bedroom).  I waited about a month (I know.  Sometimes I can be too patient) and got the same answer.  I've not asked since but am hopeful that someday I'll find out the answer.

May, 1996 - We moved from Beech Hollow in Indy to Cross Creek Circle in Westfield.  She said the town had good schools and it was between where we both worked at the time - Sheridan and Castleton.