Saturday, June 10, 2017


Today is such a big day.  It is my parents' 50th wedding anniversary.  It is also my daughter's dance recital and the first time she has a real dance solo (Scuttle from The Little Mermaid).  So it has been a very hectic week as she is also in a musical theater camp, so I have gone between camp and dance dress rehearsals, work and physical therapy, all as summer hits, the temperature rises, and I find myself in situations where the air conditioning doesn't seem to be working, and my whole body is numb.  And I go on.  But 7 years ago so much was different - this week would not have been possible.  My daughter is 14.  7 years is half of her life.

The big thing is that 7 years ago today I went on steroids for the last time - it was the last time I had an "attack" - when things get drastically worse all of a sudden - walking becomes impossible - energy is gone - standing may or may not happen - a lot of time is spent "connecting" with the floor.

But then I went on Ampyra which works for only about 30% of the people who try it.  And I felt my balance come back.  And my legs felt stronger.  And I began to be able to stand straighter, and walk further.  Then I got Bioness devices for my legs which help me to walk.  Then I could write again.  Other things work better as well.  I started physical therapy.  I went from only being able to walk 50 feet to walking once around the track in an hour.

Things continue to improve.  I now walk around the track in under 13 minutes.  I keep improving to this day.  I have the energy to make it through this week.  My daughter knew me for 7 years getting worse, and for 7 years improving.

I am grateful.  I am grateful someone asked me if I planned on trying Ampyra.  I am grateful for the physician who jumped through several hoops to get me on Ampyra.  I am grateful to my family and friends who have always supported me.  I am grateful to be here today, watching my daughter dance, doing what seemed impossible, and continuing to move forward, on my journey, with God there along the way, through the bad, the good, and the impossible.