Before the onset of my symptoms of ALD, my life was going great guns. I loved to ride my bike, I enjoyed performing monologes poking fun at myself and my sisters, and everyone said I was an excellent student. Looking back in hindsight, those were the golden days.
Performing "A Peach, a Peach"
My first reaction when we learned I had this strange disease
was curiousity. What was going to happen to me? The 
feeling
that I could not run as well was disheartening. Some friendships at school
stayed the same; some changed. My family was a source of support which was
very important to me at this time.
Surrounded by sisters and grandparents
As the disease progressed, I got tragically worse. I felt
that I was dying piece by piece, a little more each day. I gradually lost
my vision to the point where I 
could no longer
read. Reading had been the one thing which I had assumed I would be able
to do forever. I felt devastated because reading was an important part of
my life. Books on Tape have been wonderful but they are no substitute for
the real thing.
For the past six months, a woman named Crystal has been my professional
care provider. Crystal is a gem as her name implies and has come to be very
important in my life. She 
prepares my favorite
foods including no-fat milkshakes with Lorenzo's Oil. We go on walks out
the driveway about every day. She takes me to town to do errands and get
ice cream. We do stretching and speech exercises on a regular basis.
Life with adrenoleukodystrophy has been frustrating, depressing, and often filled with anger. Life does go on, however, and I thank my stubborness (I am a Taurus) and the people around me for making it tolerable - at least some of the time.