front row, far right: James
remaining: Jon, Jacob w/ Siri behind, Emily, Bonnie
- View this Sidewiki entry in context, next to the webpage.
- Get started with Google Sidewiki to read and contribute helpful information on any webpage.
I have a progressive genetic disorder in which many of the cells of the body are "made wrong", resulting in eventual "breakdown" of these tissues; thus I am now disabled, must use a power wheelchair, have multiple current or eventual organ failure, and suffer excruciating pain throughout my body which began as more subtle pain in childhood. I am now "terminal". Gizmo is the small dog who is the light of my life. We are a superb team in many ways.
back row, starting 2nd from left: Karen, Dave, Jonah, Leah
front row, far right: James
remaining: Jon, Jacob w/ Siri behind, Emily, Bonnie
A bit of background:
In retrospect, signs of the genetic disorder which has disabled me could be seen in my limpness at birth and the inguinal hernia requiring surgery at the age of 6 months. I was "double-jointed" and extremely uncoordinated throughout childhood, tall and gangly. I seemed to be constantly spraining and dislocating joints. Even then I was in pain, which was attributed to hypochondria, attention-seeking, and eventually "growing pains".
Several surgeries showed that incisions healed poorly. As my unsuspected disorder progressed, the pain worsened, particularly in my joints, leading me to consult a rheumatologist. I struck gold! He was the state's leading (and probably only) "expert" in my disorder (i.e. he had probably seen half a dozen or so patients with it). At last, at approximately 30 years old, I had a diagnosis that accounted for so many of my symptoms.
(see Profile) I had followed advanced education with a career as a medical research scientist in my chosen field. I loved my profession, and the fact that I had done some significant work in my field that could ultimately help many people helped cushion the blow slightly when increasing debility forced me to retire before the age of 40.
(Fast Forward) I am now 51 years old and live in an Assisted Living Facility. I used a manual wheelchair for almost 10 years, but out of necessity several years ago switched to a Power Wheelchair (at this point, I can't even budge a manual one). The constant pain was increasing markedly. My quality of life had dropped dramatically. Around that time my Case Manager decided I needed a companion, and recommended that I get a small dog. This is where our story begins.