I enjoy life in Kingston after a somewhat nomadic life as an
"armed forces brat". Even after there was no need to follow
a posting I continued to travel and find my own way and place in the
world. When I was 40 and working in Vancouver at a job I loved, I was
diagnosed with spinal bulbar muscular atrophy - A.K.A. Kennedy's
Disease. It arrived so silently I thought I was just a bit out of
shape, when I kept falling over in my Tai Chi class (cue leg
weakness). I soon discovered I have a genetic, progressive
neuromuscular disease. Kennedy's Disease is an adult-onset disease
with symptoms usually appearing between the ages of 30 and 50, so I
was right on schedule. Over the years I have moved from limping, to a
cane, to a walker, to a motorized wheelchair as my muscles weaken. As
the diagnosing doctor assured me it won’t kill me, but continues to
present life challenges every morning as my muscles weaken.
Kennedy's Disease is a rare disease with no identified treatment or
cure. It affects all voluntary muscles in my body and causing muscle
weakness and wasting (atrophy) throughout my body - most noticeable in
the legs and arms, it causes speech and swallowing difficulties, major
muscle cramps, hand tremors, numbness, twitching of small muscles, and
overall wasting and shrinkage of muscles.
However, I remain youthful in spirit, optimistic, relentless and
living positively, for the most part. Still working and playing
because thankfully that back in the day I was attracted to work which
continues to inspire me and to which I remain committed. I work in the
counselling and health care field, seeking opportunities to support
and advocate for people living with challenges life has tossed their
way often related to drug use, mental illness and disability.
I have been approved to receive a service dog to support my mobility
needs. Just don’t know who yet. My dog will help with stability and
balance when I stand in order to prevent a fall. The dog can also
assist me to straighten up when off balance in chair (danger of
falling forward out of my chair). The dog can also help when I drop
things or can’t pick up things, door opening/closing, tugging off
clothing, bringing things from around the house or helping with daily
house tasks. I’m very excited!
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