By Terri Corcoran
“One foot, other foot,/One foot, other foot,/Now
you can go/Wherever you want…” Those lyrics from the Rodgers and
Hammerstein musical Allegro often come into my head as I am helping
my husband walk. My husband Vince has a genetic disorder called
Fragile X-Associated Tremor Ataxia Syndrome (FXTAS) which, over the
past five years, has been robbing him of his ability to walk and
think.
FXTAS was identified by researchers only a few
years ago (we spent five years and visited five neurologists before
we got the diagnosis). Appearing in some grandfathers of children
with Fragile-X mental retardation, FXTAS clogs up the brain with a
nasty protein that interferes with coordination and thought
processes. Vince’s legs work, but his brain can’t tell them what to
do; he can walk a little if I hold onto him and give him verbal
prompts like “Pick up your feet….one foot, other foot.”
I became Vince’s full-time caregiver in February
2004 because he was falling too much to be left alone. At that
time, we’d only been married for five years (Vince’s first symptoms
appeared a month after our wedding!) – it was a second marriage for
us both. So as I adjusted to a new marriage, I suddenly had my
husband’s illness thrust on me, as well as all of his very
complicated business affairs and his very neglected house which
needed practically everything repaired or redone. Vince’s FXTAS has
affected his brain in that he cannot handle finances or anything
else that requires planning or execution, i.e., all of life’s
chores. He is also very difficult to communicate with – logic and
the ability to express complete thoughts are no longer present in
this man who is a Ph.D. laser scientist.
Needless to say, I have struggled mightily in
the past year and will continue to do so, as there is no cure for
FXTAS and very little is known about it at this point. Every day is
a challenge as I get Vince from place to place around the house by a
combination of walker, stair lift, and holding onto him with a gait
belt as I tell him how to balance his body and move his feet. I am
also the physical therapist – we had some sessions with a therapist
who taught me how to take Vince through simple exercises that will
hopefully keep some strength in his muscles. It’s important to
keep him moving as much as possible, which is not much at all – we
usually don’t even get around to all his exercises every day because
he tires so easily.
One aspect of FXTAS is that Vince often gets
completely “stuck” – he won’t be able to move or to respond to my
verbal coaching. So I wait…and wait…and wait…and pray…and pray…and
pray that he will start moving again. He eventually does get moving
again, but we spend a considerable amount of time every day just
being stuck. Sometimes he gets “stuck” sitting in the shower, not
knowing what to do first; sometimes he gets “stuck” trying to get up
from a chair; sometimes he gets “stuck” in the middle of walking –
at those times I need to be able to hold him up until he gets
unstuck. I try to never be far from something I can sit him down on
if he stops moving and my strength to hold him up gives out.
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