To many of you reading this, my mother's experience with
upper limb spasticity will be sadly familiar.
I had always known my mother to be a busy bee, full of life
and a force of nature – that's who she was. Even in her later years, my mother
kept very active – whether it was her regular card games with friends,
organizing and participating in events at her synagogue or just even driving
around town, doing her daily errands, she was always on the move.
However, things pretty much ground to a halt once she began
to experience upper limb spasticity after she had a stroke. Her arm became
tight, involuntarily stuck close to her body, which severely limited her
ability to get around. Soon her upper limb spasticity became so problematic
that my sister and I, as well as her other caregivers, had to help her.
My mother struggled with upper limb spasticity for 10 long
years before she passed. Unfortunately, there was so much less known about
upper limb spasticity back then. Today, not only do we have a better
understanding of upper limb spasticity, we also know more about how to manage
Sadly, there continues to be low awareness and
under-diagnosis of the condition. The problem is that upper limb spasticity can
come on months, and sometimes even years after the original injury – sometimes
after patients are out of the hospital and are no longer seeing specialists,
like neurologists or physiatrists, who see the condition on a regular basis and
are specifically trained to manage and treat it.
That's why I chose to become an Ambassador of the “Open Arms:
Raising Awareness of Upper Limb Spasticity” educational campaign and have
joined forces with an incredible team of national patient advocacy groups,
including National Stroke Association. Seeing what my mother went through, I
feel I owe it to others with the condition to do what I can to help.
One of the first, and most important, steps to take is to
talk to a doctor right away. You may then be referred to a doctor specialized
in this condition, like a neurologist or physiatrist, who can evaluate your
symptoms and develop the appropriate treatment plan.