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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 the condition.

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.



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