By Kyle Pinion, MSAA’s Director of Advocacy and Public Policy and Southeast Regional Director
Have you ever woken up one day and found that your legs have painfully, and involuntarily, tightened? Or perhaps you were sitting in your favorite chair one afternoon while watching the football game and in the middle of a great play realized that your arm muscles clenched in a way that was incredibly uncomfortable. Those who are living with the progressive forms of multiple sclerosis are likely to understand this symptom all too well: spasticity is a tightness of the muscles, typically occurring in the legs, groin, and buttocks, though not exclusive to just these regions. While treatable in ways that can potentially reduce its effects, this symptom of the disease can be very debilitating and contribute to disability.
What you may not be aware of is that those living with MS are not alone in experiencing this troubling manifestation of their disease state. Many other condition-based populations see the effects of spasticity first-hand, such as those who have suffered a stroke, people living with cerebral palsy, and even those who have dealt with traumatic brain or spinal cord injuries. As such, advocacy organizations that represent each of these conditions recognize that greater amounts of information and resources are needed to help people living with spasticity grasp a better understanding of its effects and how to best seek treatment. To that end, the Multiple Sclerosis Association of America, United Spinal Association, United Cerebral Palsy, National Stroke Association, and the Brain Injury Association came together in June and initiated the planning process for what would turn into the Spasticity Alliance.
As MSAA’s representative for our regular Alliance meetings, it’s been fascinating to learn about the larger scope of spasticity’s effect on other disease states beyond our own organization’s purview. I’m so thankful to be able to share not only resources that have proven to be mutually beneficial, but also stories of people who experience this troubling symptom on a day-to-day basis.
When the Spasticity Alliance website launched in July, the outpouring of support from both the patient and professional communities was utterly overwhelming, as many deeply appreciated this pooling of efforts by advocacy organizations to provide resources and educational material for those living with this challenging and painful manifestation of these individual conditions – a manifestation that is all too little discussed. As we close out 2016, we’re looking forward to the further growth of the Alliance website, with very exciting plans on the horizon to make it an even more engaging and informative experience for our clients when they visit.
In the meantime, if you or someone you know has experienced spasticity, please visit the Alliance’s site at spasticityalliance.org. If you have any further questions regarding issues related to this symptom, please feel free to reach out to our Client Services department at (800) 532-7667, ext. 154 or via email at MSquestions@mymsaa.org.
Additionally, if anyone living with MS, or their family members or friends, would like to share their story for the Alliance’s site, please do not hesitate to reach out to MSAA and we’d be happy to discuss this with you further. Your stories really can make a difference through encouragement, fellowship, and education.