Every year the Tulsa Muscular Dystrophy Association hosts an event called “Step Up to the Plate; Fight ALS”. I was honored to be on the planning committee for the event this year. We had a great turnout and raised lots of funding to benefit local families affected by ALS!
For those who would like a little background information on what this organization represents, I would love to tell you about MDA and my involvement. As most of you know, I work in the SNR clinic in Tulsa most days, but once a month I serve at the monthly ALS Care Center hosted by the Muscular Dystrophy Association-Tulsa Chapter. The first Wednesday of every month, two neurologists, myself, a social worker, a physical therapist, respiratory therapists, etc. all come together as a multidisciplinary team to serve local patients with ALS. These patients have grown very near and dear to me since the MDA’s Tulsa Care Center opened almost 2 years ago. Seeing the struggles and hardships these patients and their families face on a daily basis truly changes your outlook on life.
One of my roles as the speech pathologist on the team is to assist patients in voice banking and recording their voice early on (since most will eventually lose their ability to speak) and to order and train them on alternative communication devices. I also complete swallow studies to help them find individualized strategies to safely eat orally as long as possible since most eventually are unable to swallow and will need a feeding tube for nutrition.
With an average lifespan of 2-5 years after diagnosis, ALS is a disease that robs so much from these patients including their ability to speak, eat, walk, etc. In addition to the physical and emotional distress this quick decline places on these individuals and their families, for many it also poses a huge financial burden. Electric wheelchairs and communication devices that can be controlled by eye gaze (often the last remaining motor movement in their entire body) are incredibly expensive! Everything adds up, from making their home wheelchair accessible to buying a van, etc., and these families definitely don’t need any additional stress added to their last couple years together.
Since my involvement with these patients in my practice the past couple years, I’ve seen firsthand how MDA Tulsa goes above and beyond for my patients and provides such amazing resources for them. They host a monthly support group, provide an equipment loaner closet for families to borrow medical equipment, and host the monthly Care Center to name a few. The ladies at the MDA office literally field calls and texts around the clock, even on their days off, to help families locate assistance and to answer their questions. For such a small office of only 3 people, I’m always truly amazed at what an impact they’ve made in Oklahoma.
The funding raised at the “Step Up to the Plate; Fight ALS” event each year is how they are able to provide the services that they provide to my patients. If you would like more information on the services MDA provides to local families or would like to donate or volunteer your time, you can reach out to the area director Becky Prine at 918-749-7997.