On December 4th, 2018 ALS Advocate Sunny Erasmus joined scientists, health care professionals, and other fellow PALS as they made their way to Glasgow, Scotland for the 29th international symposium on ALS/MND. During the 5-day symposium attendees and speakers shared information on the latest research, discussed future collaborations, and had discussions about patient care services. The ALS Association was also in attendance, joining other members of the International Alliance of ALS/MND Associations to exchange information about the care and support of people with ALS/MND everywhere.
Here’s a short summary of some of the panels Sunny attended during her three days in Glasgow:
During a panel on Preserving Identity, new technology like Project Revoice, an initiative by the ALS Association meant to return voices stolen by ALS, was shared. Sunny is actually an early participant of Project Revoice. “Losing my voice is terrifying,” she says, “so I’ve made a point to participate in every voice banking opportunity that I come across.”
“The Big Debate” found session speakers exploring the controversy of “whether our current approach for diagnosing ALS/MND needs to be seriously reconsidered”. Sunny listened as presenters shared points from both sides of the debate. On one hand, ALS is a difficult disease to diagnose as there’s no one test or single procedure meant to establish a diagnoses. Patients must go through a series of diagnostic tests to rule out other diseases that could be mimicking the symptoms of ALS. On the other hand, the long process delays treatment and frustrates patients. “My personal journey to diagnosis took more than 18 months, countless doctor visits, examinations and co-pays.” Sunny wrote, “I saw many specialists from different fields of study, had gallons of blood taken for various tests, 4 EMG tests, a spinal tap, and more that I’m sure that I’m forgetting”.
Later, Sunny sat in on a discussion about “navigating the world of care” for ALS patients. Because of how complex and varied the disease is, patients end up seeing many different specialists over time- this can be especially challenging for those with limited access to care. Sunny says while she was aware that the multidisciplinary clinic approach was a relatively new innovation, she was shocked to find that it was unavailable in some areas.
She went on to sing the praises of Dr. Heitzman’s ALS Association affiliated clinic at Texas Neurology. “I attend Dr. Heitzman’s clinic 4 times a year, but I would attend every appointment if they would let me. This serves as my support group, we engage in conversations during clinic and beyond. We rely on each other for tips, tricks, encouragement, and hugs. All of the therapists there are on the same page with my decisions and progression plans, we make educated and quantitative benchmarks for intervention, and celebrate successes together every appointment”. Sunny says, “I’m a big advocate for multidisciplinary care, especially in the clinic setting. I have access to multiple clinics with different formats, and for that I am very thankful. ” She continued, “I attribute my slow progression, my understanding of my choices and options for care, and overall sanity to my team at Texas Neurology”.
This is only a small sampling of the kind of information that was shared during Sunny’s week in Glasgow. Each year the Symposium covers a wide range of research, resources and discussion and we know it was an invaluable experience for all who attended.
Sunny, we thank you for your continued advocacy both local, and now, abroad. ALS is not an easy disease to navigate but everyday we’re making strides to find a cure and improve patient care for those already living with ALS.