Asheville – Much to the consternation of sufferers, the state of the art in treating neurodegenerative disorders typically only softens the blow of symptoms and does so with a lot of trial and error and side effects—even if the disease is properly diagnosed. These diseases appear to take a cafeteria approach to impairment. Parkinson’s disease, for example, is diagnosed with any number of symptoms from an established collection, and often additional symptoms characteristic of other neural disorders.
While geneticists are working to discover DNA sequences that predispose patients to various forms of neurological degeneration, doctors currently have no way of predicting how many of which nerves or neurotransmitters will be the weaker links and to what degree in each patient. Yet, advancing age and catastrophic triggers still hotly debated likely render everybody vulnerable.
Diagnoses based on whether or not the patient exhibits a lot of symptoms of one disease and if they respond appropriately to drugs used to treat that disease aren’t failsafe. It has often been said that the only way to really know if somebody suffers from Parkinson’s or multiple system atrophy is to perform the autopsy.
This has led medical philosopher Alberto Espay, MD, to, until root causes are better established, recommend just treating the symptoms as they come along instead of trying to pigeonhole everybody. “By looking at the data sober,” he wrote, “we ourselves couldn’t precisely tell where Parkinson ends and Alzheimer begins.”
Dysautonomias are symptoms of a lot of neurodegenerative disorders. As it sounds, dysautonomias represent any abnormality in the function of the autonomic nervous system. Problems regulating blood pressure, swallowing, gastrointestinal function, or even pupil dilation are all examples of dysautonomias.
It has been argued that it is more cost-effective to support clinicians in determining probable causes and applying best practices to alleviate pain and suffering ASAP than to throw money at research. Given the vast number of unknowns in the field of dysautonomia, this could be one area where the long game pays off quickly.
Enter Panda Express. Maybe you never stopped in because fresh vegetables in quality Asian sauce just doesn’t seem to go with the McDonald’s model.
Felix Ortiz, general manager of the Panda Express at 54 Tunnel Road, disagrees. He likes the Bourbon chicken from the current promotional menu, which he says “keeps it spicy.” His all-time go-tos, however, are the honey walnut shrimp and sesame chicken dish. His restaurant receives great ratings, and he agrees that the food is “high value.”
Talking to Ortiz, it became very clear that fundraising was a large part of the Panda Express business model. He said about 75% of his store’s fundraising initiatives are for local groups. They raise money for colleges and churches. They’ve done a lot of work with Asheville High School. “Teams,” he said, “we work a lot with teams.”
The central office had just informed him about the fundraiser for Dysautonomia International. The nonprofit has declared October 18 Dysautonomia Awareness Day, and close to 100 organizations in the United States and Canada have agreed to participate. At last glance, both Panda Expresses in Asheville were the only organizations participating locally.
All are invited to help. All they have to do is place an online order at PandaExpress.com on October 18 and type 925183 in the fundraiser code box during online checkout, and 28% of pre-tax proceeds will be donated to Dysautonomia International. Funds raised will go toward research and education for those who suffer neurodegeneration, as well as medical practitioners of all levels. Dysautonomia International properly leaves diagnosis and prescription between patients and their doctors.
So sparse is research into the disease, Dysautonomia International was founded by Lauren Stiles, who suffers from dysautonomia herself. She wanted to bring together others who have endured less than optimal treatment for years because even professionals were confused by the collection of symptoms they were seeing.
POTS (postural tachycardia syndrome) and some migraines and gastrointestinal disorders are examples of diseases with constellations of dysautonomias very similar to those of other diseases. Problems multiply when patients are prescribed treatments for the wrong disease, and they suffer side effects from the medication that further confound attempts to correctly diagnose them.
Incidentally, PANDAS (pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections), at least according to physicians with Dysautonomia International, is not a dysautonomia, although it shares many symptoms. Rather, it is a children’s disease marked by sudden onset of motor and behavioral symptoms linked to streptococcus inflammation, and it is treatable if caught early.