About our Guests
Jenee Hughes worked at Google as a Site Reliability Engineer for 11 years, where she cut her teeth on the Search SRE team before moving over to Identity SRE. She's currently on a largely-analog sabbatical, dipping her toes back into the world of backyard farming and emergency resilience, while also writing two books, attending various classes, and doing SRE consulting for startups that particularly interest her. She can be found at https://www.linkedin.com/in/jeneehughes/.
Main Takeaways from this Episode
When dealing with an unknown medical situation, collect documentation of all evidence. Phones make it easy to collect photos and videos with built-in timestamps. Track additional data in spreadsheets, and don’t forget to record the date and time that things happen to your body.
Advocate for yourself. Medicine is still a developing field; doctors are still learning, and they can make mistakes. And remember that what matters is your body and your health as a whole; the fact that a test comes back saying you don’t have some specific condition doesn’t mean that something else isn’t wrong. Doctors form hypotheses, and then use procedures (e.g. blood draws) to test them. Ask the doctors for insight into the debugging process they’re going through: what’s the hypothesis, and how does the procedure test it?
Ask your loved ones for help; a support system is essential, whether you have no idea what’s going on and just need help surviving and documenting the condition, or if the condition’s now understood and you’re following a laborious plan of recovery.
The brain and the body are machines; modern science doesn’t completely understand them, but we’ve learned a whole lot about them. Learning how they work can give you back some power and control when it feels like your body is letting you down. And sharing when you go through something scary can be a service to others; it lets them know these problems are real and, in many cases, can be treated.
Functional Neurological Disorder
The Stanford Functional Neurological Disorder page has many interesting videos explaining the disorder and its treatment, and in the process, shedding a lot of light on how the brain works.
(Some of the videos do not allow direct linking, so in order to make clear which video I’m talking about, I’ll refer to its title and the length, which at least at the moment that I write this are written below each video thumbnail.)
This 53 minute video (“Stanford Health Library: Functional Neurological Disorder with Drs. Lockman and Bullock”) was the one Jenee originally watched; the 4 minute video, “Educational animation of patients and families showing how the brain works in FND and the effects of treatment,” is a more recent creation that’s boiled down to its essence, suitable for communicating not only to people who are affected, but to their family and loved ones.
The diagnosis process was still brand new at the time Jenee was being diagnosed. Based on feedback from her and others during this time, experts improved the diagnosis process and encapsulated the lessons into the 20 minute video entitled “How to deliver the diagnosis of FND and treatment options utilizing the neuroscience of FND.”
In Jenee’s words, “If the brain is the computer, FND is a software problem, not a hardware problem. Fixing FND is like fixing the software by using the buggy software.
The Epley Maneuver
The Epley Maneuver is a way of treating benign paroxysmal positional vertigo. John Epley risked his career to publish it in 1979, as described in his obituary, and it’s only become widespread in the last twenty years; Jenee speculates this may be because YouTube and other video hosting sites make it easier to demonstrate. Check out this New York Times article.
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