Keywords: Anti-NMDA receptor encephalitis, NMDA, autoimmune, patient empowerment.
Citation: Station W. Book review: The Girl on the 6th Floor. J Participat Med. 2014 Jun 11; 6:e15.
Published: December 30, 2014.
Competing Interests: The author has declared that no competing interests exist.
As an encephalitis survivor and co-founder/president of Encephalitis Global, I search daily for new resources that focus on the topic of encephalitis. Over the past 15 years I’ve read many books on the topic of encephalitis, most written by encephalitis survivors.
The Girl on the 6th Floor: Wide Awake Through the Nightmare by Brian Nichols [1] is a book to note, as it is written from a new perspective, that of a family member. Nichols’ daughter Jenny was 26 when she had her first seizure on her way to work. She remembers nothing of the next 2 months.
During early interaction with medical professionals, it was difficult to pinpoint any particular problem. Jenny’s appearance was fine, and she would speak when spoken to. Jenny’s loved ones made a pledge that one of them would always be at Jenny’s side. Her father told the hospital staff, “That is not my daughter in there. There is something wrong.”
One of the most remarkable parts of this book is the close interaction between Jenny’s loved ones and the staff at Methodist Hospital in St. Louis Park, Minnesota. Family interacted with the medical staff on a daily basis and attended all meetings and discussions on Jenny’s care and diagnosis. It took a month to finally come to a diagnosis of Anti-N-methyl-D-aspartate receptor (anti-NMDAR) encephalitis.
A study titled “Anti-NMDA receptor encephalitis: a cause of acute psychosis and catatonia” states, “Anti-NMDAR encephalitis is a newly described form of encephalitis associated with prominent psychiatric symptoms at onset. Psychiatric manifestations include anxiety, mania, social withdrawal, and psychosis (i.e., delusions, hallucinations, disorganized behavior).[2]”
By spending time with Jenny around the clock, her family was able to aid and advise medical professionals on important issues that would only be visible through such close monitoring. Even more important, they were able to aid and assist Jenny, both physically and mentally, through this dreadful time.
In my opinion this book demonstrates participatory medicine at its finest.
References
- Nichols B. The Girl on the 6th Floor: Wide Awake Through the Nightmare. Rockford, MN: Rockford Publications. http://www.thegirlonthe6thfloor.com. Accessed October 30, 2014. ↩
- Ryan SA, Costello DJ, Cassidy EM, Brown G, Harrington HJ, Markx S. Anti-NMDA receptor encephalitis: a cause of acute psychosis and catatonia. J Psychiatr Pract. 2013 Mar;19(2):157-61. doi: 10.1097/01.pra.0000428562.86705.cd. ↩