July 19, 2007

The Banana Lady: and other stories of curious behaviour and speech

Genre: Health, Mind & Body
Author:Andrew Kertesz

"To live with someone with FTD is a test of personal strength and character.... Spouses of FTD/Pick patients are often treated for clinical depression, and one I heard about committed suicide.”-- Andrew Kertesz

My dad has Picks disease. He was diagnosed about 7 years ago, but he’s had it for even longer. His personality started to slowly change. He would sing and dance at inappropriate times in inappropriate places. He would speak to people only in Ukrainian, even after they told him that they didn’t understand him. And it was difficult to have a conversation with him because he generally came back to one refrain (Ukraine) no matter what the actual topic of conversation was. And to top it all off, no one but my mom, my sister, and myself seemed to realize that anything was wrong. Everyone else apparently just assumed that he'd always had an eccentric personality.

Even after we'd finally gotten a diagnosis, people would still shrug their shoulders and say, "He looks fine to me," as if what they could see with their eyes was sufficient to deny what both an MRI and a doctor had confirmed. So when he would do something that was embarrassing (like insisting on greeting every Asian person with a Japanese greeting), or rude (like saying loudly that a woman nearby was fat) or unsettling (like looking through parking lots for coins--something many people took as an excuse to glance through cars looking for something to steal) we could explain that he had Pick’s disease, but because he didn’t look sick and because most people have no clue what Pick's disease is, they still got upset, uncomfortable, or called the police on him. Though my father didn’t mind--one of the symptoms of PIck’s disease is an apathetic response--it was withering to my mom, who day in and day out had to excuse his behavior and whisk him away home.

So it was utterly refreshing to read The Banana Lady: and other stories of curious behavior and speech, by Andrew Kertesz. Here was someone who deeply understood what we were going through. And he tells stories of many others who have stood in our place, who have walked the lonely and misunderstood path that we walk--who “get it.” It’s such a relief to know that you're not alone. And if The Banana Lady book were to accomplish nothing else, this would be enough, bringing some comfort to the caregivers who often suffer alone in silence and validating what we have been trying to explain to friends and family since the time the disease first started to take over.

But Kertesz goes beyond just the story telling. Along with giving depressing, scary, and sometimes even amusing portrayals of patients he has worked with, he also describes distinguishing features of the disease, variations of it (and how they’re related to each other), clinical features, and distinctives that help to distinguish Pick complex diagnoses from others such as bipolar disease, depression, Alzheimer's, obsessive-compulsive disorder, and several others with which Pick's could be confused. At times the descriptions and delineations become a bit clinical (They are obviously included in the book to help those in the medical profession better be able to recognize this disease.), but these sections are short and surrounded by stories and descriptions that are very accessible to the average reader.

Andrew Kertesz uses 19 case studies to describe the variations within a disease that he prefers to refer to as Pick Complex. (A list of the names attributed to various forms of this disease are given at the end of this review. One of the reasons that this disease is so little known, Kertesz suggests, is that rather than titling it with one umbrella term, doctors and researchers have given it many names to describe specific facets of the disease--often doing so without even realizing that one facet is related to another.) Though many of the symptoms described in the case studies overlap with those highlighted in other chapters, each chapter is intended to specifically highlight one characterization of the disease, how it might be manifested, and how it will differ from other diseases that have a few similar symptoms. Symptoms that are highlighted include: food fads (craving sweets and bananas, for example), gluttony (eating whatever is in front of them just because it’s there... even if it’s on a nearby stranger’s plate), compulsive behaviors, aphasia (loss of language), semantic memory loss (forgetting what a familiar word means), roaming and restlessness, having an “alien hand”, supranuclear palsy (motor difficulties), hypersexuality, senile squalor (failing to bathe, change clothes, wash dishes), social problems (like being in trouble with the law), inappropriate jocularity, punning and singing, constantly repeating words or phrases, stereotypic routines, inability to organize or finish tasks, lack of concern and insight, childishness, and change in personality.

This book also covers the history of the disease (first described in 1892 in a paper by Arnold Pick), its biology (Pick bodies, spongiform change in brain tissue, etc.), genetic counseling (Kertesz believes that "FTD/Pick's disease is more often dominantly inherited than AD [Alzheimer's Disease]."), and prevalence of the disease (which he believes is far higher than most estimates state). The author also addresses treatment options (There really isn't anything you can do but treat the symptoms.) and the directions that research is currently taking. And he gives 25 tips for caregivers to help them navigate the hellaciousness that Pick's will force upon them. (See the quote I included at the top if you have any doubt about the ridiculous amount of stress this disease can cause caregivers.)

If you have a friend or family member who has been diagnosed with Pick's disease (or any of the diseases listed at the bottom of this review), or if they have any of the symptoms listed above and you suspect Pick's, I highly recommend that you read this book. I also recommend this book to medical professionals, not just those who work in the field of geriatrics since Pick's disease can strike those in their 20's and 30's, but anyone who works with adults on a regular basis. Diagnosing the disease early may not make a difference to the patient (since there is no Aricept or similar drug that helps forestall the disease), but it can make all the difference in the world to the caregivers who can start to take financial and legal steps that will help them to prepare for what is to come.

You can find out more about this book on the publisher's website. It is also available for purchase through Amazon, Barnes & Noble, Booksamillion.com and other retailers.

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Pick Complex
Though there is some argument over whether some of these diseases should be grouped with Picks, the author posits that "Pick complex" should cover them all (due to similarities in both symptoms and brain studies done upon autopsy).

Frontotemporal dementia (FTD)
Frontotemporal Degeneration (FTD)
Frontotemporal obar Degeneration (FTLD)
Pick's Disease (PiD)
Pick Complex (FTD/Pick)
Primary progressive aphasia (PPA)
Semantic dementia (SD)
Corticobasal Degeneration Syndrome (CBDS)
Corticobasal Degeneration (CBD)
Progressive Supranuclear Palsy (PSP)
FTD with Motor Neuron Disease (FTD/MND)
FTD-Motor Neuron Disease Inclusion type (FTD-MND)
Dementia Lacking Distinctive Histology
Argyrophillic Grain Disease
ALS-Parkinsonism-Dementia complex
"Lytico-Bodig" of Guam
Mesial Temporal Sclerosis
Neuronal Intermediate Neurofilament Disease (NIFID)
Progressive Subcortical Gliosis
Tangle only Dementia