A poetry book about dealing with PSP

[ElMarsam]

I would like to share information about this book, as so little is written about this horrible disease. The author's husband was diagnosed with PSP-Parkinsonism two years ago, and as his care giver, she began to write poetry as a way to process and come to terms with this disease. Her poetry collection was eventually published and is available on Amazon. Her words resonate and comfort.

[Gymsack]

fanstory.com/displaystory.j...

leads to the book

"This is a good day," the neurologist says,

in his practiced, clinical voice

mouthing a wilderness of words,

their meanings mysterious, menacing...

He gestures towards the MRI film

a chiaroscuro map that I am not trained to read.

He tells us that this is atypical Parkinson's.

I have to claw my way to the actual diagnosis

as if my arriving at the name of the disease

is what I have been tasked to do.

To understand.

To accept.

PSP

Progressive Supranuclear Palsy

Rivulets of tears stream down my cheeks.

I cannot see my husband's face

from where I am standing

But I can "see" the expressionless stare

as he sits, holding his recently operated shoulder still

as his "it's just essential tremors"

tremor...

as his "resting tremors" take no rest

"Nothing has changed today, just because you have a diagnosis,"

"This is a good day," the neurologist repeats.

I am losing my footing.

My breath is shallow and fast.

The man in the white coat mentions

"the hummingbird sign"

as he points to the MRI film,

that damn image again

a road map to an unknown destination,

that does not indicate the distance,

nor offer any directions,

that hints at rough terrain ahead,

but not the time line,

nor type of transport needed,

for a trek we have not planned,

that begins now

on this good day...

"Look it up on the Internet, google it," he instructs us

as he orders a prescription for Carbidopa/Levodopa.

And then he is gone.

What is it that frightens me so?

Could it be the knowing

that someday I will look back on this moment

and know

that this was indeed a good day.

[Bristolgirl in reply to Gymsack]

that’s a good poem gymsack!

[Gymsack in reply to Bristolgirl]

sorry I did not write it

it is a sample from the book

i will buy the book

[Adoey]

Hello ElMarsam, I am definitely interested in this book, Hummingbird Poetry. I have been diagnosed with PSP with Parkinsonism. I am my own Caregiver since I live alone and would love to read poetry of comfort regarding this illness. Thank you so much...

[ElMarsam in reply to Adoey]

Not just the poetry but information about PSP was useful. Give copies to family or friends who need to understand. Best wishes to you.

[carehope]

Hi ElMarsam, Thank you for letting us know about the book of poetry !

[ElMarsam in reply to carehope]

You are welcome. We are all in this together.

[Bergenser]

My copy arrived this evening - beautiful and bittersweet poetry, very relatable. Amazon suggested I might also like a Crystal ball. 🌻

[Bergenser in reply to Bergenser]

Crystal ball

Hummingbird

[ElMarsam in reply to Bergenser]

Pretty crystal ball. Don't you wish there was one for answers to this disease?

[timbowPSP]

Hello E I Marsam, The poetry book Hummingbird ....... how do I get a copy? Is it on Amazon, private printing, or ? I am 82, diag PSP 6 yrs, prob Parkinson, and still sopping up useful info! Any help useful. Thanks. TimbowPSP - in Malvern

[Zerachiel in reply to timbowPSP]

It is on Amazon

Hummingbird: Poetry on PSP & Parkinson's amzn.eu/d/ehcBSoo