the jazzy notes
on the rock
The end of April, Parkinson’s Awareness month, is not the end of the effort required to increase Parkinson’s awareness. The work to develop ways to make life easier for those living with the disease, as well as to find a cure, continues year-round.
Parkinson’s disease (PD) is an immensely complex and multifaceted illness affecting millions of people around the world. Characterized by “progressive dopaminergic neuronal dysfunction and loss,” it is expressed in motor, cognitive, mood, and behavioral symptoms. Alleviating symptoms, and fighting the disease depends on improving our, at present, incomplete understanding of it: as sufferers, as activists, as researchers.
In my reading of blogs, articles, and social-media posts about PD written by people living with it, and others, I come across presentations that seem to fall into two broad categories: On one end of the spectrum are accounts wishing to convey what the disease is “really like;” these writings are often of the pain, emotional and psychological impact the physical deterioration has on those suffering from it. On the other end, whatever the manifestations of the disease are, the emphasis is on ways the writers have found to deal with their symptoms and even slow the progression. There are, of course, presentations that, to some extent, balance these two extremes, but they are only a few. Both strands are discernible in the contributions featured this April.
So what is PD like? One moment the person with PD looks like the acute sufferer according to the former category; the next, like the exercising enthusiast keeping the disease at bay. There is clearly a disease that is highly variable, multi-faceted and in urgent need of attention. And yet, if you search for depictions of PD, you will most often encounter an infographic like this
Well, I look nothing like it!
Norwegian video journalist Anders M. Leines used still images to portray younger, “early-onset” Parkinson’s patients in a series of portraits at his exhibition “This is Parkinson’s.”
In an interview by Geoffrey Chang, a post published in 2015 in Parkinson’s Life, the online lifestyle magazine for the international Parkinson’s community by @euparkinsons, he says
The idea is to give the image of Parkinson’s disease a ‘total makeover’. There is huge potential for better and more powerful storytelling within the Parkinson’s community. In medical textbooks, as well as in the media, people with Parkinson’s (PwPs) are traditionally depicted as tiptoeing, shaking and stooping seniors with whispering voices and a staring glare, imparting the impression of an apathetic or asocial person who lacks empathy and is uninterested in taking part in normal social interplay. This image is of no help to the patient as it fosters prejudice.
Journalist Teresa Borque when diagnosed with PD at an early age, underwent a huge identity crisis. In her post on Parkinson’s Life, she says
Being a woman is a daily struggle in this society. At work, we struggle to be considered as good as any man there; we struggle in relationships to be respected as a whole person; we struggle during motherhood not to be reduced to the role of just a mother. But with Parkinson’s disease diagnosis, the fight increases by 100.
While we all base our self-esteem on the other people’s recognition of ourselves, she points out – women have to learn to be their own highest priority in life. “Parkinson’s disease feels like an ally of sexism,” she writes, emphasising why it’s crucial for women with PD to learn to prioritize their own wellbeing.
Then there are depictions of PD outside the two poles. So negative depictions, or silences, that are painful to read; many of the writers drove themselves to suicide. Or, so positive, so glowing with challenges, achievements and enjoyment of every minute of the day, that upon reading them, a healthy person might wish they had Parkinson’s. I appreciate the motivational power of such accounts and often read them to inspire myself to do more.
We need to keep talking. We need to keep listening. We need to keep producing the pieces that will one day complete the puzzle that is Parkinson’s.
Interesting connection between haiku and abstract painting!
In this short film, painter Maria Pierides describes how her current “Lipstick Project” came about and makes the connection between haiku and her abstract paintings! The film was created for the VAA International Online Spring Exhibition, the Curator Awards Presentation.
The exhibition site and Curators Awards can be found here
April 11, 2021 is World Parkinson’s Day. Check out live events and Parkinson’s Community videos in honor of the day on YouTube here
Interested in finding out about Parkinson’s Disease? The Michael J. Fox Foundation describes it as follows:
Parkinson’s disease (PD) occurs when brain cells that make dopamine, a chemical that coordinates movement, stop working or die. Because PD can cause tremor, slowness, stiffness, and walking and balance problems, it is called a “movement disorder.” But constipation, depression, memory problems and other non-movement symptoms also can be part of Parkinson’s. PD is a lifelong and progressive disease, which means that symptoms slowly worsen over time.
The Michael J. Fox Foundation has a wealth of information for those wishing to understand the disease, as well as the newly diagnosed.
Another good place to start is the Davis Phinney Foundation which offers a plethora of useful information. The site also features performance poetry by Wayne Gilbert who, using metaphor, describes his experience of living with this disease.
Did you know that a number of people with Parkinson’s find it helpful to personify the disease, to see it as an enemy to fight against? From Journeys with Parkinson’s, the personal blog of Frank C. Church, in the first three out of Ten Things to Keep You Living and Not Just Existing With Parkinson’s, the disease is presented as an opponent of the person with PD:
What makes you happy? Think about it; think deeply about what do you do every day that makes you happy. Your Parkinson’s will not like you being happy.
Stay busy; be active every day for many hours during the day. Do not just sit. Your Parkinson’s would prefer to have you sedentary doing as little as possible.
Make sure you get plenty of sleep and the best quality kind of sleep. You know you used to get it before you had Parkinson’s. Your Parkinson’s would prefer to do whatever it can to keep you from sleeping because you being tired and listless gives an advantage to Parkinson’s.
Finally, here is a video of a Belgian septuagenarian with Parkinson’s who took up boxing to alleviate her symptoms:
Highlighting articles, blog posts, news, poems, films about living with Parkinson’s in honor of Parkinson’s Awareness Month and beyond.
April is Parkinson’s Disease Awareness Month, set aside each year for drawing attention to this little understood and still under-researched neurodegenerative disease that affects around 10 million people globally (with numbers growing rapidly). At the center of this observance is World Parkinson’s Day April 11. Patients, families, care workers, support groups use the month, and the day, to heighten awareness of the disease as well as inform of the resources that are needed / available to support those afflicted by it.
April is also National Poetry month in the United States, with April 17 set to celebrate international Haiku Poetry Day. Poets, publishers, teachers of poetry, librarians, poetry lovers come forward to inform about, promote and celebrate poetry the whole month. The Haiku Foundation honors International Haiku Poetry Day (IHPD) with HaikuLife, the yearly Film Festival, and EarthRise Rolling Haiku Collaboration, a poem written by haikuists on the day, from sunrise to sundown around the world.
Since both Poetry and Parkinson’s are of particular relevance to me, I will be posting links to interesting articles, information, and Parkinson’s poetry in this blog.
Here is my favorite poem about Parkinson’s (the first one of four) by Robin Morgan:
A post by Minter Krotzer on her husband Hal Sirowitz’s need to keep the disease secret as long as possible, illustrates a common problem faced by people with Parkinson’s known as staying in the Parkinson’s closet! In her post The hardest Secret, she observes, “It’s interesting to me that people aren’t in the closet about many things anymore but they are about disease.”
And here you will find Michael J. Fox‘s story, one of the most well-known figures in the Parkinson’s world, diagnosed in 1991:
A detailed and brave description of personal experience of the disease and the healing practice of Haiku, titled Haiku and Parkinson’s Disease, by Tim Roberts, can be found in the New Zealand Poetry Society website
I hope that my posts will make a small contribution to addressing the heart-breaking dilemma those afflicted with PD find themselves in: on the one hand, the stigma associated with this disease, which creates and reinforces the need to stay in the closet and so deprive those living with it of the support there is; and, on the other, the paucity of information about the disease, which leads to and feeds misunderstanding and stigmatization.
If you are wondering about the title of this post: A red tulip is the symbol chosen for Parkinson’s Disease.
Happy to see 2 of my stories from Feeding the Doves (Dream Island and Written) included (pp. 61-62) in issue 6 of the Romanian Journal Revista Kibo Titan! Grateful thanks to Clelia Ifrim and Dani Dumitrache!
After four or five years, the miracle pill—the “gold standard” of Parkinson’s treatment—loses its sparkle. The drug wears off several times a day, allowing symptoms to reappear or worsen. Unless you increase the dosage, you’ll be staring into the abyss: muscle stiffness, imbalance, weakness, lethargy… And if you increase it?
dyskinesia. . .
how tall grass
In Contemporary Haibun Online 17.1
There is a point at which thought unravels, where cosmic dust swims on waves our brains are not equipped to comprehend. This is the reason we learn to speak of concrete things caught by the senses – the fragrance of flowers, light and shadow, bird song, the weight of snow. Holding tight to the literal, we learn to survive.
Betelgeuse. . .
on my third cup
of strong coffee
My heartfelt thanks to editor Clare MacQueen for publishing this haibun
in issue 7 of MacQueen’s Quinterly. It had originally appeared in the
Wales Haiku Journal.
It’s at its loudest in the early morning hours. Before light dissolves darkness, before the neighbour leaves for work, before the birds start singing, his laboured breathing comes over the baby monitor whispering, gurgling, rattling, spluttering….
I lie awake listening to the crack of thunder, the roaring waterfall, the sounds of the sea emitted from his chest. A car starting, the exhaust backfiring, the train leaving station. The boat reversing in the harbour. Light rain. A soft meow. His breathing renders a whole world. In this soundscape, I make out the stories he told me when years ago he put me to bed.
Soon, light dispels the apparitions, and his breath comes over the monitor soft, steady, regular, lulling me to sleep.
music of the spheres
how we became
home alone . . . mother’s lipstick on her lips nude lipstick the teacher’s wry smile under her mask big sister’s lipstick . . . first date following his gaze to her mouth… lip reading lip liner learning to say no *** https://prunejuice.wordpress.com/2021/03/01/issue-33-senryu-kyoka/ In Prune Juice 33 (scroll down)
A woman reading a letter in the light pouring through an unseen window. Hair pulled back from the forehead, she is pictured in the style of her favorite painter against an expanse of soft yellows. Areas of blue for the shadows, the armchair and her top allude to hidden layers.
the temptation to see
Her upper body is turned towards the light, held by it, trapped by it. Arrested in the moment, her Parkinson’s is invisible. In a minute or two, she’ll have to change position, align her spine, prevent stiffness from setting in.
Amsterdam to Delft…
in their seats now, the old couple
remove their face masks
This is a good day. In the early hours of the morning, she’d lain listening to the woodpecker hammering time. As the hours rolled in, she made fabric out of wool, squeezed poetry out of the daily grind, mailed her loved ones. Read their letters…
to what matters
This haibun, a collaboration with artist and daughter Maria Pierides, appeared in the project Love in the Time of Covid
Very happy to have “Portrait,” my haibun paired with art by Maria Pierides, appear in Love in the Time of Covid: A Chronicle of a Pandemic. Many thanks to editor Michelle Elvy.
To read, click here
in my fridge
In “on the nail” haiku 2021
Dale Wisely says:
Delighted to announce a surprise, special issue of RIGHT HAND POINTING: Haiku 2021! (A nice set-up for our new print journal of haiku/senryu, first frost, coming this May). Thanks to our pal Elizabeth McMunn-Tetangco for curating the issue.Read it here
Third prize in the THF Kukai, January 2021
Here the writer is more obviously in the picture. We can easily imagine someone who is still in bed, waking to this familiar (and thereby reassuring) but perennially thrilling sound. The experience as conveyed has an energy that could well inspire optimism.
Commentary by Dee Evetts.
Thrilled to see my poem appear as (Per Diem) Haiku of the Day on the Homepagebof The Haiku Foundation! Many thanks to Ralf Broeker for including it in his collection on Spirits, and to Rob Scott for running the feature.
From this afternoon’s walk across the Schmutter wet meadows. The snow has gone and it feels like Spring…
it must be
something I said…
waiting for the red lipstick
Inspired by @MariaPierides’s Lipstick project
felted fire bowl
of red lipstick