Tag Archives: Parkinson's Disease

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Haiku for Parkinson’s: Introduction

The new project of The Haiku Foundation, Haiku for Parkinson’s was launched on the 17th of December 2023! I very much look forward to seeing it develop along the various themes and issues arising from Parkinson’s. The Introduction to the feature can be read by clicking here

I have copied it on this site too, see below.

Haiku for Parkinson’s is a feature of The Haiku Foundation, introducing haiku as a tool in the Parkinson’s toolbox, helping negotiate the challenges of the disease and improve quality of life. And, introducing Parkinson’s Disease (PD) to people living with haiku.

What is Parkinson’s Disease?

Parkinson’s Disease has mainly been attributed to the deterioration and eventual death of brain cells producing dopamine, important for organizing movement. This has been addressed by dopamine replacement therapy. Over the last few years, the role of dopamine and its involvement in the production of other brain chemicals has come to be understood better, leading to improved treatment of the many symptoms increasingly recognized to be part of the disease – over 40 and counting. Besides shaking, stiffness, difficulties with swallowing, problems with walking, balance, and coordination, there are also many ‘non-motor’ symptoms, including anxiety, depression, fatigue, apathy, insomnia, visual hallucinations. Moreover, several of the body’s autonomic functions, such as heart rate, blood pressure, temperature, breathing, and digestion become compromised.

thud!
a bird flies into
a closed window

— Catherine Mair

While this is a formidable list, and at present there is no cure, several programs have been developed amounting to what is often referred to as the Parkinson’s toolbox. Creative therapies are becoming available, offering considerable benefits, including lifting mood, increasing energy and motivation, as well as adding to the paradoxical phenomenon of increased creativity reported by (some) people living with the disease (see Parkinson’s Europe, Parkinson’s Creativity).

Haiku for Parkinson’s (H4P)

Haiku poetry is being used by some people living with PD to support life with this condition. Its qualities include:

Brevity: Haiku can be written or read in a single sitting, enabling feelings of completeness and accomplishment.

Concentration: Concentrating on the moment and our embodied being, haiku anchors us in the world, providing a counterweight to ‘Parkinson’s moments’ – when one feels stuck or caught in acts such as buttoning a shirt or trying to turn over in bed.

Exercise of the mind: Crafting a haiku, in the effort of finding the images and rendering them in words that best convey the experience, exercises brain and mind.

dreaming of birdsong
I wake to a wolf shaking me—
tremors again!

— Tim Roberts

Connectedness: Writing and reading haiku involves attending to the relationship or interaction between writer and reader, and nature – restoring our connection to the world and so becoming a healing force.

Identity: haiku helps enable exploration of the self by overcoming the embarrassment and stigma of the disease, and coming to terms with the constant challenges faced …

Parkinson’s
losing the power
to be myself

— Catherine Mair

while making the various symptoms and the uncertain future manageable.

the last page missing
from the library book—
late autumn evening

— Stella Pierides

In the coming posts, we will hear more about the qualities, and practice, of haiku in supporting people living with PD. And we will be venturing into the realm of haiku’s partner, haibun: the marriage of haiku with prose.

Coming up next: British poet Tim Roberts, living in New Zealand, will be telling us about his haiku practice and how it helps him manage the condition.

References and Bios

“Thud!” and “Parkinson’s” in Catherine Mair, keeping my head above water, 2015. This chapbook is available from The Haiku Foundation Digital Library.

Catherine Mair was born on a winter’s night in the family’s farmhouse in 1938. She has been published widely locally and internationally. In later years she has gravitated to the Japanese forms of Haiku, Tanka, etc. She has grandchildren and great-grandchildren, and the family has grown.

“dreaming of birdsong” in Tim Roberts, Haiku and Parkinson’s Disease: A Practice, in New Zealand Poetry Society Archives, 2020.

Tim Roberts was diagnosed with Parkinson’s Disease at 49 and has found freedom and joy in writing haiku and other Japanese-style short-form poems. He enjoys foraging for experiences and inspiration with his dog and lives a life that, he hopes, makes poetry inevitable. His book Busted! (Red Moon Press, 2023) is haiku and micro-poetry about his experience as a British police officer. Tim lives in New Zealand and is in awe of the scenery, wildlife, and southern stars. His favorite Maori phrase is ‘Kia kaha’, which means ‘stay strong’.

“the last page missing” in Stella Pierides, Frogpond 41.2 Spring/Summer 2018, p. 27

Parkinson’s Toolbox in Stella Pierides, Parkinson’s Toolbox: The Case for Haiku, 2022. Available from The Haiku Foundation Digital Library

Stella Pierides, who lives with Parkinson’s herself, is a writer and poet. Her books include Of This World (2017) and In the Garden of Absence (2012), both HSA Merit Book Award recipients. Her article “Parkinson’s Toolbox: The Case for Haiku” appeared in Juxtapositions: A Journal of Research and Scholarship in Haiku, issue 8, 2022.

Blog, Haiku

Gardening, table tennis, Parkinson’s…and haiku

Starting to prepare the garden and plants for winter. Several plants will be taking refuge in the greenhouse, where a heater will be protecting them from the frost’s cruel bites. Others will be toughening it out in the beds, with only a thick cover of straw.

For the first time, I will be planting garlic. I got the reading done, added a bed just in front of the greenhouse, and in a week or two, I will be planting. In the greenhouse, there will be potatoes growing in pots, salads, and herbs. Oh, the excitement! The excitement!

Having written an article on Parkinson’s and Haiku (Parkinson’s Toolbox: The Case for Haiku), I am playing with the idea of sequels. Such as? Well, Parkinson’s Toolbox: The Case for Gardening; Parkinson’s Toolbox: The Case for Table Tennis; Parkinson’s Toolbox: The Case for Felting! You get my gist. Between planting garlic, practicing serves, writing, and soaping wool there’s no time for apathy. Right? For now, at least…

Blog, Causes, Other Writers

Tulips for Breakfast (3)

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.”

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.


Blog, Causes, Other Writers

Tulips for Breakfast (2)

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.

https://davisphinneyfoundation.org/live-metaphor-medicine-with-wayne-gilbert/

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:

More soon…

Blog, Causes, Haiku, Other Writers, Tulips for Breakfast

Tulips for Breakfast

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.