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April is Parkinson’s Awareness Month

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Did you know that April is Parkinson’s Awareness Month?

A month to raise awareness of this disease and share information about it with the public. The aim is to highlight the urgency of finding a cure, but also matters in need of attention while waiting for a cure. To remind ourselves too, about the different experiences, approaches and treatments available to help manage the condition. What will you be doing during the month? Sign a petition? Make a pledge to exercise more?

Whatever you do, choose an activity that engages you, inspires you, makes you smile! Play table tennis! Read a haiku! Keep talking, keep thinking, keep learning!

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Haiku for Parkinson’s: Interview-Tim Roberts

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The second installment of Haiku for Parkinson’s is the interview of a British poet, now living in New Zealand, Tim Roberts.

Tim describes his haiku practice and the ways it helps him with his Parkinson’s symptoms. It has not been an easy ride. He says:

I had to stop work shortly after being diagnosed. I was adrift. I didn’t have any real hobbies and lost my identity. I felt rudderless and scared. I didn’t know who I was anymore – perhaps that means I never had. I had confused who I was with what I did. Now, having developed such a rooted haiku practice, I have a solid sense of who I am and an exciting sense of purpose. I love poetry and I like to use it to connect to others. I see it as my vocation – and a part of my spiritual practice. Now, thanks to the challenges of PD, I am much more me than the person who was a leadership coach, or any of my previous personas, the university teacher and the detective.

Take a look here for Tim’s informative, inspiring, and from-the-heart account of his journey with 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, Causes, Haiku

April is Parkinson’s Awareness Month

How to live well with Parkinson’s Disease? What helps me: Haiku for #Parkinsons and #tabletennis!

I have haiku in my Parkinson’s toolbox! Poetry, exercise grounding the senses, living in the moment. And I am sharpening my table tennis skills, as it has been found to help with the disease.

For all things haiku, including advice for absolute beginners, check out The Haiku Foundation https://thehaikufoundation.org/

For haiku for Parkinson’s see Parkinson’s Life, the magazine of Parkinson’s Europe, https://parkinsonslife.eu/the-aim-of-the-haiku-poet-is-to-capture-the-essence-of-a-moment/

More information about table tennis for Parkinson’s on Facebook and  website https://www.pingpongparkinson.de/

Live well and prosper! Or as I am increasingly learning, “bleib’ am Ball”!

Parkinson's Awareness Month
Blog, Haiku, News

Parkinson’s Toolbox in the online resources of Parkinson’s Europe

Delighted to see that my article “Parkinson’s Toolbox: The Case for Haiku” is now included in the online resources of Parkinson’s Europe, the umbrella organization for PD societies.

Click to access parkinsons_toolbox-pdf.pdf

The project titled “Parkinson’s and Creativity” aims “to create an online library of scientific papers, relevant articles, and videos with the aim of sharing knowledge of the latest scientific discoveries and mysteries of Parkinson’s creativity.” Check it out here

https://www.parkinsonseurope.org/get-involved/parkinson-s-creativity/parkinsons-and-creativity/

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Parkinson’s Toolbox: The Case for Haiku

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Juxtapositions

 The eighth issue of Juxtapositions: Research and Scholarship in Haiku is out. JuxtaEIGHT is a themed issue on “haiku and wellness,” with several articles, interviews, and resources addressing this theme. And it includes two contributions by yours truly: the article “Parkinson’s Toolbox: The Case for Haiku” is now available to download (pp 37-61), as well as a description of Haikupedia from the Resources section of Juxtapositions: Check them out here https://thehaikufoundation.org/wp-content/uploads/juxtaeight.pdf

I copy below the Abstract of the Parkinson’s article:

Parkinson’s Disease (PD)—the fastest growing neurodegenerative condition worldwide—affects a wide range of motor and nonmotor functions. At present, there is no cure. Only symptomatic treatment is available, aiming to improve quality of life and slow progression. The aim of this paper is to recommend haiku as a therapeutic tool helping with symptoms and, potentially, rate of progression. To this end, following a brief description of PD, and its symptoms grouped under two areas of loss resulting in life diminishment, I touch upon the general role of art and literature in augmenting pharmacological treatment of the disease, before focusing on some of the qualities of haiku (in the process of writing as well as the created poem) that collectively make haiku a containing vessel that can hold and transform the distress associated with the disease into a more bearable experience.

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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…

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The course on haiku included in Haiku Bridges

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Happy to see my course on haiku for Parkinson’s Art aiming at people living with #Parkinson‘s, their families, and friends, being included in HAIKU BRIDGES, the new feature of The Haiku Foundation!

HAIKU BRIDGES is a new periodic feature from The Haiku Foundation designed to encourage and communicate significant haiku outreach initiatives to new audiences.

Scott Mason, running the feature, invites suggestions of such initiatives for possible inclusion in a future post.

I copy the post below:

Regular readers and writers of haiku recognize that their haiku practice confers personal benefits beyond the literary—it offers the therapeutic values that come with mindful awareness plus a felt connection with their surroundings. The nonprofit organization Parkinson’s Art, through its Parkinson’s Art Academy, will be offering those with Parkinson’s Disease and their families, friends and care partners a free eight-session course on haiku and haiku-related forms starting on September 18th. The online course was designed and will be conducted by Stella Pierides, a Member at Large of The Haiku Foundation board.

The mission of Parkinson’s Art is “to inspire and develop creativity across the Parkinson’s community.” Through its Academy the organization currently offers courses ranging from the visual arts (“Drawing & Painting Portraits”) to the literary arts (“Poetry Without Fear”).

Jan Sargeant, Director of Literature in the Arts at Parkinson’s Arts, states: “We are delighted to provide our audience with the opportunity to experience the power and beauty of this deceptively complex form of poetry. And we’re just thrilled to have someone as accomplished and committed as Stella to teach it.”

For more information, visit Parkinson’s Art.

Trevor Woollard, who set up the organisation noted that a lot of the major charities in the sector focus – rightly so – on exercise. But there are huge numbers of people who are less mobile or not sport-orientated or don’t have that kind of ability. And they’re often forgotten.

Exercise is important – but so is exercising the mind and soul.

I am looking forward to the course. Haiku, the shortest of poems, packs quite a punch!

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Tulips for Breakfast: Haiku Course

haiku for Parkinson's

I am thrilled to be teaching a brand new course on haiku
for people affected by Parkinson’s, their families, and friends, for
the Parkinson’s Art Academy. Starting 18 September 2021 it runs for 8 weeks.

Parkinson’s Art is a non-profit organisation run by artists and writers living with Parkinson’s disease.

Its mission is to:

  • Promote the benefits of art to those affected by Parkinson’s Disease
  • Provide a platform to collaborate and share artwork
  • Showcase Parkinson’s art and raise awareness through exhibitions and events
Haiku, Parkinson's Art Academy

At the centre of this effort, stands the Parkinson’s Art Academy, offering a variety of free courses on literature and the fine arts. It taps into the wealth of experience existing in the community of people with Parkinson’s.

Blog, News

Tulips for Breakfast: Parkinson’s Art

Recently, during my internet meanderings, I came across a very exciting international community of people with Parkinson’s: Parkinsons.art

They are

… a registered, non-profit organisation run by artists and writers living with Parkinson’s Disease. It is a voluntary initiative with 100% of every donation and funds raised going directly to Parkinson’s charities and supporting arts projects within the community. Parkinson’s Art works closely with Parkinson’s UK as well as supporting other Parkinson’s related organisations.

Parkinson's

The mission of Parkinsons.art is to:

Promote the benefits of art to those affected by Parkinson’s Disease

Provide a platform to collaborate and share artwork

Showcase Parkinson’s art and raise awareness through exhibitions and events

The original brainchild of Trevor Woollard, Parkinson’s Art is run by a small team of dedicated volunteers with expertise in various art disciplines ranging from painting through photography and sculpture to prose and poetry.

Their first major exhibition, ‘VIVID Dreams 2020,’ will be held at the Oxo Tower in London, UK, from 18-29 August 2021. Vivid dreaming is a symptom of Parkinson’s. The exhibition (and the accompanying catalogue) reflects this experience in a selection of artwork and poetry. There’s a virtual aspect to the exhibition, too: an app with augmented reality that allows people to view the exhibited works of art on their own walls.

Parkinson’s Art also runs the Parkinson’s Art Academy, which offers a variety of free courses on literature and the fine arts. It taps into the wealth of experience existing in the community of Parkinson’s, which includes many amazing artists.

I am pleased to say that I am joining this wonderfully creative group: I will be offering, in the autumn, an introductory course on haiku. More about this soon …

P.S. You can now pre-order the official ‘VIVID Dreams – London’ catalogue. This A5 book contains all the paintings from the VIVID Dreams 2020 exhibition, plus a selection of poetry and stories of inspiration from the Parkinson’s community.
Check it out here: https://instagr.am/p/CRLczldsANU/

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.

Blog, Haiku, Journals, Short stories

Collateral Damage in CHO 17.1

Collateral Damage
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
sways

In Contemporary Haibun Online 17.1