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…
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.
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:
This badass grandma is fighting Parkinson’s one punch, jab, and hook at a time 🥊 pic.twitter.com/AViHCRG97t
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.
Literature, Art, Culture, Society, and lots of Haiku
Stella Pierides 