how to still my swaying… freeze frame
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.