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:
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.
Nepal quake fluttering prayer flags
resin seeping from
Every year, thousands of people try to enter Europe without permission. The last two years the numbers have increased. War, civil war, terrorism, famine, drought make their livelihoods untenable, their lives precarious. One of the major routes to the continent used to be via Evros, the river boundary between Greece and Turkey. Since 2012, however, when a fence was erected to block this entry point and after Frontex police increased their presence, new routes were followed: sea routes to Italy and Spain that are even more dangerous and deadly.
The rickety boats these refugees use to come in often sink; the borders they try to cross get more hazardous than the journeys. The European countries they enter, ignore or criminalize them, and often send them to holding centers where they are subjected to demeaning, abusive situations, torture, or worse; or sent back to the countries they fled from. And yet, they keep coming.
I saw some of those who made it. In Venice, Italy, without support, they bend down hiding their faces, and beg.
city of masks
the beggar hides
They hide and live in fear, yet they find this preferable to staying in countries where torture or death awaits them. Unlike those chosen to enter in one of the rare legal, though miniscule, programs of some European countries, these people exist in dire and life-threatening circumstances.
promising the earth
This odyssey is acted out all over the world, sometimes by people seeking work to improve their situation in places where they would not normally be entitled to work; most often by people fleeing conflict and persecution. In the Mediterranean countries, the recent conflicts have multiplied the magnitude of this problem.
Lately, hundreds of people arrived in Lampedusa and the Italian shores:* alive or dead, they reached this other country where those who survived the journey would have at least the opportunity to fight for a chance of a better life. Wouldn’t you too, in their position?
Wouldn’t you? If chance or circumstance placed you in such a predicament? The European Union, though, would not look favorably on your efforts to enter its borders with need and despair as the only passport. For instance, while the talk of new urgent measures is all about increasing funding towards detection of people in flight, as well as (allegedly) improved rescue at sea,* there is also the urge to repatriate and keep the refugees in the place they come from. An out of sight out of mind approach. Except that the situation in their home countries is so desperate that repatriated people try crossing the sea again, and again.
for hunter’s moon
A lot more is needed for the nations that make up Europe to acknowledge and accept the plight of the people affected by extreme poverty and poverty-driven wars, often the result of our aggressive policies, economic exploitation, and environmental abuse.
Out of this awareness, the Europeans themselves would be able to develop better policies than this drive to isolate, separate, and remove the perceived problem: a concerted European asylum seeker and immigration policy, grounded on the Universal Declaration of Human Rights (and the full United Nations Charter), with a budget and facilities for care and integration (rather than just border control) to back it up.
The first models to help us think and plan are already here: A tiny Italian village opened its doors to migrants who braved the sea offering them jobs and homes, creating in the process jobs for the entire village. Even though there is no ideal solution, and new problems arise in new situations, the will, the means, the examples, the aspiration are already here.
– This post is written for Blog Action Day, 2013 on 16 October 2013. Bloggers from different countries, languages, and interests will have a global conversation about Human Rights. I have published elsewhere a number of stories featuring refugees and their plight – including stories from refugees crossing the Aegean in 1922 – some of which are included in my short story collection: Feeding the Doves, Neusaess, Fruit Dove Press, 2013.
*Gazmend Kapplani, Albanian-born journalist, poet, and writer, in one of his FB posts suggests the least the EU could do would be to erect a Monument of the Unknown Refugee. Kapplani’s excellent book, A Short Border Handbook, relates the experiences of Albanian people crossing the border to Greece.
**Frontex, the European Agency for external border control, according to a statement of its site, “promotes, coordinates and develops European border management in line with the EU fundamental rights charter applying the concept of Integrated Border Management.” Unfortunately, what this comes down to is that the management of borders takes precedence over human rights.
Frontex has expanded the number of countries where it can send the people it ‘rescues’. “Nobody, however, is monitoring what exactly Frontex is doing in these countries of transit and origin with the goal of “stemming migration”. There is a serious risk of human rights simply being breached or refugees dying in places that are farther away from our attention.”
See also Spiegel online
The Festival of the Trees is “a periodical collection of links to blog posts and other online sites, hosted each month on a different blog.” Bloggers, poets, writers with an interest in arboreal matters post related material on their own blogs and submit the links to the host of each month’s co-coordinator. This month’s host was Arati, of the Bangalore-based blog Trees, Plants and More.
My own contribution to this month’s Festival of the Trees, I wrote some time ago. In “If Trees, then Olive Trees,” I use the olive tree, a precious, almost sacred tree in the Mediterranean, western Asia, and northern Africa countries; a symbol of peace and hope, connecting to the “olive branch,” and the sighting of land after the biblical flood.
Short, gnarled and twisted, the olive tree even looks appropriately old. It is said to live for hundreds of years, as its roots are capable of regeneration even if the trunk above ground is destroyed. Radiocarbon dating has confirmed 2000 year old trees in several countries! A tree known to be situated in the grounds of Plato’s Academy, in Athens, lived till the 1970s. An olive believed to have been planted by Peisistratus, the tyrant of Athens in the 6th century BC, is still to be found in Athens. Even older trees have been found in Israel and Arab lands, dating from 3000 and 4000 years ago. The trees of the Garden of Gethsemane are said to be dating from the time of Jesus.
In literature too, we know of several millenary trees: Homer featured olive trees in his poetry. Remember Odysseus bed?
My own poem is about putting down roots, both literally and metaphorically. You can read it here.
My novel “Alexandrias 40: In the Shade of the Lemon Tree” is also set around a tree, and it includes a number of surprising uses for its fruit. Not long now till the book is out. Watch this space.
For instructions on how to submit to the next Festival of Trees here.
A tribe in India has won a stunning victory over one of the world’s biggest mining companies. The Dongria Kondh, a tribe of 8000 people, with the help of Survival International and others, has won a victory over a multibillion company which proposed to mine bauxite on the sacred hills of the tribe. The Dongria Kondh’s struggle had a happier ending than that of the film Avatar, in which a tribe was pitted against a ruthless mining company. The Dongria Kondh’s perseverance, courage, and victory will encourage indigenous tribes everywhere.
Well done to Dongria Kondh, their supporters, and to Survival!
Creative Climate is a media and research project about climate and the environment run jointly by the OU and the BBC.
The Creative Climate website is full of interesting information from experts around the world: videos and articles to take your breath away – though not literally! On the contrary, there is a lot of hope in the contributions.
The documentary Hope in a Changing Climate drawing on success stories from China, Ethiopia and Rwanda, demonstrates how barren and decimated land that was thought to be beyond redemption could be brought back to life by local residents. Planting trees and selected vegetation in patterns that encourage the soil to retain water, they managed to transform within five years the arid plateaus to lush, fertile and life-sustaining land. The film of the work carried out by the locals in the Loess Plateau in China, is both beautiful and inspiring.
Restoration of the environment is possible; the process of decimation is not irreversible. As if proof were needed that it is a matter of belief, determination, and dissemination of knowledge… all to do with the climate of opinion influencing the climate!
For lack of pictures of these areas to show what has been achieved, I include the photograph of Two Lakes in a Volcano taken from space and tweeted live from the international Space Station by Soichi Noguchi http://twitpic.com/1exv5i Thank you Soichi Noguchi for this gem of a picture! It also attests to what can be achieved through co-operation, ingenuity and determination.
In April this year (2010) I committed to the Creative Climate diary project, a media and research project about climate and the environment run jointly by the OU and the BBC. As a global web log, it will chart online, through twice yearly diary updates, people’s ideas, concerns and experiences about the changing climate and its impact on the environment. Here is my first entry: http://bit.ly/9xd95H
wrote about what is now often referred to as ‘the 21st century new colonialism.’ Bigger/richer countries, companies, pension funds, individuals and others acquire or lease land in Africa cheaply on which they grow food and export it back to their home markets.
In Ethiopia, for instance, farm land twice the size of the UK is being used to grow food, flowers, as well as crops for biofuels. At the same time, millions of Ethiopians threatened by hunger and malnutrition, displaced, are not even being told of the existence of the farms or the plans to extend them. There is a similar situation in over 20 other African countries, and more and more projects are given the go-ahead, profiting the richer countries, companies and individuals at the expense of the indigenous population and local farmers.
argues that this need not be the only outcome. Rather, some of the development can be good news for the people involved, if there is proper consultation and negotiation of terms that are mutually advantageous. This is a good point – and something to aim towards. At present, unfortunately, not enough support is forthcoming for those affected, neither from their governments nor from abroad, that would enable them to become involved in such negotiations.
Turning a blind eye to the practice of using poorer countries as farms for the richer ones, while their people are starving, is becoming an urgent, practical as well as moral concern. And the implications and consequences of this practice are snowballing. Survival International is campaigning for the tribes of the Omo Valley, in south-west Ethiopia,
where a massive hydroelectric Dam is being built which will end the Omo River’s natural flood cycle. The tribes along its banks cultivate the fertile silt it leaves behind. Their fragile livelihoods are threatened as their farming is dependent on the river and its floods. However, these tribes have high illiteracy levels and lack the resources and infrastructure needed to employ the legal teams to negotiate terms on their behalf. Their government has so far ignored their plight.
If we don’t ‘see,’ who will?
On the Omo Valley: Survival International is working jointly with International Rivers, Friends of Lake Turkana, Counterbalance and Campaign for the Reform of the World Bank on the Omo Valley.
Survival International has a number of articles on these issues and various options available for those wishing to help with their campaigns.
Creative Climate is an online diary project set up jointly by the OU and the BBC to chart the ways in which people see and respond to environmental change over the next decade. Through the diary, people from all over the world, will be able to share their views on the changing environment, as well as their ideas on how to meet the coming challenges. In this sense, the Creative Climate diary, will become “a huge living archive of our experiences and ideas in one of the most important decades in human history.”
For a sustainable future, we will need all the creativity, determination, will-power and strength we can master – and as many perspectives as there are. I will be reading the entries and following the diaries.