April is Parkinson’s Awareness month. Did you know that over 1 million Americans and 110,000 Canadians are living with Parkinson’s Disease? Or that the red tulip is the adopted floral symbol of the disease?
The Red Tulip
What is the significance of the red tulip? In 2005, at the 9th World Parkinson’s Disease Day Conference, this tulip was adopted as the official symbol of Parkinson’s. The tulip was cultivated and named in honour of Dr. James Parkinson, who, in 1817, wrote about what is now known as Parkinson’s Disease. The Dutch horticulturalist who developed the special red and white tulip was J.W.S. Van der Wereld. J.W.S. Van der Wereld lived with Parkinson’s Disease. 1
According to Parkinson’s Western Australia “Tulips are also regarded as a symbol of hope for the Parkinson’s community and the three petals often depicted are said to represent education, research and advocacy.”
What a wonderful illustration! I’d like to take this opportunity to share hope and promote education, research and advocacy by highlighting 2 guests from the Island Treasures podcast who have a strong connection with Parkinson’s Disease. By introducing them I hope to add my voice to the many voices already extending the understanding of Parkinson’s Disease and advocating for those living with Parkinson’s Disease.
The two guests are Dave Iverson and Dr. George Ackerman.
Dave Iverson
Dave Iverson joined me in 2022 in the Island Treasures podcast episode called “Telling the Full Story of Caregiving” after he launched his book, “Winter Stars”. His book tells of his caregiving experience which began when he was 59 years of age, and his mom was 95 and living with dementia. Despite her age, his caregiving role lasted for 10 years. Three years before embarking on his caregiving journey he had received his own diagnosis of Parkinson’s Disease.
Dave’s many roles include: a reporter, producer, writer, correspondent, and caregiver. His 2009 film “My Father, My Brother and Me” was part of PBS Frontline Series. The film was educational about Parkinson’s Disease and informative of the research that was underway at the time. It was also highly personal for Dave and his family, for he was not the first member of the family to receive the Parkinson’s diagnosis.
In his film we hear that “life changes for Parkinson’s patients when a key neurotransmitter called dopamine goes missing”. According to the American Association of Neurological Surgeons “Parkinson’s disease is a progressive disorder that is caused by degeneration of nerve cells in the part of the brain called the substantia nigra, which controls movement. These nerve cells die or become impaired, losing the ability to produce an important chemical called dopamine”. In the film we also hear about the research being done at the University of Pittsburgh; and see the effects exercise has on Parkinson’s Disease – perhaps even its effect in helping protect the brain against damage.
Dance for Parkinson’s
There’s a beautiful segment in the film that introduces Dance for Parkinson’s which was started by the Mark Morris Dance Group and makes exercise enjoyable, social, participatory, and somewhat transformative for people living with Parkinson’s Disease. Dave directs a second film called “Capturing Grace” 2014. “Capturing Grace” follows a dance class for people living with Parkinson’s Disease and tells the stories of the magic that happens when the worlds of dance and Parkinson’s Disease collide.
Dave reminds us that the “disease is progressive but so too is science” and over the 15 years since that Frontline documentary aired, there have been advancements through research; but, to date, no cure.
Over 1 million Americans and 110,000 Canadians are living with Parkinson’s Disease. Hearing that no cure has been discovered is discouraging – but the good news is that efforts continue. As we raise awareness and fund research, it is hoped that a cure will soon be found.
Dr. George Ackerman
This is the perfect place to introduce the second Island Treasures podcast guest with a connection to Parkinson’s Disease – Dr. George Ackerman.
George Ackerman is the founder of Together For Sharon and a voice of advocacy for people living with Parkinson’s Disease. He has spoken to law makers and researchers; and is striving to make a change and ultimately find a cure for Parkinson’s Disease. His resolve to carry out this work is deeply rooted in his personal journey as caregiver for his mother, who lived with Parkinson’s Disease for 15 years. She also lived with late-onset dementia for the last four years of her life.
How does he do this work? Well, George’s efforts to effect change can be found through his social media and on his website. At the time we spoke on the podcast there were a few upcoming events he was planning to participate in including the Parkinson’s Foundation’s Moving Day – walk for Parkinson’s. Participating in this walk demonstrates support for everyone affected by Parkinson’s Disease. Moving Days raise awareness and promote physical activity – which has been proven to “help manage Parkinson’s symptoms” according to movingdaywalk.org
He also plans to participate in the American Parkinson’s Disease Optimism Walk. This walk is part of a nationwide movement to mobilize and inspire people to step-up and help put an end to Parkinson’s Disease. Their motto is ‘Strength in Optimism. Hope in Progress.’ George spoke about another opportunity which he has now attended – that was an educational event through the Michael J Fox Foundation; plus he will possibly be joining the 30th anniversary Unity walk which is to take place in Central Park, New York City later in 2024.
In addition to his participation in these walks and events to raise awareness for Parkinson’s Disease, George is passionate to educate and partner with others to amplify their voices as they strive to find a cure for Parkinson’s Disease. He follows the law makers closely and in late 2023, The US House of Representatives passed the National Plan to End Parkinson’s Act. George spoke about the significance of this in the Island Treasures podcast episode called “Sharon’s Son’s Journey: Caregiver to Advocate”.
The Michael J. Fox Foundation also looks forward to this bill moving on to the Senate stating,
“With groundbreaking progress made in Parkinson’s research this year — including the discovery of a biomarker — there is no better time to focus our efforts on accelerating science to better treat, prevent and ultimately, cure this disease.
Michael J Fox Foundation
Fundraising for Parkinson’s Disease
I have known about Parkinson’s Disease for many years, as I have personally known and worked with people living with the disease. Therefore, I am adding my voice to the many advocates already making great changes for those who are living with Parkinson’s Disease, especially for Parkinson’s Awareness Month, as there is no better time!
How about you? Are you interested in learning more about Parkinson’s Disease and advocating for folks who are living with the disease? If so, a great place to start is Dave Iverson’s Frontline movie. By watching it you will see clips of Dance for Parkinson’s and get a sense of what overcoming adversity can look like through the lens of Parkinson’s Disease. It’s worth checking out.
As a final note I’d like to echo George’s words from the podcast when he says “together our voices are so much stronger.” For Parkinson’s Awareness Month we can add our voices to those already raising awareness for Parkinson’s Disease which hopefully will lead to finding a cure.
- Red Tulips for Parkinsons, Hodgson, Larry Hodgson, Laidback Gardener, September 13, 2018 ↩︎
It’s wonderful the things they’ve learned to use to help those with Parkinson’s! Thanks for your article, Alison.
Thank you Tracy, I certainly agree and the more we learn and raise awareness about what can help those living with Parkinson’s Disease the better.