An interview with Journalist Rosalba Mancuso: My Journey with Parkinson’s.
Please tell me a little about your background.
I’m a freelance bilingual journalist born and living in Sicily. I reside in the surroundings of the American air naval station in Sigonella. For my origins, I have always cultivated a strong interest in Italian and American cultures, nurtured through book reading. This path led me to work as a book reviewer, as well.
Can you tell me more about your Advocacy?
Since I was diagnosed with Parkinson’s in 2023, I have been trying to gather a lot of information on the disease, in order to understand the underlying causes of my condition and divulgate them through my articles. As a journalist, indeed, I collaborate with several publications. My work represents a big opportunity to spread awareness about Parkinson’s disease.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
My passions are multifaceted. I love writing and reading, but also walking amid the Sicilian woods. The involvement in Parkinson’s awareness always depends on my work as a journalist. Just this year, I have narrated my experience with this disease and its challenges in an article published on Parkinson’s News Today. The hope for a cure is, instead, a more personal experience. I asked my doctors for a genetic test I’ll receive in December.
What type of goals do individuals with Parkinson’s have when working with you?
My battle against Parkinson’s is currently conducted alone or in collaboration with my doctors. However, according to the comments I received on my articles about Parkinson’s, people affected by the disease want to have a normal life, they aim to be free from the annoying motor and non-motor disorders that often occur when you have Parkinson’s.
What type of training and how long are the programs?
My programs are still private and aim to keep my Parkinson’s at bay. They follow a double binary: psychotherapy for non-motor symptoms like anxiety and depression, walking and exercise for motor disturbances, like rigidity, postural instability and leg weakness. I have been executing them for two years now.
What effect can your Advocacy have on an individual with Parkinson’s?
When I talk to those with Parkinson’s, they find my experience very inspiring. People often say that I’m an example for others in my same condition. Hence, the effect of my experience is to encourage others to never give up, not even with a debilitating and severe disease like the one I have.
What would you like to see as a future goal for your Advocacy?
Obviously, I hope to see a new cure that is able to stop the progression or reverse the disease. It may be a more personalized and targeted therapy, because Parkinson’s is a disorder that can have many different causes.
What events do you participate in?
I didn’t participate in any event, unfortunately. But I follow the news of Michael J. Fox Foundation. Moreover, I hope I’ll interview the actor one day. I would like to publish the interview in a European magazine to spread Parkinson’s awareness in my continent, also.
How does this also assist the caregivers?
Their role is fundamental, but poorly supported, especially in Sicily, where the burden of the disease is all on the shoulders of wives, husbands, brothers or sisters. In my case, I’m the one who encourages my caregiver, aka my husband.
How can someone get in touch? What is your website?
People can reach out to me at https://rosalbamancuso.com or via LinkedIn and Facebook. Just search my first and last name + journalist to find me. My profiles are in English and are well visible in the search engines of English countries.
How can others also become advocates for awareness?
Simply avoiding to hide their condition and speaking up to others on every occasion. I said that because in Sicily, there is a culture where you must keep your disease secret, as if you had a deadly plague or had committed a mortal sin. This demeanor does not help awareness, but increases solitude, anxiety and worsens the disease.
How did you react to the diagnosis of Parkinson’s?
And here, here an entire world of colliding emotions opens. Initially, I remained shocked. It was June of 2023, when the Spect Brain Datscan revealed that I had Parkinson’s disease. Another shock was when doctors prescribed me with Sinemet, I should take it forever. Ever since, I have decided to fight, discover the cause of my Parkinson’s and find a better cure. In my view, in fact, Parkinson’s is the tip of the iceberg of a more complex condition rooted in my past. I also suffer from Hashimoto’s thyroiditis and bipolar disorder. The early symptoms of Parkinson’s occurred in December of 2021, in the midst of the pandemic, and worsened after a Covid infection. I was 50 years old. Now, I know that I have a cerebrovascular disease that may share genetic anomalies with my autoimmunity and bipolar disorder. I look forward to the genetic test in December to find a more effective treatment for my multiple conditions.
In your opinion, what is the key to effective advocacy?
The key is what I said in a previous answer: never hide your condition, but openly talk about it in every instance. Moreover, if you are a journalist as I am, use your work to write articles about Parkinson’s. It is the best way to spread awareness everywhere.
How can we better fundraise to support a cure for Parkinson’s?
Just recently, I discovered that clinical trials to find a new cure for Parkinson’s are very expensive, and, without funds, it will be impossible to perform them. Behold, I believe that people need to be informed about this problem. We need to spread awareness on that, as well. We need to say that no cure is possible with no money. If we put this message in the proper places, we could have a powerful tool to fundraise a cure for Parkinson’s.
What other activities do you undertake to help improve and support your daily living Eg exercise and alternative remedies?
My main activities, besides the ones my doctors prescribed, are to live as if I didn’t have Parkinson’s. I want to avoid being defined by my disease, I prefer to be only Rosalba, the passionate journalist and book reviewer. Despite my On and Off moments, I try to stick to my usual routine, it is a good way to forget my symptoms and my disease. Furthermore, with the help of my psychotherapist, Dr. Roberta Digeronimo, I keep a diary on my mood, while thanks to my psychiatrist, Professor Filippo Caraci, also a neuropharmacologist, scientist and researcher, I take medications for my bipolar depression that don’t worsen my neurological symptoms, and antioxidants to protect my brain from oxidative stress.
Why should people who don’t have Parkinson’s care about this?
Parkinson’s is a very unpredictable disease and can affect any age person in their lifetime. Healthy people, hence, can get valuable information from those like me, especially to learn how to better cope with this condition. Furthermore, Parkinson’s is on the rise by now, and the search for a new cure needs the support of everybody, both healthy and unhealthy people.
Have you had any family members or relatives affected by Parkinson’s disease?
My maternal uncle died from Atypical Parkinson’s in 2018. The disease occurred after a depression he experienced at the time of his work retirement. My mother, conversely, was affected by leg palsy in the 1960s, when she was 16 years old, caused by a depression that struck after she finished school. Fortunately, she recovered and today she is in good health. I experienced Parkinson’s after a long time of bipolar depression and after the stress of the pandemic. For these familial reasons, I think that my current pathology has something to do with a genetic disorder linked to depression. I hope to discover it with the genetic test.
If you had one song that would tell us more about you or represent your life, which song would it be?
It is an Italian song that in English reads:” With you or without you, my life is hard but it’s not over.” The singer is Annalisa Minetti, a blind Italian girl who has always been a source of strength and inspiration for me. If she moved on, despite her cecity, I can move on despite Parkinson’s.
What are your social media tags?
Linkedin: https://www.linkedin.com/in/rosalba-mancuso-a0985a37/
Facebook: https://www.facebook.com/rosalbamancusowriter
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
My quote would be: “There aren’t unbeatable diseases, there are only unbeatable prejudices.” Just invented it for this interview. It is not a quote by Einstein, but it gives you the idea… The main prejudice to beat is about money. People fear paying money for science, but it is a good deed to support the new cure and the recovery of millions of people with Parkinson’s.
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TogetherForSharon® In memory of my mother, Sharon to voice awareness & hope for a Parkinson’s Disease cure. Sharon’s Son, George