Bionews Advocate Feature:
Jamie Askari of Parkinson’s News Today
Bionews’ caregiver advocates play a pivotal role in keeping our communities engaged with unique insights and content that speaks directly to their lived experiences. Jamie Askari is a Parkinson’s caregiver advocate on Parkinson’s News Today. She spoke to us about the challenges of the caregiver, her husband’s diagnosis journey, and how to find the balance between caregiver and spouse.
Q1: Tell us about your story with Bionews. How did you begin contributing here as an advocate?
A: I had followed Bionews on Facebook for a while. One day, I noticed that they were looking for a caregiver advocate. I had no formal background as a writer. It was never even something that was on my radar. I still wanted to apply. I met with Kevin and Matt. They took a chance on me without any writing experience. It has evolved from there. I love this organization so much. I feel blessed to have this opportunity.
Q2: Tell us about your writing and where you draw your inspiration.
A: In the beginning, I felt like I had so much to share and so much wisdom, especially through all of the experiences I’ve had. Today, I find it’s much more difficult. I feel like I’ve almost said everything there is to say. That’s why I’ve shifted my process to focus on me and my husband’s current experiences instead of talking about the past. At any given moment, I probably have 20 different pieces I’m working on at the same time. I owe a lot to the amazing editing team at Bionews. They have a way of taking what we do as advocates and making it into something that’s really polished.
Q3: Your husband Arman has young onset Parkinson’s disease. What can you share about his story and his diagnosis?
A: He was diagnosed at 38. He had actually just completed all of his years of training as a cardiologist right when he was diagnosed which meant he had to make the difficult decision to step away from his career. It’s not an easy diagnosis since there’s no definitive test. We had to just go through the journey of his symptoms. I actually remember asking him at one point, “do you think you have what Michael J Fox has”? As it turns out, he did. The most challenging part was explaining it to our kids who were young at the time. With Parkinson’s, it’s a slow moving progression. It was hard to envision the future early on.
Q4: What can you share about your transition into the role of caretaker after your husband’s diagnosis? What are some things you learned along the way?
A: It’s a slow transition. In the beginning, he honestly didn’t need a lot of help with things. As things progressed, he needed my help with more things related to his daily living. It’s almost like on-the-job training. It wasn’t like one day I was all of the sudden thrust into the role of full-time caregiver. It’s an interesting balance because I’m also his spouse. I want so badly to give him his independence. I never want to be the one who takes that away from him. I try to give him as much leeway as I can while keeping him safe at the same time. We were lucky to have always had a solid foundation in our marriage. It gives us a chance to continuously model a healthy relationship for our kids in spite of the challenges we face as a family.
Q5: In both the chronic and rare disease communities, there is an enhanced focus on the role of the caretaker. What can you share about the unique challenges of the role?
A: Being the spouse and the caregiver is all about finding that balance. I just want to continue having a healthy marriage despite Parkinson’s. However, I feel like it’s almost impossible to say the words “despite Parkinson’s.” We like to call Parkinson’s the uninvited guest who just won’t leave. Over the years, we have tried to just focus on having a healthy marriage and finding those moments of laughter to keep things light. You can choose to be upset about things or you can laugh and have fun with it. Look on the bright side of everything and weather the storm together.
Q6: Is there anything specific about Bionews and this platform that you find particularly unique?
A: Once I started working with Bionews, I was blown away with this organization. I wish I could shout it from the ends of the Earth. The fact that we are able to represent so many rare diseases and that so many advocates are patients and caregivers themselves is really special. I am hoping to continue growing with the company as I take on more responsibility.
Q7: How has your role as a Bionews advocate helped you along your journey as a caretaker?
A: I’ve learned so much from other caregivers, not just from the Parkinson’s community but from all of the other communities. It’s been invaluable to have all of that insight. That has really helped me with my confidence as a writer, too. It has been great for me.
We appreciate Jamie taking the time to speak with us about her unique perspective as a caretaker. If you’d like to read more about Jamie’s work, she has shared some of her favorite articles with us below!
The Day Our Son Noticed His Dad’s Early Onset Parkinson’s Disease
How Parkinson’s disease has shaped our oldest daughter’s life
A Lack of Understanding Creates an Opportunity for Positive Change
Looking for the good in the world and ignoring the stares and whispers
I want my now-self to tell my then-self everything will be OK