I want my now-self to tell my then-self everything will be OK
Living with Parkinson's disease hasn't kept my husband down, nor us
If I had a time machine, I would travel back to 2009. Like Michael J. Fox in “Back To The Future,” I would jump into that silver DeLorean and go! I would go back to when my husband, Arman, was diagnosed with early-onset Parkinson’s disease at 38 and early in his career as a cardiologist.
I would squeeze my young hand and assure my younger self that things would be OK. I would look into my much more youthful-looking face (sans gray hair and wrinkles), tell myself how things have gone since his diagnosis, and give that earlier me some much-needed advice and assurance.
I would tell my young self that the kids would be OK despite their dad’s Parkinson’s disease. No, it wouldn’t be easy for them, just the opposite. It would be a challenge that they would deal with every day. Almost every decision they’ll make will be based on making life easier for their dad and our family. I’d explain to my younger self that this has made them stronger and more empathic people, that all three of them would grow up to become young adults who have made us both proud and have exceeded our hopes and dreams for them.
If I knew then what I know now
I would happily tell my younger self that our marriage has weathered the storms of the diagnosis, the debilitating symptoms, the surgeries, the therapies, the career loss, and countless other life challenges. I would explain that strength, partnership, and a no-fail attitude have been a winning combination in our fight against this disease. I would explain how these challenges will constantly test us and there will be days when we are both too tired to fight, but to not give up. There is no giving up or room for this attitude, so do not consider going there, I will say to her.
And what about the most important person in this story — Arman? I haven’t even mentioned him! I saved the best for last.
Arman is amazing, I will tell my young self. He wakes up every morning smiling, happy to be next to the love of his life (me!). His attitude is positively infectious to all of us around him. Instead of complaining or feeling sorry for himself, he always looks at the bright side of life. Although he stepped away from his career soon after his diagnosis, he sees this as a gift. He values the time he can spend with our family and feels so fortunate that we have been able to raise our kids together. Yes, his Parkinson’s has progressed, but he manages to look at every day as a fresh start and doesn’t let the pain get him down. He is truly a hero and the best father and role model to our children.
It’s time for me to return to 2024 and the real world. Much has changed since 2009, but the journey has been worth the ride, even if it wasn’t in a DeLorean!
Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.
Comments
Jane Santos
Thank you Jamie for this lovely article. Parkinsons takes away so much but one of the things it can't take is how we choose to respond to its many many challenges. Thank you for giving me a new role model in the way you and your family have lived with PD.
Jamie Askari
Hi Jane, you really made my day with your comment!! Like all of us, I am doing my best to stay positive each and every day. I really appreciate you reading, thanks so much!
Jay Buchanan
Hi all,
I was diagnosed in 1989 at the age of 35. The Neurologist who told me I had PD was a very old and old school. I remember asking him if there were any therapies, his response "there is no therapy. I looked for a new doctor.
In 2006 I underwent DBS which has been a huge benefit to my life and is still working well today, along with cycling and walking and good eating habits. Next year when I turn 70 I will have lived half of my life with PD. I wish there were some therapy.
Jamie Askari
Hi Jay, thanks for sharing your story. You sound like a warrior! It is fantastic to hear how exercise and eating well have been so beneficial, in addition to the DBS. I also with there were some better therapies available. Please keep in touch!