When you’re young, you think you have it all figured out. The future is limitless.
I was no exception. My life was moving right along when, all of a sudden, it wasn’t. I was diagnosed with young-onset Parkinson’s, and my husband and I found ourselves on a different journey, one we never could have imagined. But, for the last five years, that journey has been ours, for better or worse.
For Parkinson’s Awareness Month in April, I want to share our story by interviewing my husband, Mike.
Lori: It’s been five years since my diagnosis. How did you envision our life at this moment?
Mike: At the time of the diagnosis, I had no idea. Neither of us knew much about Parkinson’s. We tried to wrap our heads around what this meant. Early on, there was a lot of emotion, a lot of crying, a lot of hugging.
At the beginning, I felt that five years down the road, you would still be OK. You were otherwise healthy when diagnosed, you were young for Parkinson’s, so I couldn’t imagine a scenario where you would progress quickly. You, on the other hand, assumed you would progress rapidly. As a result, we spent a lot of time reconciling these two beliefs.
One thing I did not envision is that we would take ballroom dancing lessons and continue taking them over this five-year period. Who knew?
I feel our life is two chapters — life before Parkinson’s and life with Parkinson’s. How would you write an introduction to each chapter?
Before Parkinson’s: The following is the story of our lives. Getting married, raising three sons, working, playing, and experiencing all of those “normal” joys of growing up and going through life.
With Parkinson’s: Hang on! It’s going to be a little bumpy here in the beginning, but it gets a little smoother as we learn to adapt. There are also a lot of “normal” life-changing events that have occurred, which either masked the reality of Parkinson’s, or magnified it. Depending on the event, it could be either, or both.
Our kids are growing up, graduating, and “adulting.” These are significant events even without Parkinson’s, and are emotional for parents, so it’s hard to gauge how much of the emotion comes from the normalcy of these events, and how much they were magnified by Parkinson’s.
Parkinson’s makes me feel helpless at times. Do you ever feel the same way?
It did at the beginning, because of the unknowns. I would tell you that it’s going to be all right, but what did I know — this was unchartered territory for us. However, now I don’t feel helpless.
I see how you attacked this disease once the shock of the diagnosis wore off. You researched Parkinson’s, you learned that exercise was a powerful tool, and you took this to the next level. I am extremely proud of the way you have embraced exercise, not just for yourself, but also for others. You have been active in becoming certified in Parkinson’s-specific programs so you could teach others. This purpose has been important for your own well-being, and quite frankly, I’m a little scared of you now!
We face a future of unknowns. How has my diagnosis changed our lives?
Parkinson’s has changed our lives, but there are many unknowns still to come. We have all learned how to deal with adversity. Not theoretical adversity, but real-life stuff. You can’t prepare for this, but you can definitely learn from it.
Parkinson’s has brought us closer. It obviously is not something that either of us would have wished for, but it’s here. And so far, it has been different, but not all bad.
What advice would you give the partner of someone with newly diagnosed young-onset Parkinson’s?
Be supportive and understanding. Be there to comfort when needed. And be there to give a little push when needed. Sometimes it’s difficult to know which approach is most appropriate at the time, but you will figure it out. Most important, hang in there and continue to love (both of you).
What do you think we have gained from my Parkinson’s experience as a family?
I think we are closer as a family. It seems like this impacted our sons more than we knew. But as time passed, and everyone understood that Parkinson’s is not a death sentence, we all came to terms with it and realized this is the “new normal.”
Your father made a comment shortly after you were diagnosed, and I will never forget it. He said, “So you shake a little. … We still love you.” It’s maybe not the most politically correct thing to say, but I think it hits the nail on the head.
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 Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.
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