I don’t have Parkinson’s disease, but my dad does. And sometimes I wonder how lonely it can be. Even when we as loved ones try to understand the disease, experiencing the symptoms seems really isolating.
No, I don’t know what it’s like to struggle with tremors, dyskinesia, or freezing. Random bouts of nausea don’t riddle my day. And I don’t have to worry about being stigmatized by strangers if I go out in public. Living with a disease like Parkinson’s can create these unique problems in a matter of seconds.
If you have anxiety, for example, how do you tell your loved ones that you don’t want to go to an important event? Explaining that you’ve had panic attacks mid-performance can feel like an impossible task. If you do end up attending, you may sit in the aisle seat in case you have to excuse yourself.
Without extensive explanations, people who don’t suffer from the same symptoms don’t generally understand. And not being able to experience those symptoms further separates them from the person with the condition.
Day-to-day life with Parkinson’s
As someone who loves a person with Parkinson’s disease, I’m always on a journey to understand what it’s like to live it. I don’t want my dad to feel alone when he struggles. And although I can’t always relate to his symptoms, I can be present and let my dad express his feelings exactly as he feels them.
Thirteen years after his diagnosis, he’s comfortably retired. But his life is timed by his drugs. And if they don’t work on a particular day because he ate too much protein, his plans are quickly interrupted. He no longer feels safe driving, and he has to delay his intentions.
Some days, he asks for help with making coffee or cooking breakfast. On others, he does just fine on his own. Is it a mentality that determines his good days? Or is it that his body won’t always cooperate with his mind? Perhaps it’s a combination of things that propel or stop my dad throughout the day. I attempt to be sensitive to his requests, adjusting as we go.
Celebrating Rare Disease Day
This year, we’ll be celebrating Rare Disease Day on Feb. 28 to pay homage to unique struggles like my dad’s. While Parkinson’s isn’t a rare disease, I know that my dad struggles with symptoms that are pretty uncommon. And I want to honor that struggle.
Rare Disease Day was created to raise awareness and grab the attention of both policymakers and the general public. According to the International Federation of Pharmaceutical Manufacturers & Associations, about one in 15 people worldwide suffer from a rare disease, and there are between 5,000 and 8,000 known rare diseases. These conditions cause much grief and pain on a daily basis.
My dad is optimistic that scientists may be close to finding a cure for Parkinson’s. And I can only imagine that those who struggle with rare diseases hope for the same. Maybe scientists can at least develop treatments to alleviate symptoms and help those in pain. On days like Rare Disease Day, we can shout a little louder to get the attention of those who can do something about the suffering.
Parkinson’s disease brings a tremendous amount of strife to our lives, never ceasing to take away my dad’s abilities. But it has also brought silver linings: We spend more time with one another, knowing that we won’t live forever. I make it home a little more frequently to ensure I’m not missing all of the important moments. And we’ve begun to talk about our feelings — something our family has never been very good at doing.
Managing Parkinson’s disease
I won’t claim to know what it’s like for my dad to navigate Parkinson’s. But I have witnessed the ebbs and flows in his routines. And I’ve seen how difficult it can be to adapt to the constant challenges that come with his disease.
Managing a disease like Parkinson’s seems to be a fluid process, because every day is a little bit different. As a caregiver, I believe that my job is to offer support when I can, but it’s OK for me to ask for help, too.
We’re always on the hunt for solutions to living with an array of symptoms, hoping to alleviate my dad’s constant pain and turmoil. But in the space between bad days, we hold our happy moments close to the heart. Dad adjusts his routines to accommodate the changes in his body. And I hug him a little bit tighter, knowing how lucky I am to have him in my life.
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.
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