How our family seeks to make life ‘PD-friendly’
Here are a few ways we reduce the complications Parkinson's causes
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Lately, I’ve been thinking a lot about the short phrase “PD-friendly” (PD being Parkinson’s disease). I wonder if others use this phrase. Or did I just make it up myself? At any rate, what does it mean to me to be PD-friendly? Let’s discuss.
Living with Parkinson’s disease is no walk in the park. Symptoms worsen as the disease slowly progresses, making tasks that used to be simple and natural become tedious and painfully difficult. Actions that many of us take for granted — such as eating, walking, standing in place, speaking, dressing, grooming, and driving — are incredibly challenging for Parkinson’s patients, especially in the later stages.
With all of the above challenges and so many more, how can we make our life with Parkinson’s disease more “friendly,” or easier? I’ll make this personal: What has our family done to make the life of my husband, Arman, as easy as possible with his early-onset Parkinson’s disease?
Here are some things we do:
Simplify and strategize
Set priorities: I prioritize safety over everything, period. For example, I keep our home clutter-free to minimize the risk of falls. When we’re not at home, it’s more challenging to ensure his safety. But we do our best to be proactive when we’re out and about.
Plan ahead: Asking for information before going to a new place is helpful. Arming yourself with knowledge is critical. We recently attended a fundraiser and learned beforehand about the venue, event timing, seating, parking, and many other details to make it a safe and enjoyable evening.
Be picky: If I feel concerned about attending an event or going somewhere new, I can always say no. Close friends and family will understand and often change their plans to accommodate us and make the outing PD-friendly.
Less is more: We’re fortunate that we enjoy one another’s company and love our home. Because of that, we don’t plan many outings or events. Our family and friends enjoy coming to see us at home, where we know Arman is safe and comfortable.
Be flexible: As we all know, Parkinson’s disease and the medication for it are unpredictable. Therefore, we try to stay flexible. If Arman is getting tired or feeling poorly, we head home. As stated above, close friends and family will understand.
Simplify: A few columns ago, I mentioned that I’d started planning my daughter’s “PD-friendly wedding.” We’ve simplified the weekend events by selecting a hotel venue that allows us to host all but one of the celebrations in one building. The wedding ceremony, reception, and farewell brunch will all be in the same place. Fewer transitions should make it easier for all.
Choose wisely: I’ve found that surrounding ourselves with people who are mindful and considerate of Parkinson’s has been invaluable. When making plans, these people go out of their way to ensure that Arman will be safe, comfortable, and able to enjoy himself.
While it’s challenging to make your entire life PD-friendly, it’s also possible. And there are many ways beyond this list to make it happen.
I’d love to know how others have made their life PD-friendly, so please share in the comments. I look forward to hearing from you!
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
Peter Forastiere
Jamie, I enjoyed your article on PD-friendly, I am 72 yr. old male and was diagnosed with PD in May of 2017. I agree with you that the little things in life can be very challenging, to simplify one’s life and daily routine, is essential. I have been involved in the Rock Steady Boxing program for seven years and found it incredibly helpful and necessary in my daily activity. Not only is the physical part of the program vital in slowing the progression of the disease bit the socialization is important as well. I live in Maine and have a 60 min. drive to the boxing studio. Not always convenient especially since I have voluntarily stopped driving. The stress of coordinating ride time with appointments my wife and I have as well as attending sports events that my four grand children play in can be exhausting non the less stressful. How to simplify this? I installed a gym in my basement, boxing bag, speed bag, treadmill and weights. This does not replace my outside activities and boxing gym but allows me the flexibility I need to workout when ever and where ever I want.
Thank you,
Peter
Jamie Askari
Hi Peter! Thanks for reading. How fantastic that you are able to have a gym right in the comfort of your own home. My husband has one at home too, it is great because he can exercise when he is feeling up to it. I also love how importnat your grandchildrens sporting events are to you, what a gift!!