My Dad’s Response to the Suggestion of Adaptive Clothing Surprised Me

Clothing choices can greatly affect independence for Parkinson's patients

Mary Beth Skylis avatar

by Mary Beth Skylis |

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I recently discovered that there’s an entire retail market for adaptive clothing, which can help those who struggle to dress themselves in traditional clothing. Some brands make polo shirts or pants that appear standard, but upon further examination, actually have features such as Velcro and magnets. Other brands offer slip-on shoes with decorative laces. These options could be a game changer for those who are battling Parkinson’s disease.

As Parkinson’s progresses, many patients experience worsening tremors, cramps, and other motor symptoms that can cause difficulties completing various tasks. But adaptive shoes and clothing could enable Parkinson’s patients to dress themselves for longer.

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When Dad was diagnosed with Parkinson’s in 2013, he was barely showing any symptoms, except a shaking foot. Nearly 10 years later, he’s still incredibly independent and manages to do almost everything on his own. But his symptoms have worsened. Now, the tremors are more persistent. He gets cramps at odd times, and he struggles with stiffness, especially in the morning.

Because of his progression, I thought Dad might be a good candidate for adaptive wear. So I told him about it.

Dad thanked me for thinking of him, then explained that he might not be ready to swap out his clothes for items with magnetic closures or push snaps. For him, adaptive clothing would serve as a constant reminder of his disease, and he doesn’t always want to think about what the future might look like.

I was a little surprised by Dad’s response. I’d imagined that he would want products that could help simplify his life. Maybe the clothing style would be a reminder of Parkinson’s at first, but wouldn’t he become accustomed to it eventually? To me, it seemed like a natural solution to troubles he’s probably already having.

At the same time, I want him to maintain his independence for as long as he can. I thought adaptive clothing could help him to do just that; I didn’t realize that saying no to it could be another way for him to remain independent. If he chooses to negotiate with standard clothing for a while longer, I think I need to let him.

There may come a day when he’s ready to accept a little help from adaptive clothing or eating technology. But that day isn’t today. And I think it’s my challenge to accept Dad’s wishes.


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

Mike avatar

Mike

Mary Beth,
Your father is very lucky to have a daughter like you. You care lot’s and want to make things easier for your dad. As a fellow PwP’ we have no choice on some changes. It sounds like your Father is not quite ready for adaptive clothing and that day may well come. But if it were me I would try and validate Dad for his desire to stay independent. Blessings, Mike

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Jack Testman avatar

Jack Testman

Thanks for writing this!

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Gina Kingston avatar

Gina Kingston

Hi Mary Beth, I’m a personal stylist that specialises in people with chronic illnesses. My mum had MSA - a Parkinson’s Plus disorder, which got me interested in adaptive clothing. A lot of my clients who have a degenerative condition like your dad see adaptive clothing as something that is for people with a disability, and they aren’t ready to identify as disabled. A few years ago, the clothes stood out as being “disability friendly”. Now they are leading fashion in some areas. Rather than thinking of these clothes as only for people with a disability, I like to think of them as inclusive clothing. With a few exceptions (eg seated pants) adaptive clothing is something that everyone can wear. If more people bought adaptive clothing it would be cheaper for those who need it. Rather than try and get your dad to wear it, you could look and see if there is any adaptive clothing that you like. When the time comes for your dad, you might also like to try modifying some of his clothes rather than buying new. It might help him if the clothes are more familiar too him. You can also find regular range clothes with adaptive features. All the best to you and your dad! Gina

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Peter Zollo avatar

Peter Zollo

Hi Mary Beth,

Just (finally) saw your article. We have much in common. My father lived with Parkinson's for the final decade-plus of his life. We made the decision to move both him and my mother from their home of many years into assisted care, which began quite a journey for our entire family. We were so fortunate that we found wonderful care close to home and I was able to visit almost every day.

But, when Covid forced my mom's new community into lockdown (my dad had since passed), like so many others, we no longer had real visibility into what she needed. We could no longer see which clothes got stained,, worn, and were in need of replacement. That's when we began what we thought was simply a passion project, an e-commerce site (www.JoeAndBella.com) to help families get what they need for their older loved ones. Lo and behold, the idea proved to find unexpectedly wide appeal. We found that what families needed most from us was clothes, yet we weren't at all pleased with the current options: either nonadaptive clothes for older adults that were painful to get on and off or low-quality, unattractive adaptive apparel.

We installed a video camera in my Mom's room and, for the first time observed the real pain and stress she experienced as she was dressed and undressed each day. (We also saw how difficult and at sometimes painful this task was for the caregiver, too.) That's when my son Jimmy stepped in to research adaptive apparel (though we're also drawn to the idea of inclusive apparel or universal apparel design, commented by others), When my mom dropped the "F" bomb during a changing (we had no idea she even know that word!), we intensified our search for a solution.

So, Jimmy found and sent her a few adaptive tops and bottoms, which he thought were close to her style. When she received these, true to her fashionista self, she simply said "too ugly!" and refused to even try them on. She'd opted for pain over wearing these clothes. As we've since learned in great nuance, what we wear is part of who we are. Just because we're living with age-related changes doesn't mean we should have to change the style of clothes that we've always worn and that's a part of our identity.

That's when -- having recognized this huge need -- we pivoted in our business and began to design and manufacture our own own adaptive wear that doesn't look like anything we had come across. So, Jimmy hired a talented and motivated former Lululemon designer and her team to rethink and reinvent adaptive clothes for older women and men who've always appreciated style and premium quality.

We've now come out with our first product called CareZips Classic, which is a patented three-zipper system that makes changing and toileting quick and easy for all parties involved. It's ridiculously comfortable. It's already won awards for the best new adaptive product of the year for seniors. Our next item, Everyday Freedom Pants, which looks and feel like luxurious Lululemons and Public Recs, will be available next month, followed by a full line by year's end.

The touching letters and emails we've received from older adults and their loved ones have validated what we're doing. And we've been fortunate to attract an expert and inspired group of strategic advisors and investors to guide and support us. So, what began as a passion project for a single family has become something bigger and more meaningful than we ever imagined, helping thousands of older adults, their families, and care partners each day.

Thank you for what you've written and helping to raise awareness about this life-changing solution for so many.

Peter Zollo

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