My sister’s progressing MS has created a need for adaptive clothing, however, the adaptive clothing available online, while functional, lacks style. Choices are limited, and most features skew toward a caregiver dressing the individual.
My sister wants to dress herself to the best of her ability. Maintaining independence when you’ve lost so much is critical to one’s mental health. Further, her care home wants to charge an additional $500 monthly for dressing assistance. We’re both appalled.
Due to leg spasticity, muscle contractions, and impaired trunk (torso) strength, Sharon can no longer wear pants or tights. Instead, I’ve modified off-the-rack dresses and tops, making them functional and stylish.
Finding a dress with a long full skirt in a soft knit material took me a while, but I eventually found two I could alter. I found a halter-style dress on another shopping trip, so Sharon has three dresses in rotation. In the end, the halter dress was the winner in terms of ease of dress, so I’ll look for more at some point. The dresses I bought were on the clearance rack at the end of the season.
I changed the neckline of the two knit dresses by adding soft elastic to the dress straps. I cut the back of the skirt from hem to waist, then overlocked the exposed opening. The new opening in the back of the skirt allows the dress to drape over the legs and hips for modesty, removing any bulk or discomfort created when sitting on a full dress.
The elastic at the neckline keeps the straps from slipping and gives her more control as she pulls the dress over her head.
The third dress had the requisite full skirt, so I cut it up the back from the hem to just below the waist. I removed the tie at the neck, created a new neckline, and added elastic.
I altered five tops that Sharon bought online, cutting the center back and overlocking the edges. The button is decorative while adding some weight to the front of the garment, keeping the slippery fabric in place and creating an easy-to-use neck opening.
It would be nice to see the fashion industry put more effort into serving the millions of people living with a disability. Not all sizes are equal, and the industry eventually realized that and began offering petite clothing, plus-sized clothing, and even a few tall sizes for women like me. It’s time for industry leaders to recognize the need and to do market research geared towards people living with a disability and not just their caregivers.
An Update
Sharon works for the Veterans Administration or VA, processing a complex payroll of two hundred nurses twice a month. She’s a federal employee, a union member, and a remote worker since 2020.
The Department of Personnel Management issued directives requiring all federal employees to return to in-person work by May. One thousand four hundred employees were dismissed, with more likely to follow. All employees must send a weekly email describing five things they did that week as if they were children in grade school. Further insults to employees at large forbid displaying the Pride flag in any capacity, further clarified as no flag, flag pin, Pride flag on a poster or any other image. The fear, angst, and betrayal among federal employees throughout the country are palpable.
The assault on all we hold dear continues.
Gardening Nirvana 
Those look like excellent adaptations. I have no sisters, but if I did I’d hoped for a bond like yours. And thank you for the gentle highlight regarding employment. We’ve been watching the apparent destruction and setting back of basic rights with horror and hoping that we in the UK can take heed and not emulate the roll back. Sending love
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Thank you for the love, Dawn. That is nice of you to say. Sharon is just 13 months younger than me, but she’s been living with MS for over twenty years. We’ve always been close.
As for the situation in this country, what was once unthinkable is now possible. It feels like a daily horror show of cruelty, corruption, and chaos. I don’t know if our democracy will survive, and with that, I fear the damage that may befall the rest of the world at his careless hands.
Sending love back your way.
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You have done a great job Alys. I agree on the clothing industry needing to open its eyes to its customers! My Mum has shrunk a lot in the last few years and is bent over due to arthritis and finding nice clothes that are not too long, easy to fasten with arthritic fingers etc is so hard for her. Your sister is not alone! Lovely that you have the skills to help her out too. 👍😄
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Thank you, Cathy. I’m sorry to hear about your mum’s challenges. I hope she’s able to get some relief from her arthritis.
Learning to sew in my youth has come in handy again and again and in ways I never dreamed of.
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You’ve done a beautiful job with your alterations, Alys. I am amazed at how your creativity just springs to life! And you’re right, I’m sure there is a great need for line sof clothing that fit the needs of disabled people. I’m sorry to hear your sister is caught in the whirlwind of insanity that is plaguing our government right now. What is happening is beyond belief!
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Thank you so much, Eliza. I learned to type and sew at a time when that’s what girls did. It’s amazing how both have served me in unexpected ways over the years.
What is happening *is* beyond belief. I’ve read dozens fo books over the years about the second world war, and I’ve found myself thiking a lot about that time and the things that led to such horror. I’m struggling to emotionally reconcile the dreadful past with what’s happening now.
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Sharon is lucky to have you in her corner and helping with her clothing needs. We have a loved one in our family that has been dealing with MS for many years. As for the last paragraph, it’s embarrassing what is going on right now. I personally know two other federal employees going through similar issues. So many lives, so many families affected by rash decisions if you can even call them decisions.
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Thank you, Judy. I’m sorry to hear you also have a loved one with MS. It’s an unforgiving, progressive disease, and little has coming along to treat it.
It’s embarrassing and horrifying living in this country when you didn’t vote for this, and fought hard to prevent it. It’s devastating for all but the upper echelons of this absurd administration. The rest of the world must think we’re mad.
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Oh my goodness, Alys, this is a really important post. First of all, I’m so sorry your sister is having to deal with this cruel, debilitating disease. Secondly, you are a wonderful sister. And by describing these clothing alterations and the reasons for them you’re highlighting one of the many challenges people with progressing MS find themselves – and their loved ones and caregivers – dealing with. It’s one thing after another. I hadn’t even thought about the clothing issues. I appreciated this post.
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Thank you so much, Jane. I appreciate your thoughts and kind words. Sharon has Primary Progressive MS, which means she’s never had a remission. She’s been dealing with MS for 24 years. Life is hard enough without further descending into the nightmare that is this country. We do what we can do.
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It’s hard to handle so much suffering, especially the unnecessary kind. Sending hugs.
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Xo
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Alys, what a fabulous job you did for your sister, helping to keep her dignity intact as much as possible. Family is everything! The barriers your sister is facing are cruel, thank goodness she has your support. As for the erosion of rights in your country, especially for the most vulnerable… it is surreal and horrifying. The world is watching and know that this is not what the majority of Americans want. There is growing resistance in the United States and across the world. You are not alone. I wish you and your sister well.
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Thank you, Wilma. We’re both pleased with the results. MS is a cruel disease. Sharon continues to adapt, but her lost independence around personal care has been a real blow.
I’m grateful we could travel to Italy and Canada when we did, as I would be embarrassed to go anywhere now with a US passport. Nearly 50% of eligible voters in this country *didn’t vote* and another 25% voted for Kamala Harris. He hardly has a mandate, but it doesn’t matter. The erosion of rights, the casual cruelty, the unlawful detentions, union-busting, and general dismantling of hard-won gains is so hard to bare. AOC and Bernie are the front-runners, but they can’t do it alone.
Extending my love and appreciation for you and for all things Canadian.
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Hugs.
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such a gorgeous wardrobe of alterations! Even if clothes manufacturers did cater more for people with disabilities, I doubt your sister would find anything so gorgeous and unique on the racks!!!
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Claire, thank you so much for your lovely words. xo
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Such loving care from a skilled sister. The savage administration hasn’t thought anything through
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Thank you, Derrick. Sadly, they don’t care. Democracy is unraveling before our very eyes. I’m devastated.
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I’m sure XX
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As always, so impressed with your creativity and your loving-care for your sister. Really, this post brought tears to my eyes. So glad she can come visit once a week, and that you can alter clothes so that she can dress herself.
As for idiocy and cruelty of the current administration toward federal workers…it really is beyond comprehension. Federal employees work hard, giving so much to this country, and this what they get? Makes me angry to think about it.
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Thank you, Laurie. I’m touched. Sharon enjoys her visits with Queen B and though she misses her day to day, kitty’s health issues and Sharon’s decline make it impractical.
As for the dismantling of our federal government, it’s beyond the pale. I’m still shocked, angry, but mostly sad and scared.
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Sigh.
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I don’t know if this would be helpful moving forward but here’s a link to Fashion is for Every Body’s Adaptive Clothing Resource Guide https://www.fashionisforeverybody.com/adaptive-clothing-resource-guide. With your permission, I’d like to add the modifications you made for Sharon’s garments when the guide is updated.
Fight the Power. The only way through is together!
Alicia Searcy
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Alicia, thank you so much for this. I would be happy to have these modifications shared with people who can benefit from them. Thank you for sharing the link.
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A cruel disease but what a comfort you must be to your sister with your kindness and creativity. She is at least lucky in her relationship with you.
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Lynn, thank you. MS is a cruel disease.
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You are such a kind, caring sister. I love how you have adapted these clothes to make them easier to put on and wear.
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Sue, thank you so much.I strrive to make life easier for Sharon in any way I can.
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Oh, Alys! Your love for your sister has bloomed in the beauty of your creations! She must feel your loving hug every time she gets herself dressed! How beautiful and thoughtful! Thanks for educating us all as well as sharing the “how” for others in need. Second, the plight of all Federal employees makes it hard to breathe. I have adult children whose lives have been suddenly changed, and I am told that the fear of what could suddenly come next is the supercharged atmosphere of the office (or former closet) that employees are currently stuffed into. Terminations were made with such cruelty and malice, and many are disheartened and trying to do their best with so little.
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Thank you [somone] for your kind words. I’m sorry to hear that your children are also suffering at the hands of these cruel and unreasonable cuts. It feels unconscionable. I agree that the cruelty and malace are punising and absurd, and will only make things worse. I don’t know where we go from here. It’s terrifying.
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I hardly know where to even begin, Alys. I’m so touched by your sister’s story, and I also admire your talent and ability to provide stylish, beautiful clothing that must give her some pleasure! To hear that caregivers would even think to charge anything at all for helping her dress is distressing to me. But the love and care you provide in order to help your sister maintain some well-earned independence is a joy to read.
As far as her job and the total indignity that thousands of our federal workers are experiencing infuriates me as well as breaks my heart. I’m angry, and yet I could sit in a corner and have a good cry at the same time, alternating with steam coming out of my ears. Saying the words, “I’m so sorry” sounds absolutely insufficient. I just don’t have a vocabulary that fits the times we are living in. I have some words, surely, but I won’t publish them on your site. Feel free to imagine! 💔
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Debra, thank you for your always-thoughtful words and perspectives. I’m with you on the inadequacy of words that meet the moment. I should regain my anger, but I’m mostly feeling a tremendous sadness and a gut-wrenching fear. It’s not a happy place to be.
My sister is 13 months younger than me. She’s been fighting MS for over 22 years, and now deals with secondary issues as a result of her immobility. Dealing with the dismantling of our government is yet another blow.
I like coming up with solutions, so working to find a way to alter dresses and tops for Sharon’s ease of dress and desire for style presented a unique challenge.
I think of you often as you work through your grief, and I dearly with you didn’t have to carry the additional burden of a country in crisis.
Hugs
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I really do appreciate your sensitivity towards me, Alys. This month marks one year since my husband passed (end of month) and if I’ve learned anything at all, it is that grief cannot be contained just to matters of death. Loss of health, loss of mobility, and the loss of independence, as your sister experiences, absolutely must be acknowledged as a very painful life reality. And for a loving sister, it’s painful for you, too
I think we really need to as a society think about these “losses” and how to aid…but sadly, we had an Administration seemingly incapable of acknowledging human dignity. I honestly think of you often, too. I do care about your sister. 💔
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Debra, you are wise and understanding, two beautiful qualites so often in short supply. Thank you for acknowledging the grief of any profound loss, not just the horrible finality of death.
I will hold you in my thoughts as this month progresses. The year of “firsts” after a death are emotionally exhausting as they bring to the forefront all we’ve lost, what we miss, and the need to keep moving forward. Arms around you. XO
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What a nice job you’ve done for your sister. It’s appalling that her care home wants to charge an additional $500 just to help her dress! I’m sure she pays enough as it is, for heaven’s sake! And I’m sorry she’s got the additional worry now about what may happen with her employment. Best wishes to her.
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Thank you, Kimberley. I’m happy that these clothing adaptions worked well, and have laid the ground work for future alterations. She pays more money to live in assisted living than any of us could dream of and the nickel-and-diming they do is insulting. I’ve had to adovacate on her behalf, push back on the nonsense, and somehow keep it together.
As for the job and government nonsense, it’s ongoing and exhausting. Her boss has asked her to get a notice from her doctor explaining Sharon’s disability in order to allow her to still work remotely. I really appreciate your understanding.
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You did a magnificent job of the alterations. It’s nice that you were taught those skills you never knew how much you would need later.. Funny how those things work out. Your work as a costumer set this all in motion. My heart hurts for Sharon. My neighbor, Gene, is still not as disabled as Sharon and I can see a hundred things a day that he can’t do but I can. TS changed the battery in the smoke detector this week for him. Operating a fire extinguisher is impossible. I count my blessings every minute of the day. We were taught or learned to feel empathy. That’s what’s missing in our government now. It doesn’t exist. I don’t dare go down this path. Crystal sent photos of her and her S.O. protesting in Oregon. (trying to be protective here) I wish I could be the driver of 45’s karma bus. The fallout IS worldwide. Give Sharon hugs for me and know that I’m thinking of you both daily. Our work is never done. Love and hugs to you all. M
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Thank you for all the good cheer, Marlene. I’m sorry to hear that Gene is still not getting the support he needs. It’s wonderful that you and your son can and have stepped in for so many things that make Gene’s life a bit easier.
I found this interesting:
Empathy is a complex trait influenced by both innate biological factors and learned experiences, meaning it’s neither solely innate nor entirely learned, but rather a combination of both.
Innate Capacity:
Research suggests humans have a biological predisposition for empathy, with specific brain regions, like the mirror neuron system, activated when observing others’ emotional or painful states.
Learned Behavior:
Empathy’s development and expression are significantly shaped by social and environmental influences, including family upbringing, cultural values, and societal norms.”
My take on this is that we’re wired for empathy, but if not cultivated, valued, and expressed, etc. by our caregivers, or worse, shown the opposite, things can go horribly wrong. One need only look to the father’s of the orange one and the world’s richest man to see where that can lead.
Hugs right back your way and a hug from Sharon, too.
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Oh, Alys! Such a beautiful story of sisterly love! Your sewing skills and creativity are just two of the many, loving gifts you and Sharon share together. I’m so glad that you have one another and are able to enjoy your Sunday visits, my friend! All of your adaptive clothing designs are so lovely. I’m sure that Sharon feels all of the love that is stitched into each beautiful, one-of-a-kind design! Our hardworking, federal employees deserve our gratitude… not the treatment that they are currently receiving. Know that I am holding you and Sharon close to my heart every day! 🩷 Dawn
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Thank you, Dawn for your always-kind, thoughtful words.
Sharon is just 13 months younger than me. While I’ve remained able-bodied, MS has robbed her of strength and mobility, reduced her independence, while increasing her risks for things related to immobility. You find the fun where you can. Sharon recently bought three brimmed hats in purple, red and black. They keep her warm and add a lovely flare. Thank you for your well wishes.
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Brava, Alys! I can no longer dress myself, either, so I appreciate anything that’s easy and fashionable. I commend you for your ingenuity and will be adding these modifications to the Adaptive Clothing Resource Guide as we expand its content in the coming weeks. Please remember, this guide is free to download at https://www.fashionisforeverybody.com/adaptive-clothing-resource-guide
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Thank you! I’m delighted to have these alterations added to your valuable guide.
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Your dedication to empowering your sister through thoughtful alterations is truly inspiring. By modifying off-the-rack dresses and tops to suit her needs, you’ve not only preserved her independence but also highlighted the importance of adaptive clothing that combines functionality with style. Your efforts underscore a pressing need for the fashion industry to offer more inclusive options that cater directly to individuals with disabilities, rather than focusing solely on caregiver-assisted designs.
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I am so sorry to read your sister is impacted by the stupidity and evil going on is Washington. I do not see how they are getting away with this.
You are so wonderful to explore adaptive clothing options for her! I agree the fashion industry needs to focus on stylish clothes for more groups of people!
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Thank you for your supportive words.
Like you, it’s unimaginable to me that he’s running amok and getting away with it. He has to be stopped. The question is how and how soon it’s depressing and horrifying.
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