Wednesday, June 04, 2025

New Mobility, Health & Wellness

NEW MOBILITY HEALTH & WELLNESS
May 2025 - View in browser

THIS MONTH: BETTER SLEEP AS A WHEELCHAIR USER

I used to sleep great. Even post-SCI I could sleep 9-10 hours a night, no problem. But recently, as I’m pushing into middle age, I find getting a solid night’s sleep a lot harder than it used to be. I know I’m not alone.

Our editor-in-chief, Ian Ruder, has written about his own sleep battles multiple times and our previous editor, Tim Gilmer, has done the same. If you’re a wheelchair user, there are a host of complications and secondary conditions that can disrupt your sleep: spasticity, chronic pain, and sleep apnea are just the most common antagonists. Add neurogenic bladder, compromised temperature regulation, overnight repositioning, and autonomic dysreflexia to the mix, and it’s a wonder wheelchair users sleep at all.

But, of course, we do. Sometimes hard, sometimes in spurts — it all depends on what you currently have going on with your body and your life. Figuring out your personal recipe for better sleep isn’t easy, but if successful, it will undoubtedly improve your life.

We’ll first look at the disability-specific tactics many wheelchair users need to manage in order to improve their sleep, and then look at the routines and lifestyle habits that can get you closer to a restful night’s sleep.

DISABILITY SLEEP COMPLICATIONS

If you have a disability that affects your upper body as well as your lower, there’s a good chance you experience sleep-related breathing problems. According to sleep medicine researcher Dr. Abdulghani Sankari, “At T6 and above, the prevalence is above 80%. It is higher in the cervical [injuries] up to C4," he says, "up to 90%.”

Those shocking numbers appear in a new article by John Mohler, “Better Nights, Better Days: CPAP, BiPAP and Disability,” which looks at the problems caused by sleep apnea and the treatments available. Mohler uses a power wheelchair because of multiple sclerosis, and his story provides a few valuable takeaways.

First, many wheelchair users don’t realize they have sleep apnea because the typical symptoms mirror those of other issues we deal with on a regular basis. Second, though treatments like CPAP and BiPAP can be cumbersome and annoying in terms of accessibility, they can provide real relief. “After my first full night with the CPAP, my daily 20-minute nap disappeared, and I haven’t had one since,” says Mohler. “Slowly but surely, I graduated to long, peaceful nights and better, safer sleep.”

Another common sleep disrupter is spasticity. Figuring out how to manage spasticity is often a balancing act — too many oral medications can cause drowsiness during the day, but aggressive spasms when you lie down can wake you up throughout the night, leaving you just as drowsy the next day. For some wheelchair users, baclofen pumps can provide a balance that nothing else can. Even then, creativity might be necessary. Alex Ghenis used to wake up from dysreflexia caused by spasms twisting his hips, until he figured out how to use a snowboard strap and a towel to secure his legs in bed.

Other issues? Tim Gilmer writes about how chronic pain can ruin sleep and how the right mattress and mindset can help you rest even when sleep doesn’t come easily. For some wheelchair users, CBD — and sometimes THC — can help calm the mind and the body enough to improve sleep quality.

For quads, temperature regulation can be a major problem: too hot, too cold, always awake. Throughout the winter, I’ve found that sleeping with a heating pad on my neck and shoulders does wonders — just make sure you have the pad where you can feel it, as burns happen. There are now a variety of fancy mattress temperature-control products available as well, from a $440 heating and cooling fan system for your sheets, to a $2,500 AI-controlled, water-pumped mattress pad that claims to keep you at your preferred temperature no matter what the air temp in your room is.

FUNCTIONAL FITNESS

Dancing for Better Sleep
We'll dive deeper into lifestyle habits in the next section, but first, let's dance. For real, consistent daily activity is one of the best things you can do to improve your sleep quality. Experts recommend at least 30 minutes of moderate aerobic activity. That can be difficult for people who don't have access to a gym or adaptive exercise equipment, or just get bored with typical workouts. This video from BORP Adaptive Sports and Recreation is high energy, requires no equipment and features wheelchair users of different levels of functional ability.

CHANGE YOUR LIFESTYLE, CHANGE YOUR SLEEP

Of course, even if you manage all your disability-related sleep issues, it’s possible that you’ll still have trouble falling asleep or staying asleep. Just ask my wife. She’s severely able-bodied and sleeps worse than I do. Disability aside, some people just have a harder time sleeping than others.

If this is the case for you, it’s likely that you’ll need to adjust some of your daily habits to try and improve your sleep quality. C5-6 quad Brian Swift went through a stretch where he was only sleeping a few hours a night. He first tried using sleeping pills and melatonin to help him sleep, but they had no effect. “It wasn’t until he started to change the way he lived that Swift began to see results,” writes Alex Ghenis. “His doctor suggested avoiding midday naps, keeping off his phone and computer starting a half-hour before bedtime, and tiring out his mind and body so he was exhausted by bedtime.”

Those lifestyle changes helped with Swift’s sleep in a way that medications didn’t, and his adjustments are backed up by modern sleep research, which, unfortunately, is still limited to the experience of nondisabled sleepers. Beyond consistent daily physical activity, here are a few things that experts recommend for improving sleep quality:

Put down the screen at least 30 minutes before bedtime. Read a book, practice breathing exercises, do some gentle stretching. These activities can help calm your mind and body and help you fall asleep faster.
Limit alcohol intake. A drink with dinner, no big deal. But a few glasses of wine or a night at the bar is going to affect your sleep. You may fall asleep quickly after drinking, but alcohol intake can lead to more broken sleep in the back half of the night.
Stop with the afternoon coffee. I drink coffee every day, but as I get older my sleep is more affected by timing. According to a Cleveland Clinic article: “Six hours after caffeine is consumed, half of it is still in your body. It can take up to 10 hours to completely clear caffeine from your bloodstream.” Try and keep the caffeine to the mornings if you want to sleep better at night.

NUTRITION TIP

Making Cooking Easier as a Quadriplegic with the Thermomix
Joanne Smith, a wheelchair user and certified nutritionist who works with clients with disabilities, knows firsthand how difficult it can be to make home-cooked meals when you have limited hand function. She uses the pricey Thermomix multi-cooker to make one of her favorite meals, and swears that the ease is worth the cost.

The Health & Wellness newsletter is written by Seth McBride. A C7 quad since 2000, McBride is drawing on two and a half decades of personal experience, seven years of disability reporting experience, and a deep archive of New Mobility content to translate complex health and wellness topics into a monthly narrative newsletter with something for everyone. Whether you like the format and want to let us know, see something we missed or want to suggest a topic for us to cover in the future, please reach out or respond to this email.

New Mobility publishes member content for United Spinal Association, whose mission is to improve quality of life of people with spinal cord injuries and all wheelchair users. It's free to join United Spinal. Join here.

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ABLE SC, Perspective

For Disabled Parents, Mother’s and Father’s Day Often Come After a Fight

Friend,

The disability community continues to face discrimination in becoming and remaining parents. It shouldn’t take a legal battle just to celebrate these days.

Mother’s Day has passed. Father’s Day is around the corner. These holidays are meant to honor the love, sacrifice, and joy of parenthood. But for many in the disability community, these days don’t come with ease or celebration. They come with barriers, stigma, and the emotional toll of navigating a system that too often says: “You don’t belong here.”

Kimberly and her son smile together. Kimberly is a white woman with glasses. Carter is a teen boy wearing a yellow hat.

When my husband and I decided to start a family, I already knew it would be an uphill battle. I survived stage 4 cancer as a child, but the treatments left me infertile. On top of that, I faced years of shame from religious norms, societal expectations, and even those who saw me as less-than because I couldn’t carry a child. My husband was also told not to marry me because I could not carry a pregnancy.

Still, I didn’t give up. We tried egg donation and surrogacy with the help of a generous friend—both attempts failed. So we turned to adoption.

But the doors kept closing. International adoption was out—countries like China and Russia denied us simply because I’m disabled. Domestic adoption through the child welfare system wasn’t much better. We were wrongly told I couldn’t adopt because of my disability.

What they didn’t count on was that I’m also a disability rights advocate. I fought back using Section 504 of the Rehabilitation Act and the Americans with Disabilities Act—and we ultimately adopted our beautiful son.

That experience opened my eyes to a disturbing reality: at the time, South Carolina had a law allowing a child to be removed from a parent solely because of their disability. Through my work at Able SC, I kept hearing stories—disabled birth parents losing their children at the hospital, families ripped apart not for neglect, but because someone assumed they couldn’t parent. Sometimes the baby was taken before they even made it home.

We fought back—and we changed that law.

In May 2017, South Carolina passed the Persons with Disabilities Right to Parent Act, making it illegal to discriminate against disabled people in birth, adoption, custody, and child welfare decisions. The law requires agencies to provide accommodations, recognize adaptive parenting, and use every effort to keep families together. South Carolina became the 17th state to pass such protections—others have followed our lead. Look at South Carolina showing leadership around this issue!

But the fight isn’t over.

Across the country, disabled birth parents and prospective parents still face steep barriers. Agencies make decisions based on assumptions, not evidence. Children are removed simply because a parent uses a wheelchair or has a developmental disability. Families are judged for how they parent differently, instead of being supported.

That’s why we’re fighting at the federal level. The updated Section 504 regulations from HHS require child welfare systems to stop discriminating, to provide accommodations, and to recognize disabled people as capable parents.

And yet 17 state attorneys general are suing to block these regulations. South Carolina’s attorney general as well. Their message is clear: they don’t believe disabled people should have equal rights to raise families. That’s what we’re still up against.

So as we move from Mother’s Day to Father’s Day, let’s remember: for many in the disability community, these aren’t easy holidays. They are reminders of what it took, or what it still takes, to become and remain a parent in a system stacked against us.

A Challenge to You-

This season, expand your view of what it means to be a parent.

Celebrate those who fought through infertility. Those who adopted or fostered. Those who lost a child to bias and are still fighting to reunite and make their family whole again.

Celebrate disabled parents whose love, creativity, and resilience often go unseen.

And if you know someone who’s navigating infertility, discrimination, or loss this time of year, check in on them. Remind them they are worthy and that their journey matters.

Because love, not ability, not biology, not bias, is what makes a family.

Meet two of my favorite disabled parents, Stephanie and Ryan. They’re incredible foster parents, and Stephanie recently gave birth to triplets! Their love and dedication as parents are unmatched. Haters—stop judging what you don’t understand. Their parenting is exceptional.

I'll leave you with a few resources from Able SC about your rights as a disabled parent, representing disabled parents for attorneys, and the rights of parents that DSS and Child Welfare Professionals need to know:

Parenting with a Disability Resources:

- Kimberly Tissot, President and CEO, Able South Carolina

Kimberly is a white woman with shoulder length blonde hair with bangs. She is wearing brown rounded rim glasses, gold teardrop earrings, and gold necklace with a red shirt, black blazer, black pants, and gray ballet flat. She has one leg and uses crutches to assist her as she stands on a sidewalk in front of greenery, smiling for the camera.

Messages from our CEO:
Kickin' It with Kimberly

It’s important to us that we keep you well informed of current issues and barriers impacting people with disabilities. Our CEO, Kimberly Tissot, knows that you are central to our efforts to promote disability rights, justice, and freedoms. Letters will be written to you, your key supporters, about the injustices we find and the keys to the solutions we can offer as a disability-led organization.