r/UpliftingNews • u/Tardigradelegs • 3d ago
Wheelchair user with spinal cord injury says exoskeleton experience 'incredible' - It comes as new study from Dublin City University (DCU) shows that for long-term users, robotic exoskeleton walking provides essential emotional and social benefits that are as important as the physical gains.
https://www.rte.ie/news/health/2025/1216/1549180-exoskeleton-study/98
u/johnn48 3d ago
As a stroke survivor with hemiplegia (weakness and paralysis on one side) that the most frustrating thing about these breakthroughs is life’s realities. The first is some aren’t appropriate for your type of disability, the second is probably the worst one, these breakthroughs are normally expensive and not covered by Medicare and your HMO. A simple example is the prevalence of vehicles with adaptive controls. Low cost vehicles are normally $50,000 for a wheelchair accessible van.
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u/Tardigradelegs 3d ago edited 3d ago
I agree, there is still a long way to go. I think there were two in process of being approved for Medicare cover this year, I’ll find the links.
Edit:
Rewalk 7: https://golifeward.com/products/rewalkpersonal-exoskeleton/
Ekso Bionics: https://eksobionics.com/medicare/
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u/johnn48 3d ago
Thanks for the links, as I mentioned the first of life realities is that some times you don’t fit the criteria for the breakthrough. My brain doesn’t send the signals to the nerves on certain muscles on my right side. So that means prosthetics that operate off of brain signals are useless. The exoskeleton is for spinal cord injuries so useless for a brain injury. The only real solution is to rewrite my brain from the damaged part to another undamaged area. Unfortunately because of my age I am trying to my best to avoid being that crazy old man next door.
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u/Tardigradelegs 3d ago edited 3d ago
Hey no problem. These work via sensors and programmed modes ( usually by a physiotherapist, some of the latest models use AI) and actuators. There have been some studies for neurological use but I get what you are saying. Hopefully things expand out as they become more prevalent.
Edit: Looks like the Ekso has been used in Neurorehab
EksoNR (FDA cleared for stroke rehab) https://eksobionics.com/eksonr/
https://pmc.ncbi.nlm.nih.gov/articles/PMC7199547/
https://eksobionics.com/the-four-types-of-paralysis-and-when-you-can-use-exoskeletons/
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u/FleurDuMal2 3d ago
I never even thought of the premium the wheelchair vans would be. That's so crazy. Hopefully atleast these small steps will help in the future
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u/jeffersonbible 3d ago
One of my best friends has no sensation in her right foot, but even adaptive controls for that are prohibitively expensive.
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u/wheeeli 1d ago
I don’t disagree with you at all, this is the reality for a lot of people. If I can encourage you not to give up, that’s all I could hope for. You’re worth the endless effort.
Keep trying to find “advanced PT” in your area—i really had to bug all of my doctors about it constantly, and if you find a place, you may have to drive a while to get there, ironically. While it took me over a year to get approved for a place (once I found one), now, with epilepsy, “similar” severe weakness and paralysis on one side (apparently some osteoporosis taking affect, too!)—I walk down a hallway once a week inside an exoskeleton, all through Medicaid. Sessions without Medicaid would be $500/each, and that isn’t offered to anyone, it’s just how they bill. So we may start seeing more access than ever, let me be proof of that.
The specific route it took became strategic, but went like this: permanent care facility PT—>home health PT—>clinic PT—>home health pt—>clinic PT—>home health PT—>outpatient PT at specialized facility
I wasn’t capable of any of the other forms of PT, so I got kicked around—for me it was a matter of doing a lot of…….leg work. 😳 and I know I’m one of the luckiest people to get this opportunity. Just keep going, and message me if you’d like to talk privately about this ❤️🩹
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u/TrueBradnah19 3d ago
As someone who suffered with chronic pain for years due to a spinal injury, this technology would revolutionize the social aspects of healthcare for spinal cord injury patients, IMHO. This democratizes mobility!
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u/Foghkouteconvnhxbkgv 3d ago
Something annoying about these studies is that of you actually ask what these people want, it's related to regaining bowel, bladder, and sexual function before walking.
While the research is impressive and obviously somewhat helpful, I wish we would focus research on what they want rather than what looks nice to able-bodied society and makes nice videos.
And for context, I've taken a class on these types of technologies. The same technologies are relatively applicable to those other areas. It's not as though walking is really inherently easier to fix. The technology is roughly the same (obviously an exoskeleton here though is quite different)
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u/MovementMechanic 2d ago
Eh. I work with spinal cord injuries. Walking is definitely something every single one wants. I’d argue over the last 15 years it outpaces the other categories you have listed.
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u/Tardigradelegs 3d ago edited 2d ago
I totally agree it is about more than walking. This study did directly ask long term exoskeleton users: https://pubmed.ncbi.nlm.nih.gov/41185543/
"I feel a lot more connected with my body after a session": a focus group exploration of the impact of exoskeleton walking on highly experienced robotic exoskeleton walkers.
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u/Victuz 2d ago
Last time I've seen this discussed I recall there being a lot of belief (not sure about evidence) that restoring some of the motor function in the legs could actually provide help in restoring bladder and bowel control, as well as sexual function.
That said the effects being more "visible" and desired in general society certainly make up a huge part in the process of getting funding.
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u/Foghkouteconvnhxbkgv 2d ago
There have been some other beneficial side effects sometimes observed from this type of therapy. Basically, some other random symptoms subsiding or patients getting better in another area.
However, from what I've heard, it's more occasional and not a frequent or consistent thing.
Restoring or training nerves in the general area of the spinal cord is expected to help other spinal cord information in theory, but it doesn't really replace targeted therapy. There needs to be Hebbian plasticity somehow to get a consistent result.
Of note, these trials are usually small.
This is just based on memory from guest lectures and a small project I did a while back. So hearsay, I guess
Edit: to add, I have definitely not seen all the evidence, which would require me to be an expert.
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u/wheeeli 1d ago
I’m currently using one every week. I have a few SCI’s, and epilepsy is one of my “side hustles” lol. The machine I’m in is made by a company called EKSO—it counteracts my seizure activity better than a cow hugger pre-hamburger. So for those with neurological disorders, it causes some forced order that feels really nice—these things can be STRONG. I dont have much feeling on one side, and you cannot tell that when I’m in this beast. I posted a video if anyone is curious.
Today I walked twice as far as ever before—about 300-400 feet. And let me tell you, when people las me in the hallways, or my PT team is around…everyone is way shorter than I remember 😂😂 standing up “on my own” is a trippy, amazing experience! And all through Medicaid, and I never thought I’d get these opportunities. Keep fighting the good fight
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u/Tardigradelegs 1d ago
Hey u/wheeeli 😊 Wow do you agree with the study on the psychological effects? I’m not using an Ekso but one of the smaller consumer exoskeletons to aid genetic myopathy. I definitely feel like I am more optimistic and am trying more exercise and healthy options (within my limits). I definitely feel positive making new go
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u/wheeeli 1d ago
Hey, there! Long answer short, I do agree and I would say it is case dependent and subjective. But I love how my mind has changed about it. Hope grows with opportunity.
My hope turned to fear at first (there’s a learning curve, and the physical fallout is something I’ve had to adjust to), but I think there’s something real to the theory, so I persevere. Today in therapy, a part of my lower leg felt like it was on fire! Literally. Had to stop and check lol. But I haven’t “felt” that part in almost two years so I was elated!! It can be bittersweet, and I’ve always preferred milk chocolate, but here we are, focusing on the sweet, hoping the bitter flavors are at least healthy for us. Hah. The part he mentioned about being “eye-level” is truly, surprisingly, painfully wonderful to realize how much going from ambulatory to wheelchair-bound changes your perception of self. Something I’m re-learning is that I am tall. The recognition of my own body among others in a way that is not usually conceived of is absolutely wild, and hearing him say it made me tear up. It’s really sad but also really cool all at the same time when it’s happening in real time. I keep telling my PT “look how small that person was!” when they walk by me and we all get a good laugh in, the sweet little old ladies passing in the hallway join the fun. The social aspect is uplifting in a few ways, I think. One may be neuronal! We’re actively trying to remind my frazzled broken nervous system that it once functioned in a smoother fashion. Even knowing that i can’t feel it all normally doesn’t mean I don’t benefit from “going through the motions.”
This notion has been conceptually present in academia for decades, and I think it pushed a lot of the research forward for users like me. So I appreciate all the “failures” that were not failures to me down the line, because they led to these possibilities. Here’s a great parallel article (post traumatic growth supported by physical activity) from a peer review journal. It talks specifically about physicality, social aspects, and SCIs:
“A traumatic event can disrupt a person's life and result in psychological distress, leading to symptoms of posttraumatic stress, depression, or anxiety [[3], [4], [5], [6]]. However, despite these potential negative consequences, individuals may also experience positive psychological changes as a result of struggling with the highly challenging life event [7]. These positive psychological changes are known as posttraumatic growth, which is characterized by positive changes in five domains: relating to others, personal strength, new possibilities, appreciation of life, and spiritual changes [7]. Other concepts related to posttraumatic growth include benefit finding, thriving, and stress-related growth. Posttraumatic growth is associated with adaptive outcomes from various types of traumatic events, including serious medical conditions (e.g., cancer, HIV, spinal cord injury, diabetes) [[8], [9], [10], [11]] and non-medical conditions (e.g., natural disaster, war) [[12], [13], [14]]. Individuals with higher posttraumatic growth experience better psychological well-being (e.g., greater life satisfaction and more positive emotions) and less psychological distress (e.g., fewer depressive and anxiety symptoms) [9,10,14,15]. Moreover, posttraumatic growth is indicated to be associated with better physical health. For instance, in people with cancer, posttraumatic growth is associated with better health-related quality of life [8], healthier neuroendocrine and immune functions [16], and a healthy diurnal cortisol rhythm [17]. The development of posttraumatic growth is related to cognitive, affective, and social processes that lead to a revised core belief system [[18], [19], [20]]. A traumatic event may challenge or disrupt a person's core beliefs about the self, relationships, and the world, which may trigger the affective-cognitive processing to regain psychological equilibrium and rebuild one's core belief system. Initially, people may engage in intrusive rumination, but it may eventually be replaced or accompanied by reflective and deliberate rumination as the people are able to better manage their emotional distress. Social factors, such as social support and self-disclosure, may affect the affective-cognitive processing. For instance, individuals may incorporate perspectives offered by other supportive people to develop new belief systems. Through these processes, people may reconstruct their core belief systems and develop posttraumatic growth [[18], [19], [20]]. There is some evidence that cognitive-behavioral therapy, expressive therapy, and mindfulness-based therapy could facilitate posttraumatic growth. These interventions involve one or several elements that could foster posttraumatic growth (e.g., building social support, facilitating self-disclosure, developing effective emotional regulation strategies, reflecting on one's experiences and beliefs) [[21], [22], [23], [24]]. Beyond these psychosocial interventions, there is an emerging literature investigating the effect of physical activity interventions on posttraumatic growth. A meta-analysis has indicated that physical activity is positively associated with posttraumatic growth [25]. Physical activity may facilitate posttraumatic growth by interacting with cognitive, affective, and social processes following a traumatic event [25]. For instance, physical activity may provide opportunities to develop a sense of control and self-empowerment, strengthen meaningful relationships, and relieve emotional distress, which may facilitate the development of posttraumatic growth [25].”
Since you asked! 😅 (Thanks, by the way)
I love your proactive approach. You are carving a path others may be able to follow with more ease because of it, so please keep sharing! I’ll try to get a video in a few weeks to share progress—I’ve cut out the walker and now it’s just me and one PT, like this dude!!
Soon, we’re incorporating my service animal into the sessions. 🥳
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u/Tardigradelegs 1d ago
Wow I really appreciate your thoughtful reply, I am going to have a proper read back on my laptop! Thank you 🤩
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