Posts Tagged cerebral palsy

[ARTICLE] Research Status and Emerging Trends in Virtual Reality Rehabilitation: Bibliometric and Knowledge Graph Study – Full Text

Abstract

Background:Virtual reality (VR) technology has been widely used in rehabilitation training because of its immersive, interactive, and imaginative features. A comprehensive bibliometric review is required to help researchers focus on future directions based on the new definitions of VR technologies in rehabilitation, which reveal new situations and requirements.

Objective:Herein, we aimed to summarize effective research methods for and potential innovative approaches to VR rehabilitation by evaluating publications from various countries to encourage research on efficient strategies to improve VR rehabilitation.

Methods:The SCIE (Science Citation Index Expanded) database was searched on January 20, 2022, for publications related to the application of VR technology in rehabilitation research. We found 1617 papers, and we created a clustered network, using the 46,116 references cited in the papers. CiteSpace V (Drexel University) and VOSviewer (Leiden University) were used to identify countries, institutions, journals, keywords, cocited references, and research hot spots.

Results:A total of 63 countries and 1921 institutes have contributed publications. The United States of America has taken the leading position in this field; it has the highest number of publications; the highest h-index; and the largest collaborative network, which includes other countries. The reference clusters of SCIE papers were divided into the following nine categories: kinematics, neurorehabilitation, brain injury, exergames, aging, motor rehabilitation, mobility, cerebral palsy, and exercise intensity. The research frontiers were represented by the following keywords: video games (2017-2021), and young adults (2018-2021).

Conclusions:Our study comprehensively assesses the current research state of VR rehabilitation and analyzes the current research hot spots and future trends in the field, with the aims of providing resources for more intensive investigation and encouraging more researchers to further develop VR rehabilitation.

Introduction

In recent years, the number of people with rehabilitation needs has increased, particularly among groups of older patients, patients with disabilities, patients with chronic diseases, and patients with functional and cognitive impairments. The loss of movement, sensation, balance, and cognition, as well as other aspects, seriously affects patients’ quality of life, work, study, and social life [1,2]. Such patients require long-term, consistent rehabilitation training and guidance [3]. However, traditional rehabilitation training has a number of problems, including fixed rehabilitation centers, a lack of rehabilitation resources, uninteresting training processes, high treatment costs, and a lack of automatic guidance and incentive mechanisms. These result in a lack of confidence in the rehabilitation process, which in turn affects the outcomes of rehabilitation treatments [4,5].

With the gradual popularization of virtual reality (VR) technology, rehabilitation training systems based on VR technology have been gradually applied in sports, exercise, and functional rehabilitation for various diseases and have achieved positive effect results [6,7]. The combination of VR technology and rehabilitation medicine can enable more patients to train regularly at home or in the community, as VR rehabilitation systems provide an immersive experience that stimulates patients’ interest and improves their participation, thus overcoming the disadvantages of fixed centers and the lack of resources [8]. Furthermore, VR rehabilitation systems can sense and record a patient’s movement and biological data via sensors to further improve existing rehabilitation programs [9]. This rehabilitation technology is a useful supplement to traditional rehabilitation and is a promising new research direction in the field of rehabilitation medicine.

A comprehensive bibliometric review is required to help researchers focus on future directions based on the new definitions of VR technologies in rehabilitation, which reveal new situations and requirements. Although bibliometric methods have yielded positive results in a variety of fields, we found that there is still a significant gap in the research on VR rehabilitation and its development trends by using bibliometric methods.

We used bibliometric methods to analyze SCIE (Science Citation Index Expanded) papers on studies related to VR rehabilitation research. Articles from different countries, regions, and research institutions were included. We identified papers in journals, gathered the top 10 citations, and enumerated how many times these citations were used. The VR rehabilitation knowledge base was analyzed by grouping authors’ co-occurring keyword networks. Burst citations were used to identify research hot spots on this topic, which could provide a useful reference for future research [10,11]. These analyses will provide rehabilitation specialists with a macroscopic understanding of the knowledge domain as a whole, as well as a microscopic characterization. Compared to other reviews, our study is timely and visual and provides an impartial approach to developing and exploring particular knowledge domains. Our findings may encourage more researchers to conduct additional research in this field to further develop VR rehabilitation methods. The following basic information was gathered from studies: titles, abstracts, author information, institutions, countries, regions, keywords, and citations.[…]

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Figure 6. The dual map overlay of journals that contributed to publications on virtual reality rehabilitation.

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[WEB] The Bobath Concept for Cerebral Palsy and Stroke Rehabilitation

The Bobath approach, also known as Neurodevelopmental Treatment (NDT) is widely used for cerebral palsy and stroke rehabilitation, but it’s not supported by good evidence.

Harriet Hall on October 18, 2022

In the US, the Bobath Concept is known as Neurodevelopmental Treatment (NDT). Patients with cerebral palsy, stroke, and other central nervous system pathology have dysfunction in posture and movement resulting in limitations of functional activity. The Bobath approach is individualized and continues to evolve. It is based on the brain’s neuroplasticity and is multidisciplinary, involving physical therapy, occupational therapy, and speech and language therapy.

Cerebral palsy

A 2013 systematic review of systematic reviews concluded “Consequently, there are no circumstances where any of the aims of NDT could not be achieved by a more effective treatment. Thus, on the grounds of wanting to do the best for children with CP, it is hard to rationalize a continued place for traditional NDT within clinical care”. They consequently recommended “ceasing provision of the ever-popular NDT”.

A systematic review in 2019 found:

…the effects of neurodevelopmental treatment for children with cerebral palsy are still uncertain. Further studies are required to assess the efficacy and safety of neurodevelopmental treatment for this purpose and until there, current evidence do not support its routinely use in practice.

Small studies have supported it. A small study in 2020 found the Bobath technique more effective than conventional therapy for treatment of cerebral palsy. A small study in 2022 found a correlation between trunk control and oral motor functions in children with CP, with improvement of feeding and swallowing activities.

A protocol for a Cochrane review published in 2015 was developed because “there is no evidence that NDT can promote functional improvement of children with cerebral palsy”.

Stroke rehabilitation

A systematic review from 2009 published in the journal Stroke compared the effectiveness of Bobath therapy to conventional treatments for stroke and found no evidence of the superiority of Bobath therapy over other treatments for stroke for sensorimotor control of the upper and lower limb, dexterity, mobility, ADL, HRQOL, and cost-effectiveness. It found methodological shortcomings in the studies reviewed and called for more research.

Current status

The Bobath approach is widely used for stroke and cerebral palsy, despite the lack of good evidence for its efficacy. The Neuro-Developmental Treatment Association (NDTA) continues to offer certification in NDT. Some European countries consider the Bobath approach obsolete and no longer teach it.

Conclusion

The Bobath approach seemed promising, offering practical, individualized, multidisciplinary interventions to improve function in cerebral palsy and stroke rehabilitation. But the evidence from scientific studies has not validated its superiority over other treatments. More high-quality research is needed.

Author

Harriet Hall, MD also known as The SkepDoc, is a retired family physician who writes about pseudoscience and questionable medical practices. She received her BA and MD from the University of Washington, did her internship in the Air Force (the second female ever to do so),  and was the first female graduate of the Air Force family practice residency at Eglin Air Force Base. During a long career as an Air Force physician, she held various positions from flight surgeon to DBMS (Director of Base Medical Services) and did everything from delivering babies to taking the controls of a B-52. She retired with the rank of Colonel.  In 2008 she published her memoirs, Women Aren’t Supposed to Fly.

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[WEB] Breaking Taboos Around Disability And Periods

A calendar showing a month with 7 days marked in red and a sanitary towel next to it

Breaking down taboos around disability and periods

Disabled people have periods – it happens. Some may have easy menstrual cycles whilst others may experience trickier periods, with heavy bleeding, abdominal pain, nausea, vomiting, dizziness, anaemia and much more – no matter what their disability or health condition.

Our writer, Emma Purcell, spoke to the disability community to find out about their experiences of having periods, including accessing contraception, sanitary products and public toilets, dealing with symptoms, having periods while using catheters, relying on support during periods and other people’s attitudes and misconceptions.

Contraception and healthcare professionals’ perceptions

Many disabled and non-disabled people use contraception to control their periods because they can be extremely heavy, painful and/or cause frequent and severe incontinence. The types of contraception used can vary depending on a person’s situation and physiology.

Unfortunately, disabled women sometimes face additional challenges when it comes to accessing contraception and medical support due to judgments and preconceptions from health professionals.

Birth control is not seen as important for disabled women

One woman told us about the benefits of an Intrauterine device (IUD), also called a coil, for her situation, but that she also received discriminatory comments from a male doctor.

“I manage much better since I had a coil fitted. I have Fibroids (non-cancerous growths that develop in or around the womb), so I needed something to prevent the awful flooding I was having to deal with.

I had a bad experience with a doctor who was meant to be fitting my replacement coil. When I turned up to have it done he asked, ‘Do you need a replacement coil?’ I said, ‘Yes please.’

He then looked me up and down and said, ‘Why, you don’t have sex?’. He had clearly made an automatic assumption that I didn’t and perhaps wouldn’t be capable, which was downright rude!”

Thankfully, before I could reply the practice manager instructed him to send me to the women’s hospital and to see him afterward. I was rather shocked, but I believe it was dealt with. I refuse to see him in the future.

Three years into having my second coil and I’ve had no cycles and I’m happy. I have checkups every three years. This will continue until I have been through menopause.”

Accessible services are needed for disabled patients with periods

Jessica, who has cerebral palsy, told us that she has had great support from health professionals helping her to access different types of contraception.

“I had very heavy periods and was put on birth control to help them. I’ve been lucky that I’ve had doctors who seem to understand things. It also helps that I’m anemic so that has pushed doctors to assist me.

But it hasn’t always been easy. First, I was put on the combined pill, despite being at risk of blood clots from sitting down. Luckily I didn’t develop anything.

I went for 15+ years without an [internal] examination because my spasticity wouldn’t allow it and there wasn’t anywhere accessible. Eventually, I was lucky to find a doctor’s office that was equipped to handle disabilities and had special stirrups.

They were able to do an exam and I chose to try the implant [a small tube that is inserted into the arm under the skin]. The implant helped my period, but it moved, which caused problems when it got tangled in my bicep muscle.

After that, I saw an OBGYN [obstetrician-gynecologist] who was awesome. She did my exam under general anesthetic and fitted an IUD. I had to have a second procedure using an active X-ray to remove the implant.

It took about six months for my body to adjust to the IUD, but it’s been the best solution I’ve tried so far.”

Accessing sanitary products

A tampon, menstural cup with a red heart in it and a sanitary towel on a pale pink background

Another obstacle many disabled women face during their menstrual cycle is finding the right kind of sanitary products to fit their needs and comfort.

Depending on the level of mobility someone has or the heaviness of their periods, they may still have frequent leakages or have difficulties inserting or changing sanitary products.

Finding the right sanitary product is important when you’re disabled

Elly shared her experiences using sanitary products and her plans to find the right ones for her preteen daughter who has sensory issues:

“As a wheelchair user and coming to the end of having periods, it’s been a challenge. I don’t use any contraception to control them as I found it made them worse.

A lot of pads are designed for different positions, yet when you are sat in one position pretty much the whole time, it causes you to bleed through much quicker.

I now use washables and have them made to hold more on the area I need. I also use period knickers and I really like them. However, it’s tricky when it comes to changing the knickers as they are a much tighter fit, which can cause more pain.

For my daughter, who is coming up to puberty and has sensory issues, I’m already getting her to find a product that works for her and get her use to them now, as periods are a sensory nightmare at the best of times.”

Discovering sustainable sanitary products for disabled women

We all know that we need to do more to be environmentally friendly, and many sanitary products are not. There are ways to be more sustainable, but that’s not always an option if you’re a wheelchair user, and Luisa told us.

I have had an IUD on/off for the past 10 years or more (I had a baby in 2018). Stopping my periods was a definite plus after I’d bleed through onto my cushion having used conventional pads. To this day, I’m still not able to get rid of the stain, even after repeated washes of the cushion.

I know that menstrual care for a full-time wheelchair user is not something that many doctors, nurses, or occupational health know anything about.

So when I wanted another solution, I ended up asking friends who are into sustainable living. They told me about cloth sanitary products.  I’ve found that period underwear is great and, as someone who is genderfluid, it can even be gender-affirming too!”

Difficulties with using sanitary products and feeling uncomfortable seeking support

While some disabled women are able to find the right sanitary products for them, others struggle to discover accessible ones that they can actually use themselves.

Kate told us: “I have huge problems with periods. The only products I can use are tampons alongside a pad for backup. However, many brands are stopping using plastic applicators and my wonky hands cannot use the card ones.

I have so far managed to dislocate my shoulder trying to put one in without a plastic applicator. I’ve just bought a reusable one to try, but it’s already so difficult.

I’m larger so have to stand to put a tampon in, but this causes issues itself because I slip, fall and do all manner of other things while trying to insert one.

I’m really struggling, but as I am autistic, having someone put in a tampon for me is something I can manage at the moment. I also only have one carer a day and the rest of the time my mum cares for me and I don’t want to approach the subject yet.”

Lotte also shared the difficulties of gripping sanitary products and the awkwardness of asking for help as a trans man.

“I have been on the pill since I was 13 to stop my periods due to them being heavy and me needing extra help when going to the toilet. I also have a problem with being able to grip things so using pads or tampons is extremely difficult for me.

I am also a trans man so having to deal with that is extremely dysphoria-inducing for me and it is even worse when you have to ask someone else to help you with it.”

A number of white sanitary towels and tampons lying on a brown background
©Cliff Booth via Canva.com

Periods and toileting

Difficulties finding accessible toilets to change sanitary products

One person described their difficulty with accessing public toilets to change their sanitary pad.

“A struggle I find as a wheelchair user – especially when you need hoisting – is that it can be so hard to change them. I need a Changing Places toilet to be able to do so and these are few and far between.”

Using sanitary products when using a catheter

Periods can also be an extra inconvenience for some people who use urinary catheters.

Amy explained how she had to have contraceptive injections and change the type of sanitary product she uses after getting a catheter.

“I have recently been fitted with a catheter so periods have become very challenging for me. I’ve started to take the contraceptive injection to try to prevent my periods altogether.

The first injection did the opposite and I bled for three months straight. I had better success with the next one and only bled for a couple of days.

I previously used a moon [menstral] cup as I found this easier to navigate than pads or tampons, but since having my catheter it has become impossible to use.”

Another woman told us how she can have leaks during her periods with a catheter even when it is not heavy. She all shared the frustrations of using and changing sanitary products while living in bed.

“I have really struggled with my periods since becoming disabled. I had a long episode where they stopped altogether, and since restarting they have not been that heavy (luckily).

But, despite that, I find that whatever pad I use, I always leak where my urethral catheter runs onto my clothing. It is the catheter that is the issue rather than the extent of bleeding as it happens even when there is very little blood.

Before I became disabled I used cups, but I now use tampons as have to stay in bed and have no access to a toilet so changing a cup in bed or over a bedpan would be too hard.”

What are your experiences with disability and periods? Share your stories with us and our community on Facebook and Twitter @DHorizons.

By Emma Purcell

Image credit at the top: ©Pixel Shot via Canva.com

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[BLOG POST] Stopping The Hero And Victim Narratives For Disabled People

Chloe Tear stood outdoors with her back facing the camera

Disabled people are regularly perceived as inspirational superhumans who can overcome anything and can defy all the odds. They can also be seen as people who are suffering or battling their disability and should be pitied.

However, the disability community wants to stop this narrative and just be treated like everyone else.

Chloe Tear, a disability blogger who has cerebral palsy and a visual impairment, recently published this blog post, in which she explains why society thinks disabled people are heroes or victims and how this narrative should be stopped.

When you hear the word disabled, what do you think of?

Chances are it will fall in one of these categories – a victim or a hero. Someone who is struggling and battling on, or someone who had overcome the odds and is an inspiration to all.

We cannot be blamed for these views, but we do have the power to change them. Within society I’m either portrayed as a hero or a victim, yet I am neither of those things. I hope to explain why the hero vs victim narrative needs to stop, but also why it is harmful to disabled people.

The hero

Hero (noun): “a person who is admired for their courage, outstanding achievements, or noble qualities.”

Aside from this looking like a compliment, the hero narrative can take on many forms. For example:

  • inspirational
  • overcoming
  • superhuman
  • defied the odds

I know comments like these come from a good place. They are well-meaning and often serve as a compliment. But let’s unpick what they mean.

By using the word “overcoming”, it suggests the problem is my condition and that needs to change. Overcoming also implies it is something within my control.

If I did choose to hide my condition to overcome challenges, I’m not giving myself the best chance possible. Whether I like it or not, I am disabled, even if this means society sees me as less.

When people use the word “overcome” in reference to disability, they are more accurately describing the barriers that society puts in our way.

Similarly, the word “inspirational” is known for grating on the disabled community. I believe this is partly down to inspiration porn and how society view disability. I know I cannot do this topic justice, without pointing you towards Stella Young’s TED Talk; I’m not your inspiration, thank you very much.

You might see images of disabled people with captions like:

  • What’s your excuse?
  • The only disability in life is a bad attitude.
  • Before you quit, try.

Disabled people’s existence is not to make you feel better about your life. It’s not heroic to brush our teeth or simply sit there. Yet disabled people are seen as incapable. If we achieve, it has to be possible for a non-disabled person. I believe this completely invalidates our own achievements.

The victim 

Victim (noun): “a person harmed, injured, or killed as a result of a crime, accident, or other event or action.”

The victim narrative can take on many forms, for example:

  • suffering
  • pitied
  • battling

Victim suggests that something very bad happened. Some people are born disabled; their existence isn’t a bad thing. If we’re a victim of anything, again, it’s the inaccessible society that we live in. I’m not saying it’s easy, but our mere existence isn’t to suffer. We want to live and thrive just like everyone else.

The pandemic has seen us as vulnerable and something to be protected. While this might have been the case when it came to getting coronavirus, I hope this isn’t something we generalise to every aspect of life.

Disabled people can be pitied, but what does that say about you? That you can’t imagine anything worse than being disabled? I’ll tell you now, I can think of much worse.

It’s complicated 

Being disabled can stop us from doing things, and that’s ok for us to talk about.

It’s complicated, but it’s allowed to be. We’re not a box to be contained or a simple solution that allows non-disabled people the ability to comprehend aspects of our lives.

Disabled people are often portrayed in the media as positive, grateful and happy. Again, this stereotype has made it hard for disabled people to say how they feel.

As someone who talks about their disability online, I am often hesitant of being negative. To appear ungrateful or to perpetuate the belief that having a disability is the worst thing in the world just seems like I’m doing a disservice.

Not only that, to show a weakness makes us out to be the most vulnerable within society and we don’t want that sympathy. We get patted on the head for living day to day, and that’s when we’re being positive!

But this is why we need to continue normalising disability. We’re people, just like everyone else. As Martyn Sibley put it, “disabled people can be arseholes”.

https://www.instagram.com/p/COqQk41ptzm/embed/captioned/?cr=1&v=13&wp=683&rd=https%3A%2F%2Fdisabilityhorizons.com&rp=%2F2021%2F07%2Fstopping-the-hero-vs-victim-narrative-for-disabled-people%2F%3Fml_subscriber%3D1738358138454677050%26ml_subscriber_hash%3Do6l1%26utm_source%3Dnewsletter%26utm_medium%3Demail%26utm_campaign%3Dtokyo_2020_two_more_pa#%7B%22ci%22%3A0%2C%22os%22%3A2521.7999999821186%2C%22ls%22%3A1806.2999999821186%2C%22le%22%3A1839%7D

At the end of the day, we want to be treated like everyone else. Not shamed into being a poor victim or celebrated as a hero for simply living our lives.

“You can’t say anything these days!”

Seeing disability as a victim or a hero makes society feel better and allows them to process this way of living. But where does that leave us? The ones who are “inspirationally battling on”.

Normalising disability is critical. Not only in the hope of raising awareness, but so disabled people don’t feel the pressure to perform to the societal norms.

Also, so that someone who becomes disabled (it really can happen to anyone) doesn’t see it as a life sentence. It’s a huge and often devastating thing to be diagnosed with a disability. It can take time to accept and adapt to a new way of living, but it’s not the worst thing imaginable.

We don’t want disability to become a topic that people cannot talk about or something they fear. I also appreciate that disabled people won’t always get it right.

Language and the words we use are ever evolving, something that is deemed acceptable today might not be in five years’ time. It’s complicated.

I think the most important things is a willingness to learn and an open mind to listen and respect those with lived experiences. That’s all we can ask for.

By Chloe Tear

Check out Chloe’s blog Chloe Tear and follow her on FacebookTwitter and Instagram.

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[Abstract] Reliability and Validity of Ultrasound Elastography for Evaluating Muscle Stiffness in Neurological Populations: A Systematic Review and Meta-Analysis

Abstract

Objective

Ultrasound elastography is an emerging diagnostic technology used to investigate the biomechanical properties of the musculoskeletal system. The purpose of this study was to systematically review the psychometric properties of ultrasound elastography techniques for evaluating muscle stiffness in people with neurological conditions.

Methods

A systematic search of MEDLINE, EMBASE, CINAHL, and Cochrane Library databases was performed in accordance with Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Using software, reviewers independently screened citations for inclusion. Peer-reviewed studies that evaluated in vivo muscle stiffness in people with neurological conditions and reported relevant psychometric properties were considered for inclusion. Twenty-one articles were included for final review. Data relevant to measurement technique, site, and neurological condition were extracted. The Consensus-Based Standards for the Selection of Health Measurement Instruments checklist was used to rate the methodological quality of included studies. The level of evidence for specific measurement outcomes was determined using a best-evidence synthesis approach.

Results

Reliability varied across populations, ultrasound systems, and assessment conditions (ie, joint/body positions, active/passive muscle conditions, probe orientation), with most studies indicating moderate to good reliability (ICC = 0.5–0.9, n = 13). Meta-analysis results showed a good overall correlation across studies (r = 0.78, 95% confidence interval = 0.64–0.86), with no between-group difference based on population (Q1 = 0.00). Convergent validity was demonstrated by strong correlations between stiffness values and measures of spasticity (n = 5), functional motor recovery or impairment (n = 5), and grayscale or color histogram pixel intensities (n = 3). Discriminant or known-groups validity was also established for multiple studies and indicated either significant between-group differences in stiffness values (n = 12) or within-group differences between more and less affected limbs (n = 6). Responsiveness was observed in all intervention studies reporting posttreatment stiffness changes (n = 6).

Conclusions

Overall, ultrasound elastography techniques showed moderate reliability in evaluating in vivo muscle stiffness, good convergent validity with relevant clinical assessments, and good divergent validity in discriminating tissue changes within and between groups.

Impact

Ultrasound elastography has clinical utility in assessing muscle stiffness, monitoring its temporal changes, and measuring the response to intervention in people with neurological conditions.

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[BLOG POST] 5 things I want others to know about disability

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Rebecca Sullivan is a blogger who uses her writing to express her experiences of living with cerebral palsy. Her work allows her to come to terms with her disability, and she hopes that it also inspires others to change the way they perceive the disabled community.

People with disabilities face lots of challenges. However, some of these can be reduced by society having greater awareness. I hope this article provides insight into some common misconceptions that people with disabilities face.

Rebecca sits in her colorful wheelchair in a garden wearing yellow.

1. Everyone with a disability is different 

People with disabilities are all different. Our experiences, our thoughts and our feelings are unique. Please don’t assume that every disabled person has the same preferences or that two people with the same condition will be affected in the same way.

As someone with cerebral palsy (CP), I am aware that the symptoms of CP will differ for each person. We should not be compared and our own separate desires should be taken into account.

Some people with CP walk, some use a wheelchair and some alternate between both. Some speak orally and some use an assistive device. We have the same diagnosis but are all different.

Disability does not have the same face for everybody, nor will it be the same experience for everyone.

2. Please don’t help me without asking

Sometimes, when people see me they may think I am struggling and their instinct is to help. However, it is always best to ask if someone wants help first.

I know from my own experience when someone has done things for me without asking it has felt as if my independence has been taken away. I feel obligated to accept their help so that I don’t come across as rude.

Rebecca posing in her wheelchair outside.

But I need to change this thinking. I need to be more vocal and politely say, “I am okay to do this, but thanks anyway” or ‘Could you help with this part” if I do need assistance with something.

I always appreciate it when I’m asked if I need assistance first. This shows they have seen me and given me the option of help rather than jumping to assumptions.

Additionally, if I say ‘no’ it is not out of stubbornness. It’s likely that this presumed difficulty is how I go about completing a task. For example, when I fix the bag on the back of my chair, it is just a routine to me, even though it might look like I’m struggling.

3. Don’t be afraid to get to know someone with a disability

Differences have a tendency to make others act funny. Sometimes, people are uncertain about knowing what to say or how to behave around people with differences. Because of this, it can make them avoid getting to know someone with a disability.

For some, having an encounter with someone who has a disability may be rare, so that person’s disability takes precedence over the actual person. I find this is one of the hardest things… observing a sympathetic smile while seeing fear in their eyes, or having a necessary but hurried conversation with someone.

I know seeing things from another point of view isn’t easy. Sometimes I try to break the ice and let people know that my disability is only one part of me. People have more to them than just their disability. I have cerebral palsy, just like I have brown hair.

Rachel smiling and sitting her wheelchair in a bright orange outfit.

4. It’s okay to ask questions

People have questions. Most people have an inquisitive nature – I know I do! But often people feel that they can’t ask questions about disability.

I know that in the past, when I have met someone new, for a moment or two there is some awkwardness and I get that feeling that they want to ask something but are unsure how to. I feel it’s best to gently let them know it’s okay to ask questions and perhaps bring up my disability first. This tends to reduce uneasiness.

5. It’s okay to ask me to repeat myself 

My speech is affected by my CP and therefore I am not always understood by others. Sometimes people don’t tell me that they didn’t understand what I said and respond with a completely different answer or stand there silently.

Instead of getting irritated with myself, I try to remind others that it is completely okay to ask me to repeat anything that they don’t understand.

I may repeat myself in a different way or spell out the specific word that the person is having difficulty understanding. I would rather repeat myself 10 times than have someone try to guess what I am saying.

I hope this list has helped change your perspective on disability or encourage you to think about what you want others to know about your disability.

By Rebecca Sullivan

To learn more about Rebecca and to read some of her work, visit her blog, From this Window.

via 5 things I want others to know about disability | Disability Horizons

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[ARTICLE] Portable Motion-Analysis Device for Upper-Limb Research, Assessment, and Rehabilitation in Non-Laboratory Settings – Full Text

Abstract

This study presents the design and feasibility testing of an interactive portable motion-analysis device for the assessment of upper-limb motor functions in clinical and home settings. The device engages subjects to perform tasks that imitate activities of daily living, e.g. drinking from a cup and moving other complex objects. Sitting at a magnetic table subjects hold a 3D printed cup with an adjustable magnet and move this cup on the table to targets that can be drawn on the table surface. A ball rolling inside the cup can enhance the task challenge by introducing additional dynamics. A single video camera with a portable computer tracks real-time kinematics of the cup and the rolling ball using a custom-developed, color-based computer-vision algorithm. Preliminary verification with marker-based 3D-motion capture demonstrated that the device produces accurate kinematic measurements. Based on the real-time 2D cup coordinates, audio-visual feedback about performance can be delivered to increase motivation. The feasibility of using this device in clinical diagnostics is demonstrated on 2 neurotypical children and also 3 children with upper-extremity impairments in the hospital, where conventional motion-analysis systems are difficult to use. The device meets key needs for clinical practice: 1) a portable solution for quantitative motor assessment for upper-limb movement disorders at non-laboratory clinical settings, 2) a low-cost rehabilitation device that can increase the volume of in-home physical therapy, and 3) the device affords testing and training a variety of motor tasks inspired by daily challenges to enhance self-confidence to participate in day-to-day activities.

SECTION I.

Introduction

An integral part of clinical care for individuals with motor disorders is to assess motor function to guide and evaluate medical treatment, surgical intervention or physical therapy. One of the challenges for assessing motor function is to define sensitive and quantitative measures that can be readily obtained in clinical practice. The objective of this study was to develop a device that affords quantitative assessment of motor impairments in non-laboratory settings. The specific focus is on individuals with upper-limb movement disorders. One central goal was to ground the task in scientific research to relate clinical measures to research and capitalize on insights from fundamental research.

This paper first lays out the need for such a device particularly for children with motor disorders and post-stroke rehabilitation. We then motivate the specific motor task that was originally conceived for basic research on motor control. We then detail the design of the prototype with all hardware and software components so that it can be replicated. One design goal was to make the device low-cost, so that it can be used in many clinical environments including at home for therapeutic exercises. We conclude with first results from pilot experiments acquired both in a traditional laboratory setting and in an Epilepsy Monitoring Unit. These first data were obtained from children with dystonia. However, the device is not limited to this population and is currently further modified for the assessment of stroke patients.

A. Clinical Assessments of Motor Disorders

A motor disorder manifests as an impaired ability to execute a movement with the intended spatial and temporal pattern. This includes abnormal posturing, presence of unintended excessive movement, and normal movements occurring at unintended or inappropriate times [1]. Patients with upper-limb impairments require special assistance to perform common motor tasks associated with self-care, such as feeding and dressing. Challenges in their movement control result in frustration, which leads to less engagement and practice, and thereby fewer opportunities to attenuate their motor disabilities and improve their movement control.

Motor disorder are observed also among children. Cerebral Palsy (CP) is a common cause of movement disorders among children, affecting 3 to 4 individuals per 1000 births in the US. The dyskinetic form of CP occurs in 15% of all cases [2]. Due to inflexible postures, caused by muscle spasms and contractures together with involuntary jerky movements, children with dyskinetic CP are often prevented from participation in many daily activities. This also prevents them from acquiring age-appropriate motor skills during critical periods of skill development [3], [4]. This is particularly aggravated when the condition affects the upper limbs.

For clinical motor assessments, the current standard tools are clinical scales. For cerebral palsy, typical tests are the gross motor function classification system (GMFCS) [5], the manual ability classification system (MACS) [6], the House Scale [7], the Melbourne Assessment [8], the Assisting Hand Assessment [9], the Hypertonia Assessment Tool (HAT) [10], the Barry-Albright Dystonia (BAD) scale [11], and the Shriners Hospital for Children Upper Extremity Evaluation [12]. These outcome measures were devised to satisfy the typical criteria for effective outcome measures, including reliability, validity, specificity, and responsiveness [13]. Although useful, these rating scales rely on subjective assessment and questionnaires that are vulnerable to inter-rater and test-retest reliability, nonlinearity, multi-dimensionality, and ceiling or floor effects [14]. These shortcomings need to be overcome by more quantitative outcome measures to provide a better evaluation of the individual’s motor functions and abilities, and potentially utilize such measures to objectvely assess and titrate interventions.

B. Quantitative Assessment of Motor Function

Motion tracking technologies have provided quantitative means of recording movements through a variety of sensing technology that tracks and stores movement. Camera-based motion capture, such as Vicon (Vicon Motion Systems, Oxford, UK) and Optitrak (Northern Digital Inc, Ontario, CA) requires external markers or sensors placed on key anatomical landmarks to reconstruct the skeletal model of human body parts. These state-of-the-art technologies track motion to very high precision with high sampling rates and they have been used for pre- and post-treatment assessment of upper- or lower-extremity pathologies. However, such data acquisition is limited to traditional laboratory settings because the multi-camera systems are expensive and not portable.

On the other hand, there are low-cost inertial measurement units (IMUs) that directly measure acceleration, rotational change and magnetic orientation. While these sensors have the advantage that they are self-contained and wearable, drawbacks are degraded accuracy due to drift, calibration errors and noise inherent to inertial sensors and the need to frequently recharge batteries for real-time data streaming [15]. Moreover, attaching sensors to body parts can be inconvenient or even impossible for certain clinical populations, and many children will not tolerate them.

In view of the above arguments, there is a strong need for less invasive devices that can provide quantitative measurements in tasks related to upper-extremeity motor function. Preferably, such a device should allow for portability and be low-cost to reach large populations.

C. Low-Cost Rehabilitation at Home

Rehabilitation follows standard practice and frequently requires one-on-one interaction with a therapist for extended periods of time. For these reasons, robotic devices have emerged to deliver higher-dosage and higher-intensity training for patients with movement disorders such as cerebral palsy and stroke [16]–[17][18][19]. However, while effective, robotic therapy is expensive and to date can only be used in clinical settings. To increase the volume in therapy, lower-cost devices that can be used at home are urgently needed.

Performance improvements with predominant home training are indeed possible. This was demonstrated by pediatric constraint-induced movement therapy (CIMT) for children with hemiparetic CP [20], [21]. Further, it was shown that even children with severe dystonia can improve their performance if they use an interface or device that enables and facilitates their severely handicapped movements [22].

A portable low-cost device for home use that is able to provide reliable quantitative measurements would help address the above shortcomings. Measurements could also be streamed to careproviders on a secure cloud protocol, for diagnosis of interventions, analysis of therapeutic outcomes, and further follow up.

D. Theoretically-Grounded Rehabilitation

Motor tasks for home therapy should be engaging to avoid boredom and attrition and should also have functional relevance. With this goal in mind, we developed a motor task that was motivated by the daily self-feeding activity of leading a cup of coffee or a spoon filled with soup to the mouth. The core challenge of actions of this kind is that moving such an object with sloshing liquid presents complex interaction forces: any force applied to the cup also applies a force to the liquid that then acts back on the hand. When such internal dynamics is present, interaction forces become quite complex, and the human performing the task needs to predict and preempt the internal dynamics of the moving liquid. Clearly, better understanding task is like guiding a cup of coffee to one’s mouth or a spoonful of soup has high functional relevance. While many such functional tasks have been developed for rehabiltation (e.g., the box-and-block and the pegboard task), the quantitative assessment should allow for more than descriptive outcome measures such as error or success rate. Monitoring the ‘process’ continuously should provide more detailed insight into coordinative challenges. This is indeed possible in the task of guiding a cup of coffee as we explain next.

In previous research, we abstracted a relevant, yet simplified model task, inspired by guiding a cup of coffee [23]–[24][25][26]. To reduce the complexity and afford theoretical analyses, the “cup of coffee” was simplified to a rigid object with a rolling ball inside. The rolling ball represents the moving liquid; this is also similar to the children’s game of transporting an egg in a spoon [27]. Fig.1A-C shows the transition from the real object to the simplified physical model. Importantly, the original task (Fig.1A) was reduced to a two-dimensional model, where the subject interacts with the object via a robotic manipulandum. The virtual model consists of a cart with a suspended pendulum, a well-known benchmark problem in control theory.

FIGURE 1.Model for the task of carrying a cup of coffee. A: The real object. B: The simplified physical model. C: The equivalent cart-and pendulum model implemented in the virtual task.

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Continue —->  Portable Motion-Analysis Device for Upper-Limb Research, Assessment, and Rehabilitation in Non-Laboratory Settings – IEEE Journals & Magazine

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[WEB SITE] Assisto & VHAB will dramatically change how people with neuromuscular disabilities communicate

April 4, 2019

 

In our series #TechThursdays, we bring you news about Virtual Rehabilitation (VHAB) and Assisto devices. VHAB, which is based on virtual reality and Assisto, which is on artificial intelligence, are targeted at people with neuromuscular disabilities.

Tech giant Tata Consultancy Services (TCS) are looking to enable people with neuromuscular disabilities in a big way with VHAB (Virtual Rehabilitation) and Assisto. The two devices use the latest available technologies to enhance communication skills.

Assisto addresses the communication difficulties that many people with cerebral palsy face by tuning their voices for better clarity. This is achieved with Algorithm, a speech synthesis. So, when the user speaks, the listener will hear a clearer enunciation.

VHAB, on the other hand, us targeted at children with neuromuscular disabilities like cerebral palsy and autism. Many children diagnosed with disabilities are put through rigorous physiotherapy sessions which can be tiring. VHAB makes these sessions game-based with the help of virtual reality. Gesture analysis, finger-mapping and motion sensors will be used for this.

Both Assisto and VHAB have been successfully tested on children at the Adarsh School in Kochi.

Ashwin KumarPrincipal, Adarsh School believes taht the devices will revolutionize the way people with neuromuscular disabilities communicate.

People with cerebral palsy and autism may have issues with their tongue muscles that can affect communication. Assisto and VHAB devices are definitely going to help them. The software that was developed by TCS was tested on two of our children and it worked really well. In their next phase of the project, they are planning to introduce this to more children and reach out to people who need it.- Ashwin Kumar, Principal, Adarsh School

These devices will also make day-to-day tasks also easier for children with neuromuscular disabilities. The team fine-tuned the devices over three years.

“They provide a gameified app platform and a game environment is created for the user”, says Robin Tommy one of the members of the team that worked on developing them. “It is a combination of physical and game therapies and pain-free as well so kids would love it. The devices aim to enable movements for the user and motivate them to do daily activities with ease. It is mainly based on gesture and motion”.

Seema LalCo-founder of TogetherWeCan, a well known parents supports group in Kerala, believes that technologies like these will be game changers for people with disabilities.

‘We often talk about how technology can be a curse when it comes to things like game addiction and so on. At the same time, it can be a boon for children with neuromuscular disabilities. The United Nations is already talking about the benefits of assistive technology for people with disabilities, and in enabling them to participate actively in many things. I believe this new initiative from TCS is brilliant. Communication is the key for any person and technology is truly a boon”, says Lal.

This is a CSR project of TCS and the great news is that it plans to look at ways to introduce Assisto and VHAB in other schools as well as NGOs. VHAB was recently launched at the ZEP Rehabilitation Centre in Pune,

via Assisto & VHAB will dramatically change how people with neuromuscular disabilities communicate : Newz Hook – Changing Attitudes towards Disability

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[Abstract] Soft Robotic Glove for Post-Stroke/Cerebral Palsy Hand Rehabilitation – Poster Presentation

Abstract

Objective: The upper extremity plays a vital role in manipulation, communication and overall quality of life. Upper limb hemiplegia is one the most common presentations of stroke and cerebral palsy. Stroke is projected to increase dramatically as the over 65 population increases. Cerebral palsy (CP) is a non-progressive brain injury that occurs during the pre, peri, and post-natal periods of life, with an incidence ranging from 2-4 per 1000 live births. The purpose of this study is to evaluate the rehabilitative capacity of a pneumatically actuated soft and rigid hybrid actuator hand exoskeleton system called the REHAB Glove. Testing has been performed for post-stroke hand complications and a smaller pediatric version is also currently being tested to determine functional outcomes in cerebral palsy cases.

Research Question: Does the Soft Robotic Glove for post-stroke hand rehabilitation meet the basic standards for rehabilitation, can it be used on a pediatric scale for Cerebral Palsy patients and is it practical for patient use in an in-home setting?

Methods: Prior to glove use subject demographics were collected and subjects were prepped with instructions and safety. Post-stroke Subjects were timed and assessed for ease of donning the glove and then participated in continuous passive motion (CPM) of the hand using the glove. Post glove assessments consisting of hand evaluation and survey for ease of use were then collected. CP subjects are being tested in a similar fashion.

Results: From observation of 2 post-stroke patients, it has been noted that their hands can be very difficult to manipulate. This has complicated the process donning the glove to begin therapy. Detaching the finger portions of the glove from the pneumonic actuator device has been shown to simplify this process. The time elapsed to complete this process prior to modification was much greater, approximately a 608 sec. Also, redness has been noted in both stroke patients and 1 control subject for the CP study.

Conclusion: More modifications are necessary to simplify the process of gloving the hand and further testing and evaluation is necessary prior to establishing definitive results. Alterations in areas of increased pressure on the skin should also be considered to reduce redness.

via UNTHSC Scholarly Repository – Research Appreciation Day: Soft Robotic Glove for Post-Stroke/Cerebral Palsy Hand Rehabilitation

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[VIDEO] NAO performs physical rehabilitation with CP and OBPP patients (P2) – YouTube

The patient is a male of 9 years old with Brachial Plexus Palsy and a degree of dystonia where muscle contractions cause him twisting and unintentional movements.

This video belongs to a set of evaluations of our autonomous robotic system in the Hospital Virgen del Rocio (Sevilla, Spain) while performing rehabilitation sessions with Cerebral Palsy (CP) and Obstetric Brachial Plexus Palsy (OBPP) patients.

Planning and Learning Group

http://www.plg.inf.uc3m.es

More info Therapist: http://www.therapist.uma.es

via NAO performs physical rehabilitation with CP and OBPP patients (P2) – YouTube

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