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#muscular dystrophy
wigdevil · 7 months
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Artist whose hands shake and/or hurt?
Do you use clip studio? I made this tweaked G brush specifically to help me when my hands/arms hurt or are weak and not responding. It's really good, if someone wants to make it.
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You can probably apply these settings to other brushes and make yourself a stable/smooth version for at least some of your faves that you can switch to when shit's fucked.
If you don't have any problem using your hands and just want to have to put less effort into getting things to look less like you drew it while running and sneezing, it's for you too. You deserve. Reposting to other sites is totally fine, I don't care about links or whatever. Just tell people how to make a stable version of their brush if you want, that'd be great.
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chronicallybubbly · 7 months
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houstonxbreed · 2 months
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while me post most about nonverbal nonspeaking because intellectual/developmental disabilities, here something about become nonspeaking after/because medical crisis in 2022 & tracheotomy & muscular dystrophy, by alice wong.
overview: “This is a 2-3 minute audio letter to the late David Muir, a disabled man who invented the Passy Muir® Valve, an attachment that enables people with tracheostomies to speak. As a newly nonspeaking person, this letter allows me to share my thoughts on the desire to speak and reflections on silence.”
I paused to consider the phrase “dignity through speech.” There is dignity in silence too. Silence does not mean a person is voiceless, as there are millions of nonspeaking people who use gestures, sign language, writing, technology, and other means to communicate with the world.
I live in a world of silence that is not lesser or devoid of richness. My reality is just different. Silence forces me to be more thoughtful and intentional in considering what I want to say and how I say it when I type into my speech-to-text app, which listeners to this letter are hearing now.
The worlds of speech and silence intersect and overlap. Silence isn’t static or limiting. Silence is not an empty void. Silence has a landscape of its own. Silence has its own dimension, a space that enables another way of thinking and being. There is dignity in all forms of communicating.
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chuchu-sammika · 8 months
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Y’know at this point I kinda don’t care if I drive people away with this.
I have a right to talk about my disability, and how much I hate it.
I’m tired of dealing with it. And I’m constantly uncomfortable with it.
It’s hard to live a fully happy life if your physically in discomfort almost all the time. It’s hard to be happy when you can’t do almost anything.
It hurts. It’s tiring.
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thecinamonroe · 1 year
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Marilyn Monroe with 12 year old Donald Thompson, a boy who suffered with the condition and to whom she donated to at the “1955 Thanksgiving week March of Muscular Dystrophy” in New York on November 17, 1955. 
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coolthingsguyslike · 7 months
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mindblowingscience · 8 months
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It is the first gene therapy approved to treat this debilitating and fatal disease found almost exclusively in boys. Emma Ciafaloni is a neuromuscular neurologist with the University of Rochester Medical Center (URMC) neurology department and Golisano Children’s Hospital, and director of the UR Medicine Duchenne Muscular Dystrophy Clinic, which treats boys with Duchenne muscular dystrophy (DMD) from across upstate New York. Ciafaloni has been involved in DMD clinical research for decades and URMC was one of first three sites in the nation to start dosing patients in the phase 3 clinical trial for the new gene therapy. The study, called EMBARK, has since expanded to additional sites in North America, Europe, and Asia. Ciafaloni also served as chair of the independent Data Safety and Monitoring Board for the early phase clinical trials of the therapy. The new drug—delandistrogene moxeparvovec-rokl—is being developed by Sarepta Therapeutics and marketed under the name ELEVIDYS.
Continue Reading
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bpod-bpod · 23 days
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Muscle Differences
Zebrafish model reveals molecular differences between muscle types affected and unaffected in muscular dystrophy – Fhl2b protein has a protective effect with potential for therapies
Read the published research article here
Image from work by Nils Dennhag and colleagues
Department of Medical and Translational Biology, Umeå University, Umeå, Sweden
Image originally published with a Creative Commons Attribution 4.0 International (CC BY 4.0)
Published in Nature Communications, March 2024
You can also follow BPoD on Instagram, Twitter and Facebook
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sadapples · 5 months
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the disability pride flag! It’s not disability pride month, but I felt a little disability pride is in order for all the disabled folks who feel like they aren’t enough. YOU ARE DOING AMAZING!! Despite all capitalist, ableist, racist, queerphobic, fatphobic obstacles in your way, you are still alive and doing what YOU need to do in order to live. That’s pretty badass. People, and oppressive systems don’t expect you to be proud, or happy, because when you’re disabled, it’s supposed to be tragic and sad. Well you are not tragic, or sad, or anything else these people who know nothing about you say you are. Being proud and disabled is an act of rebellion against these oppressive systems that we are forced to live under. I’m very proud of you, keep doing what you’re doing love 💗
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reasonsforhope · 1 year
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“A pioneering set of “wearable muscles” with a profile similar to a shoulder sling could increase mobility and strength in the arms of people who have lost it.
As algorithmic intelligence advances, more and more engineers are attempting to design different prosthetics to replace lost mobility, but many are large, bulky, complicated, or extremely expensive.
Michael Hagmann has a rare form of muscular dystrophy called Bethlem myopathy, but his muscular output was increased 61% thanks to a kind of exo-tendon called “Myoshirt” which learns the movements Hagmann wants to make before raising and lowering a cable similar to a human tendon in order to apply mechanical advantage to his actions.
“Although hospitals have numerous good therapy devices, they are often very expensive and unwieldy,” said Marie Georgarakis, a former doctoral student at the Swiss Federal Institute for Technology’s Sensory Motor Systems Lab in Zurich.
“And there are few technical aids that patients can use directly in their everyday lives and draw on for assistance in performing exercises at home. We want to close this gap.”
The Myoshirt is a soft, wearable exomuscle for the arms and shoulders; a kind of vest with cuffs for the upper arms accompanied by a small box containing all the technology that is not used directly on the body.
Smart algorithms detect the user’s movements and the assistance remains always in tune with them. The mechanical movements can be tailored to their individual preferences, and the user is always in control and can override the device at any time.
In an alpha-stage test, 12 people including Hagmann and another with a spinal cord injury, performed arm strength tests wearing the Myoshirt. In the 10 who had no mobility issues, Georgarakis et al. found that “onset of muscle fatigue” was delayed by 51 seconds compared to an unsupported arm.
Hagmann experienced a 254 second-delay [over 4 minutes] in the onset of fatigue doing unloaded arm lifts, and the participant with the injured spinal column was able to lift his arms repeatedly for nearly 7-and-a-half minutes more than without the Myoshirt.
At the moment the box containing the motor and computer parts weighs close to 9 pounds, so the team’s first priority is to develop a full prototype with an even more discreet profile to allow people to use it in day to day life as often as possible. [Their other main priority? Taking the exomuscle out of the lab and testing it in real life.]” -via Good News Network, 1/13/23
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tic-loud-tic-proud · 5 months
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you fundraised over $2,000 for muscular dystrophy research! you don’t know how much that means to me as someone with muscular dystrophy! I wanted to ask, how did you do it? I’d love to fundraise in my own community. Any tips on how to start?
Thank you so much!
I am a member of a fundraising team for my local chapter of the FSHD Society for facioscapulohumeral muscular dystrophy, the type of MD that I have. As far as I know, the FSHD Society only operates in the USA and Canada, but they have a list of some global FSHD groups here.
The FSHD Society does an annual fundraising event called the Walk and Roll to cure FSHD: this is the only major fundraiser specifically for FSHD in North America. This is the primary way that I've raised money in the past.
Anyone can participate, but the best way is to join or create a fundraising team (fundraising teams raise more than 80% of total donations). FSHD is genetic, so the team I'm on consists mostly of my family members and a few friends that also have FSHD, which classes us as a Friends & Family team (as opposed to a corporate team). You need 4 or more people to make a team.
Teams create a website or Facebook group to document their goals and progress. I'm not sure whether or not this is required, but definitely creates a much easier way for people to send in donations online rather than with cash/check.
Then, get the word out! The easiest way to do this is with social media posts that link to your team's webpage, but some teams also put out flyers. And depending on where you work, you could ask your business to be a corporate sponsor, or do a corporate match program, where every dollar donated by an employee is matched by the corporation. Depending on how much you raise you can receive branded items in return: I've gotten an umbrella, backpack, and duffel bag.
If there is no Walk and Roll event near you, you can participate virtually or donate to the FSHD Society at any time through their website.
My team's $2,000 worth of funds raised is actually on the lower end compared to most other teams, who average over $3,000! But remember that every cent counts towards finding a cure for FSHD and helping people living with it :)
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chronicallybubbly · 7 months
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You ever get in the bath/shower and wonder how on earth you’re going to get out because you’re so tired that moving seems impossible?
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houstonxbreed · 15 days
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One thing that makes dating difficult when having a severe disability is the lack of privacy. It’s hard trying to remain private when you have to rely on caregivers for EVERYTHING. And many caregivers treat disabled adults like children and can be extremely judgmental especially when the disabled adults are also apart of the LGBT.
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blue-genes · 1 year
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So I recently learned that "normal" people don't experience constant physical pain?
I can't think of a single second when I've been completely at peace.
Like I put myself through so much pain on the daily, just to do the things I love
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chuchu-sammika · 8 months
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I still have trust issues with abled body people. But the only ones I don’t have trust issues with is my partner and my close friends.
I don’t care if you unfollow cuz of that as well. I should be allowed to show my frustration with most able body people
I shouldn’t ask nicely for you to put a ramp down. If you can walk on stairs without asking politely, I should be rolling on ramps without asking nicely
Like if I’m coming over to your house, you should be putting a ramp on your stairs before hand. Not just expect me to be like “pretty please, let me go up your steps 🥺”
Like again, I don’t see you asking for freakin’ stairs.
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