Website Resources:
All of the resources, links, worksheets, videos, etc that we have scattered throughout the website (and more) all on one page.
Sites and Other Links
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Horiculture Therapy Links (Gardening & Growing Plants)
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Ehlers Danlos Syndrome Links
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Links for Caregivers
Signs of Burnout: What It Is, How It Feels and How To Recover
Hire some Local Help- Not Just Elder Care
Automatic Pill Dispenser that Caregivers can Monitor from Different Locations from Their Phone 1
Automatic Pill Dispenser that Caregivers can Monitor from Different Locations from Their Phone 2
Videos
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Things Not To Say To Someone With A Chronic Illness
You Look Okay To Me is the home of awesome content about pain and chronic illness. We make amazing documentaries, video essays, animation and more.
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Addicted to Being Sad
Fourteen years of pain and failed ankle surgeries brought me to 2018, when I made the difficult decision to become a twenty-seven-year-old below-the-knee elective amputee. This channel has documented my journey adjusting to life with a visible disability as an amputee, and continues to be a haven to discuss physical and mental health!
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Elliot Krane: The mystery of chronic pain
We think of pain as a symptom, but there are cases where the nervous system develops feedback loops and pain becomes a terrifying disease in itself. Starting with the story of a girl whose sprained wrist turned into a nightmare, Elliot Krane talks about the complex mystery of chronic pain, and reviews the facts we're just learning about how it works and how to treat it.
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Tame the Beast: Time to Rethink Persistant Pain
Pain scientists starting to think differently about persistent (chronic) pain and its causes, are they're making exciting discoveries - like how you think about your pain can change the way it feels.
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Can Lonliness Kill You?
We all feel lonely sometimes, but are the effects serious?
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What happens when you have a disease doctors can't diagnose | Jennifer Brea
Five years ago, TED Fellow Jen Brea became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome, a debilitating illness that severely impairs normal activities and on bad days makes even the rustling of bed sheets unbearable. In this poignant talk, Brea describes the obstacles she's encountered in seeking treatment for her condition, whose root causes and physical effects we don't fully understand, as well as her mission to document through film the lives of patients that medicine struggles to treat.
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Explaining Spoon Theory to Someone With/Without a Chronic Illness
Join the chronic illness community by following us on twitter @spoon_central
This video describes what it's like to live with a chronic illness by explaining Christine Miserandino's spoon theory (https://butyoudontlooksick.com/articl.... Make sure to read the article, especially if you're wondering "why spoons?".
For other educational videos, activities, and chronic illness support, go to www.spooncentral.com
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What is Long COVID
Long COVID Physio has partnered with FisioCamera to deliver a series of educational videos about Long COVID. In this first video of the series, you can learn "What is Long COVID?".
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Family Resource Links
Long COVID Physio has partnered with Fisiocamera to deliver a series of educational videos about Long COVID. In this 4th video in the series, learn about the “episodic nature of Long COVID”.
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“Sleep Disorders in Ehlers-Danlos and Related Syndromes: A Panoply of Paradoxes” - Alan Pocinki, MD
Poor sleep can fuel the cycle of chronic pain, leading to even more disordered sleep and worse pain or symptoms. Watch to learn more about how this can occur, specifically, in patients with Ehlers-Danlos syndrome (EDS), Chiari malformation, syringomyelia and other chronic illnesses.
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Hypermobile EDS Diagnostic Criteria On 5 People w/ Ehlers-Danlos
Description goes hereIn this video, five people with hypermobile Ehlers-Danlos Syndrome run through the hEDS diagnostic criteria from 2017! Hypermobile EDS is a painful genetic connective tissue disorder that makes connective tissues abnormally weak, fragile, and stretchy, leading to chronic joint and muscle pain, joint instability and dislocations, dysautonomia, fatigue, and GI tract dysmotility, among so many other symptoms. While the diagnostic criteria help to diagnose, it barely scratches the surface of the impact of this disease.
Helpful Programs
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This program offers a range of services to support family and informal caregivers to care for their loved ones at home for as long as possible. This program does not pay caregivers to provide continuous care for their loved ones.
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The Community Alternatives Program for Disabled Adults (CAP/DA) is an NC Medicaid home and community-based program for adults and seniors who are physically disabled and at risk of an institutional placement. The program offers help in the home and community.
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Save Without Impacting Eligibility for Public Benefits Like SSI and Medicaid
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Each year, we help thousands of people overcome disability-related barriers and achieve their goals for competitive employment and more independent living in their community. In collaboration with each client, we help assess skills, interests and abilities and choose a goal for competitive employment or independence. Based on the client’s needs, we create a customized plan of services and supports to help them achieve that goal.
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The Family and Medical Leave Act (FMLA) entitles eligible employees to take up to 12 workweeks of unpaid, job-protected leave in a 12-month period for a “qualifying exigency” arising out of the foreign deployment of the employee’s spouse, son, daughter, or parent. FMLA leave for this purpose is called qualifying exigency leave.
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Description goesFood and Nutrition Services (FNS, also known as Food Stamps) is a program that helps eligible people with limited incomes supplement their budgets so they can purchase food. Learn more about the program is nationally known as the Supplemental Nutrition Assistance Program, commonly known as SNAP.
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Meals delivered to the elderly and those with chronic health issues
Downloadable Links
Non-Boring Braces, Compression and Other Disability Stuff
Chronic Hope Counseling Recieves ZERO Benefit From You Purchasing or Not Purchasing Any Item
Non-Boring Braces, Compression and Other Disability Stuff
Chronic Hope Counseling Recieves ZERO Benefit From You Purchasing or Not Purchasing Any Item
Crazy Compression: a sock brand that takes pride in offering larger than life, fun and colorful compression socks at a great price!
MarGin Wellness: Cute Creative Compression Gloves
Fashionable Canes: Fashionable Walking Canes for Every Style
Izzy Wheels: Izzy Wheels Turn Wheelchairs into works of art! We believe your wheelchair should reflect your personality
Bibipins: fun, creative and high quality accessibility tools, bags, clothes and pins!
Granted Engineering: Cute, colorful and quirky replacement joystick knobs for a large variety of different powerchairs
Warmies: Cute stuffed animals who can be warmed for comfort and pain control
SmartCrutch: Cute and colorful patented cuff adjusts from 15 to 90 degrees, and distributes your body weight over your forearm, releasing pressure and pain from your hands, wrists and shoulders