Muscular Dystrophy

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Year 2024: The Year of Truth

Hey there, Keisha Greaves here! You know what? This year, 2024, I’ve decided to go full-on Katt Williams style. Yep, you heard that right. It’s time to spill some real tea on a few things that have been bugging me. We’re talking about the Muscular Dystrophy Association, hospitals not playing by the ADA rules, and the fashion industry’s blind spots. So, grab your favorite cup, and let’s get into it.

First up, let’s chat about the MDA. My journey as their National Ambassador was eye-opening, to say the least. I stepped in with hopes and ideas, eager to make things better for our community. But, oh boy, was I in for a surprise. Support groups, outings, help with medical supplies it seemed like these essentials were lost in a maze of research priorities and fundraising. Now, don’t get me wrong, research is vital, but what about the needs of today? I mean, it’s 2024, and we’re still waiting for that groundbreaking cure they’ve been talking about for ages.

Now, let’s switch gears to hospitals. ADA compliance sounds straightforward, right? Well, think again. Some hospitals still haven’t got the memo. Accessibility is a fundamental right, not an optional add-on. I’ve seen firsthand the struggles and frustrations from parking woes to navigating hallways and rooms not designed with wheelchairs in mind. It’s like a never-ending obstacle course, and frankly, it’s exhausting. It’s high time these hospitals stepped up their game and made real changes. After all, inclusivity should be at the heart of healthcare.

And then, there’s the world of fashion. Ah, fashion so glamorous, yet so out of touch. It’s 2024, and adaptive fashion is still struggling to find its rightful place in the mainstream. We’re here, we’re stylish, and we deserve fashion choices that reflect our diverse needs and personalities. Retailers, designers, listen up it’s not just about ramps and wide aisles; it’s about the clothes we wear and how we express ourselves. Let’s make fashion truly for everyone.

So, that’s my unfiltered take on these topics. But hey, this isn’t just about me venting. I want to know what you think. Got any specific tea you want me to spill? Anything you’re curious about or issues you want to bring into the spotlight? Drop a comment, send a message let’s turn this into a real conversation. Because when we start talking openly about these issues, that’s when real change begins. Let’s make 2024 the year we break down barriers and speak up for what really matters!

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I'm new here!

Hi, my name is Medicrn4814. I'm here because I have Limb Girdle Muscular Dystrophy, cluster migraines since age 17, severe degenerative arthritis, stenosis, CAD, COPD, and my snapping just cost me my best friend. My wife and I have been married 34 yrs, 3 children , 8 grandchildren. I'm a nurse, firefighter, paramedic, and Type A personality. I snapped a few times at my best friend and his wife and they have told me to go away. I am devastated, I have apologized profusely, but I want to give some explanation for my actions. I live in constant pain at a 6-7 out of 10. 14 major surgeries and i take 25 meds/day. What can I say to them to help them understand my stupidity.

#MightyTogether #Migraine #MuscularDystrophy

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Cheers to Sarepeta Therapeutics: My Rock and Lifesaver!

Hey everyone!

I’ve got some serious love to share today. Let’s talk about Sarepeta Therapeutics, straight out of the awesome city of Cambridge, Massachusetts. These incredible folks have been a true-blue supporter, always there, always believing. And oh boy, they’ve got a special place in my heart.

**Believing in Dreams**

So, let’s rewind a bit. I’m Keisha Greaves, the brains and heart behind Girls Chronically Rock, Trust Your Abilities, and GCR Adaptive Project. Now, making these dreams a reality isn’t a solo act. It takes a village, and Sarepeta Therapeutics has been a crucial part of my village.

**Funding Magic**

Sarepeta Therapeutics didn’t just nod in agreement from the sidelines. No, no. They threw their weight behind my non-profits, Trust Your Abilities and GCR Adaptive Project, by granting us funds. That’s not just financial support; that’s belief turned into action.

**Champions for Muscular Dystrophy**

Now, here’s the thing that makes them superheroes in my book. Sarepeta Therapeutics isn’t just about Keisha and her dreams. They are champions for the Muscular Dystrophy Community, especially those rocking Limb-Girdle Muscular Dystrophy. They’ve got our backs!

**Memories to Cherish**

Let me take you down memory lane. Picture this: the Limb-Girdle Muscular Dystrophy launch. Sarepeta Therapeutics didn’t just throw a party; they invited me and others to join in. We had a blast, from the launch shenanigans to a kick-ass photo shoot. Those moments are etched in my memory, and they’re a testament to the incredible community spirit these guys bring.

**Forever #1 in My Eyes**

So, here’s a big shoutout to Sarepeta Therapeutics. You’re not just a company; you’re family. For believing in me, for supporting my non-profits, and for being a rock for the Muscular Dystrophy Community, you’re forever #1 in my eyes.

To Sarepeta Therapeutics: You rock , and I can’t wait for more adventures together!

Cheers,
Keisha Greaves
Girls Chronically Rock

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Hello!

Hello this is my first post. I guess I'm just really trying to find support because after 20 years I'm still at a loss of why my body hates me, and just does so more and more all the time. I have debilitsting weakness amd fatigue along with other things like nerve pain and twitching, which has been affecting me since i was about 10, though it was mild then. Now i cant do anything without feeling like a pile of rocks about to fall over. I saw a neurosurgeon recently when I thought it may be tethered cord, and it wasn't. However, when I asked him what it may be, he said a neuromuscular disorder like muscular dystrophy. I have my first neurology appointment in a couple months and I'm so scared but hopeful. Research is so very overwhelming and there's so much to possibly discover to the point where I've basically given up on it, and is the first time probably I'm starting to trust doctors. That alone is difficult, and I'm trying to be forgiving on myself which is a slow but steady process. The MD possibility honestly makes sense because I didn't walk on time and didn't alternate my feet on stairs until I trained myself at 12 years old. I still struggle cus my legs feel heavy and wobbly, like I'm moving through water that's flowing in the opposite direction.

Anyways, I'm hoping being in this group and checking in with everyone helps me and may even help others in the same situation! If anyone else has similar experiences I would love to hear about them.

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What advice do you have for someone searching for a rare disease diagnosis?

Between managing symptoms, juggling doctors’ appointments, and trying to find a name for what you’re experiencing, the journey to a rare disease diagnosis can be a bumpy one. That’s why it helps to have a community that “gets it” in your corner.

If you’ve been through the rare disease diagnostic process before, what advice do you have for someone just starting their search for answers? Do you have any tips for communicating with health care providers?

And remember, no matter where you are in your rare disease journey, you’re your own best health advocate. We’re cheering you on!

✏️ P.S. We’re creating a story with one of our partners, Catalyst, to raise awareness around late-onset rare disease. We may use your answer in an upcoming story on The Mighty.

💡 If you’re looking for more resources on navigating life with a rare disease, check out Catalyst’s new program at Many Faces of LEMS - lemsaware

#RareDisease #LambertEatonMyasthenicSyndrome #MyastheniaGravis #LungCancer #SCLC #CheckInWithMe #Spoonie #MentalHealth #Caregiving #MuscularDystrophy #IntravenousImmunoglobulin

Many Faces of LEMS - lemsaware

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Having A Home Health Can Be A LOT!

Part 1 of 2 Home Health Aid for Chronic Illness: A Comprehensive Guide

As someone who suffers from a chronic illness, I know firsthand how challenging it can be to manage your health while also trying to maintain a normal life.Imagine having a chronic illness that affects your daily mobility, quality of life, and having hired personal care assistants who don’t show up – meaning that you don’t eat, drink, go to the bathroom, shower, or get to the doctor for your necessary weekly appointments. That has been my reality too many times to count because of the negligence or unprofessionalism of many of the home health aids I’ve hired and fired. Time and time again, my experiences have proven the old adage to be true, “Good help is [truly] hard to find.”The real need to have consistent and reliable help still exists as daily reality for those of us with chronic illnesses like Muscular Dystrophy. I want to make it clear that my experience does not represent all experiences, but as someone who is dependent on the assistance of another to maintain a human-quality of life, I know the importance of having the right support on this journey. Whether it’s you, a relative, partner or community member, understand that the evaluation process of a home health aid is just as important as the work. I want to share some of the things I’ve learned in my experience of hiring (and firing) home health aides in hopes that you too can find the best help for yourself or loved ones. Based on my experiences, I’ve compiled a list of considerations, skills and responsibilities a home health aid should possess in order to adequately support those with chronic illnesses and other conditions that may affect mobility and expected functions of the body. What to Expect or Request from a Home Health AidDaily Living ActivitiesHome health aids should be prepared to assist patients with activities of daily living. This can include personal care such as bathing, grooming, or dressing. They may also help patients and caregivers with light housekeeping duties, such as laundry or food preparation.Condition ManagementFor patients with chronic illnesses, home health aids can play a vital role in helping us manage our condition. They should work closely with the patient’s healthcare team to ensure that we receive the necessary care and support. This includes monitoring the patient’s vital signs, administering medication, and providing emotional support.Independence and Quality of LifeIn addition to providing physical care, home health aids should also help patients maintain our independence and quality of life. Assisting with mobility and exercise, encouraging social interaction, and providing companionship are additional factors that can make or break your experience depending on your current caregiving support system. Knowing first-hand how challenging living with a chronic illness can be, I”ve learned that its’ 100% necessary to work with an aid who makes your life more comfortable with their help, not more work. Skills Required for Home Health AidsAfter having my fairshare of good and bad experiences with home health aids, I have developed a checklist of skill sets that make the difference between feeling supported and feeling frustrated. Here are some important factors to keep in mind when selecting a home health aide.Language SkillsOne of my biggest challenges with most of the home health aids I’ve worked with is a lack of reasonable English language skills. Not being able to truly understand one another or effectively communicate has been my biggest barrier to receiving adequate care. I am a strong supporter advocate and believer in diverse workforces, but this has been one area of frustration for me as time and time again, I have had to end a contract based on the inability of my home health aid to understand or speak English. My hope is that you don’t experience the same challenge, and I do hope there will be more training and development resources available to help solve this issue for both home care providers and the patients like me who so desperately need their assistance. Communication SkillsEffective communication is essential in the home health aide profession. Being able to communicate with patients, their families, and other healthcare professionals is critical and something you can’t skip when evaluating your aid. I need to be able to discuss treatments, medications, doctor’s orders and I need to know that my aid understands and can communicate when they don’t EmpathyEmpathy is the ability to feel compassion for another person. Your home health aid has to be sensitive to the fact that they may be working with patients who have health issues and cannot perform basic daily tasks. To be effective and make genuine connections with patients, aids must have strong empathy skills. This includes creating a rapport with the patient

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I'm new here!

Hi, my name is Brenda Lee. I've been diagnosed with Adult Onset Muscular Dystrophy LGMD2A R1, a slow progressing rare muscle wasting disease. It's incurable and I need support and want to hear stories of coping mechanisms. I'm still mobile at 62, no chair yet. Finding a life balance is a struggle in Vermont.
#MightyTogether #MuscularDystrophy

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