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Kevin Schaefer started the topic 30 Days of MD: The Things People Don’t Tell You in the forum 30 Days of MD 1 year, 11 months ago
Here is our final 30 Days of MD story of the year! Huge thanks to everyone who contributed to this campaign.
In this story, Zee Zelinski writes about the things people don’t tell you about life with MD. It’s a powerful and poetic piece.
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Kevin Schaefer started the topic 30 Days of MD: Mito Has Brought About New Passions in the forum 30 Days of MD 1 year, 11 months ago
In this 30 Days of MD story, Cynthia Mayeshiro writes about finding her passions and how having mitochondrial myopathy coincides with this. Cynthia is the mother of our very own @leah-leilani! This is a really encouraging story for people in the MD community.
Do you have any takeaways from Cynthia’s story?
View…
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Kevin Schaefer started the topic 30 Days of MD: I've Mastered the Skill of Getting Things Done in the forum 30 Days of MD 1 year, 11 months ago
In this 30 Days of MD story, Mindy Henderson shares how having SMA has helped her develop life organization skills. She shares stories of managing caregivers and family life, while also working and doing daily activities.
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Kevin Schaefer started the topic 30 Days of MD: A Grandmother’s Perspective in the forum 30 Days of MD 1 year, 11 months ago
In this 30 Days of MD story, Elizabeth Lowe shares her perspective as a grandmother to a child with MD. She writes about the nuances of caring for her grandson and how her family has adapted to life with MD.
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Kevin Schaefer started the topic 30 Days of MD: Getting Fit with FSHD in the forum 30 Days of MD 1 year, 11 months ago
In this 30 Days of MD story, Faye Flatt shares how physical fitness has helped her manage her FSHD. She writes about the journey from diagnosis to pursuing a good quality of life.
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Can you…[Read more]
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Kevin Schaefer started the topic 30 Days of MD: Working at the Y Has Been Incredibly Rewarding in the forum 30 Days of MD 2 years ago
In this 30 Days of MD story, Connor Shanta writes about his experiences working at the YMCA. He emphasizes the challenges that come with working with a disability and the ways he’s adapted.
Here’s an excerpt: “My first position at the New River Y was working the front desk answering phones and working with members. Because of my height, my kne…[Read more]
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Kevin Schaefer started the topic 30 Days of MD: Learning the Importance of Planning Ahead in the forum 30 Days of MD 2 years ago
In this 30 Days of MD story, Brad Miller writes about the importance of planning ahead. Especially in regards to using adaptive equipment to stay mobile, he emphasizes the importance of recognizing your needs.
Here’s an excerpt: “Living with a progressive muscle-wasting disorder means our needs can change a lot sooner than we expected. It’s b…[Read more]
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Kevin Schaefer started the topic 30 Days of MD: Transitioning From Invisible to Visible Disability in the forum 30 Days of MD 2 years ago
In this 30 Days story, Andy Rusch writes about his disability becoming more visible and progressive. He lives with Becker MD, and he writes about his symptoms are becoming more apparent.
Here’s an excerpt: “Once I accepted my transition from a hidden disease to one that could no longer be concealed easily, I opened up about what I could h…[Read more]
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Kevin Schaefer started the topic 30 Days of MD: Be Kind to Yourself for Your Mental Health's Sake in the forum 30 Days of MD 2 years ago
In this 30 Days of MD story, Sarah Bennett writes about how having MD affects her mental health. She opens up about feeling burdensome, managing parenthood, and giving herself grace.
Here’s an excerpt: “I think we have to be our own counselors too and simply be nice to ourselves! We have a unique journey, unlike so many others. It’s imp…[Read more]
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Kevin Schaefer started the topic 30 Days of MD: Occupational Therapy Is All About Teamwork in the forum 30 Days of MD 2 years ago
In this 30 Days of MD story, Moira Matthews writes about her work as an occupational therapist. She shares how working with MD clients requires communication and a focus on each person’s needs.
Here’s an excerpt: “I do plenty of exercises with my other patients but the world of MD is very different because it focuses almost exclusively on fin…[Read more]
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Kevin Schaefer started the topic 30 Days of MD: My Son Has an Exciting Life Despite Duchenne in the forum 30 Days of MD 2 years ago
In this 30 Days of MD story, Melissa Hadel writes about her son Brodie. Brodie lives with Duchenne MD and is well accustomed to lengthy appointments and different therapies at a young age. He enjoys traveling and spending time with his family.
Here’s an excerpt: “Brodie is only 7, and he’s already comfortable with needles, doctor’s appoi…[Read more]
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Kevin Schaefer started the topic 30 Days of MD: How I Navigate School with Becker MD in the forum 30 Days of MD 2 years ago
In this 30 Days of MD story, Joseph White writes about navigating school and life with Becker MD. He articulates what MD is like, and some of the adaptations he makes at school.
Here’s an excerpt: “In gym class, I have to take breaks often because when I do too much, I get painful muscle cramps. My parents and I have to make sure my teachers k…[Read more]
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Kevin Schaefer started the topic 30 Days of MD: Interdependence Enhances Our Marriage in the forum 30 Days of MD 2 years ago
In this 30 Days of MD story, Viola Dwyer shares how interdependence has enhanced the quality of her marriage. She and her husband both have disabilities and different physical needs.
Here’s an excerpt: “Dan and I practice, day in and day out, the “art of interdependence.” We rely on each other for various parts of our care. We cannot fulfill a…[Read more]
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Kevin Schaefer started the topic 30 Days of MD: Our Daughter Has Taught Us So Much About Life in the forum 30 Days of MD 2 years ago
In this 30 Days of MD post, the father of our very own @dani-liptak shares his story! Larry Liptak writes about what he’s learned from parenting a daughter with MD.
Here’s an excerpt: “The serenity prayer asks us to accept the things we cannot change, the courage to change the things we can, and the wisdom to know the difference. That’s our be…[Read more]
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Kevin Schaefer started the topic 30 Days of MD: A Physical Therapist's Perspective in the forum 30 Days of MD 2 years ago
Hey everyone! Happy Labor Day to those in the U.S.
In this 30 Days of MD story, Johanna Murrell shares her perspective as a physical therapist. She writes about what she’s learned through working with patients with MD.
Here’s an excerpt: “Each person with MD has such different needs that there is no protocol for exactly what’s right, no ma…[Read more]
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Kevin Schaefer started the topic Thoughts on States Reopening in the forum COVID-19 and MD 3 years, 3 months ago
Hey everyone! Hope you all had a safe and relaxing weekend. For those here in the U.S., I wish you all a good Memorial Day.
So, as states and other places around the world begin to reopen, I wanted to get your thoughts. I don’t want to start anything political here. Rather, I’m just curious if anyone here feels comfortable going out som…[Read more]
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Kevin Schaefer started the topic COVID-19 and Post-Traumatic Growth in the forum COVID-19 and MD 3 years, 4 months ago
So I’m sure you’re all pretty tired of hearing about COVID. Paying attention to the news right now is exhausting.
However, I did want to share this column about COVID-19 and post-traumatic growth. The author, Brianna Albers, is a writer for one of our sibling sites. She’s been writing about mental health coping mechanisms, speci…[Read more]
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Kevin Schaefer started the topic Motivation Monday: Setting Personal Goals in the forum Mental Health and Positivity 3 years, 4 months ago
Hey everyone! Hope you all had a safe and relaxing weekend.
Today, I wanted to start a conversation about setting personal goals. Obviously, it’s an unusual time to even think about this subject. Between the COVID-19 pandemic and just trying to stay healthy, most of us aren’t focused on the future.
Still, I actually think it’s a great…[Read more]
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Kevin Schaefer started the topic Preparing for a specialist appointment during the COVID-19 pandemic in the forum COVID-19 and MD 3 years, 4 months ago
Since the COVID-19 pandemic is having a major impact on our healthcare services, we have to approach medical appointments differently than before. TeleMed and other virtual services could become the new norm. Still, some appointments and procedures need to be in-person. It raises questions about how we can best approach appointments with our…[Read more]
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Kevin Schaefer replied to the topic Book Recommendation: Disability Essay Anthology in the forum Advocacy Work 3 years, 4 months ago
You’ll really like it! Some great essays in it.
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