Kevin Schaefer

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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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?

 

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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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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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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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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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]