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… Read more

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… 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… 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… 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… 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… 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… 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… 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… 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… 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… 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… 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,… 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… 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… Read more

You’ll really like it! Some great essays in it.

Hey everyone! Hope you all had a safe and relaxing weekend.

I wanted to share this book with you all. This is a collection of essays from the New York Times disability series. The book’s contributors include people living with quadriplegia, chronic illnesses, blindness, and more. The idea is to give people with a plethora of visible and… Read more

Hey everyone! Hope you’re all having a good week.

Check out this video on the SMA News Today YouTube channel (one of our sister sites). In this special edition episode, I demonstrate my new at-home exercise routine.

 

I started using my electric ceiling lift as a weight to push and… Read more

Hey everyone! Hope you all had a safe and relaxing weekend.

I wanted to ask if anyone here does online therapy. With all of the stress and anxiety in the world right now, it’s as good a time as any to focus on mental health. And since we’re all on lockdown, online therapy is a great alternative to in-person appointments.

There’s one… Read more

Hey everyone! Happy Friday!

I wanted to share this podcast episode with you all. Over on our sister site SMA News Today (which I help manage), our very own Ralph Yaniz guest-starred on our podcast. Check out Ralph’s column here if you haven’t already.

In this podcast, we spent the second half talking about the new Netflix… Read more

Hey everyone! Hope you’re all staying safe and healthy.

Today, I wanted to give a shoutout to all of the caregivers in this community. Especially in a time like this, I want to express my gratitude to everyone who continually gives and sacrifices to care for a loved one with MD.

I recently came across an article on the importance of… Read more

Hey everyone! Congrats on making it through another week of quarantine.

So I wanted to ask you all about using TeleMed for medical services. TeleMed is a popular resource for live medical answering services for patients and healthcare providers. Especially with the COVID-19 pandemic, I was wondering how many of you are using TeleMed… Read more

Hey everyone! Congrats on making it through another week of quarantine.

So, I wanted to ask you all about how you’re managing caregivers during this time. For me, I live with my parents, and my CNA has been with me for six years. He’s still coming, and my Mom handles my care on the weekends. Normally my Dad does a lot, but right now… Read more

Hey everyone! Hope you’re all staying safe out there.

So I wanted to ask you all about staying fit during the COVID-19 pandemic. I know it’s tough for a lot of us, especially when we can’t go to PT and regular appointments right now (I’m in this boat). Plus, binge-eating is tempting when you’re stuck at home (don’t look at… Read more

Hey everyone! Hope you all had a safe and relaxing weekend.

So I just wanted to do a mental health check-in. Obviously it’s a stressful time, but how’s everyone doing mentally and emotionally? For me, I’m just trying to take things day by day. I’m keeping a lockdown journal, reading, watching movies, calling friends and family, and going… Read more

Hey everyone! We made it through another week.

I wanted to share this video with you all that I came across a few months ago. This is a fascinating video, in which a group of people with disabilities discuss topics like ableism, dating, and living with a disability. The idea is to show that within disability communities, people… Read more

Thanks Ralph! Looking forward to your column!

Hey everyone! Hope you’re all staying safe, (relatively) sane, and healthy out there.

Check out Hawken’s latest column here. In it, he shares his thoughts on finding a silver lining in the midst of the COVID-19 pandemic. He writes about the benefits of virtual socializing, and how he doesn’t have to worry about social events that… Read more

Hey everyone! Hope you all had a safe and relaxing weekend.

So since we’re all stuck at home right now, I was wondering if anyone had any good podcast recommendations. Since I work from home anyway, I listen to a lot of podcasts during the day. My favorite is called Beautiful Anonymous, a conversational show hosted by comedian Chris… Read more

Hey everyone! Hope you’re all staying safe and healthy out there. At least we made it through another week!

So since there’s enough talk about COVID-19 right now, I thought I’d instead share one of Leah’s recent columns. In this piece, Leah writes about how trials and difficulties have strengthened her relationship with her boyfriend.… Read more

Hey everyone! Hope you’re all staying safe and healthy out there.

So with everything going on in the world, I thought I’d do a lighter post about entertainment recommendations for quarantine. I’m a huge pop-culture guru. This is just my personal list of book, movie, and Spotify recommendations. I’m leaving out TV, since there are just too… Read more

That would be really cool! At our annual SMA conferences, we’ve expanded the adults community a lot in recent years. Our get-togethers are way more laid back than the main conference workshops. The scene at the camp when they’re talking about their parents and home lives was really reminiscent of some conversations we have in our adults community.

It’s great! The only thing I wish it had expanded on a little more was the older couple, both of whom had cerebral palsy. I would love to learn more about their daily lives, how they manage caregivers, their kids, etc. Really that’s a whole other documentary, but it’d be fascinating. Still, it’s amazing how much ground this film covers.

Hey everyone! Hope you’re all staying safe, and that no one’s going stir crazy.

Since we’re all on lockdown, I wanted to recommend a Netflix documentary. Crip Camp is now streaming, and I watched it the other night. This film provides a glimpse into the disability rights movement, and it features several prominent disability… Read more

Hey everyone! Hope you’re all staying safe out there.

My name is Kevin Schaefer, and I’m the Forums Director for this site’s parent company. I have a rare disease called spinal muscular atrophy (SMA), which falls under the MD umbrella. You can read about my life and experiences in my column here.

Since there’s already enough… Read more