Activity

Do you have pain if you stretch too fast or move too quickly and it feels like you pulled something? Does the pain subside after only a few minutes?
I asked my doctor about this pain and even though it doesn’t last long, I immediately feel like I’ve torn my muscle. According to him, because of atrophy and inactivity, it is more easy for me to mak…[Read more]

Have you been in a sex store before and if so, what was your experience like?
I took a trip to my local sex store yesterday to pick up a new toy and some lube. The employee who helped me was incredibly professional and knowledgeable about what would work best for me. She made the experience very normal as if I were shopping at any other store.…[Read more]

Do you get muscle cramps or spasms? What causes yours to occur? What has been the best treatment for relieving muscle cramps or spasms?

I know I get them when I have dehydration, strenuous movement, or lack of muscle use. For instant relief in the middle of the night, I massage and stretch. I also will eat a pickle or drink pickle juice because…[Read more]

Movie theaters are fully open and gearing up for the holiday season with some amazing movie options. Are there any films you’ve seen lately that impressed you? What upcoming movies are you looking forward to seeing as the holidays draw near?

If you have difficulty carrying a food tray or cutting food, do you have someone who will help you? Do you have friends that just take charge and help you out? Do you prefer to wait and eat when you get home? How do you handle the lunchroom if you have difficulty walking but do not use a mobility device yet?

What would you do if there was a blackout? Do you have an emergency plan if your electricity were to go out? How would you charge your wheelchair or use your ventilator?
These are all major concerns for those of us that rely heavily on mobility devices and equipment that require electricity. Thankfully there are many kinds of powerful generators…[Read more]

In the United States, many attribute the month of October with Halloween. It can mean anything from pumpkin carving to scary movies with Halloween candy! What are your favorite fall/October activities? Do you like Halloween? Do you have kids that enjoy the holiday? What sort of things do you do that are accommodating with MD.

For example, when my…[Read more]

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.

 

View this post on Ins…

[Read more]

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…

[Read more]

In this 30 Days of MD post, Meredith Huml shares how she is learning to redefine independence for herself instead of feeling shame for requiring help.
Here’s an excerpt: “Independence means something different to me now. It means having autonomy in choosing what help I receive and from who. It means knowing when to ask for help so that I can liv…[Read more]

Day 27 of 30 Days of MD is Scott Bisi’s story! Scott has always had big dreams, muscular dystrophy was a challenge at first, but he didn’t let that stop him from working in the automotive industry.

Here’s an excerpt: “I want others with muscular dystrophy to know that their dreams can always be achieved with hard work. Despite my physical l…[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.

 

View this post on Instagram

 
A post shared by…

[Read more]

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.

 

View this post on Instagram

 
A post shared by MDNewsToday…

[Read more]

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.

 

View this post on Instagram

 
A post shared by MDNewsToday (@mdnewstoday)

Can you…[Read more]