Happy that you can enjoy your grandkids. I am glad that you feel comfortable enough to share. Thank you!

I feel you on both of these issues. Every time I’ve choked I’ve been with a group of people – I’m gregarious and love to chat over a meal. And I LOVE great food. But I don’t go to restaurants at all unless it’s with someone who knows my issues.

Also, playing with my grandkids on the floor is all fun until I have to get up. They laugh when I…

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I relate to the eating part. For me, it is not choking, but the recent fact that I can no longer feed myself. Being in a restaurant while my wife or caregiver is feeding me gets a lot of looks from people at other tables. Although these are difficult things to admit, I am glad that you felt comfortable enough to share. 🌞

I actually don’t think about life before MD very much. I am more concerned about my future with OPMD. One thing that I definitely think about from “before” is how I used to actually be able to get up off the ground without assistance. Now that is impossible. I either need the help of a person, a piece of furniture, or some other support. And…

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Many types of MD are diagnosed in late childhood or beyond. How often do you catch yourself thinking about life before MD? 

 

Thinking about things you used to do without help can be frustrating. If I think hard enough, I can remember walking and climbing stairs, and even shaving without help. I try not to harp on these memories, but they tend…

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I was 12, and I had no idea what ‘muscular dystrophy’ was, nor what it meant. It took me almost a decade to accept what was going on inside my body, and it’s still difficult some four decades later. 

How old were you when you first learned about MD? Do you remember where you were and how you felt?

I have been living with LGMD since 1985, and so much has changed in 4 decades. DMD has several FDA-approved treatments, millions of dollars have been pouring into research, standards of care have been developed, and people are living longer and stronger with all types of MD. 

Short of a cure, what advances do you hope to see in the next…

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We’re hosting an Ask Me Anything (AMA) with Cerys Davage from August 24th-28th. It’s a chance to connect with a member of the Muscular dystrophy community and ask any burning questions that have been on your mind.

Let’s all welcome Cerys Davage and give her lots of support as she shares. If you have questions or topic ideas for Cerys to…

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We’re hosting an Ask Me Anything (AMA) with Cerys Davage from August 24th-28th. It’s a chance to connect with a member of the Muscular dystrophy community and ask any burning questions that have been on your mind.

Let’s all welcome Cerys Davage and give her lots of support as she shares. If you have questions or topic ideas for Cerys to…

Read more

@Solveig Magnuson That sounds rough, especially when sinus symptoms keep coming back whenever you get a cold. I’ve also noticed that people seem to compare sprays, neti pots, and rinse bottles a lot for this kind of congestion. One thing I’d add is that saline rinsing can be useful for some people, but the water safety part really matters —…

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Planning ahead always helps me….in the car I bring fruit, granola and other healthy snacks for someone to help me eat on the road……stuff that doesn’t make a mess. I calculate roughly where I’m going to be when stopping for the day and then find a local hotel ahead of time. I call and speak with the desk, letting them know that I need…

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The summer months can find many of us leaving the house more than usual. Living with MD requires extra planning, and travel is no exception- it takes many steps, but it can be done! I am visiting Florida, Philadelphia, and New York City with my family this summer.

Are you taking any fun trips soon? Where will you be found during the…

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Thank you for sharing this, that’s really helpful. I like how you framed it as testing what works instead of assuming one setup will fit everyone. The accessible bathroom and roll-in shower point makes a lot of sense, especially because daily routines can become stressful when the home layout itself creates extra effort. I hadn’t thought about…

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@Jasleen Hhello! I have SMA, which is sort of a sibling condition to MD. Over the years, my family and I have made numerous modifications to our house to make it more accessible. We also travel regularly. The big things I would recommend are: getting a ceiling or Hoyer lift, getting an accessible bathroom with a roll-in shower, and possibly…

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Hi everyone, I’m still learning as a family member and wanted to ask something practical. What small daily-living items, setup changes, or routines have made things easier at home or while traveling? I’m thinking about things like keeping essentials within reach, planning ahead for long trips, making nighttime routines less rushed, or…

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Thank you for sharing your perspective, Moonsung. I appreciate you taking the time to explain your thoughts.

Since I’m here as a family member and not a medical professional, I’m careful not to judge or recommend treatment approaches. For anything therapy-related, we’d always rely on qualified doctors or specialists.

I’m mainly hoping to learn…

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Hi Jasleen,

To give you some context, I’m not an MD patient, a family member, or a medical doctor. I’m an old student of alternative medicine, currently exploring supportive approaches for MD in both Korea and New Zealand.

Through my research, I’ve identified two simple, complementary modalities that appear to offer supportive benefits:…

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“Hot and Cold”

Science or not, the weather has an effect on our muscles, our energy, and our attitude. I love the summer warmth for my circulation, but the humidity makes me not want to move at all!

How about you? Do certain temperature and weather conditions affect your muscles?

Hi everyone, I’m Jasleen. I’m here as a family member of someone affected by muscular dystrophy. I’m still learning from real experiences around daily routines, mobility, comfort, travel, and caregiving support. I’m not a medical professional, so I’m mostly here to listen, learn, and contribute simple day-to-day support ideas where…

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As an older member of the EDMD community and a senior on a fixed budget., how does it person get a DAV for the price of a normal car? Financially, $60,000.00 is not feasible. Grants are great if a legitimate one can be found. Go fund me doesn’t work.

My pleasure!

Thank you @CrystalH

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I think one frustration is that MDN has been putting out a Graphic recently with various MD’s on it, including OPMD and some of symptoms for OPMD are missing. I saw this Post in a conversation on a Private OPMD FB Group and lots of people with OPMD were upset. The limb girdle weakness symptoms are missing. Here’s the MDA’s recent Factsheet…

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@Bobbie We are working on making that happen! We are promoting on social media, sending out emails, and preparing for some fun in-forum events. Stay tuned. But as Pat said, the best way to help is to spread the word, in-person and in the online communities you’re a part of.

Thanks for being here!

Great to hear from you! I think the best way to spread the word about the MD forums…..is to spread the word! Seriously, please let others know that we are here. Encourage people to join and post. Bionews only relaunched this a little over a month ago, so we are still finding our way. As far as another channel goes, that is a question for …

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That would be great. I am interested in that. More specifics on OPMD in this forum. Also how can we get more particapation on this forum..? Im wondering if fatigue is part of OPMD? and also what others are doing to keep up muscle tone and strenght…? I am taking Creatine and feel its helpful. im also wondering what others are doing…

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Can we have a Sub-Forum for OPMD Patients only? Is that a thing here?

Nice! Litchfield is a bit south of Augusta yes? Beautiful country up there. Do you modify your golf game for balance and swing? I’m sure that others may be interested in your golf hacks…..Thanks for the reply my friend!!

I have two favorite seasons of the year. The first is summer because I get to play golf with all my friends at the meadows golf club in litchfield, maine. Actually, the best part about that is, I get to play against other people. Young and old and compete, and sometimes actually win some of these competitions.Even with myMD.

The other…

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Hey everybody, let’s see where our temperature preference lands with a seasonal poll!

Let us know what time of year you enjoy best. If you live in a place where you have a temperate climate, tell us what is awesome or maybe not so awesome about living there.

Personally, I have to go with autumn in my home state of New Hampshire! Crisp nights,…

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Happy Friday!

This week I have a question about summer outdoor life. What are a few of your favorite places to visit during the warm summer season? I’m a beach person and visit the ocean any chance I get.

What about all of you? Where are you heading this summer?

“Let’s Break the Ice”

As we continue to update and refine the muscular dystrophy forum space, please feel free to drop a few lines here about yourself and anything AMAZING that is going on in your orbit!

What do you want to share? What questions do you have?

“You’re allowed to rest without earning it.”

Someone said this to me a long time ago, and I never forgot it. Even before using a wheelchair as a treatment for life with muscular dystrophy, I felt guilty about needing to take a break when fatigue set in. 

It took me a long time to accept, without guilt, that my body needs a break from time… Read more

Hello Everyone!

I will admit that I am biased since I am a cohost of this podcast! The Speak Foundation and I have teamed up to amplify the patient voice in podcast form. Our latest episode is out HERE. 

This month, we chatted with the president and founder of Parent Project Muscular Dystrophy, Pat Furlong, about the state of… Read more

Happy Friday!

Today, we launch “Friday Fun.” Each week, I encourage forum members to share a few sentences about something fun that they are up to these days. 

Of course, the forum moderator must play along, and so here you go….

I am getting ready to attend the PPMD annual connect conference in Orlando at the end of June. The Cure SMA… Read more

Adults living with muscular dystrophy have wants, needs, and drive. I’m talking about sexual health. Here is a bit of support for this worldview. What do you think?

https://musculardystrophynews.com/news/adults-md-report-major-gaps-sexual-reproductive-healthcare/

That’s cool!