I love that you and Dennis got to meet! That’s awesome. For me, I am in a unique situation in that the children’s clinic kept me and other adults there. That’s been super helpful. However, my longtime neurologist and pulmonologist both left a few years ago for other jobs. It was really hard saying goodbye to them, but fortunately, the ones…

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Thanks! Yeah, the portrayals are typically very dehumanizing and cliché. That’s what I like about “The Pitt.” The writers really go the extra mile to humanize the patients.

And I never watched House, but I know what you’re talking about. The guy who wrote that episode is actually an SMA parent who I had on the podcast a few years ago. We met…

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Hello, SMA community!

I enjoyed this column by Anna Jeter. This is from Pulmonary Hypertension News, one of our sibling sites. Anna writes about many of the frustrations she’s had with medical dramas in the past, and how they are often woefully inaccurate. As a patient with pulmonary hypertension, she stopped watching these shows for a long… Read more

Finding new caregivers is always the hardest part for me! Fortunately, I’m in a good spot right now, but there’s always that anxiety about if and when things will change. I just kind of take things day by day, but the mental and emotional toll is something we all deal with.

I also hibernate during this time of year, especially with winter storms and colder temperatures. It’s definitely more isolating, and January does feel especially Long. But on the flip side, I do enjoy having more time to watch movies, read, and work on my creative projects. My day job certainly keeps me busy, but since I’m indoors anyway, I…

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Hello! My family and I did a Disney cruise back in 2006. Granted, I was much younger then, but I had a great time. We are doing this again in 2027. I found it to be a very accessible experience. For one, there’s a lot to do on the ship, so I didn’t have to worry about travel or anything. As long as you have a room with the right…

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Hello! I would recommend reaching out to Cure SMA. They are the largest SMA advocacy organization. curesma.org

I love this topic! My favorite play is “The Glass Menagerie” by Tennessee Williams. I always wanted to play Tom, and I think his character would be really interesting if it were done from a disability perspective. Another one is the film “Roman Holiday.” I think a classic romcom like that with a disability lens added to it would be fascinating.

Thanks for sharing, Mike. I appreciate your perspective. And thank you, everyone here! The more we can learn from each other and support each other, the better.

I actually hadn’t watched any other medical dramas previously, but I also love The Pitt. While it’s not light escapism, the storytelling is superb and captivating.

Absolutely, I hope you find a solution soon!

Hello! Thanks for sharing.

Treatment experiences and side effects will vary, and I do recommend speaking with your medical team about this. Personally, I’ve only ever been on Spinraza, and I’ve been fortunate to not have any side effects. But I’ve heard from many others who either have prolonged side effects, or they have ones that get better…

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I’ve definitely felt this way plenty of times before. I don’t think it’s at all overly negative to recognize the hardships that come with living with SMA. Validating your feelings is important, and it’s OK to vent and reflect. There are certainly days that are better than others, and I think living with SMA is very nonlinear. But it’s…

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Hello, SMA community!

Hope everyone is having a great summer. It was wonderful seeing so many people at the conference recently, and I’m excited to share several videos about that in the coming weeks.

First, I wanted to highlight this video series we did earlier this year. This one is about building a healthcare team when you have SMA.… Read more

I use the nasal one as well. I definitely get the issues you brought up, but it’s still the most ideal for me. Anytime I had the full-face masks, they always led to more sores and irritation. The nasal ones can still be irritable, but overall, they’re much better. I wonder if you could ask your caregivers to practice adjusting the mask…

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Hey, Lindsay! I’ve been to NYC a couple of times: https://smanewstoday.com/columns/sma-didnt-get-way-adventures-big-apple-part-1/.

A carry-on bag is definitely helpful. It’s been a few years, but I rode an accessible taxi and it went well. Have a great time!

Thanks for being here, Sherry! For everyone here, I highly recommend Sherry’s column.

@robin-c I love this. Thanks so much for sharing.

Hello, forums community. There’s no easy way to share this news, but it is with deep sadness that we announce the passing of our dear friend and moderator extraordinaire, DeAnn Runge. I spoke with DeAnn’s mother earlier today. We’ll update this page when her obituary is posted, but her mother gave us permission to share it with you…

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It was more of an adjustment at the beginning, but I’ve gotten used to it. The dietary changes have been beneficial.

Haha I’m glad! And yes, that’s a good one.

I saw two good documentaries recently: “Super/Man: The Christopher Reeve Story” about the late actor, and “Will & Harper” on Netflix. The latter is about Will Ferrell and his friend Harper Steele on a cross-country road trip after Steele’s coming out as a transgender woman.

I received a type 2 diabetes diagnosis earlier this year, so I’ve made significant changes to my diet. Now I get most of my snacks through a keto-friendly brand called Catalina Crunch. They’re great. I also like smartfood popcorn.

It is a dilemma! We invested in a generator earlier this year and are glad we did. I also use my BiPAP every night.

Love this post! Grateful for DeAnn and Alyssa and everyone here.

I wrote about an exciting development here in my latest column! https://smanewstoday.com/columns/im-hopeful-travel-will-get-easier-people-with-disabilities/

Hey Susana, I’m not sure if this will work for you, but I wrote a column about how I manage this a while back: https://smanewstoday.com/columns/turn-page-already-reading-books-physical-obstacles-challenges-resourcefulness/

Echoing what DeAnn said, you’re not alone. I too believe community is essential, even when you don’t feel like connecting with others. Gaming communities can be very beneficial.

In terms of work, I think our culture puts too much emphasis on work as inherent to our identity. There’s nothing wrong with prioritizing your health in place of a…

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I personally haven’t had luck with them but I know plenty of Disabled people who have. I’d say give it a try.

It’s an incredibly frustrating process. I have a great team right now, but I’m not looking forward to when one has to leave next year. Just know that we feel you.

Thanks! Yeah here’s the IMDb page: https://www.imdb.com/title/tt1262426/?ref_=nv_sr_srsg_1_tt_6_nm_1_q_wicke

Thanks so much! And yes, it will be interesting.

This discussion prompted me to write a column about this.

Hey Aimee! So Wicked is one of my favorites and I just saw it again as well. And I have thought about Nessa’s character.

As much as I love the show, it is problematic. On the one hand, the ableism and isolation she deals with is raw. But then she grows up into a lonely and bitter totalitarian figure. It’s not the best disability portrayal.

If…

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This year was great! And some of the sessions were recorded and are available here on Facebook: https://www.facebook.com/cureSMA/videos

@Blake Watson thanks for the feedback! Yeah, our tech team is working on this.

Welcome @David @Natalochka!

Hey everyone! We’re getting it working now. Please let us know if you have any questions or issues. Feel free to email me: kevin@bionews.com

Hey Rian, I made the change for you.

Hey Lindsay, do you use Vocational Rehabilitation services? They may be able to help.

My bad. And thanks!

Here you go!

Hey man, it’s tough. I always say don’t give up hope, but it’s also ok to vent. Something that helps me is going out when my caregivers are here, as they can drive me. And I know they’re frustrating for anyone, but are you on any dating apps?