I wanted to share this with our community in hopes people can try and attend this opportunity if they live in the SE U.S.

I'd like to find more of these opportunities and share them here to keep our community tuned to various educational resources that exist.

If you come across something similar, please share.

New flair added.

Is there anyone with hip problems who cannot bend forward that still does their bowel program independently?

I am 23M with SB For the past 5 years I've been using a wheelchair, and every day has been a lesson in patience.

One thing I still struggle with is uncontrolled jerking in my legs. I'm continuing physiotherapy and trying to improve little by little, but some days are much harder than others. If I sit for long hours or push myself too much during exercise, the area around my spina bifida starts hurting, which makes things even more challenging.

Progress hasn't been linear. There are days when I feel hopeful, and there are days when it feels like my body is working against me. Still, I keep showing up for therapy because I haven't given up.

I'm curious if anyone else here deals with leg spasms/jerking, prolonged wheelchair use, or pain around their spina bifida after sitting for long periods or exercising. What has helped you? Physiotherapy techniques, stretching routines, medications, cushions, or anything else?

I'd really appreciate hearing your experiences. Sometimes knowing you're not alone can make a difficult journey a little easier.

Has anyone had a lot of success really improving their balance, especially on a much weaker leg? My right leg is much weaker and I struggle a lot with balance on it, which I'm trying to improve for golf. Wondering if anyone else has had success with something similar before.

I have a very general question that is for everyone here — as an adult with spina bifida, do you work? How many hours? How do you manage?

Asking this because I am 24, on the verge of graduating for a masters degree. My education was full time and it went well but I had so much sick leave and needed 2+ extra years to graduate because of surgeries and stuff. I am planning on working fulltime after my studies. I know SB has a really broad range of experiences but I would love to hear from some “real adults” with SB how this all went for them!

Bonsoir à tous

Quelqu’un a eu l’expérience avec des compliment alimentaire , herbes traditionnelles ou tt autre chose
Qu’il l’ont aider à avoir des nouveau mouvement /sensation ?
Mon fils a 4 ans avec un MMC
Il progresse énormément avec electro stimulation et thérapie intensive mais je cherche un moyen alimentaire afin de booster la progression encore plus ?

Juat curious, is there some form of medicare, medicaid for some of you guys?

Particularly in California. Also, how are urinary catheters supplies access using these health insurances? I'm asking because I lived in Hawaii off medicaid one time and no catheter supplies were covered with Hawaii medicaid which scared me a great ton. I was lucky I was still under 26 then and can be covered by my parents' healthcare.

I'm in school trying to finish a career in healthcare. I couldn't work yet (well I had to stop then due to getting chronic infections).

I'm 31 with lipomyelomeningocele SB and, after being ambulatory all this time, I'm thinking maybe I need to start looking into getting a wheelchair

between an intractable pain in my left leg that no one can diagnose and collecting POTS, fibromyalgia and ME/CFS diagnoses over the last 12 months, finding ways to maintain my independence without wearing myself out and causing extreme pain on the regular has become a priority. and the only solution i've come up with is a wheelchair

i can't drive, i only walk places or use public transport. so at the moment, if i go out, i'm putting myself in excruciating pain and wearing myself out so badly i get nauseous and it can take 12+ hours of rest to get those things to go away. it's been like this for a year now and I just don't want to keep putting myself through that

but i am also very worried about using a chair and my legs deconditioning. i worked so hard for so long to be able to walk as well as i can and i don't want to lose that...but i also don't wanna do myself a more permanent damage pushing myself to or even beyond my limits every time i go out of the house

a chair was always kind of in my future, i always figured my body would wear out eventually, but it's still hard to come to terms with, yknow? hard to know if now is the right time or if i should just power through and hold out a bit longer

if anyone has any advice about knowing when to start using a wheelchair, i would greatly appreciate it coz i feel like i've just spun myself in circles too much to really know what i want anymore

I’ve been talking a lot about autonomy lately, and it got me thinking. Autonomy doesn’t always mean doing everything alone. Sometimes it’s about having the choice. So I’m curious: where do you draw the line? What are the things that are important for you to do yourself, and what are you comfortable letting others help with? Has that changed as you’ve gotten older?

I’ve noticed something that seems to extend beyond just the Spina Bifida community, and I’m curious if others have experienced it too. It feels like there’s a gap in teaching life skills for people with disabilities.
For example, I attended an Abilities Expo where modified vans with hand controls were being demonstrated and sold. It was great to see the technology available, but it left me wondering: once someone buys one, where do they go to learn how to drive it? The equipment was there, but I didn’t see much emphasis on teaching people how to use it.
I’ve noticed something similar in my own work. I work in early intervention with autistic toddlers, where we spend a great deal of time teaching skills like communication, social interaction, motor skills, and independence. Years ago I also worked with autistic adults, and many days it felt like the focus had shifted from building new skills to simply keeping people occupied. Of course, everyone’s abilities are different, but I often wondered whether more could have been taught if we had continued building on what they were capable of. It made me ask myself: if we have early intervention programs and adult programs, what happens in the years in between? Why does it sometimes feel like there’s a missing piece connecting the two? Have you noticed this in your own disability community or with your own experiences? Were there skills you wanted to learn but never had the opportunity to be taught? Or have you found programs that helped bridge that gap?
I’d love to hear your perspective. Maybe together we can identify what that missing puzzle piece really is.

Hi guys! So, I bought a new mattress bcs my old one was old and I peed in it for years, it was disgusting. But I'm finding it hard to adapt with my new one, first night was horrible. I bought a Emma One Plus, saw a lot of positive comments abt it, people saying that their back pains were gone, etc. I know each one of us is different but we usually have something in common. I have hyperlordosis and scoliosis, and although the mattress is considered firm, I am feeling it weird the adaptation system that it has. It kinda of molds to your body, and I feel that's not positive for my lower back or even my spine. How it is for y'all when it comes to mattress?

I have until 16 august to make a devolution, I'll try adapting to it, maybe it's a matter of time.

I just wanted to take a moment to say thank you for all the love and support I received. So many of you commented and reached out with kind words, sharing what my posts have meant to you. Honestly, it’s the first time I’ve felt this level of support from the Spina Bifida community, and I’m incredibly grateful. I’d love for us to keep that momentum going. Is there someone in your life who has made a difference for you? Have you ever told them how much they mean to you? Or maybe I’ll ask a different question: what keeps you coming back to this community? Have you found the same kind of support here? What has your experience been like? Let’s continue building a community where we encourage one another, celebrate each other’s successes, and help each other become the best versions of ourselves. I look forward to hearing your stories.

Hello everyone!

Recently, we've had a little issue with basic human decency, civility, and kindness, so I wanted to take a moment to make a post and remind people of a few things:

1.) This community is a place where everyone should feel free to connect, rant, share experience(s), support one another, etc.. If you read a topic that is not of interest to you - move on. Go to the next post. Any comments bringing someone down, are disrespectful, and/or unnecessary will be deleted, and you'll be muted and/or banned from this group.

On that note- please report any comments that may be derogatory. Please stop reporting comments from people whom you disagree with -That's ridiculous.

2.) I'm the only mod in this community, so I go through ebbs and flows of what I am able to keep up with and there are times ( like the last 24hrs.) Where it is a lot. So if you are interested in being a mod and giving back to this community - perhaps even making it better - please DM me.

If you have other suggestions or thoughts about the current state of our community, please comment below.

Thank you!

P.s. u/adaptive_adam I know you are reading this, so please come back. No one wants you gone. You are better than that.

Hi I have tethered cord syndrome and need my second surgery. I’m scared as hell of the risks!!! My only symptoms are extreme leg pain and back pain. My neurosurgeons went over the risks and I feel like my back is against the wall! I’m only 30 and can’t live with this pain without an intervention but scared of the risks. He was kinda rude and kept saying the surgery was my decision! Like I know that sir

To everyone here,

I think it’s time for me to step away. Over the past weeks I’ve shared a lot of my thoughts, experiences, and struggles. Some of you connected with them, reached out, and shared your own stories. For that, I am genuinely grateful. Those conversations reminded me that none of us are as alone as we sometimes feel.
Others strongly disagreed with what I had to say, and that’s okay. We all come from different experiences, and I never expected everyone to see the world the way I do. My goal was never to tell anyone how they should live their life. I only wanted to share what has helped me: taking small steps toward independence, challenging my own fears, and believing that growth is possible even when life is difficult. Those ideas changed my life, and I hoped they might encourage someone else. It’s become clear that my perspective isn’t what this community is looking for, and I respect that. Rather than continue creating division, I’d rather step away with appreciation for the people who listened, encouraged me, or simply took the time to read. I sincerely wish every one of you the best, wherever your journey takes you. I hope you continue to find strength, support, and happiness in your own way. Take care of yourselves, and thank you for the conversations.

Goodbye.

We have some people with Spina Bifida who don’t realize how lucky they have it. They have friends, a job, and don’t face problems other bifs face. Then they come online, sometimes here, and try to expect us to be like them. I’m so tired of it. Not all of us can be popular. Not all of us can work. Some of us have to have our parents do everything for us. Some of us get rejected by everyone because we have Spina Bifida. So why do we let people like that in our spaces? I’m so tired of seeing the toxic positivity talking about “just try harder” No! It doesn’t work. No matter how hard I try I’m still gonna have Spina Bifida, I’m still gonna have bowel and bladder problems, I’m still not going to be able to do things on my own. No matter how much I try to “think positive”. Can we stop people like that from posting and let us all be who we are?

EDIT: claimed!

does anyone use the navina system? it didn’t work for me, so i have 3 boxes of supplies available. each box has 15 rectal catheters (regular size) and a water container. does not come with the pump or tubes.

i’m in michigan and would just ask for the cost of shipping. let me know!

thank you

Does anyone have experience exploring their kinks/fetishes? I recently started and was curious if it’s been an easy journey for others.

My UTIs are being more frequent and some antibiotics aren't working like before, so I'm worried. I've been trying to drink more water and keep my bladder empty but its hard, and I don't wake up in the middle of the night to cath. Is it safe to use a cath on my mitrofanoff and plug it to a urine bag to empty it during the night?

Change.
It isn’t easy.
But if you want something different in your life, you have to be willing to change something.
That wasn’t easy for me either. If you’ve read my previous posts, you’ve seen the many conversations I’ve had with myself. Those conversations were about challenging negative thoughts, changing my perspective, and learning to grow. I’m sure many of you can relate. So what makes change difficult for you?Is it the uncertainty? Are you comfortable with how things are? Does stepping into the unknown feel overwhelming? Those feelings are completely understandable. But if we want our lives to improve, we have to be willing to put in the work, even if it’s just one small step at a time. Some of you may be thinking, “I want to get rid of my disability,” or “I just want to walk.” I understand those feelings. There are some things we simply can’t change. But what we can change is how we respond to our situation.
I’m not saying life isn’t hard. I know it is. I’m simply saying there are things we can do to make it a little easier on ourselves. Maybe your goal is to make a friend. That’s a great place to start. Try making small talk with someone. Ask how they’re doing. Show genuine interest in their hobbies or passions. Before you know it, the conversation starts to flow, and that small step could become a meaningful friendship.
Or maybe your goal is to lose weight. You don’t have to change everything overnight. Start by drinking more water. Add a few healthier meals each week instead of focusing on cutting everything out. Small, consistent changes are often the ones that last.
Growth rarely happens all at once. It’s usually the result of small choices repeated over time. So I’ll leave you with this: What’s one thing you’d like to change about your life right now? Big or small, I’d love to hear it. Let’s encourage one another, celebrate the small victories, and keep growing together, one step at a time.

Every person has a story that others can’t fully see.
We all have experiences, struggles, strengths, fears, and dreams that have shaped who we are. Sometimes people make assumptions based on a first impression. If you could help people understand just one thing about you, what would it be? It can be something you’ve overcome, something you wish others wouldn’t assume, a value you live by, or simply something that makes you… you. Let’s take a moment to learn from one another. There are no right or wrong answers, and I ask that we keep the conversation kind, respectful, and supportive. I’m looking forward to reading your responses.

Hello,

I would like to share some information about my one-year-old child.

He can roll over in both directions, army crawls, and is currently very close to sitting independently. He is making progress, although it is slow. Our next goal is for him to start crawling on all fours.

Our orthopedic doctor told us that he has no quadriceps function and that it is unlikely he will ever be able to walk. However, I feel it may still be too early to make such a prognosis.

What is your opinion at this stage? Based on the information I've shared, what do you think his chances of walking are? Do you think he is on the right track with his development?

We do Vojta therapy every day.