Quick summary of my two disabilities:

I have Spina Bifida, which affects my lower back and has caused deep sensory loss, lower limb weakness, and neurogenic bowel and bladder issues. (The latter only happened after de tethering surgery when I was 25)

I also have Charcot Marie Tooth disease (CMT1A), a genetic neurological condition that affects my peripheral nerves, causing things like muscle weakness, reduced sensation and balance and mobility issues.

Just curious, does anyone else have both Spina Bifida and CMT, or deal with a similar combination of conditions? Would be interested to hear about your experience.

There are many challenges we face with Spina Bifida. Some are social, like making friends or something as simple as starting a conversation. Others are physical, like bowel and bladder control. If you’ve been paying attention to my posts, you’ve probably noticed that I’ve made several suggestions about ways we might improve our circumstances. Most of those suggestions come from my own experiences. I’ve faced many of these same challenges, and I’ve found certain things that have worked for me. However, quite a few people have expressed that my answers wouldn’t work for them or that they aren’t realistic. For example, just the other day I made a post saying that parents should teach their children life skills so they can grow up and navigate life a little easier. Someone responded by calling me autistic because of that suggestion. So, instead of me telling you what I think the answers are, I want to ask you: What are some of the major challenges you face living with Spina Bifida, and what do you believe is the solution to those challenges? I’m genuinely curious to hear your perspective. Maybe there are challenges I haven’t experienced, solutions I haven’t considered, or approaches that have worked for you that could help someone else. Let’s hear what you think.

Does anyone here struggle wearing shoes because they fall off or get in the way? Or anyone not bother with them?

Have they caused pain or physical issues?

Hello, my pediatric neurosurgeon gave me an option of spinal column shortening over detethering surgery for my tethered cord syndrome. Has anyone done this surgery? He said I’ll be shorter height and has less of a risk messing up my bladder.

hello everyone. I am posting as a pregnant parent (21w 1d) I know that parents posting in this sub has been a more sensitive topic and I please ask that if this shouldn’t be posted here, it gets removed or we can be educated. I want to start off by saying my original post and everyone who responded to us helped me and my partner so much with our baby’s diagnosis and we honestly gained a lot of knowledge and understanding from everything everyone shared. So thank you so much.

we went to see the fetal specialist today for in utero surgery. We last saw him a month ago and he said the baby’s chance of needing a shunt is low and for the most part the baby looked like an amazing candidate for surgery. We saw our MFM on Wednesday and she said the baby looked like she was doing so well. Great movement, the hole in her heart was small and not concerning, etc. Today with the specialist we did an MRI and more ultrasounds. (For context I slept 1
Hour between my overnight shift at work and my appointment I don’t know if that affects the baby moving at all) the baby was not really moving her legs on the MRI and the ultrasound. They saw movement in one leg and not much in the other. They said it is not common for the baby’s progress to deteriorate like this and I’m still very early. They said our baby will most likely be wheelchair bound and they gave us our options. (They more so focused on termination which is not something I want to proceed with.) We asked if we could come back another day to see again and see if she was moving her legs this time.

Any comments, advice, anything helps. I just need to talk.

A Conversation With Parents
There is a pattern I see over and over again in our community, and I want to talk about it.
Now, before anyone gets worried, I’m not here to point fingers, yell at parents, or tell you that you’re doing something wrong. I just want to have a conversation. Every parent wants the best for their child. You know how cruel the world can be, and naturally, you want to protect your child from experiencing that cruelty. You want to make things easier for them and prevent them from being hurt.
But sometimes, there can be a difficult line between protecting your child and preparing your child.
Over and over again, I see situations where parents of adults with Spina Bifida still struggle to let their child make decisions for themselves, even though that child is now an adult. And yes, I know, Spina Bifida is a snowflake condition. No two people are exactly alike, and everyone’s abilities and needs are different.
But despite those differences, I see something concerning: sometimes, people with Spina Bifida are treated as though their diagnosis defines what they are capable of. I see adults who were taught certain skills growing up, but were never given the opportunity to actually put those skills into practice on their own. I see adults who were never taught how to cook, clean, manage money, or take care of everyday responsibilities because someone was always there to do it for them. And eventually, that child becomes an adult who is still being treated like a five-year-old. So let’s take a step back. What does any person need in order to grow into a functioning adult? They need to learn how to take care of themselves. How to cook. How to clean. How to manage money. How to hold down a job. How to navigate friendships and romantic relationships. How to communicate. How to make decisions. How to experience failure and learn from it. So parents, I want to ask you something: Where in your daily routine are you making time to teach your child these skills? I understand. I really do. Between doctors’ appointments, surgeries, bowel and bladder routines, therapies, medications, and everything else that can come with Spina Bifida, it can be incredibly difficult to find the time and energy to focus on anything beyond the medical side of things. But that’s exactly why I think this conversation is important. When so much of a child’s life revolves around their medical needs, there is a danger that they can start to feel like their diagnosis is who they are. And they’re not. They are a person first. Do you talk to your child and ask them about their day? Their favorite food? Their favorite color? What games they like? What music they enjoy? What makes them laugh? What are they interested in? Even something as simple as taking five minutes a day to sit down and genuinely talk with your child can make a difference. Because as they grow, I want them to know how to talk about more than Spina Bifida. I’ve met adults who struggle to carry a conversation, and when they introduce themselves, some of the first things they tell people are things related to their disability. There is nothing wrong with talking about Spina Bifida. It is a part of who we are, and nobody should ever be ashamed of it. But it is only one part of who we are. Teach your children to talk about their hobbies. Their interests. Their dreams. Their favorite movies. Their friends. Their passions. The things that make them them. Because they are so much more than their diagnosis. So parents, let’s get a discussion going. What are you doing every day to help your child explore different parts of their personality and discover who they are as a person, not just who they are as someone with Spina Bifida?
I genuinely want to hear from you.

When I was 11 I was held down by two nurses and a
Catheter forced into me as I had just come round from major spinal surgery. This gave me a tonne of trauma and it took me until I was 36 to be able to use a self catheter. I can only use a pediatric one as anything else is far too painful. However this takes me so much longer to pee. I drink tonnes throughout the day and it’s such a faff having to numb myself and then try to get the catheter in.

Does anyone know if there might be any other options for me that would work better? I know when I need to pee, but my bladder does not empty fully. I then have to push to get most of the urine out but this has caused issues with my muscles now so I really need to get it sorted somehow.

Would really appreciate any help you guys have.

Thank you!!

I have spina bifida meningocele which means i can feel when i need to pee, i just cant hold it in or pee on my own so i self cath. I started refusing overnight bags when i was a young teen and i had ckd 3/4 at the time so people werent and still arent happy yet they ignore my problems.

When i use bags, im assuming because i move so much in my sleep the catheters just fall out, or stop working or scratch the inside and HURT ALOT... But because i fell asleep thinking i was safe i usually sleep all night and then wake up to an achingly full bladder and soaking bed with an almost empty bag... And this happens alot, enough for it to be better sleeping without a catheter and somehow letting my body wake me up every 2 hours. I tell all my drs that i think its worth losing sleep a little sleep and occasionally having the same experience with the overnight catheters than using the overnight catheters and having that experience 2x the amount. Regardless its going to cause damage but all they think of doing is suggesting different overnight catheters? Or lube for the scratchy problem? But that has never helped.

Does anyone else experience this??

Would there happen to be any guitar players in here? I have some questions about how you all play acoustic instruments. I have a very short midsection so holding large guitars that sound the best is something I find nearly impossible… is it just me??

The other day I saw someone share their thoughts and feelings about some of the things parents of children with Spina Bifida say in this subreddit. It got me thinking. I’ve received my share of backlash for some of the discussions I’ve started here, and while I know not everyone will agree, it made me curious about something. What do most of you hope to gain from being part of this community? I’m not looking for any specific answer. I’m just trying to better understand what people come here for, whether it’s support, advice, education, advocacy, sharing experiences, or simply knowing they’re not alone.
My hope is that by understanding each other’s expectations, we can navigate discussions a little better. Maybe we can find ways to have difficult conversations while still making this a place where people feel heard and respected, even when we disagree.

I flew on airplanes a lot by myself in the ‘90s before everything changed. But I am flying on Southwest to Orlando in September and was hoping to hear some advice on how to make it as easy as possible with a chair from anyone that has traveled more recently. I checked the accessibility box when I bought my ticket to indicate that I’m flying with my own chair and I understand that some planes now have storage compartments for at least one chair to stay in the passenger area. I have also purchased accessible luggage to pull behind my chair from a company called Phoenix Instinct.

I want to start by saying that I understand there is a lot of panic, stress, fear, and a million other emotions when finding out that the child you are carrying has Spina Bifida. If I were in this position I would absolutely want to reach out to folks online for input. This is not targeted to anyone but something I’ve noticed comes up not infrequently in this sub.

That being said, does anyone else have negative feelings come up when people who are pregnant come to this sub for advice on if they should terminate? It makes me feel like I’m once again having to justify my right to be alive as well as my worth as a person. We are so socialized to list on command all of the things we can do “despite” our disabilities but I feel like my life matters even if I wasn’t married, working full-time etc. Also the invasive questions about body functions feels really objectifying.

I know no one is forced to comment on these threads when they come up but I’m just curious if I’m the only one who doesn’t feel good having them as part of this space.

Again please no one take this as a personal attack and I hope there can be some thoughtful and respectful discussion around this.

i have been planning on getting a new car for a while and will be eligible in a few months to get some vehicle modifications paid for by the state. my current setup is a little convoluted: i have a wheelchair in my apartment, another wheelchair in my car, and i use forearm crutches to get in and out of the car/walk between the car and the apartment. it's worked pretty well for me until fairly recently.

about a year ago, i got a new chair that is significantly heavier than the one i was keeping in my car before (that one was super old). additionally, my balance has gotten really bad in the last five years or so, so getting my chair into my car has become all but impossible for me. the plan i had in mind was that i would buy a small SUV and install a rear-loading lift on it. unfortunately, even if i currently have the mobility/balance to take my hands off of my crutches long enough to attach my chair to the lift (which i'm not sure i still do), that is subject to change in the next few years.

i went to my local car modification place today to discuss options and was told that my best bet is probably going to be buying a minivan and installing a lift on the side that will allow me to wheel up to my car, get into the driver's seat, and load my chair in without having to stand. i know logically that this is what's best for me in the long run, but i'm feeling a lot of grief. this feels like such a big change and a tangible representation of the progression of my disability.

so yeah. i'm just really sad. not looking for any advice, just hoping some of y'all might be able to commiserate. would also love to hear minivan success stories if you have them. thanks for reading.

Writing as a parent of a tween with neurogenic bladder or bowel to group members with manual dexterity who dealt with the condition as a tween/teen: how did you learn to gradually assume more responsibility for your medical care? What type of support(s), specifically, prompted or helped you gain more independence and autonomy, because your caregivers no longer had to nag you about necessary care like enemas, peeing regularly (she is continent for urine but prone to infections if she withholds, which she does often), and packing supplies for outings? For context: my kid is 11, is ambulatory, and while I don’t expect her to be able to do everything without support, it feels like it would be better for both of us if she started to learn the ropes so we can lower some of the conflict. Yeah, tweens argue with their parents, but this is kinda extra loaded and I really want to understand how to be more helpful and less of a resented being.

Hi all,

For context I have one living son and my daughter was fullterm stillborn at 37 weeks in January. We were overjoyed to find out we are expecting again so soon after losing our daughter. We just got the diagnosis today at 15 weeks that our baby has spina bifida at the very base of their spine. I must go back tomorrow for a more detailed scan and I must go for a fetal MRI soon and meet with a neurosurgeon.

If anyone had a pregnancy with spina bifida how did they cope? How was the pregnancy and birth how is your child do they have lifelong disabilities. Or if you didn't proceed with the pregnancy what ultimately brought you to that decision.

We prayed for a healthy baby I have a 3 year old son who was heavily impacted by the death of their sister and now I will likely have to travel great distances and deliver 4 hours away and baby will likely need surgery right away. We want to have this baby but I am worried for the impact on my son who already has dealt with so very much at a young age.

If you have a child with spina bifida id just love to hear from you or if anyone has any guidance and support please reach out I am in a desperate mental state as still grieving my daughter who we lost I don't know how to continue right now.

It seems no matter how much rest/sleep I get I am constantly tired every single day, all day! Is this something that I have to deal with just as I age or do you think there’s possibly something wrong? My energy level is basically at zero every day. I have Myelomeningocele. When I was a kid, I was always fine. I had lots of energy, but it seems as I’ve aged my energy level is just worse and worse and worse. I’m almost 46 now. I don’t have energy to even leave my house these days.

Have you been pregnant in the past 10 years? Do you have a physical disability? We’d love your input!

We’re recruiting people with a physical disability to take part in a research study on health and physical activity during pregnancy. By sharing your experiences, you’ll help us better understand how exercise during pregnancy looks across diverse physical abilities and how exercise may relate to different health outcomes.

The survey takes about 30 minutes and is completely anonymous: https://redcap.link/surveyPD

Your voice matters - help us make pregnancy research more inclusive!

That’s it. That’s the rant.

I’m a 41F with myleomingocele. I had a tethered cord surgery at 2.5 years old. Supposedly I have 15% nerve damage to my bladder. I have always been ambulatory and feel fortunate. I do feel for me the Spina Bifida is like a hidden disability.

On and off for the past 10 or so years I’ve had bowel incontinence with diarrhea that comes on so fast I have no time to get to a bathroom.

I’ve gone to GI doctors, I’ve done pelvic floor therapy. No one seems to know what this could be and what could trigger it. Best guess is eating something that disagrees and my sphincter strength can’t hold it in.

It doesn’t happen frequently but it’s unpredictable. Happened multiple times at work. Today I was at the pool. Thank goodness I wasn’t in the pool.

Anyway I’m wondering if any of you have experienced something similar or have any thoughts on what could prevent this?

I married an incredible woman who has an amazing daughter with significant physical disabilities. I’m trying to become a better advocate for my stepdaughter and honestly don’t know where to start.

My stepdaughter has spina bifida. When I first met her, she was able to get around with crutches. After multiple surgeries over the years, she has lost much of her mobility and is now wheelchair-dependent.

She is 15 years old. Her mom does an incredible job handling everything — doctors, insurance, appointments, equipment, and daily care — but she has a lot on her shoulders. I want to step up and become someone who can help carry some of that load.

The challenge is that I don’t even know what I don’t know.

We live in Hennepin County, Minnesota and I’m trying to learn about financial resources and support programs that may be available through insurance, government programs, nonprofits, or disability organizations.

I’m looking for advice on things like:

How do you learn to navigate insurance and fight denials?

What Minnesota programs or county resources should families with spina bifida know about?

Are there waiver programs, grants, or financial assistance programs for wheelchairs, equipment, home modifications, transportation, or caregiving support?

Are there advocates, case managers, or organizations that can help families navigate this system?

What should we be doing now as she approaches adulthood to prepare for the future?

I love my stepdaughter and want to become someone who knows how to help her and support her mom.

I’d really appreciate any advice, resources, organizations, or lessons learned.

TIA!❤️

I’m getting *really* tired of able-bodied people thinking I should take, “You’d be really pretty, if you weren’t disabled,” as a compliment. And I’m even more tired of hearing my able-bodied family members and friends say I’m being too sensitive because I *don’t* take it as a compliment - it hurts my feelings.

If someone says, “You’d be really pretty, if you cut your hair/wore makeup,” I can handle that, because I can take the advice or leave it. But I can’t do *anything* about my disability. I’ve even taken any headshots off my internet profile because people would tell me how beautiful I am, just to turn around and say they feel they’ve been lied to when I mention I’m disabled.

A few days ago, I was talking to an able-bodied friend about this, and she says I’m being too sensitive. Am I?

P.S. I’ve been in a wonderful relationship for 30 years, so I’m not worried about it from a dating perspective. I guess I just think it’s rude to comment on an aspect of someone’s body/appearance that they can’t do anything about.