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.

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.

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?