Mahalo

[DancinDingo]

Greetings!!

I'm a friend of someone who has Spina Bifida, I'm not sure to what extent but I do know she is quite advanced (if that's a fair desc). She's the sister of a very close friend and all though we've never met, I know her quite well through phone conversations.

The deal is, we're all going skiing over the holidays and I know she can't ski so I want to know boundaries, socially and physically. Even things that are borderline hard but could be done with the help of another.

I've done research and understand the textbook-scientific descriptions, but I want to know what living with it is like so I can connect with her further and maybe understand her situation better.

Any help appreciated!! JR

PS - Mahalo is a Hawaiian greeting similar to hello

[Barb]

Welcome. That is so sweet. What a great friend she has in you! The thing about spina bifida is that a lot of it depends on what her 'level' is, meaning where exactly her spine was open at birth. A person with a level S1 functions completely differently than someone with a T1. MOST people seem to be affected somewhere in the L's. The lower the opening was the more function the person will have. If she walks the opening was pretty low. That may mean that she may only have some bowel/bladder issues which she probably has under 'control'.

There is tons of adapted skiing equipment so most likely the actual skiing will not be an issue.

Hopefully some adults here will jump in and help you out!

[DancinDingo]

Thank you!!

I do hope some chime in, I would love to chat with anyone willing.

I know she uses a wheelchair but I don't know what level she is. I'll ask her brother.

Going off-topic, I've seen people list themselves with T-numbers but I've never understood what it means and there's nothing that has come up in searches. Would you mind explaining it to me (or anyone)? Thanks

[Barb]

This is a great picture that shows the levels of the spine. The higher up the opening the greater the level of involvement.

http://www.spinabifidamoms.com/graphics/med_eng/fig3eng.gif

My son is considered an L3-L5. He can walk short distances with braces on (or could before spinal detethering surgery this May). He has a shunt for hydrocephalus, has a Chiari Malformation, and has bowel/bladder issues.

[DancinDingo]

Barb,

That's a nice chart, thank you for posting.

My friend’s sister sounds similar to your son @ L4-5, so I assume she is the same regarding walking, etc. I know she uses a wheelchair but to what extent I’m not sure. She's never enjoyed conversations about her handicaps, which is why I'm virtually in the dark. Is that how most people in similar situations are?

How is your son on picture taking? Does he mind having his picture taken w/ braces or a wheelchair?

[Barb]

How is your son on picture taking? Does he mind having his picture taken w/ braces or a wheelchair?

No, both are completely normal to him so he doesn't think twice about it. Now, when we have family pictures taken he usually wears pants (we all do) and we are all sitting so the chair isn't in the picture. So, come to think of it any of our 'professional' photos you could never tell he was in any way different from our other son but out and about pictures are always just as he is at the moment-usually in his chair.

[Holly]

PS - Mahalo is a Hawaiian greeting similar to hello Welcome to SBC! So glad you found us!

[qk2jdge]

in person or on the phone with people except my immediate family, i never like to talk about my handicaps. mainly cause i just don't want people to know my extent level. online it's different because you don't face people, and my mom and PT are always telling me i should be more open with everything because people always have questions.

as far as pictures, I don't favor them, just cause i have so much equipment. it's also really frustrating to get a good picture anyway because i wear a full time helmet with full face shield that's tinted for my reflex seizures and whenever a flash goes off it looks black. anyway if your friend has extensive bracing etc i would imagine she wouldn't want her pic taken either. braces never end up looking good in any picture.

[kali]

welcome....
just treat her as you would anyone else, thats probalby what she wants. and probably why she doesnt want to talk about her sb. and you know something, they are like just anyone else, if you look beyond the handicap. as she get to know you more and trust you, she propaly will talk about her sb
kali

[DancinDingo]

i'm 99.9% positive i can make her look good and that includes any bracing or wheelchair, considering that i am a fashion photographer by trade - it's my job to make people look good.

i thought the experience would be fun for her, and make her feel good too. plus her mom and dad have asked me for years, so i thought this trip is as good as any. plus the nature backdrop seems more fitting then a studio.