What is Spina Bifida
Spina bifida is a Latin term which means "split spine" and describes birth defects caused by an incomplete closure of one or more vertebral arches of the spine, resulting in malfor...
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I was born with Spina Bifida (L4-L5). The level of my Spina Bifida allows me to walk but I get tired standing too long or walking long distances. Since college I have been relying on my wheelchair a lot more to get around but before that at school I just used AFO's which I no longer use. I guess now it has become somewhat of a comfort to know I have the chair and not have to worry about getting too tired. I played regular soccer from age 7-12 and from 8-18 I attended a wheelchair sports camp during the summer. I have been playing wheelchair sports on a year round team for about 8-9 years now but I walk around at home. I feel like I have one foot in the able-bodied world and one foot in the disabled world. On my good days I embrace it as an opportunity to see things from many prospectives but on my bad days I feel like I don't fit in to either group. Can anyone relate to this?
Posted on 05/04/09, 03:05 pm |
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Hiya, im the same as you really. I can walk, but not for long. I have my right leg amputated from below the knee and my left foot is really weak and flips(turns inwards).
I have a wheelchair from the nhs, buts its crap. So im saving up to buy a good chair at the moment. 
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Hi Mags23
I totally relate as i have spina bifida occulta and use both arm crutches and a wheelchair. I do not see myself as able bodied. I am a 30 year old woman who was disabled since birth. Embrace both your experiences and dont feel you are betraying one if you are walking or using wheelchair or vice versa. I would like to add you as a friend here please add me so we can talk more. Where are you from? Take care nattylr
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Hi Mags23
I am nattylr aged 30 and have spina bifida occulta and hydrocephalus. The previous post was actually from me but unfortunately the last person to use the pc at home (my partner jackb who also has sb) didnt log out of their DS account. I am very sorry for the confusion. Take care Nattylr
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I understand how you feel.I am 36 yrs. old, and I was born with spineabifada. I have always had bad balance, but was able to walk ok without any assistance, up until about 5 yrs. ago, or so. My balance just got progressively worse, and I had to quit my job, as hostess, at a restaurant, that I had worked at, for almost 7 yrs. before resigning, due to having to start walking with a walker. I can't walk at all without my walker now, because I fall all the time. It is very frustrating, and depressing for me. I jus tfeel so very alone. would you like to be my friend? I would like that a lot.
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I just wanted to thank everyone who responded. It is really nice to have a place I can say whats on my mind and get support like this and not be treated like im different which is how I usually feel. I have only been on this site for about a week and already feel like part of the group. Thanks again to everyone who responded. I look forward to continuing to get to know everyone.
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i can defo relate/..altho i havent resorted to a wheelchair i still get very tired and my back begins to hurt..do what is comfy for u..i kno if i walk to much or wat eva then i need to sit down etc so maybe ur body is doing the same and thats why u need ur wheel chair at times
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Mags you have to listen to your body. Its the only way to manage things.
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I'm 26 years old. My lesion is also at L4/L5. I don't use a wheelchair at all but like you I get tired standing for long period of time and can't manage walking long distances. I need lots of breaks and sit downs. I don't let my disability let me down too much as I feel there are ways around it. Any questions feel free to ask me.
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I have spina bifida occulta and can walk short distances with arm crutches but use a wheelchair for longer distances.
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