a ? 4 all

[qk2jdge]

what is the biggest challenge you've faced in life (so far) having SB and did you overcome it? this can also be answered by parents or friends of someone who has SB if you know.

[Barb]

Well, on my sons behalf I would have to say CONTINENCE!

[kali]

hi and welcome, I have a nine year old son, and I agree with Barb...CONTINENCE!!

[eng188]

Continence is a big issue in my life as well. I quit having to use bladder bags and diapers in my pretens (I am 31 now). I entered a temporary SB group home situation in Pennsylvania (the Gatehouse), north of Pittsburgh in 2000, at age 24, and there was some recurrence of incontinence. I still don't use bladder bags and diapers, as the expense outweighs the need, but I do have maybe one bowel accident a year, and a few urinary accidents a year (though 2007 has been problem free!).

The thing with the recurrence of incontinence is that, with me, it coincided with a strict life regime imposed by the Gatehouse, and a huge bout of depression that lasts until this day.

I guess that's the other potential issue: depression. I am high-functioning as far as most biffs around here go. However, I am still not completely accepted (or might be overaccepted as some act of charity or concern) by the able-bodied public. Would I have depression if my spina bifida were removed from me but all else remained the same? I don't know.

And what about social skills? Again, I don't know. I react SO differently to so many different situations, emotionally, socially, etc. I'm not sure if I'd be the same way as an able-body.

I'm sorry this was not a brief answer, but all of these issues are at the forefront of my particular life as a person with sb.

[Barb]

It just blows me away that in this day and age of so many medical advances that something as significant as incontinence in most of the disabled community cannot be addressed any better than it was 20 years ago! I do have to say that the cecostomy procedure, which is becoming more widely used and accepted, has made a significant improvement for my son in terms of bowel continence but urology does not seem to have really made any significant advances in quite some time. Do you think it is because so many people just don't talk about it?

[printemps]

I would have to say that continence is for me as well one of the bigest issues. I believe there have been a number of advancements in treating and managing the situation since I was born ( 1958 ) . Personally my incontinence mostly affects practical and psychosocial areas and because it is still a topic people don't talk about I spend a good deal of energy "keeping my secret. " I still do and have always used absorbant garments to manage and I accept the situation and I don't think it should be that big of a deal . However I do know from experience how hard it was growing up with it, if only I was less inhibited and made shy about it - perhaps ? It is a subject which deserves a great deal of discussion but with the stigma and the private and personal nature of incontinence people are rightly lothe to speak out.

[qk2jdge]

i've always used diapers and will have to continue due to my seizures and bracing. it nice to read that some of you have deen able to stop using them or only need them on a part time basis.

as far as answering my own question, i've been trying to think of something but can't really come up with anything. my diseases are so limiting most of them time and i pretty much have to stick to a schedule of pretty much the same thing everyday, so i rarely get opportunities to try new things.