What's the most challenging part of life with spina bifida?
@tendernesstour (62)
United States
March 11, 2007 9:40pm CST
As an adult living with spina bifida, I'm primarily aiming this question at others living with spina bifida and/or those with spina bifida in their families. I'm mostly focused on myelomeningocele, the most severe form of spina bifida, and looking at how it challenges us in our daily lives?
As I've grown up there are certain areas and "quirks" of spina bifida that always challenge me more than others. For example, the hydrocephalus has never been a huge issue for me, however, the neurogenic bladder and kidney type issues are very troubling.
I deal fairly well with my scoliosis, however, sometimes I've noticed my self-care can really decline when I'm exhausted.
What do you find most challenging about spina bifida? How do you deal with the challenges?
1 response
@seamonkey (1976)
• Ireland
12 Mar 07
My cousin had the most severe form and passed away when she was 31. I think the last 5 years of her life were so trying and she was in so much pain. She had also been born with hydrocephaly and had to have a shunt put in in her mid-20's to relieve the pressure. She was really suffering and it was hard to watch.
@tendernesstour (62)
• United States
12 Mar 07
Thanks for sharing. That had to be difficult to watch and experience with her. I'm very aware of how fortunate I am to still be alive at 41 (well past what they expected). I still live independently and work full-time, but I can definitely say it has gotten much harder.
I think one of the more challenging things for me, at times, has been trying to plan for the future without really being certain of having one. I live very much in the moment, but notice I sometimes am very resistant for long-term commitments (like relationships).
@prdenisefl (3)
• United States
21 Sep 07
Hi, i am a female , age 24 now. I understand your concerns. I also feel very lucky. I had never thought have Myelomeningocele could be life threatening. FOr me its always been , that well I don't walk and have had 3 shunts and a total of 13 surgeries. I am not independent yet. I tried to by moving to FL from PR , but my parents have tagged along. I am still kinda not ready, 100%. Concerning the life threat, well yes, doctors have put into perspective but I don't pay attention. I plan to stick around and have had the blessing to lead a pretty normal life with familial support. At this moment, I am studying a masters degree in SPEECH AND LANGUAGE PATHOLOGY. This is a huge accomplishment for me. Sometimes it seems unreal that I've made it to grad school but yeap, here I
@mconway15 (1)
• United States
25 May 08
I have been so fortunate to be still "here" with spina bifida. It is the myleo kind, and I am 54 years old!! I am just starting to have problems that I have yet had to experience. I STILL do NOT have a shunt, although I have lots of other health issues. I am really looking for a female that is in my age bracket that also has spina bifida. I really need a "support" friend, as I have been having new and frightening medical problems. When your cousin passed away, what had she been sufferu=ing with that was so paunful. For me it is my back, and always has been, but now I am also experiencing some heart problems. It is scarrrrry!lol!! If anyone knows of anyone that is "pushing" into that "senior" time of their life, and has spina bifida, would you please be so kind as to email me on me private email?? It is mconway15@cox.net. I sure could use the support!!
