How "normal" or "unusual" is my life?

[James1967]

I recently discovered this site and thought it might be a good opportunity to inquire about something I have often been curious about. I am 43 years old and was born with myelomeningocele spina bifida. When I was born in 1967 my parents were told I would probably not live into adulthood and if I did I would never walk, go to college, live any kind of normal life, etc.

Well, things turned out quite differently than this. I have not only lived into my 40's, but I am ambulatory (with the use of forearm crutches), I am a college graduate (Master's Degree), and am employed as a corporate recruiter for a large hospital system. I was married for almost 14 years until my wife died of cancer about 2 1/2 years ago. I now live alone in my own home.

I have certainly had my ongoing battles with my spina bifida. I have had numerous surgeries (I have lost count) in my life. The jobs I have had in my life have almost always been in call center type of environments where I have to sit most of the day. So, I have on going issues fighting pressures sores and abscesses. This has recently gotten to the point that I have had to start working from my home so I can lie on my side a lot of the day rather than sitting behind a desk all day.

Numerous times in my life when I have seen doctors who typically see a lot of disabled patients (wound specialists, urologists, etc) I have ask them if they have ever known someone with my diagnosis that has lived to my age, is ambulatory, employed, etc. I have always been told they did not know of anyone else that met all these criteria. Periodically I get frustrated with my spina bifida and how it constantly interrupts my life but my docs typically tell me I am very fortunate to have the active life that I have.

Sense this group appears to have a number of members with spina bifida, I thought this might be a good place to ask this question and see what I can learn from this.

[Dodger67]

Hi James
Welcome on board!

In my (not so) humble opinion there's nothing particularly unusual about your story - except for your wife's passing so young, that totally sucks.

About your pressure sore issue, you need a proper anti-pressure cushion such as wheelchair users like me have.

BTW we are the same age but I'm still working on the degree!

[misty]

Yeah, not so much unusual there. Sorry. Doctors are just wrong about us! Welcome to the group! I'm 27 and still kickin'!

[James1967]

Roger,

Thanks for the feedback. I have multiple pressure cushions. I have used high profile Rohos for years. Use a Nexus Sprint in my car when I drive. Even have a couple custom made Ride Cushions as well.

On the "unique" issue, one major thing I have yet to find (and maybe I have never looked in the right place) is someone with my diagnosis and my age who is ambulatory. When I have asked around in the medical community (docs, nurses, medical equipment vendors, etc) I am always told this is the criteria that they don't know anyone else that meets it. This is what has made me curious to ask this question in a forum that reaches beyond the geographical area where I live.


James

[jellolegs23]

James,

I am a 29 year old female with Myelomeningocele. I use a wheelchair most of the time but I am still ambulatory. Being in a wheelchair for most of us who are still ambulatory is a personal choice. We have the ability to walk but it is so difficult that walking is just not a practical mode of transportation. It would be for instance, like for an able bodied person trying to walk to another city, it could be done but who would want to if they have a more practical mode of transportation. I say kudos for you for still walking! That's great! But also know that there are many people in wheelchairs who are still ambulatory and I think that idea mystifies the medical community. For someone who has no problems walking and uses it as their main mode of transportation it is difficult for them to imagine why someone would choose a wheelchair as a mode of transportation who still has the ability to walk.

This is just the type of situation I find myself in. I am not sure about anyone else.

[Avocado Baby]

Hi James,

Good to have you here. Sorry to hear about your wife though.

I think there are plenty of people with Myelomeningocele that have a normal life span. It's just the doctors being pesimistic/ignorant. We're all so different I think it's difficult for them to be able to tell how a child with SB's life will be.

I'm a full-time wheelchair user. I used to be able to walk with aids until I was about 13.

[LisaJoy]

Welcome, and feel free to hang out with us any time!

My experience may not count b/c I have lipomyelomeningocele, not myelo (a closed rather than an open defect). I'm 46. I walked with no aids until I was 38, when I had a tethered cord surgery that left me with nerve damage. Since then -- one afo & one forearm crutch. I can walk without both, but wouldn't dare leave the house without the afo b/c my ankle is so unstable. The crutch allows me to go faster and further than I otherwise would be able. I find distances to be more of a struggle as I age. I occasionally use two crutches now. When I went to the San Diego Zoo a few years ago, I had to rent a wheelchair. I can anticipate a day when a wheelchair or mobility scooter might be useful.

BTW -- I have 2 masters degrees & a PhD and work as a college professor.

I've never had to deal with pressure sores -- must be really aggravating. I'm glad your employer allows you to work from home. How do you find your shoulders holding up?

So sorry about your wife.

[Lifeisgood]

Hi James, I am 32 and have lipomyelomeningocele as well, so my issues were not picked up at birth. I am fully ambulatory without aids, but have many of the other "joys" of SB. Where are you from? Perhaps someone can recommend someone for you in your area.
Best wishes.

[sean]

James, I can relate to some of the unusual in your life.
Born 1959, mortality always an unknown/question/expectation, or at least until I hit 30 "alive and kicking" ,30yrs old the last cut off date given to me.
There were NO expectations of me having a future. Although I was always the lucky, fortunate, miracle child/adult.
In a content brick bubble believing I am the only one! (special), no one could possibly understand, for about 35yrs.
I have lived a life 'thus far', although colourfull and rich in many ways, that may not have been as misgiuded, had I known to live to live and not live to die.

I too, often enquired about being the only one, the survivor, the pioneer, and people suppossedly in the know..led me to believe it.

There has been a greater survival rate of SB since the mid 1950's, so those of us with a few years behind us seem a bit standout/alone. But read around, look around, reach out, we are not alone. I've met several people with SB older than me.

Now in my 50's, I look back amazed, I couldn't have lived more fully.
I'm back at University looking foreward to continually beating the odds.

I am the only normal person I know...that's a fact...LOL

[HelenCate]

Hi James, I'm almost 41, fully ambulatory, not so lucky in the bladder department, currently have a urinary diversion which is soon (hopefully) to be undiverted. I was given a similar prognosis at birth...but we continue to thrive in spite of of expectation, don't we :)

[astronut]

Hello James,

I'm a 60-year old college professor with Myelomeningocele. A good, long life, so far. Have worked all over the place in the midwest & mid-eastern states of the US.

With regard to mobility: I began using crutches at the age of 41 simply because they increased my mobility. Some acquaintances thought it odd that I should want to use them.

I now find myself migrating to wheelchair use, again mainly for reasons of enhanced mobility. Also to reduce stress on the spine, which apparently has taken a beating. Wish I had adopted the chair years ago. Spine is thick with arthritis, plus stenosis (both kinds) and degenerative disk disease. These conditions made worse/hastened by the SB? Or perhaps the gait SB has enforced? Or just a natural result of aging? I don't know.

In any case, pain from spine problems (which extends down both legs into my feet) has now become a major hindrance - I'm currently on medical leave from my job & wondering how much longer I can work, even in a 'low-impact' job like mine. I've contended with pain from a tethered spinal chord for almost three decades, but that's nothing like what I'm going through now.

For what it's worth, this is my first post at this site.

[LisaJoy]

Welcome, astronut! What do you teach?

[Dodger67]

Welcome on board Astronut.

[Avocado Baby]

I can't really answer your question astronaut but I wanted to say hi! Welcome aboard!

[astronut]

Thanks for responding.

I teach astronomy & physics. Hold a PhD in astronomy.

[Abest2011]

I was born in the 80's however my mother was told much of the same thing, about all the things I would not be able to do. I am 30 now and will be graduating with a bachelors this year. Within the last year or so I have gained a lot of weight which has made getting around a little harder for me but other than that I have always lead a pretty "normal" life. I live independently and have for about 10 years now.

[eng188]

When I was born in 1967 my parents were told I would probably not live into adulthood and if I did I would never walk, go to college, live any kind of normal life, etc.

Well, things turned out quite differently than this. I have not only lived into my 40's, but I am ambulatory (with the use of forearm crutches), I am a college graduate (Master's Degree), and am employed as a corporate recruiter for a large hospital system. I was married for almost 14 years until my wife died of cancer about 2 1/2 years ago. I now live alone in my own home.

I have certainly had my ongoing battles with my spina bifida. I have had numerous surgeries (I have lost count) in my life.

Numerous times in my life when I have seen doctors who typically see a lot of disabled patients (wound specialists, urologists, etc) I have ask them if they have ever known someone with my diagnosis that has lived to my age, is ambulatory, employed, etc. I have always been told they did not know of anyone else that met all these criteria. Periodically I get frustrated with my spina bifida and how it constantly interrupts my life but my docs typically tell me I am very fortunate to have the active life that I have.


Welcome to our board.

I'm 36, and a T-2 level incomplete myelo case, and I walk with crutches. In my wee years, I used a walker and full body brace, but now crutches and AFO's. In fact, for a while, I was able to walk without crutches. But as I hit adulthood, things got a tad worse, and thus my crutches and AFOs.

I am happily unmarried and childless by choice. I have worked several jobs in my life, including library assistant, call center operator, and supermarket front ender). I have made a decision to retire due to declining health. I'm mixed about that one. I don't like not earning my keep, but by the same token, having a job never gave me any sort of satisfaction.

I have seen people whose cases run the gamut. I have seen people die in their late teens, and seen others with SB live to their late 70's. It seems to be a combination of good self care and mobility that will increase one's lifespan. An acquaintance of mine died at 31 of a bowel obstruction. Not very mobile at all.

I'm not sure I was told such grave things about my lifespan when I was young, but I sure learned to realize that was a possibility when I entered a group home for two years for intensive life skills training. It was a bit humbling to know that people sometimes did die early with SB. But it just underscores that self care is crucial. Nothing wrong with that sort of lesson. All people should strive to be self care experts. :)

I get frustrated with how SB interrupts my life as well. Sometimes my mind is like "LETS GO GO GO!!!!", and my body is unwilling to cooperate due to fatigue or GI issues. I try to maintain a GI schedule, and be very aware of my bladder. But things still happen. I suffered stomach flu last week, which I seemed to catch at a university campus. Almost had an accident on a bus.

It's maddening when SB interrupts your life, but I'm 36 and glad to still be here. Life is way too short a part of eternity, so I amglad to have every moment on here.

ETA: Mods/Admins, sorry for the delete request. I thought I had posted to the wrong thread. Not true.

[NerdaliciouS]

I get frustrated with how SB interrupts my life as well. Sometimes my mind is like "LETS GO GO GO!!!!", and my body is unwilling to cooperate due to fatigue or GI issues.

I just wanted to say... Yes! Yes, yes, yes! It always made me wish I had wings, so when my body started hurting, I'd just have these massive, untireable (I think I made that word up) wings, lol.

One can wish, right?


Oh well. I'm not even 20 and feel like I'm a [typical] 80 year old. I guess our pains made us learn early. And we should be thankful we're still around. I can still walk and go to the washroom on my own, all of which I've fought for, and I'm happy I have it. But we should be happy we've "beaten the odds". Afterall, what better fun than to walk into a doctor's office and make them go, "uhh, whaaaattt!?" :clap2:

[guineapighotel]

Hi James,

It looks as though you've had lots of replies already but I can relate to many of the experiences here - low level of physical and educational expectations, no sensible prognosis etc etc. Well, I am 47 and still just about getting by on my own two feet albeit rather slowly and, some days, in a lot of pain. My ribs have got rather stuck inside my hip bone on one side which is a bit tricky, and I have cut down my working hours to 3 days a week.
As far as disability goes, if my parents had listened to the advice they had, I'd be sitting at home doing probably not very much. Instead I have professional qualifications and have worked for 28 years now, baring the inevitable hospital interludes.
Sometimes doctors read too many textbooks instead of talking to patients. You're obviously doing something right so keep going!

[kali]

hi everyone.....I am a mother of a soon to be 13 year old boy.....reading about everyones life was great for me, because I always wonder about my sons future. Now I feel so much better. You guys are all awesome...hugs to all

[bcain]

Kali, I agree with you. This is a wonderful thread to read. Thanks for sharing everyone. :)