All or Nothing?

[lynnifer]

Bear with me because it's another 'what if question' ... I'm just curious.

*****
If you could have your bladder back in 5 or less years, but it would exclude you from a complete cure in 20 ... would you do it and why?
*****

I only would because I'm 33 ... keeping in mind my bone density, pressure sores on feet, AGE and atrophied muscle ... I'd rather have my bladder back. Having bladder back would mean no more UTI's, no risk for sepsis, no AD or pain and total control with no accidents.

If I waited 20 years, I'd be 53 .. I'm not sure I'd still be around by then and even if I were, my shoulders would be pained and not totally up to walking parallel bars or going through any intensive rehab. I already have the joints of an 80yr old according to the last Nuc Med tech I saw .. lol.

Your answer and reasoning please with your age and length of paralysis ...

T12 for 20 years

[RehabRhino]

Wouldn't take bladder in five years - I cath, never void and rarely get utis - but as a quad I would take full restoration of hands/arms in five years over a full cure in 20.

Have to say I have no pain and no major bowel issues. If I did I might think differently

C5/6 inc - injured almost 1 year

[martha]

I know my husband would have taken the bladder control over the total cure. He had too many UTI's and sepsis was the, or at least a contributing, factor in his death. And at his age at injury (51) a cure in 20 years wouldn't have been any help to him though he certainly would have wanted it for everyone else!

[Zeus]

Lynnifer,

No I wouldn't. I'm C5/C6 complete since age 7, and I'm almost 31 now. My bladder has been good to me I guess. I had a condom cath for 22 years, and that was a drag. Always coming off, constant sores on my penis from the irritation, and ultimately the stretching of my bladder to giant size. Still, I only averaged one uti every 3-4 years, until the bladder stretching. Now I have a sp cath, and I'm in urinary tract nirvana (for a quad!). Some people hate leg-bags. I've had them my whole life practically, so they don't bother me much.

Now, as for RehabRhino's suggestion, full arm/hand movement in 5 years vs cure in 20 years. Arm/hand function in 5 years is the winner by a landslide. Even if I had to give every adult male in Canada a bj as part of the arm/hand function therapy, I'd still choose that over a no-strings-attached cure in 20 years. Yes, I am being deadly serious this time.

Just to clarify, I'm a staunch heterosexual.

Chris.

[Liz321]

I'd rather be able to poop.

[jayday9]

Wouldn't take bladder in five years - I cath, never void and rarely get utis - but as a quad I would take full restoration of hands/arms in five years over a full cure in 20.

Have to say I have no pain and no major bowel issues. If I did I might think differently

C5/6 inc - injured almost 1 year

DING DING DING...

[jayday9]

Now, as for RehabRhino's suggestion, full arm/hand movement in 5 years vs cure in 20 years. Arm/hand function in 5 years is the winner by a landslide. Even if I had to give every adult male in Canada a bj as part of the arm/hand function therapy, I'd still choose that over a no-strings-attached cure in 20 years. Yes, I am being deadly serious this time.

Just to clarify, I'm a staunch heterosexual.

Chris.

lmao chris...

[2jazzyjeff]

i'm with Rehab and Jayday on this..... i'd sit forever just to have my hands back...

[rdf]

Bladder and bowels, and sex, yeah, for sure.

Bladder alone? I don't know, I've been so lucky in that regard...I intermittent self cath, and *knock on wood* haven't had a uti that needed antibiotics for 15 years or more. I'm 20 years post like you Lynnifer, but T4/5.

But I'm 44, getting a full cure at 64 doesn't leave me much time for enjoying it, especially with the health problems associated with sci aging...I might not even make it to 64, anyway.

I guess I would take the bladder, it would really simplify going to the bathroom while traveling around the country, which I hopefully plan on doing for a year or three. Simplify it everywhere, at all times, for that matter.

Good "what if" question lynnifer...I used to be a cure "homie," and along with Jeff and GaryM and da and melliska, and some others, used to battle the people who wanted more money for care versus cure back in the beginning of spinewire days, years and years ago. I still believe cure research needs the appropriate funding, but am not as passionate as I once was just 10 short years ago.

But I've changed with age and with the lack of progress of cure research. I believe the "know how" is already here, but the apathy of the politicians and those who control the funding have changed my outlook on being cured in time to make much of a difference in my life due to the advanced age I'll be when the cure arrives, and is implemented for the masses.

Live for the minute is how I view the world more now, and the money I've saved over the years for cure surgery/therapies is going to be spent on having myself some enjoyment in this life, whilst I'm still not quite too old, and I'll die broke, but with a smile.

'Scuse the ramblin' post, please , I sometimes don't know what I'm going to write until it appears before me.

[Shaun]

Id give alot to piss and schite like a big boy again,so ya probably..but i need/want my hands back..that to me,is the greatest indignity that SCI has dealt me..

[abrooks311]

yep I agree...as a quad I'd def like to have my arms/hands/fingers

[Jeff]

Like the others.... bladder alone is not enough. Bladder and bowels would probably do it, though. I might feel like a cop out. But only for 5 minutes.

OTOH, bowel, bladder and sex..... bring it on!

I met an expat quad a few years ago with some kind of neuromuscular disease. He was living in the Philippines. He could barely use his hands for anything. It was almost painful watching him hoist a big rum and coke. He did get to drink most of it..... but was constantly sloshing it all over himself in the process. He could barely feed himself. He had a manual chair but couldn't push it himself. He couldn't transfer. Sounds pretty disabling. But he had full B/B/S. The guy in many ways was much less disabled than me. He was a Brit, got piss drunk all the time, slept with multiple girls who would drag him home, shag him, take what they were owed from his wallet and then leave in the morning. Everyone knew him and pushed him in his chair whereever he needed to go. He just lived. With very few problems. The hotel staff at the dump he lived in would set him on the toilet once a day and point the shower at him. Pretty easy life. Not exactly my style. But shows me that the joy and freedom of full B/B/S would be nearly impossible to resist.

As a lower middle quad who has been independent for decades my hands would not be enough. At about C6/C7 we can learn to do most things for ourselves. Triceps mean we can transfer. So..... unlike slightly higher injuries, full hands wouldn't sway me the way B/B/S would.

[fuentejps]

Like the others.... bladder alone is not enough. Bladder and bowels would probably do it, though. I might feel like a cop out. But only for 5 minutes.

OTOH, bowel, bladder and sex..... bring it on!

I met an expat quad a few years ago with some kind of neuromuscular disease. He was living in the Philippines. He could barely use his hands for anything. It was almost painful watching him hoist a big rum and coke. He did get to drink most of it..... but was constantly sloshing it all over himself in the process. He could barely feed himself. He had a manual chair but couldn't push it himself. He couldn't transfer. Sounds pretty disabling. But he had full B/B/S. The guy in many ways was much less disabled than me. He was a Brit, got piss drunk all the time, slept with multiple girls who would drag him home, shag him, take what they were owed from his wallet and then leave in the morning. Everyone knew him and pushed him in his chair whereever he needed to go. He just lived. With very few problems. The hotel staff at the dump he lived in would set him on the toilet once a day and point the shower at him. Pretty easy life. Not exactly my style. But shows me that the joy and freedom of full B/B/S would be nearly impossible to resist.

As a lower middle quad who has been independent for decades my hands would not be enough. At about C6/C7 we can learn to do most things for ourselves. Triceps mean we can transfer. So..... unlike slightly higher injuries, full hands wouldn't sway me the way B/B/S would.

i can tell everyone this. having the b/b function i have does make sci life easier and more comfortable,.its not normal, but its good enough. so im sure it would really help most of you out.

you dont need triceps to transfer....good hands would help but i have learned to adapt there.

now i want to walk./ i would take the use of my legs rather than my hands back in a heartbeat.

i can definately understnd you guys wanting b/b above walking, after looseing it then getting enough back to function, i do have empathy in that area.

[Christopher Paddon]

Quote:"I met an expat quad a few years ago with some kind of neuromuscular disease. He was living in the Philippines. He could barely use his hands for anything. It was almost painful watching him hoist a big rum and coke. He did get to drink most of it..... but was constantly sloshing it all over himself in the process. He could barely feed himself. He had a manual chair but couldn't push it himself. He couldn't transfer. Sounds pretty disabling. But he had full B/B/S. The guy in many ways was much less disabled than me. He was a Brit, got piss drunk all the time, slept with multiple girls who would drag him home, shag him, take what they were owed from his wallet and then leave in the morning. Everyone knew him and pushed him in his chair whereever he needed to go. He just lived. With very few problems. The hotel staff at the dump he lived in would set him on the toilet once a day and point the shower at him. Pretty easy life."

That was surely tongue in cheek Jeff. It doesn't sound like a very easy life to me. On top of that his condition is probably going to deteriorate.

[lynnifer]

I certainly am no doctor other than md by tv .. lol .. but it just seems bladder return is something tangible we could have TODAY instead of the cure is coming .. another 5 to 10 to 20 years down the road ..

Sign me up for a nerve graft and I'll find the donor! The bladder isn't THAT far from the spinal cord!