Would you take the cure?

[mike]

How about this twist on the darthoso's question...for the disabled guys, if offered a cure, would you take it? I suspect the answers would be all over the place, from person to person and day to day.

As for me, I probably wouldn't take it, because my disability isn't very limiting and is so ingrained into my self-image that it would be emotionally disorienting to change. In a way, it's like asking someone if they would like to suddenly be 7 feet tall. That might sound interesting to try, but ultimately would also be disorienting. That might sound like an odd thing for me to say, but I have had a roughly similar experience: at one time I had an experience we all dream of (financially). Prior to the experience, my assumption was that it would be fantastic. Well it was good, but at the end of the day I was not one iota happier. That was a surprise; I expected I would be in the clouds, but my experience was quite different.

My guess is that people who suddenly become disabled have a very disorienting experience, and would greatly prefer to be back the way they were, but those who were born with disabilities would be less clear-cut. I'm kind of in the middle, I was born with the defect, but it wasn't an issue until early adulthood. I've been A/B and dis, but it wasn't a sudden transition.

So guys, would you take the cure?

[mikefatty]

soo many people in my family . and even also my friends have asked at some point. and the only cure i would ever take is to fix my damn pressure sore!! lol . i am happy with the way my life is. i can still do everything i need to to get around and do anything just about anyone in life does. i just do it rolling which i find nice. aside from the stray flat tire. but i am content. and have the will and confidence to say no. i do believe if given the choice . i would not take a cure in any way shape or form. i would not want to go through the transition again. it would be to much pressure. especially if it only worked part way then i would just be incomplete. it has too many emotional ramifications surrounding it. i being only in the chair for 4 years can say its already become me. its who i am. the chair is part of me. i wouldant change it back. it would be too strange. i honestly have a hard time remembering what it was like.

[darthoso]

Background on me: I have type 2 SMA and been in a power chair since I was 2 1/2 years old. Growing up disabled has definitely shaped who I am but I don't believe my disability is part of my self identity, I believe people change and should explore alternate paths when offered if desired.

This has been a real thing for the SMA community. A oral treatment is currently working its way through human trials. The stage its at is where they only give it to non SMA paid volunteers to test dosage tolerance and safety. Multiple people (family/friends) have asked me if I would be willing to participate in the trials if/when it is tested on SMA patients, and for me the answer is no, for practical reasons. First is the question of side effects, I have no interest in throwing my guts up constantly or anything life style changing. I'm content with how my body functions now. Good news on this front is that the initial study of those given a single dose showed no tolerance issues or detectable side effects, plus blood work showed the drug was biochemically doing what it was supposed to do (which is generate an enzyme that SMA patients lack in enough quantity depending on which type of SMA they've got). Second reason is that it would likely be a double blind study, meaning I could be given a placebo, not interested in being screwed with (that's my current understanding of it all, I could be wrong).

That all being said if it passes human trials, I'm in. They haven't given it to any SMA patients yet so they've got no idea what impact it will have. But if it can give me just a little more arm strength, huge personal victory. I used to be able to type at 60 words a minute on a standard keyboard, I'd like that back among other things as I enter the work force. I have no expectations that I'll be leaving the chair, that would require a huge amount of physical therapy to rehabilitate my body if the drug was that effective. I'd take just a little more functionality. Any further progress I'd do on my terms at my pace, no pressure.

[RollAlongSlowly]

I've been in a chair for 20 years now- Over half my life

And if I was offered a cure, even a partial one, i'd take it like a shot

[britishtetra]

Blimey Mikefatty, four years in your chair and you've got a pressure sore, that's bad luck!. I've had two the first one after 15 years, it took 2 years, then another in 2007 that i still manage today. Yep 6 years on, as for the cure, mmm tough one, I've been sat for 23 years, I was walking for 18 years so how would it cure me, everything or just partial. I would love to be able to play golf again, but I wish that I could use my hands, fingers, get some feeling back in my body, I think I'm 100 % like this now.
It's just a pipe dream, mind you Worf in Next a Generation got cured, so you never know...,yes I like Sci-fi....


Pete, on the chicken soup in Brum....

[aussiequad]

No brainier I'd take it u got one haha

[aussiequad]

No brainier I'd take it u got one haha

[aussiequad]

No brainier I'd take it u got one haha

[devogirl]

Dec 17, 2013 8:49:34 GMT -5 britishtetra said:

Worf in Next a Generation got cured, so you never know...

OMG, that scene--I remember it so clearly. When they take someone else's spine out like a piece of spaghetti and somehow deposit it straight into his back-- bam, instant cure! All across the country, surgeons were smacking their foreheads and shouting, "Why didn't I think of that?!"

 I love Star Trek, but that scene just killed me. I could overlook most of the tech nonsense on that show but when even I know the science is bad, it's really really bad.

[britishtetra]

Yes that's the one, I would like the zero gravity room that the women in a chair had in deep space nine, mind you Worf ended up with Dax at the end...one of them...for a bit..

Pete,

[Ximena]

Just wanted to step in and say fantastic question, Mike, and some really interesting answers from everyone.

[Pony]

Man, I had 21 years of AB…and I loved running, plainy basketball, tennis, guitar/piano, bodysurfing, conversing with people face to face again, putting my hands around the waist of a girl while standing behind her …the freedom to go and do anything!! Never have to depend on anyone to get up out of bed. The pleasure of sex, or masturbation, or just peeing again…wow!! GIVE ME THE CURE!!! But, let's say it wouldn't be complete cure…mmm, that would take a lot of the thrill out, but I'd still try!! What a tease to my thoughts!!

[jturk]

I absolutely would. That goes with the assumption that taking it wouldn't create some other even worse problem in my life. So assuming this hypothetical cure is safe and effective I would not hesitate one bit. As much as I have been able to be comfortable with being in a chair for so much of my life, my mind immediately jumps to all of the practical aspects of no longer being affected by my condition. I have not been able to function 100% independently for nearly 20 years, there are many things I would do if I got my full function back.

In terms of reality however, it seems extremely unlikely that a full cure is even possible at this moment in time. Much like what darthoso mentioned in regards to SMA I think anything that's in development for my condition is likely to only partially restore function. There are some drugs currently in human trials with MD patients with seemingly mixed results. If something came along that could even give me back some function to where I could possibly do more or my own personal care or drive safely on my own, assuming it's safe and effective I would not hesitate on that either.

[8mph]

I wouldn't hesitate to take a cure. My war on stairs would finally come to an end.

Sent from Scottsdale AZ, 8mph here

[Tek]

Yes. Any quality of life improvement is always welcome (in the physical sense). Don't get me wrong, I'm very happy with my life as it is right now with only some minor issues, none of which are directly related to my disability. But I'd always be up for "The Magic Pill" that will make me able to easily sit up on my own again when laying in bed, or transfer from one chair to another a bit quicker..