23 replies to this topic

[Webwych]

I've been thinking a lot about this whole 'cow-egg' stem cell research topic that's been in the news lately. Personally, I think the vote should go to the people who are affected by the illnesses and disabilities that this technology could cure and their families.

But it started me thinking, would I take advantage of it?

Some days I'd like to be in less pain, I admit and the brain fogs are not pleasant, but those are things I can take charge of myself by making sure I sleep enough and keep warm. But the actual disability is not something that bothers me.

The only times I've really hated being disabled were sparked by the fact that I live in a society that is not prepared to accommodate me, weather that is by not giving me physical access to things, or poor attitudes towards disabled people. That is something that education can tackle, so I have to ask myself why should we put ourselves through painful and possibly risky procedures so that we can be 'accepted' by self-proclaimed 'normal people' when it would be more constructive to slowly educate society to see me as a person and not to regard my 'disability' as a bad thing? Who says they are the ideal just because they get around on two legs and anyone who doesn't should be automatically be considered 'broken' and in need of 'fixing'?

I guess the fact that I am surrounded by close AB friends who are totally positive about me helps a lot too.

So I'd like to know what you think? Do you feel the way I do or are you prepared to get as close to 'normal' as possible whatever you have to go through? I'd also like to know if you were born with a disability or if you have had an accident or illness that left you disabled as I am interested to know if that has a bearing on your you feel about yourself.

[rmorgan]

Now this isn't coming directly from the horses mouth. But we've talked about it before, my boyfriend being the one with the "disability." I asked him if there was a cure, would he try it. His response was ONLY if it was guaranteed. He wouldn't take a risk of doing something that wouldn't work for him. But he said that one day if there was a possibility he would do it, only to regain his feeling in his lower extremities because he's happy in a chair. And after being in a chair for so long, there would probably be no way he would be able to get around like an AB ever again. So to answer you question. He's happy...but I'm sure if there was the possibility...he'd take it.

[Webwych]

rmorgan, on Apr 14 2008, 10:50 PM, said:

Now this isn't coming directly from the horses mouth. But we've talked about it before, my boyfriend being the one with the "disability." I asked him if there was a cure, would he try it. His response was ONLY if it was guaranteed. He wouldn't take a risk of doing something that wouldn't work for him. But he said that one day if there was a possibility he would do it, only to regain his feeling in his lower extremities because he's happy in a chair. And after being in a chair for so long, there would probably be no way he would be able to get around like an AB ever again. So to answer you question. He's happy...but I'm sure if there was the possibility...he'd take it.

That's interesting, thanks for responding .

[Tim13]

16 years post accident, if a proven cure came along, I'd be all over it.
Sure, I'm independent, have lots of friends, etc. but being able to stand and walk again-even if it meant hobbling around like Marty Feldman's character in Young Frankenstein would be great.
It's not as much am I happy the way I am as much as there is something broken that should be repaired if possible.

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Edited by Tim13, 15 April 2008 - 10:16 AM.

[qbounce]

Of COURSE I'd take the chance at getting more movement in my arms & legs! I'm still learning there's so much I can do, and I'm nearing the light at the end of the tunnel. . . I mean I see it right in front of me, clear as day. So, it's not that I'm unhappy with who I am.

If it even got me back the sensation to FEEL my limbs without the possibility of moving them, I'd take it. I'd love to be outside in hot weather and have the ability to withstand the sun's heat. If my body could regulate its own temperature by perspiring again, I'd be a happy boy!!

It's just the little things sometimes, that I wouldn't think twice about getting back.

I have this strange sensation right now in my body, I felt weak today, had different leg spasms, and I'm not sure why my body's reacting this way?? . . . sure would be nice to FEEL what's bothering me!! Everything appears to be normal, so who the hell knows.

Anyways, it's not a matter of psychologically knowing I'm OK with who I am as a disabled person, but more along the lines of how much easier things were when I knew I had an ailment based on the sensation of it.

Don't get me wrong . . . walking again would be nice, but I'm not holding my breath for the cure.

[Yong]

This is a stretch..but I'm really hoping for a cure within the next six years. Haha. I know I know...NONSENSE~

The US Marine Corps commissions new lieutenants under or at the age of 28.

The only thing that I really want to do in life is join the military... so I'm banking on that cure, SCIENTISTS!!!

[Hawkeye]

Webwych, on Apr 13 2008, 10:07 AM, said:

So I'd like to know what you think? Do you feel the way I do or are you prepared to get as close to 'normal' as possible whatever you have to go through?

When the line of folks starts forming to get "the cure", I'll probably get in line, but I'll let a lot of other folks get in line ahead of me.

I don't know if I would have felt that way shortly after my injury, but now... 28 years post, I'm good with where I'm at.

Joe

[Stacia]

Tim13, on Apr 14 2008, 11:32 PM, said:

16 years post accident, if a proven cure came along, I'd be all over it.
Sure, I'm independent, have lots of friends, etc. but being able to stand and walk again-even if it meant hobbling around like Marty Feldman's character in Young Frankenstein would be great.
It's not as much am I happy the way I am as much as there is something broken that should be repaired if possible.

"What hump?"

[silone74]

I have been thinking about this and i think i would see how all the trials went and make sure nothing could make me worse from any treatment but at this moment in time beig in a chair makes me stand out from the crowd in a good way i see loads of peope that i think put in my shoes would not cope like i have and i am happy just to be alive.




Silone74

[Webwych]

Thanks to everyone for your honesty, I'm finding this very interesting.

qbounce, do you use the 'break-packs' to regulate your body temperature or cold vests? I have a friend who has the same problem as you and she uses those. She's in Japan right now so she's using up a LOT!

A useless fact I stored away about body temperature: Applying cold water to your ear lobes is a very efficient way of bringing your body temperature down. Not sure why, but there you go .

[Kev-O]

as most people that know me on here will tell you i am never politically correct so i will just say this. Who cares if i walk again just fix me up to were i can shit an piss on my own again!!!!!!

[Webwych]

Kev-O, on Apr 15 2008, 06:17 PM, said:

as most people that know me on here will tell you i am never politically correct so i will just say this. Who cares if i walk again just fix me up to were i can shit an piss on my own again!!!!!!

Ah, no worries. I have 'a talent for plain yet colourful language' myself. .

[rmorgan]

Kev-O, on Apr 15 2008, 12:17 PM, said:

as most people that know me on here will tell you i am never politically correct so i will just say this. Who cares if i walk again just fix me up to were i can shit an piss on my own again!!!!!!

Hahaha....that has a lot to what i was referring to in my orginal reply on here...let all THREE of his limbs be able to feel and he's fine!

[Webwych]

rmorgan, on Apr 15 2008, 10:13 PM, said:

Hahaha....that has a lot to what i was referring to in my orginal reply on here...let all THREE of his limbs be able to feel and he's fine!

Heehee...

[Tired of hurting]

Kev-O, on Apr 15 2008, 12:17 PM, said:

as most people that know me on here will tell you i am never politically correct so i will just say this. Who cares if i walk again just fix me up to were i can shit an piss on my own again!!!!!!

I hear that...

[buffie]

Kev-O, on Apr 15 2008, 11:17 AM, said:

as most people that know me on here will tell you i am never politically correct so i will just say this. Who cares if i walk again just fix me up to were i can shit an piss on my own again!!!!!!

I concur.

[qbounce]

Webwych, on Apr 15 2008, 10:07 AM, said:

Thanks to everyone for your honesty, I'm finding this very interesting.

qbounce, do you use the 'break-packs' to regulate your body temperature or cold vests? I have a friend who has the same problem as you and she uses those. She's in Japan right now so she's using up a LOT!

A useless fact I stored away about body temperature: Applying cold water to your ear lobes is a very efficient way of bringing your body temperature down. Not sure why, but there you go .

Hey Webwych,
I've never heard of break packs. . . also, I'm in a manual chair. Would that get in the way of my wheeling around? A vest sounds heavy too!!

The idea of keeping my ear lobes wet sounds more intriguing to me, though. . . I'll have to see how I can talk my girlfriend into licking them on the hour!!

[Illinois Boy]

If the question is, am I happy living as I am?

NO....

Let me rephrase that........ HELL NO

I'd much rather be playing my 57' Fender Stratocaster, and jumping off a stack of Marshall Amps....

Jim

[Webwych]

qbounce, on Apr 17 2008, 06:27 PM, said:

Hey Webwych,
I've never heard of break packs. . . also, I'm in a manual chair. Would that get in the way of my wheeling around? A vest sounds heavy too!!

There are a variety of cooling vests on the market, and they seem to be quite streamlined - mainly because they are used my sports people. Google 'cooling vest' and you'll see what I mean.

The break packs fit in a bra, I'm told so that gives you an idea how big they are. I'm not sure where she gets them, but I'm going to recommend she have a look at this forum and think about joining.

Quote

The idea of keeping my ear lobes wet sounds more intriguing to me, though. . . I'll have to see how I can talk my girlfriend into licking them on the hour!!

Hehe, must try that line on a few guys - see how far I get.

Illinois Boy - are you still making music? Check out Jason Becker.

[Illinois Boy]

Webwych, on Apr 17 2008, 12:57 PM, said:

Illinois Boy - are you still making music? Check out Jason Becker.

No, I designed a computerized light show for my old band....... Ran the sound and lights for about 5 years after my accident...... Then I DJ'D for about 12 more years...... Gave my equipment to my son, he now DJ's and I set up his playlists.......

My 57' Strat was at Fender, getting re-fretted and put back to new condition when I had my accident... Saw it one time with my other instruments about 24 years ago.......

My mom keeps them for me....... What I can't see, won't hurt me......

Jim

[Motor]

Illinois Boy, on Apr 17 2008, 02:32 PM, said:

Webwych, on Apr 17 2008, 12:57 PM, said:

Illinois Boy - are you still making music? Check out Jason Becker.

No, I designed a computerized light show for my old band....... Ran the sound and lights for about 5 years after my accident...... Then I DJ'D for about 12 more years...... Gave my equipment to my son, he now DJ's and I set up his playlists.......

My 57' Strat was at Fender, getting re-fretted and put back to new condition when I had my accident... Saw it one time with my other instruments about 24 years ago.......

My mom keeps them for me....... What I can't see, won't hurt me......

Jim

Happy isn't the word for me. It took me a year and a half to deal. I accept the chair and know there is life in a chair, I am a mentor to SCI patients, work and ride a Harley again. The list goes on. I am a contributing member of society and believe everything happens for a reason. I work hard everyday at getting closer to walking functionally but don't have my hopes up. So I guess I'm not happy but content! By the way here in S Florida at the Miami Project they just started trials on 5 paras and 5 quads. I was 11th on the list. Oh well. Dr Nash's people told me to wait and see!

Richie aka Motor

Edited by Motor, 17 April 2008 - 07:03 PM.

[Webwych]

Illinois Boy, on Apr 17 2008, 07:32 PM, said:

My mom keeps them for me....... What I can't see, won't hurt me......

Jim

I hear you. I am in the process of selling my guitars because I just don't have the hand-eye co-ordination to play them. I have (or had!) this habit of setting myself challenges that I was just not capable of, and I have finally accepted I don't have the physical ability to play the way I want to, so they are going (sold the first one a few weeks ago) and I'm concentrating more on writing lyrics now.

That realisation hurt, but now I am happy I've done it and I can concentrate on my art which allows me to express myself on my 'brain-fog' days.

Motor, I had a look at your myspace. The trike is sweet

[Motor]

Webwych, on Apr 17 2008, 03:56 PM, said:

Illinois Boy, on Apr 17 2008, 07:32 PM, said:

My mom keeps them for me....... What I can't see, won't hurt me......

Jim

I hear you. I am in the process of selling my guitars because I just don't have the hand-eye co-ordination to play them. I have (or had!) this habit of setting myself challenges that I was just not capable of, and I have finally accepted I don't have the physical ability to play the way I want to, so they are going (sold the first one a few weeks ago) and I'm concentrating more on writing lyrics now.

That realisation hurt, but now I am happy I've done it and I can concentrate on my art which allows me to express myself on my 'brain-fog' days.

Motor, I had a look at your myspace. The trike is sweet

thanks..its my toy!

[Webwych]

Motor, on Apr 17 2008, 09:00 PM, said:

thanks..its my toy!

I love bikes. There's a biker club not far from where I live and in the Summer a bunch of guys gather there and one of them has a trike a bit like yours with his wheelchair strapped to the back.

I was admiring it one day, and my Dad just looked at me and said 'Don't even think about it, I'm too old for the stress!!'.