11 replies to this topic

[Santa Cruz Soul Surfer (LRO)]

It is my belief, that SCI peer support is the key to helping people maintain a positive outlook after sustaining a spinal cord injury! Being able to truly relate to others who have, or are currently going through the same trials and tribulations as you, is perhaps one of the best forms of rehab!...I mean, this site is a prime example of such! I just wish hospitals would take peer support groups more seriously and include them as more of a critical part of their rehab program....I would like to hear everyone else's take on the matter....

Edited by Santa Cruz Soul Surfer (LRO), 03 December 2008 - 09:07 PM.

[Murray]

Check out www.placervillescisupport.homestead.com/index.html

Started this group over a year ago; little article on it in December issue, New Mobility; it's like you said - people want to share their story with someone who knows what the hell they're talking about.

Sports or conditioning is the other thing that's kept me goin'. Couldn't make it without 'em.

Check out Disabled Sports USA Far West

Have a great New Year.

Murray

[Hikkakaru]

Santa Cruz Soul Surfer (LRO), on Dec 3 2008, 01:05 PM, said:

It is my belief, that SCI peer support is the key to helping people maintain a positive outlook after sustaining a spinal cord injury! Being able to truly relate to others who have, or are currently going through the same trials and tribulations as you, is perhaps one of the best forms of rehab!...I mean, this site is a prime example of such! I just wish hospitals would take peer support groups more seriously and include them as more of a critical part of their rehab program....I would like to hear everyone else's take on the matter....

I was in a support group from my first rehab hospital, Casa Colina, for a little while and another one after that. Preinjury I was anti-social, so I figure what's changed besides the metal in my neck? They waste my time (in my opinion) and most of the time in my experiences they trainwreck the subjects at hand and people decide to go on their own little story tangents. Not for me but I am sure they help tons of people.

[edlee]

I have to admit,,,, my limited experiences with "peer support" other than at this forum,,,, has been much the same as Hikkakaru's,,,, that is to say,,, a tear fest.

I do think that if they were more goal oriented,,,,, swimming, skiing, hunting or fishing,,,, there would be less crying and more trying ( as a OT once said to me about many in my rehab).

There are a few groups around that do try to set things up for the few of us in the area in chairs and I have taken advantage of them as much as possible.

But,,, like Hikk,,, I have always been a loner,,, and still am ,,,,,,,as much as possible.
ed

[Santa Cruz Soul Surfer (LRO)]

I too can share many of these same feelings...However, i'm talking about post rehab peer support, versus that which one receives in the hospital...I agree though, in that post rehab peer support meetings should be more goal based, versus "venting" based.

I've just recently been appointed to a state commission and we are investigating the therapeutic benefits, of post injury SCI peer support meetings. What would you describe as being a more productive meeting and perhaps more importantly, what topics/goals would persuade you to attend such a meeting in the future?

[edlee]

If it's just talking about injuries,,,, I think you would be wasting your time,,,,,BUT,,,,,if it involved something fun,,,,, like fishing,,,, hunting,,, bowling,,,,cards/poker,,,

There are a thousand things that will interest a para or a quad,,,, We have plenty of peer review,, here and at other sites,,,, meeting in person to discuss BMs or cathing,, somehow misses the mark.

Even an organisation whose purpose is to keep SCI in the public view, would get my interest,, and I would come out of hiding to help in any way I could.... The peer group stuff would unfold naturally,, within that framework.

ed

[twisted_ophelia]

edlee, on Feb 15 2009, 06:10 PM, said:

If it's just talking about injuries,,,, I think you would be wasting your time,,,,,BUT,,,,,if it involved something fun,,,,, like fishing,,,, hunting,,, bowling,,,,cards/poker,,,

There are a thousand things that will interest a para or a quad,,,, We have plenty of peer review,, here and at other sites,,,, meeting in person to discuss BMs or cathing,, somehow misses the mark.

Even an organisation whose purpose is to keep SCI in the public view, would get my interest,, and I would come out of hiding to help in any way I could.... The peer group stuff would unfold naturally,, within that framework.

ed

Yeah, I'm not one to sit around crying with other people about my injury (though i'm not knocking anyone who needs that to heal emotionally, it's just not what *I* needed) but doing something with other SCI people that is lots of fun ie. the LRO surfing, skiing, tubing, riding horses, even a giant beach BBQ or something, in my opinion, is a great idea. It's a good way to give support in a positive way that encourages getting out there and doing stuff, being active plus you can share tips on things like making chairs more efficient, daily living tips, even bitching about something that sucks about SCI like our pee and poo issues, or about something ridiculous that happened to you like, I dunno, falling out of your chair, whatever. I think it is really important to have some fellow SCI people--if only online--to talk to and boost you up when needed (and to boost them up too).

[Ches]

My first and only meeting I attended while in the hospital was focused on SCI Sexuality. It ended up being an hour lecture of this one quad's personal experience, which I completely couldnt relate too. Being the perv I am, I was interested in learning about the sex toys, that was about it. My best coping and comforting peer to peer support has come from particular individuals I've met along the way, people I wasnt forced into a room with. Take Trinity for example, we wanted to share our stories.. and its blossomed into a great friendship.

I think the plan for activities is an obviously great answer, but I don't personally think I would be as willing to attend a group function where I felt as though I couldn't be my full self.

I dont really know what Im trying to get at here, I'm more or less just typing my random thoughts after reading such a post. Anyways, Group support is great, but I think options are just as great!

[twisted_ophelia]

Ches, on Feb 16 2009, 06:22 PM, said:

I think the plan for activities is an obviously great answer, but I don't personally think I would be as willing to attend a group function where I felt as though I couldn't be my full self.

I dont really know what Im trying to get at here, I'm more or less just typing my random thoughts after reading such a post. Anyways, Group support is great, but I think options are just as great!

Not sure why you think you wouldn't be able to be your "full self" at something that was activity-based? I'm confused. I for one love when people are genuine and completely themselves, and I am definitely not a politically correct super polite girl so I love when people just let go completely and have a blast being themselves, if that makes sense.

[E-DOG]

Santa Cruz Soul Surfer (LRO), on Feb 15 2009, 01:06 AM, said:

What would you describe as being a more productive meeting and perhaps more importantly, what topics/goals would persuade you to attend such a meeting in the future?

To para-phrase (no pun intended)
"What would persuade me to attend a meeting"

Hummm...Let's see. Women? Beer? Sources for medical marijuana? Free pizza?
That about covers it. Oh, and maybe a few people in wheelchairs who have stuff to talk about. Books they've read. Movies recently seen.
The usual stuff. Just being with others of the same ilk would be a positive thing. I don't need a shoulder to cry on, or a bunch of tear stains on my
brand new Ralph Laren T-shirt. But I do feel comfy when I'm with others who've experienced what I have.

It doesn't have to be a meeting per se. A place to gather. To meet new people in similar situations would be nice enough for me.
Let's keep the free pizza thing in mind though.

E

[edlee]

That might be the real answer,,,,,, Edog has it right,,, not a meeting,,,, a meeting place,,

They have senior centers,,,, why not a crip center???? A place to go where crips could just hang out.

A bar,,,, no booths,,, tables but no chairs,,,, a bar at table height with the bartenders area lowered to be at my eye level,,, or better yet, another crip as bartender..

accessable bathrooms (nonexistant in the bars I've been in),,, maybe a slightly lowered pool table.

Yeah,,, there's a meeting place I'd go to.
ed

[Santa Cruz Soul Surfer (LRO)]

Thank you all for your input, I really appreciate it!...Although due to cost factors, a "crip center" might not be a feasible option. The suggestions for a multitude of planned activities, based on both exposure to new things as well as creating a community atmosphere are great idea's!