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Thread: Starting a support group for my local area

  1. #1
    Join Date
    Oct 2010
    Location
    Bend, Oregon
    Posts
    265

    Starting a support group for my local area

    After months and months of threatening (or trying to convince myself!), I finally started a low key support group for those in my hometown area. I am amazed at how uneducated people are about their scoliosis and there are no support groups here. My doc feels there is a huge need and has been asking me for a couple years to consider it. I finally feel I am up to the task, at least physically, now that I am almost a year post op.

    I have been prcrastinating, afraid of setting up a formal group and having it get out of hand, and to be honest, end up just babysitting negative people. And I didn't want to start something that would get too big, too political, too much to handle on top of going back to work full time. Especially if I used a meeting room in conjunction with the hospital support groups, like I considered. I also know it can be difficult for so many people to find time nowadays to get out and attend meetings. I didn't want to commit to something and have to quit if only a few people attended. I would hate to let down the people that DID come to meetings.

    I felt that a support group with regular meetings to adhere to would also be too confining for me, since I am going back to work full time in a few weeks. We also like to travel and do some volunteer work, so I'm afraid of spreading myself too thin. But I still feel driven to help others, especially those who are seeking information and answers.

    I envisioned something with no pressure and no mandatory time commitments, just people giving time and support whenever they can or are able to.

    A lot like this forum, to be honest.

    So I decided to start a FB page for local support and resources. I believe it will be an easy way to keep in touch with people. I can give personalized support without being bound by timelines and meetings; yet still throw together special meetings now and then. We can have discussions on the wall, and even meet each other for coffee if we bond with someone. I have enjoyed doing this for some of the forum members with the personal messages. I hope to use the FB page in the same way, as a way of sharing information and sending people in the direction they need, and to encourage them to become proactive in their care and do some research of their own. Knowledge truly is power! Of course, this forum will be my most highly recommended site!

    Wish me luck! It feels good to do something positive for others. I promise I won't forget the forum... If you are interested, look it up under Scoliosis Support of Central Oregon.
    Jenee'-52
    Bend, Oregon

    Braced 3 years in high school
    Lumbar 70'+ Thoracic 70'+
    I had 3" shrinkage in 6 months...

    Surgery Jan 10, 2011
    9 hours
    T3 to S1 with pelvic fixation
    Both curves now 35'

    Possible revison for Flatback Syndrome
    Non-fusion
    Loose/broken hardware-awaiting CT results

    Here is the link to my before and after pics..
    http://www.scoliosis.org/forum/showt......&highlight=

  2. #2
    Join Date
    Nov 2010
    Location
    British Columbia
    Posts
    918
    Quote Originally Posted by jeneemohler View Post
    After months and months of threatening (or trying to convince myself!), I finally started a low key support group for those in my hometown area. I am amazed at how uneducated people are about their scoliosis and there are no support groups here. My doc feels there is a huge need and has been asking me for a couple years to consider it. I finally feel I am up to the task, at least physically, now that I am almost a year post op.

    I have been prcrastinating, afraid of setting up a formal group and having it get out of hand, and to be honest, end up just babysitting negative people. And I didn't want to start something that would get too big, too political, too much to handle on top of going back to work full time. Especially if I used a meeting room in conjunction with the hospital support groups, like I considered. I also know it can be difficult for so many people to find time nowadays to get out and attend meetings. I didn't want to commit to something and have to quit if only a few people attended. I would hate to let down the people that DID come to meetings.

    I felt that a support group with regular meetings to adhere to would also be too confining for me, since I am going back to work full time in a few weeks. We also like to travel and do some volunteer work, so I'm afraid of spreading myself too thin. But I still feel driven to help others, especially those who are seeking information and answers.

    I envisioned something with no pressure and no mandatory time commitments, just people giving time and support whenever they can or are able to.

    A lot like this forum, to be honest.

    So I decided to start a FB page for local support and resources. I believe it will be an easy way to keep in touch with people. I can give personalized support without being bound by timelines and meetings; yet still throw together special meetings now and then. We can have discussions on the wall, and even meet each other for coffee if we bond with someone. I have enjoyed doing this for some of the forum members with the personal messages. I hope to use the FB page in the same way, as a way of sharing information and sending people in the direction they need, and to encourage them to become proactive in their care and do some research of their own. Knowledge truly is power! Of course, this forum will be my most highly recommended site!

    Wish me luck! It feels good to do something positive for others. I promise I won't forget the forum... If you are interested, look it up under Scoliosis Support of Central Oregon.
    Well, that's all that matters then. Sounds like a great place to start.
    Son 14 y/o diagnosed January 20th. 2011 with 110* Curve
    Halo Traction & 1st. surgery on March 22nd. 2011
    Spinal Fusion on April 19th. 2011

    Dr. Krajbich @ Shriners Childrens Hospital, Portland Oregon



    http://tinyurl.com/Elias-Before
    http://tinyurl.com/Elias-After

  3. #3
    Join Date
    Aug 2010
    Location
    Florida
    Posts
    225
    Wow, just shows you how NOT into social networking I am...it took me several minutes to figure out what an FB page was. I get it.

    I think it's a great thing for you to do, and I would have the same reservations as you about a support group. I guess most people are on FB, so that would make sense for a start. Good luck!
    Stephanie, age 56
    Diagnosed age 8
    Milwaukee brace 9 years, no further treatment, symptom free and clueless until my 40s that curves could progress.
    Thoracolumbar curve 39 degrees at age 17
    Now somewhere around 58 degrees thoracic, 70 degrees thoracolumbar
    Surgeon Dr. Michael S. O'Brien, Baylor's Southwest Scoliosis Center, Dallas TX
    Bilateral laminectomies at L3 to L4, L4 to L5 and L5 to S1 on April 4, 2012
    Foramenotomies L3 through S1 in August 2014

  4. #4
    Join Date
    Nov 2010
    Location
    British Columbia
    Posts
    918
    Found you on FB Jenee! :-)
    Son 14 y/o diagnosed January 20th. 2011 with 110* Curve
    Halo Traction & 1st. surgery on March 22nd. 2011
    Spinal Fusion on April 19th. 2011

    Dr. Krajbich @ Shriners Childrens Hospital, Portland Oregon



    http://tinyurl.com/Elias-Before
    http://tinyurl.com/Elias-After

  5. #5
    Join Date
    Oct 2010
    Location
    Bend, Oregon
    Posts
    265
    I found a snag on facebook.... As a person, you can send each other private messages, just like this forum. But with a community service or organization page, there isn't the ability to send and receive messages that aren't publicly displayed on the page. Grrrrr!!! Some people may not want to have their writings shown in public. What to do, what to do!!! Maybe a new, separate gmail account just for the page??? You guys are right, I forget that a lot of the older folks aren't on FB, so there needs to be an alternate method of communication. Thanks for the reminder, guys!! Everyone I know is on it in order to keep in touch with friends and relatives, old high school chums, etc. Even my 85 year old grandmother is on it regularly. So many grandkids to keep an eye on!!

    I still think it is a good place to start out and to feel the waters. If it grows into something bigger, that will be great. If not, I will still be there for those who need direction and support. I sure appreciate everyone who helped and supported ME while going through presurgery nerves and recovery. "Pay it forward" is my new mantra!
    Jenee'-52
    Bend, Oregon

    Braced 3 years in high school
    Lumbar 70'+ Thoracic 70'+
    I had 3" shrinkage in 6 months...

    Surgery Jan 10, 2011
    9 hours
    T3 to S1 with pelvic fixation
    Both curves now 35'

    Possible revison for Flatback Syndrome
    Non-fusion
    Loose/broken hardware-awaiting CT results

    Here is the link to my before and after pics..
    http://www.scoliosis.org/forum/showt......&highlight=

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