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Junior Member
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Join Date: Mar 2014
Location: Houston area
Posts: 21
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Junior Member
Join Date: Mar 2014
Location: Houston area
Posts: 21
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What would you look for in a support group?
A new TBI/PCS group started in my area last year, and we're still defining our goals. If you're part of a group, I'd love to hear what you do as well as things you've tried that maybe didn't work as well.
So far it's mostly been 4-6 of the same people, and we use the time at our monthly meetings to vent, ask questions, and share info in a very informal setting. It's been useful and wonderful to spend time with people who "get it" but we've had some new members recently and are starting to think about trying to do more.
Ideas include:
*Possibly a website if anyone is willing/able to create/maintain it
*A list of local resources - Drs who know what they're talking about, things you may not know about insurance/rights, good lawyers, etc
*A "fact sheet" on what to do when you've hit your head or had a whiplash, etc. (I've seen a couple we could work from, but not many include the whiplash danger, or they are too specific to one activity such as football or soccer)
*Social activities - tricky given the variations of injuries, but a nice change of pace for many
*Or we may decide that we just want to have that time to vent/share/be with people who understand
*We have some younger members who made poor choices that resulted in their TBIs, and they're interested in sharing their stories with other young people
Also, we've had more caregivers come recently. I think it's good to have some combined meetings because both sides can gain valuable insights, but I've noticed that some of the caregivers tend to want to take over, so I think some separate meetings might be valuable as well. Any thoughts or suggestions??
Thanks!
Diane
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What happened: I was on my Triathlon bike doing an easy ride through my neighborhood just a few weeks after completing Ironman Texas (2.4 mile swim, 112 mile bike, 26.2 mile run). A driver on a side street pulled up to a stop sign but didn't see me and pulled out in front of me. I tried to make a sharp turn alongside her but fishtailed and went into the side of her car with the left side of my body at about 17 mph.
I walked away with a headache and a whiplash, a sore shoulder, and some bruises but was counting my blessings. I did several months of PT for my shoulder and neck, and I still had problems with headaches, neck pain, and dizziness. My PT insisted I be evaluated, and I was diagnosed with a concussion. I was still in denial, but then I transferred to a vestibular/neuro rehab specialist and learned that my eyes weren't focusing properly (nystagmus, convergence disorder). I was discharged from that PT on June 10, 2014 - exactly one year after my accident - because I was no longer making "significant progress." I did more PT for my neck/shoulder, and on Dec 16, 2014, I had shoulder surgery. I'm coming to terms with the fact that I might never do another Ironman, but I'm not giving up on returning at some level.
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