00:36:19 CHRISTIAN J: Changes in weather drive my brain crazy 00:36:30 Mike: Reacted to "Changes in weather d..." with 🫤 00:38:32 Jodie Conley: I unfortunately trust no one 100 percent 00:40:16 Christine: 👏 00:40:34 Kirk Paige: Good Morning All! Hope Everyone has a great week! 00:40:42 CHRISTIAN J: I have a ton of clothes, I wash every 4 weeks or so! 00:41:16 Mike: Reacted to "Good Morning All! Ho..." with ❤️ 00:41:26 Kirk Paige: Reacted to "I have a ton of clot..." with 👍🏻 00:42:01 CHRISTIAN J: tbibridge.org 00:42:04 Casa Colina: TBIbridge.org 00:42:20 Larry in Alberta: TBI CHat 00:43:39 Zerra: Reacted to "I have a ton of clot…" with 👍🏻 00:45:38 Elisabeth Green: What kind of noodles are these? I'm hungry but gluten intolerant. 00:46:00 CHRISTIAN J: I loss 99% of friends and 95% of family after my tbi/stroke 00:47:07 Carolyn’s iPhone: I wanted to add this good thing is better than any Dr can do. 00:47:22 Mike: Reacted to "I wanted to add this..." with 👍 00:52:19 Carolyn’s iPhone: I was just going to say i think its really on our own personality and under our control. I have misunderstanding a lot and I remember that the family and friends just can’t understand. 00:54:04 Zerra: I’m happy you are talking about this it’s a reminder of what to do thank you Christian 00:54:13 Mike: Reacted to "I’m happy you are ta..." with ❤️ 00:54:35 James Manley: We read a term in a caregiving book: "community of care." The term was used to help define the assortment of trusted and trustWORTHY people that a survivor needs around them in order to thrive. Someone's "community of care" might include, for example, some medical folks, some friends/colleagues, and some family. And it makes sense that if your needs are different now, your "community of care" would look different, too. 00:56:49 Cindy Hernandez: Totally relate 00:58:49 Jodie Conley: Your stories is why I dont trust anyone 00:58:56 Mike: Reacted to "Your stories is why ..." with 😢 00:59:37 Mike: Replying to "Your stories is why ..." its very hard to trust and be vulnerable, especially after a TBI 01:00:00 Kirk Paige: Reacted to "its very hard to tru..." with 👍🏻 01:02:03 Jodie Conley: Replying to "Your stories is why ..." I didn't trust before either though. I kind of envy people who trust and have the comfort that they know they have someone in their corner 01:02:39 CHRISTIAN J: I was laid off from my last job, they thought I was lazy. They didn't believe my tbi 01:02:48 Christine: Can someone put what Celeste just said in the chat 01:02:55 Lorrie "Tigerlily" Herrmann: Boundary Statement "I want to trust you but while I am healing, I am learning to trust myself. I need to create a safe space and conserve my energy for therapy and healing. 01:03:22 James Manley: Thank you Lorrie 01:03:48 Zerra: Will Pomona be recorded? 01:04:02 Mike: Replying to "Your stories is why ..." it takes ALL parties involved to create the environment that fosters trust. Everyone needs to be aware and make their own boundaries. Stay Strong 01:04:15 Lorrie "Tigerlily" Herrmann: This will be a long journey. I need you to recognize and protect my safe space but I know this will be a long journey. I dont want to exclude you but I can understand if you do not feel strong enough to stay with me through this long journey. 01:04:53 Mike: Reacted to "Boundary Statement "..." with 👍 01:04:57 Cindy Hernandez: Reacted to I was laid off from ... with "❤️" 01:05:24 CHRISTIAN J: @ Zerra, we're not recording the in person meetings yet. 01:05:47 Zerra: Reacted to "@ Zerra, we're not r…" with 👌 01:06:26 Lorrie "Tigerlily" Herrmann: What aspect of your life would be beneficial to have extra support in your life? 01:08:01 Celeste Palmer: Not recording our meeting tomorrow in Pomona - we can report on it 01:08:11 Lorrie "Tigerlily" Herrmann: It would be beneficial to have a person that can help decipher the legal paperwork, patient rights, and government document applications. 01:08:29 Mike: Reacted to "It would be benefici..." with 👍 01:08:33 amy: Yes is there someone to help is there a charge for it Jodie? 01:08:41 Casa Colina: The aspect that we would like extra support would be financial resources that would be available to us 01:08:57 vinski: Replying to "Will Pomona be recor..." I can't make it I am in the Bay Area 01:09:02 amy: Can I apply for disability benefits if I haven't worked? 01:09:37 vinski: Replying to "Can I apply for disa..." check in with SSa and or Check in w your Doctor. 01:09:52 Celeste Palmer: Wish you were closer Vince! 01:10:06 vinski: Reacted to "Wish you were closer..." with ❤️ 01:10:11 CHRISTIAN J: We need more information on benefits and programs.... 01:10:23 James Manley: Mike I echo those thoughts, things did not start falling into place for me until i started setting AND MAINTAINING clear boundaries with people. I was still trying to please people who were actually harming my recovery, and causing emotional harm to me and my longtime partner. Once I disengaged with them, and stayed consistent with that, it really made a positive difference in my recovery journey. It's ongoing! 01:10:23 Christine: Reacted to We need more informa... with "👍" 01:10:28 Lorrie "Tigerlily" Herrmann: I am finding that even the understanding or reading through pharmaceutical directions can be overwhelming. We may not have the chemistry or science background to even understand what symptoms, side effects or drug interactions can effect. 01:10:59 Mike: Reacted to "Mike I echo those th..." with ❤️ 01:11:15 Mike: Reacted to "I am finding that ev..." with 👍 01:11:25 Elisabeth Green: What due diligence precedes giving someone a general or durable power of attorney? 01:11:29 amy: Reacted to "Mike I echo those th..." with 👍 01:12:03 Celeste Palmer: Respect yourself enough to walk away from anything that no longer serves you, grows you or makes you happy. 01:12:19 Mike: Reacted to "Respect yourself eno..." with 👍 01:12:22 Kirk Paige: Reacted to "Respect yourself eno..." with 👍🏻 01:12:25 Suzanne James-Peters: Reacted to "Mike I echo those th..." with ❤️ 01:12:30 Christine: Reacted to Respect yourself eno... with "👍" 01:12:31 Christine: Reacted to Respect yourself eno... with "👍🏻" 01:13:18 Larry in Alberta: Gopd work Jodie! 01:14:44 Lorrie "Tigerlily" Herrmann: For example, a patient may be on prescribed medication from different types of doctors, then go to an urgent care doctor or doctor that may prescribe medication for symptoms. Then the prescriptions may be at different unconnected pharmacies. Patients want to follow medical directions and take everything prescribed but they may not take them correctly at the right time, the right order, or the right dosage. 01:16:58 Jodie Conley: I have 3 clients !! and I know there is way more people out there but your right the medical system doesn't send you out for help after wards 01:18:01 rosa: Brianna the idea of a booklet is great! When I kept going to my primary doctor and having “random” complains he literally said, “Why cannot you just be happy.” That shut me down in seeking more support for a while because I didn’t know what to do and even started doubting myself . 01:18:25 Carolyn’s iPhone: A brain neuropsychologist helps me a lot 01:18:49 Jodie Conley: And not every "support worker " even understands brain injury 01:18:55 Jodie Conley: but i do 01:19:31 CHRISTIAN J: I got screwed by my lawyer.... 01:19:45 iPhonLinda: Reacted to "Mike I echo those th…" with ❤️ 01:20:39 James Manley: The most challenging boundaries to set were those with family. I kept assuming that they would recognize the need to change their thinking and behavior related to my new needs; they were unable to do so. I know they love me but their behavior is exhausting. Very insistent, pushing, personalities. So it was time to start conserving my energy. 01:20:49 Mike: Reacted to "The most challenging..." with ❤️ 01:21:22 Lorrie "Tigerlily" Herrmann: Replying to "For example, a patie..." The patient may be overmedicated or developing chronic illness like kidney disease, dementia, ulcers, digestive distress, slerp disorder, eating disorder, or accidents (falls/car crashes) as they try to treat with OTC's that counter or react with their prescriptions or their understanding of how to take them. 01:21:39 Jodie Conley: Family for me .... its hard.... they always think im just fine. 01:22:01 Mike: Reacted to "Family for me .... i..." with 👍 01:22:26 Christine: I've had to step away from a good friend who wanted to control everything. She's just like that with everyone, but I cannot handle her. 01:22:32 Kirk Paige: Reacted to "Family for me .... i..." with 👍🏻 01:22:40 Jodie Conley: Replying to "For example, a patie..." A good pharmacist is so important 01:22:44 Carolyn’s iPhone: I like to think the non TBI people are more confused 01:22:53 Cindy Hernandez: Saved my life 01:23:01 Kirk Paige: Reacted to "I like to think the ..." with 👍🏻 01:23:01 Christine: Reacted to I like to think the ... with "👍" 01:23:32 Jodie Conley: Thank you for all the input !!!!! 01:24:12 Carolyn’s iPhone: We speak in a different language I think. 01:24:31 Jodie Conley: It is a different language 01:24:42 Elisabeth Green: Reacted to I like to think the ... with "👍" 01:24:43 amy: Reacted to "Family for me .... i..." with 👍 01:25:09 Celeste Palmer: That’s why I share our new vocabulary so often 01:26:28 Lorrie "Tigerlily" Herrmann: Replying to "For example, a patie..." A good, consistent, same pharmacist has better training on the chemistry and up to date interactions. 01:27:36 Carolyn’s iPhone: I think our communication is just different sometimes. 01:28:01 Jodie Conley: Replying to "For example, a patie..." yes.... before the brain injury I worked in a pharmacy and the one that covered , whos still my friend was soo good at looking at all the meds and fixing the compromising meds 01:28:27 Mike: I think a TBI jolted me out of an illusion, a dream-state of some kind. and it took me a minute to realize and sort all the emotions and feelings and random thoughts and was like I was awakened to the real world. Boundaries needed to be set and the bombardment of things from the world needed to be filtered more, for me to cope. 01:28:49 Tony Falsone: curious if anyone else has embraced AI (ChatGBT, Claude, Gronk,etc) as an assistant? 01:29:13 Lorrie "Tigerlily" Herrmann: Replying to "I like to think the ..." Carolyn, This comment made me giggle in its sincere truth. I did not recognize this truth until 5 years into my last TBI. 01:29:24 Jodie Conley: right now Im at this meeting, volunteering at the seniors center for lunch , and selling popcorn for fundraiser,,,,,its draining me to be honest , But these are the best meetings 01:29:54 Jodie Conley: Im thankful for my injury 01:29:55 Lorrie "Tigerlily" Herrmann: Reacted to I think a TBI jolted... with "❤️" 01:30:11 Larry in Alberta: Reacted to "right now Im at th..." with ❤️ 01:30:42 Mike: Reacted to "Carolyn, This commen..." with 👍 01:30:49 Lorrie "Tigerlily" Herrmann: The center for neuro skills in Los Angeles helped to re learn the "basics". 01:30:57 Breanne Boyle: Yes but the doctors have to tell the patient about the Center for Neurological Skills. And many do not. 🙁 01:31:08 Jodie Conley: Reacted to "Yes but the doctors ..." with 👍 01:31:16 Mike: Reacted to "Yes but the doctors ..." with 👍 01:31:25 Carolyn’s iPhone: I can’t run 01:31:37 Kirk Paige: Reacted to "Yes but the doctors ..." with 👍🏻 01:31:56 Jodie Conley: Replying to "I can’t run" i dont even try 01:33:20 Mike: Replying to "Yes but the doctors ..." I had to be referred to speech therapy from my phys. therapist, just to realize that there was something more to be dealt with. I thank my phys. therapist alot 01:33:41 Jodie Conley: Thank you for everything but I now how to go get ready for the lunch we sell here. Have a truly wonderful day 01:33:53 Celeste Palmer: Thank you Jodie 01:34:45 Mike: This discussion is FANTASTIC!!!! sad that I must exit now...Be blessed EVERYONE!! 01:35:02 Kirk Paige: Reacted to "This discussion is F..." with 👍🏻 01:36:13 Zerra: So happy this is being recorded I’m having technical issues I can go back and listen to what I missed ❤️ 01:36:16 Lorrie "Tigerlily" Herrmann: I REALLY get upset and triggered when the Doctors or Family say "You shouldn't feel or experience these symptoms". This is not useful when we are asking for help and learning to communicate our individual experience...every brain injury is different. No brain maps identical. Every patient wants to be heard and understand how to work through, remove, or heal. 01:37:00 Lorrie "Tigerlily" Herrmann: Reacted to This discussion is F... with "😍" 01:37:02 Breanne Boyle: Reacted to "I had to be referred..." with ❤️ 01:38:32 Carolyn’s iPhone: The last test I got from the psycho neurologist was amazingingly helpful. 45 minutes of all kinds of different tests like being in school 01:38:59 James Manley: I do believe sleep is a great healer, but lately we've been wondering how much sleep is too much- we have always napped when we feel like it, but also maintain certain rhythms for bodily health - consistent mealtimes for example. Does that sound about right to y'all too? 01:40:29 Zerra: A new path in our brain 01:41:46 iPhonLinda: Has anyone had or requested a walk evaluation /assessment? I am 7 years post stroke, and I’m worried about my walking gait? walking doesn’t seem to be getting better. 01:42:52 Celeste Palmer: Yes, Jim I agree with sleep 01:43:08 Kirk Paige: Reacted to "I do believe sleep i..." with 👍🏻 01:43:32 CHRISTIAN J: Replying to "Has anyone had or r..." I'm nearly 8 yrs post, my walk has improved. Though it's obvious, that I'm not walking normally. I limp a bit and have gait disorder 01:44:24 Suzanne James-Peters: Linda, Yes had an assessment for walking by a neuro physical therapist. Walking with her was part of my therapy. She would correct my posture, gait, and focus. 01:44:52 iPhonLinda: Reacted to "Linda, Yes had an as…" with ❤️ 01:46:25 James Manley: Linda I'm on my second assessment now- I refresh my physical therapy and speech therapy every so often. I think it's good to do not only from the fitness side, but also because the medical community is learning more things about how to help us, and it's a good way to find out new info 01:46:32 CHRISTIAN J: I crash every day with walls, furniture, objects and I hate carpet mats 01:46:47 Carolyn’s iPhone: Great talk. Have to go. Have good weeks 01:46:54 iPhonLinda: Reacted to "Linda I'm on my seco…" with 👍 01:47:04 Suzanne James-Peters: I also saw a neuro optometrist who prescribed glasses with prisms and amazingly my drop leg went away and I was able to walk much better. 01:47:23 iPhonLinda: I’m with Kaiser, and I don’t believe they have a neuro therapist I’ll follow up thank you 01:47:35 Phala: Thank you all♥️