BEGIN:VCALENDAR VERSION:2.0 PRODID:-//Circle of Rights - ECPv6.17.5.1//NONSGML v1.0//EN CALSCALE:GREGORIAN METHOD:PUBLISH X-WR-CALNAME:Circle of Rights X-ORIGINAL-URL:https://circleofrights.org X-WR-CALDESC:Events for Circle of Rights REFRESH-INTERVAL;VALUE=DURATION:PT1H X-Robots-Tag:noindex X-PUBLISHED-TTL:PT1H BEGIN:VTIMEZONE TZID:America/New_York BEGIN:DAYLIGHT TZOFFSETFROM:-0500 TZOFFSETTO:-0400 TZNAME:EDT DTSTART:20240310T070000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:-0400 TZOFFSETTO:-0500 TZNAME:EST DTSTART:20241103T060000 END:STANDARD BEGIN:DAYLIGHT TZOFFSETFROM:-0500 TZOFFSETTO:-0400 TZNAME:EDT DTSTART:20250309T070000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:-0400 TZOFFSETTO:-0500 TZNAME:EST DTSTART:20251102T060000 END:STANDARD BEGIN:DAYLIGHT TZOFFSETFROM:-0500 TZOFFSETTO:-0400 TZNAME:EDT DTSTART:20260308T070000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:-0400 TZOFFSETTO:-0500 TZNAME:EST DTSTART:20261101T060000 END:STANDARD END:VTIMEZONE BEGIN:VEVENT DTSTART;TZID=America/New_York:20250610T193000 DTEND;TZID=America/New_York:20250610T201500 DTSTAMP:20260116T170831Z CREATED:20250621T193719Z LAST-MODIFIED:20260116T170831Z UID:3709-1749583800-1749586500@circleofrights.org SUMMARY:YSG: Book called "Reinvention: Life After Traumatic Change" DESCRIPTION: URL:https://circleofrights.org/event/book-called-reinvention-life-after-traumatic-change/ LOCATION:Zoom CATEGORIES:Support Groups,Young Stroke Group END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20250617T193000 DTEND;TZID=America/New_York:20250617T201500 DTSTAMP:20260116T170831Z CREATED:20250623T143922Z LAST-MODIFIED:20260116T170831Z UID:3901-1750188600-1750191300@circleofrights.org SUMMARY:YSG: Improving Through Skilled Exercise DESCRIPTION:Quick recap\nThe meeting began with a focus on various physical therapy exercises and techniques\, particularly those related to balance\, coordination\, and reaction time\, with participants sharing their personal experiences and challenges. The conversation concluded with discussions about dizziness and balance issues\, including potential treatments and the importance of physical therapy\, with plans for a future meeting featuring a stroke survivor pursuing a doctorate in clinical psychology. \nNext steps\n\nJessica Chaffin: Present about resilience and quality of life survey for stroke survivors at next week’s meeting\nAll attendees: Join next week’s meeting with Jessica Chaffin to discuss resilience and quality of life survey for stroke survivors\nSusan: Help Lei get access to Slack in the next couple of days\nKellee: Share balance exercises from Flint Rehab and Stroke Association on Slack\nSteven: Continue physical therapy walks with gait belt to work towards returning to regular long walks\n\nSummary\nBalancing Skilled Exercise Concepts\nSusan discussed the concept of skilled exercise\, drawing parallels to the Olympics\, and emphasized the importance of balance in daily activities. She introduced the idea of combining two physical therapy concepts to create new exercises\, and Steven shared his experience with balance exercises involving walking around objects placed on the floor. \nBalance Exercises and Fall Prevention\nThe group discussed balance exercises and falls\, with several participants sharing their experiences. Steven mentioned having a stroke in 2013 and experiencing falls since then. Layli\, Lei\, and Shelli discussed various balance exercises they had tried\, including standing on a bouncing ball and practicing standing on one foot. Kellee offered to share resources from Flint Rehab and the Stroke Association. The participants agreed that balance exercises were important for preventing falls and improving stability\, with Susan noting that even simple exercises like picking up objects off the floor could be significant achievements. \nBalance and Coordination Exercise Techniques\nThe group discussed balance and coordination exercises\, with members sharing their experiences and techniques. Roo described using obstacle courses and hallway walking to improve coordination\, while Layli expressed concerns about using a cane for visibility. Jeff\, a new member\, introduced himself as a 33-year-old lawyer from Los Angeles who had a hemorrhagic stroke in January and is seeking support to return to work. Susan concluded by suggesting combining balance and coordination exercises\, with Roo mentioning a hallway walking technique as a safe option. \nSpeed\, Agility\, and Mobility Discussion\nThe group discussed the importance of speed and agility in various contexts. While some participants\, like Layli and Jeff\, viewed speed as important for maintaining pedestrian flow and keeping up with crowds\, others\, such as Shelli and Lisa\, focused more on distance rather than speed. The conversation shifted to agility\, with Roo noting its relevance in situations requiring quick direction changes and anticipation of obstacles. Susan highlighted the importance of agility when managing children in crowded spaces\, while the group agreed that stamina was crucial for overall mobility. \nEnhancing Reaction Time Awareness\nThe group discussed the importance of reaction time\, with several members sharing personal experiences. Layli and Susan highlighted how slow reaction times can lead to accidents\, whether driving or in everyday situations like handling hot water. Roo shared how driving experience helps with reaction time awareness\, while Susan mentioned a nerve issue affecting her right side’s response time. \nExercises for Multiple Physical Skills\nThe group discussed exercises that incorporate multiple physical skills such as balance\, coordination\, speed\, power\, agility\, and reaction time. Roo shared an example of climbing stairs while being supported by a physical therapist\, which requires multiple skills. The participants also mentioned activities like swimming and walking as exercises that can improve overall fitness. Susan announced that the next meeting will feature Jessica Chaffin\, a stroke survivor pursuing a doctorate in clinical psychology\, who will discuss resilience and quality of life for stroke survivors. \nStroke-Related Dizziness Management Discussion\nThe group discussed dizziness and balance issues\, with Susan explaining that these symptoms are related to the stroke’s impact on equilibrium. Kellee shared her experience with meclizine\, an over-the-counter medication that helps with dizziness\, and mentioned using a scopolamine patch for motion sickness. Layli mentioned that some physical therapists specialize in vertigo symptoms\, and Kellee agreed that physical therapy can be helpful for balance issues. Susan offered to contact another woman for Layli\, who may reach out to her later in the week. URL:https://circleofrights.org/event/a-stroke-survivor-as-a-clinical-psychology-student/ LOCATION:Zoom CATEGORIES:Support Groups,Young Stroke Group END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20250624T193000 DTEND;TZID=America/New_York:20250624T201500 DTSTAMP:20260116T170831Z CREATED:20250623T143923Z LAST-MODIFIED:20260116T170831Z UID:3902-1750793400-1750796100@circleofrights.org SUMMARY:YSG: Interview with Stroke Survivor Josh Apostolos DESCRIPTION: URL:https://circleofrights.org/event/interview-with-stroke-survivor-josh-apostolos/ LOCATION:Zoom CATEGORIES:Support Groups,Young Stroke Group END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20250701T193000 DTEND;TZID=America/New_York:20250701T201500 DTSTAMP:20260116T170831Z CREATED:20250623T143923Z LAST-MODIFIED:20260116T170831Z UID:3903-1751398200-1751400900@circleofrights.org SUMMARY:YSG: Recent Life and Impacts DESCRIPTION: URL:https://circleofrights.org/event/vivistim-neuromodulation-therapy-for-stroke-recovery/ LOCATION:Zoom CATEGORIES:Support Groups,Young Stroke Group END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20250703T190000 DTEND;TZID=America/New_York:20250703T200000 DTSTAMP:20250704T162725Z CREATED:20250626T204047Z LAST-MODIFIED:20250704T162725Z UID:4396-1751569200-1751572800@circleofrights.org SUMMARY:TSG: Teen Stroke Group Meeting DESCRIPTION: URL:https://circleofrights.org/event/teen-stroke-group-meeting-2/ LOCATION:Zoom CATEGORIES:Support Groups,Teen Stroke Group END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20250708T193000 DTEND;TZID=America/New_York:20250708T201500 DTSTAMP:20260116T170842Z CREATED:20250629T172908Z LAST-MODIFIED:20260116T170842Z UID:4631-1752003000-1752005700@circleofrights.org SUMMARY:YSG: Vivistim - Neuromodulation therapy for stroke recovery DESCRIPTION: URL:https://circleofrights.org/event/ysg-topic-to-be-announced-22/ LOCATION:Zoom CATEGORIES:Support Groups,Young Stroke Group END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20250715T193000 DTEND;TZID=America/New_York:20250715T201500 DTSTAMP:20260116T170842Z CREATED:20250629T172908Z LAST-MODIFIED:20260116T170842Z UID:4632-1752607800-1752610500@circleofrights.org SUMMARY:YSG: Workforce Inclusion (PRIDE Industries) DESCRIPTION:We’re excited to welcome Rob Hines\, Senior Director of Workforce Inclusion at PRIDE Industries—a national leader in disability employment services. Rob will share how PRIDE supports individuals with job preparation\, placement\, and ongoing on-the-job assistance. Join us to learn what resources are available and ask questions! URL:https://circleofrights.org/event/ysg-topic-to-be-announced-21/ LOCATION:Zoom CATEGORIES:Support Groups,Young Stroke Group END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20250722T193000 DTEND;TZID=America/New_York:20250722T201500 DTSTAMP:20260203T172144Z CREATED:20250629T172908Z LAST-MODIFIED:20260203T172144Z UID:4633-1753212600-1753215300@circleofrights.org SUMMARY:YSG: Interview of Fellow Stroke Survivor Lisa and Her Husband Tommy DESCRIPTION:Susan interviewed fellow stroke survivor Lisa and her husband Tommy about what her life was like before her stroke\, the impact the stroke has had on her life\, and her approach to recovery. 19 attended. \n\n\n\nBelow is a summary of what was discussed at the meeting. Young Stroke Group Members can also access a recording. If you’d like to watch the replay\, please ask for the link on the YSG Slack channel. \n\n\n\nPrintable Version of Meeting SummaryDownload\n\n\n\n\n\n\n\nMeeting Summary\n\n\n\nLisa’s Heart Condition and Stroke\n\n\n\nLisa had one transient ischemic attack (TIA) in September 2016 and a full stroke in October 2019. After the TIA\, she experienced dizziness but felt fine after two weeks and went back to work. She went for follow-up at Georgetown University Hospital where doctors discovered Lisa had a hole in her heart. She was not a candidate for closure\, so she was prescribed aspirin as a blood thinner. The stroke in October 2019 was more severe\, leading to hospitalization at the Washington Hospital Center\, where the hole in her heart was closed. \n\n\n\nLisa’s Stroke at DSW Store\n\n\n\nLisa described the events leading up to her stroke\, which occurred while she was at a DSW in Bethesda\, Maryland. She had been experiencing a severe headache for several days and had a vision disturbance during a spin class. On the day of the stroke\, she felt nauseous and vomited outside the DSW before being taken to Suburban Hospital and later transferred to Georgetown. Tommy\, who was in North Carolina at the time\, rushed to be by her side. After being treated at Georgetown Hospital\, Lisa underwent rehabilitation at ARH (Adventist Rehab Hospital) for 12 days before having a PFO closure procedure at Washington Hospital Center. The medical team at Georgetown was praised for their care and support\, and Lisa’s spirits were noted as a key factor in her recovery process. \n\n\n\nLisa’s Post-Stroke Recovery Journey\n\n\n\nThe group discussed Lisa’s recovery from a cerebellar stroke\, which affected her speech\, balance\, and memory. Lisa reported that her balance was generally good but sometimes problematic\, her speech was mostly fine except for difficulties with the left side of her tongue\, and her memory was good but sometimes delayed. Tommy shared that Lisa had been prescribed antidepressants after the stroke to manage potential depression\, which she initially resisted but later continued at a lower dose. The group also discussed how antidepressants can affect blood vessels and are not suitable for some stroke survivors\, highlighting the importance of individualized treatment plans. \n\n\n\nStroke Recovery and New Career\n\n\n\nLisa shared her experience of having an ischemic stroke in October 2019\, which led to her leaving her job in senior living after a 16-year career. She now works part-time for a company called Town and Country\, packing belongings for older clients moving to senior communities. Lisa discussed her current medication\, which includes a lower dose of escitalopram (Lexapro)\, and mentioned that physical activity\, such as going to the gym\, helps manage fatigue associated with her stroke recovery. \n\n\n\nLisa’s Heart Condition Journey\n\n\n\nThe group discussed Lisa’s medical condition\, including a mysterious blood clotting issue that doctors haven’t fully explained. Lisa and Tommy shared their experiences with the adjustment period after her medical treatment\, noting how it affected their daily lives and required support from neighbors. The conversation concluded with Lisa recommending a book called “Suffer Strong” by Katherine Roche\, which she found helpful. URL:https://circleofrights.org/event/ysg-interview-of-fellow-stroke-survivor-lisa-and-her-husband-tommy/ LOCATION:Zoom CATEGORIES:Support Groups,Young Stroke Group END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20250729T193000 DTEND;TZID=America/New_York:20250729T201500 DTSTAMP:20260116T170842Z CREATED:20250629T172908Z LAST-MODIFIED:20260116T170842Z UID:4634-1753817400-1753820100@circleofrights.org SUMMARY:YSG: Interview of Fellow Stroke Survivor Shelli and Her Husband Bill DESCRIPTION:Sue interviewed stroke survivor Shelli and husband Bill to learn how they and their family are handling life after stroke. 19 attended. \n\n\n\nBelow is a summary of what was discussed at the meeting. Young Stroke Group Members can also access a recording. If you’d like to watch the replay\, please ask for the link on the YSG Slack channel. \n\n\n\nPrintable Version of Meeting SummaryDownload\n\n\n\nQuick recap\n\n\n\nThe meeting began with introductions and casual conversation about personal matters before transitioning to the main focus of interviewing Shelli about her stroke experience in June 2021. Shelli shared her journey through hospitalization\, recovery\, and adaptation to life after her stroke\, including her experiences with mobility aids and physical therapy. The group discussed various aspects of stroke recovery\, including speech therapy\, driving adaptations\, and support systems\, with participants sharing their own experiences and offering encouragement to each other. \n\n\n\nMeeting Summary\n\n\n\nAI Companion Project Interview\n\n\n\nThe meeting began with introductions and casual conversation\, including updates on personal matters such as Walter’s mother’s heart attack and Amber Woods’ stroke. Susan then confirmed she was recording the meeting and introduced Shelli\, who was joined by her husband\, Bill. The primary focus of the meeting was to conduct an interview with Shelli and Bill. \n\n\n\nStroke Experience During Race\n\n\n\nShelli shared her experience of having a stroke on June 6\, 2021\, while Bill and his friend Drew were preparing for an Appalachian Trail hike. She described how she had driven to Baltimore for a 10-mile race\, which she completed successfully\, but then experienced confusion while driving home\, leading to a car accident involving hitting a pole and two cars. Despite her confusion\, she continued driving for another mile and a half before being stopped by police officers who discovered she had four flat tires. \n\n\n\nStroke Experience and Family Response\n\n\n\nShelli shared her experience of being taken to the hospital for evaluation after feeling unwell\, despite her children’s concerns. She decided to leave against medical advice\, but later returned to the hospital after experiencing a stroke at home. Her children\, who were present at the time\, called for an ambulance\, and she spent over a month in the hospital before being discharged on July 21st. Meanwhile\, her husband Bill was hiking the Appalachian Trail and only learned about the situation when he received a message from a neighbor. Shelli mentioned that Bill turned around on the trail\, came home\, and spent as much time as possible in the hospital with her\, despite the fact that it was in the middle of COVID\, he was working full-time\, and visiting hours were restricted. It was important to Shelli that her friends and family were with her during that time. She said her husband was (and still is) a godsend! \n\n\n\nPost-Stroke Recovery and Lifestyle Adaptation\n\n\n\nShelli discussed her active lifestyle before her stroke\, which included running\, gym workouts\, and yoga. She shared her hospital experience at Shady Grove\, noting the good care but strict COVID-19 visitor policies. Her husband was present throughout her hospital stay\, providing support and learning to assist with transfers. Shelli mentioned she can now perform most activities of daily living but still needs help with tasks like applying deodorant. She and Bill started the “All Weather Walking Club” to maintain a daily walking routine\, even in adverse weather conditions. \n\n\n\nDriving After Stroke: Adaptations and Experiences\n\n\n\nThe group discussed driving after a stroke or disability\, with Roo sharing his experience of learning to drive with hand controls at Shady Grove after losing the use of his left hand. Shelli expressed interest in eventually driving again\, particularly for local errands and social visits\, and learned that Maryland allows disabled drivers with one arm\, one leg\, and one eye to drive. The discussion included practical advice about car adaptations\, with Roo describing how he uses a spinner knob and extended signal stalk\, and several participants shared their experiences of learning to transfer into cars and adjust to driving with disabilities. \n\n\n\nStroke Recovery and Support Strategies\n\n\n\nThe group discussed challenges faced by stroke survivors\, with Shelli sharing her experience of adjusting to life after a stroke. She emphasized the importance of not discharging oneself too early from the hospital and advised leaning on family and friends for support. Layli asked about strategies for walking without a cane\, and Shelli explained that she uses a gait belt with her husband’s assistance\, though they are working towards reducing dependence on it. \n\n\n\nMobility Device Choices and Experiences\n\n\n\nThe group discussed various assistive devices for mobility\, with Shelli describing her use of a Hemi\, a single-handled mobility aid\, and a four-prong cane\, depending on the situation. Susan offered to give away her unused scooter to Shelli\, who expressed interest in exploring it. The conversation highlighted personal preferences and practical considerations when choosing mobility aids\, with some participants emphasizing the importance of independence and others the need for adaptability in different settings. \n\n\n\nSpeech Therapy and Recovery Insights\n\n\n\nThe group discussed speech therapy and recovery after strokes\, with Shin sharing his experience of having a stroke 10 months ago and struggling with speech. Several participants\, including Shelli\, Kristi\, and Jeff\, shared their own experiences with speech therapy\, with Jeff noting that Shin’s progress might not be visible to him but is significant compared to his initial state. The conversation concluded with encouragement from Jeff and others that Shin should not give up\, as progress is being made despite the ongoing challenges. \n\n\n\nSpeech Therapy Techniques and Experiences\n\n\n\nThe group discussed speech therapy exercises and techniques\, with Kellee sharing her experience of practicing phrases and word lists with her dog to improve her speech. Susan informed Shin about joining Slack\, a communication platform\, and mentioned a special channel for speech therapy meetings. The conversation concluded with Crystal sharing a story about her 11-year-old daughter using profanity during her brain surgery\, demonstrating her strong personality. URL:https://circleofrights.org/event/ysg-interview-of-fellow-stroke-survivor-shelli-and-her-husband-bill/ LOCATION:Zoom CATEGORIES:Support Groups,Young Stroke Group END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20250805T193000 DTEND;TZID=America/New_York:20250805T201500 DTSTAMP:20260116T170842Z CREATED:20250629T172908Z LAST-MODIFIED:20260116T170842Z UID:4635-1754422200-1754424900@circleofrights.org SUMMARY:YSG: Interview of Fellow Stroke Survivor Bonita and Sister Toni DESCRIPTION:Sue interviewed fellow stroke survivor Bonita and Sister Toni. 19 attended. \n\n\n\nBelow is a summary of what was discussed at the meeting. Young Stroke Group Members can also access a recording. If you’d like to watch the replay\, please ask for the link on the YSG Slack channel. \n\n\n\nPrintable Version of Meeting SummaryDownload\n\n\n\nQuick recap\n\n\n\nThe Young Stroke Group learned about Bonita’s stroke recovery journey\, which involved complications from a knee replacement surgery during COVID-19. The conversation ended with discussions about medical services and upcoming speakers for future meetings\, including presentations on traumatic brain injury and managing stroke-related challenges. \n\n\n\nSummary\n\n\n\nStroke Experience\n\n\n\nSusan then introduced Bonita. She was a nurse supervisor at Senior Helpers before the COVID-19 pandemic\, where she worked for 14 years and enjoyed the gerontology aspect of her job despite finding paperwork challenging. \n\n\n\nPost-Surgery Stroke Complications\n\n\n\nBonita shared her experience of having a stroke three days after a knee replacement surgery in October 2023. She described the complications that arose due to the recent surgery\, including the need for a tourniquet to control bleeding during her stroke treatment. Bonita expressed significant pain and fear of losing her leg during this time. She also mentioned the challenges of being alone during the emergency\, as her family was far away\, and the difficulties in communicating due to her stroke symptoms. \n\n\n\nBonita’s Resilient Recovery Journey\n\n\n\nBonita shared her story of resilience after a stroke\, describing how she recovered with the help of her sister Toni\, who traveled to her when she was released from rehab. Toni explained how Bonita\, despite her own challenges\, found creative ways to visit their mother in the hospital\, including arranging for a neighbor to drive her there daily. The family shared photos and discussed how Bonita’s determination and faith helped their mother recover\, with Toni noting that Bonita’s strength and ability to connect with others through prayer and church visits played a crucial role in their mother’s recovery. \n\n\n\nStroke Survivor Experiences and Insights\n\n\n\nThe meeting focused on Bonita’s experience as a stroke survivor\, where she shared insights about the importance of utilizing available medical services like nurses\, occupational therapists\, and speech therapists. Bonita attributed her stroke to a recent surgery and noted that her hearing issues\, which began during the stroke\, fully resolved after about 8 days in the neuro unit. The discussion also covered Kellee’s experience with hearing loss and tinnitus following her stroke\, with Kellee explaining how hearing aids and cognitive behavior therapy have helped manage her condition. Susan announced upcoming speakers for the next two meetings: Kimia will discuss the differences between traumatic brain injury and stroke on August 9th\, and Layley will present on “what keeps you up at night” and the circle of control on August 19th. URL:https://circleofrights.org/event/ysg-interview-of-fellow-stroke-survivor-bonita/ LOCATION:Zoom CATEGORIES:Support Groups,Young Stroke Group END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20250805T210000 DTEND;TZID=America/New_York:20250805T220000 DTSTAMP:20250808T185538Z CREATED:20250629T195424Z LAST-MODIFIED:20250808T185538Z UID:4736-1754427600-1754431200@circleofrights.org SUMMARY:Stroke Leadership Council DESCRIPTION:Below is a summary of what was discussed at the meeting. \n\n\n\nPrintable Version of Meeting SummaryDownload\n\n\n\nQuick recap\n\n\n\nThe team discussed Bonita’s recent medical experience and reviewed ongoing projects including presentations\, website updates\, and social media engagement strategies. They explored challenges faced by stroke survivors after hospital discharge\, particularly regarding access to necessary medical care and rehabilitation services\, and discussed the importance of including rehabilitation in the overall stroke care system. The group planned upcoming presentations and events\, including language sessions and adaptive sports discussions\, while also addressing the need for enhanced support for teen stroke survivors and their caregivers. \n\n\n\nNext steps\n\n\n\n\nKimia to prepare and conduct an introductory session on language plasticity before September 23rd\n\n\n\nKimia to organize a Q&A session with Layli about stroke survivor experiences\n\n\n\nKimia to develop guidelines for teen stroke group Discord channel discussions\n\n\n\nKimia to explore funding opportunities for community reintegration programs\n\n\n\nSusan to ask Sarah to provide Layli with a PDF version of the headhunter presentation\n\n\n\nPreeti to review and select potential speakers from the provided spreadsheet\n\n\n\nPreeti to arrange for a physiatrist to speak about adaptive sports for stroke survivors\n\n\n\nTeam to meet again on Tuesday\, October 7th at 9 PM Eastern time\n\n\n\nPreeti to reach out to Dr. Christina Graeley and Dr. Katrina Marie Nayak to see if they would give a talk\n\n\n\nPreeti to introduce potential speakers to Susan for a 15-20 min presentation\n\n\n\nPreeti to organize speakers to talk about adaptive sports and its benefits\n\n\n\nPreeti to arrange a speaker to discuss job opportunities for stroke survivors\n\n\n\nPreeti to find a speaker to talk about new technologies and gadgets in rehabilitation\n\n\n\nPreeti to arrange a psychologist to discuss behavioral health issues\n\n\n\nKimia to update the list of questions from stroke survivors and include recent meetings\n\n\n\nPreeti to suggest resident speakers for presentations if faculty members cannot participate\n\n\n\nPreeti to set up a date for physiatry presentation\n\n\n\nSusan to prepare a list of questions for potential speakers\n\n\n\nPreeti to consider adding flyers on the website for research studies looking for volunteers\n\n\n\n\nSummary\n\n\n\nTeam Updates and Meeting Frequency\n\n\n\nThe group discussed Bonita’s recent medical experience\, including her knee replacement surgery and subsequent stroke treatment involving tourniquets and TPA medication. Susan and Layli had a brief conversation about their schedules and connecting offline. The meeting then began with Susan introducing the agenda\, which included updates on current work\, future planning\, and action items\, with a suggestion to potentially adjust the meeting frequency from every 6 weeks. Kimia joined the call briefly before the meeting officially started. \n\n\n\nProject Updates and Future Planning\n\n\n\nThe team discussed ongoing projects and upcoming tasks. Layli confirmed she had worked on one headhunter presentation and was ready to work on three more before year-end\, pending Susan’s approval to share the final version. Kimia reported progress on building a brand kit with Nagar and noted increased engagement on Slack\, with plans to cross-promote social media posts and encourage member donations. Kimia also mentioned moving to Chicago and outlined plans to approach partner organizations for funding\, particularly for the caregiving section. \n\n\n\nLanguage Plasticity Presentation Series\n\n\n\nKimia plans to give two presentations on language and brain plasticity\, with the first being an introductory session on September 2nd and the second\, a more detailed presentation on September 23rd. Preeti offered to join the second session and suggested bringing in a neurologist to speak about language plasticity after strokes. Susan agreed to provide an overview of the September 2nd session to help prepare for the more technical presentation on the 23rd. \n\n\n\nStroke Support Group Planning Meeting\n\n\n\nThe team discussed plans for upcoming presentations\, with Kimia planning to cover aphasia\, apraxia\, and dysarthria\, and potentially including a Q&A session with Layli sharing her survivor experience. They reviewed the updated website\, which Kimia noted now contains comprehensive information\, and discussed strategies for advertising the organization. Susan shared updates about the young stroke and teen stroke support groups\, noting challenges with caregiver support and the need for a new grant writer as their current one is no longer interested in the project. \n\n\n\nEnhancing Post-Hospital Stroke Care\n\n\n\nThe group discussed the challenges faced by stroke and brain injury survivors after hospital discharge\, particularly the lack of access to necessary medical care and rehabilitation services. Susan highlighted the need for continuity of care\, including follow-up appointments with neurologists and access to physiatrists (rehabilitation doctors) who can address the whole body’s function. Preeti\, a physiatrist\, explained their role in rehabilitation\, focusing on recovery and substitution strategies using technology. The group agreed that more awareness and access to physiatrists are needed\, with Preeti offering to create a presentation about physiatrists’ role in rehabilitation. \n\n\n\nRehabilitation Focus in Stroke Care\n\n\n\nThe group discussed the importance of including rehabilitation in the overall stroke care system\, noting that it was previously overlooked. They agreed to focus on community reintegration as a key aspect of their work\, with plans to seek funding for this initiative. The team also discussed supporting teen stroke survivors and their caregivers\, with Susan suggesting the need for enhanced support for both groups. Kimia highlighted the challenges faced by parents of teen stroke survivors and the potential for using Discord and other platforms to facilitate communication and support. \n\n\n\nStory Sharing and Next Steps\n\n\n\nThe group discussed Susan’s experience with a stroke at age 9 and her challenges returning to school\, which Preeti suggested could be an inspiring story to share with the children they’re helping. They agreed to meet again on Tuesday\, October 7th at 9 PM Eastern time\, with Kimia planning to coordinate with Layli beforehand. The meeting will follow their language presentations\, and Susan will remember to clarify the time zone for participants. \n\n\n\nHeadache\, Stroke\, and Adaptive Sports\n\n\n\nPreeti discussed the importance of headache physicians\, particularly neurologists who specialize in migraines and their link to strokes. She suggested reaching out to doctors like Christina Graeley and Katrina Marie Nayak for potential talks\, emphasizing the need for them to communicate in non-medical language. Susan shared her experience with adaptive sports and mentioned a previous project involving a grant for the NIH. Preeti introduced the idea of inviting Dr. Cordova from Johns Hopkins to discuss the benefits of adaptive sports for community reintegration\, focusing on opportunities for individuals to engage in activities like surfing\, skiing\, or sailing. \n\n\n\nStroke Recovery and Rehabilitation Initiatives\n\n\n\nThe group discussed several topics related to stroke recovery and rehabilitation. Susan highlighted the need to explore job opportunities for stroke survivors\, particularly in their home environments\, and mentioned the importance of updating survivors on new rehabilitation technologies and treatments. Preeti offered to arrange expert speakers on various topics\, including technology for walking\, hand function\, and behavioral health\, and Kimia suggested creating a Q&A format for common questions about stroke. The group also discussed the lack of coverage on medication management\, alternative therapies\, and mental health support\, with Preeti agreeing to find a neurologist to speak on medication policies and alternatives. \n\n\n\nSpeaker Planning and Presentation Guidelines\n\n\n\nPreeti will contact potential speakers to arrange 15-minute presentations at 7:30 PM Eastern\, with a 7:35 PM start time\, followed by 10-15 minutes for questions. Susan suggested having residents present on physiatry/rehab topics on October 17 if no other speakers are available\, as this would benefit their resumes. The group discussed clinical trials research presentations\, agreeing that speakers should give a general overview for 25-35 minutes before discussing specific location details in the final 10 minutes\, to accommodate participants from different areas. Susan also mentioned she would be holding a board of directors meeting in the next 2-3 weeks. URL:https://circleofrights.org/event/stroke-leadership-council/ LOCATION:Zoom CATEGORIES:Stroke Leadership Council END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20250807T190000 DTEND;TZID=America/New_York:20250807T200000 DTSTAMP:20250809T155715Z CREATED:20250626T204047Z LAST-MODIFIED:20250809T155715Z UID:4397-1754593200-1754596800@circleofrights.org SUMMARY:TSG: Nate's Story DESCRIPTION:Below is a summary of what was discussed at the meeting. Teen Stroke Group Members can also access a recording. If you’d like to watch the replay\, please ask for the link on the Slack channel. \n\n\n\nPrintable Version of Meeting SummaryDownload\n\n\n\nQuick recap\n\n\n\nNate\, a 27-year-old personal trainer who had a stroke at age 13 affecting his right side mobility and speech\, shared his recovery journey and how he adapted to pursue education in exercise science and public health despite ongoing physical limitations. The group discussion included Crystal sharing about her daughter McKayla who recently had a stroke during a parade\, with both families discussing the challenges of rehabilitation and returning to normal activities. Nate offered insights about his experiences with anxiety\, driving adaptations\, and rehabilitation strategies\, while emphasizing the importance of pushing through recovery exercises and finding ways to adapt to limitations. \n\n\n\nSummary\n\n\n\nYoung Stroke Survivors Support Group\n\n\n\nNate introduces himself to the group as a 27-year-old who had a stroke at age 13. Crystal shares that McKayla is feeling anxious because she scratched part of her surgical scar on her head\, while Derek mentions his son is currently in 18 hours of therapy per week. \n\n\n\nTeenage Stroke Survivor’s Recovery Journey\n\n\n\nNate shares his experience of having a stroke in his left MCA affecting the Broca’s area of his brain when he was 13 years old in 8th grade\, which took away his right side mobility and ability to speak. He describes the onset during gym class\, his collapse on the field\, and being airlifted to Children’s Hospital in DC after initially being taken to Shady Grove Hospital. Nate explains his rehabilitation journey\, attending physical\, occupational\, and speech therapy daily for five months\, during which he made gradual improvements\, and eventually returning to school with assistive devices including an ankle-foot orthotic (AFO). \n\n\n\nPersonal Trainer’s Stroke Recovery Journey\n\n\n\nNate shares that he is a personal trainer who owns his own business despite having had a cryptogenic stroke in his left middle cerebral artery\, which affected the right side of his body. He explains that his arm remains the most affected area\, with limited mobility and some nerve pain\, while his foot has recovered better\, noting that larger muscles typically recover first after a stroke. Nate demonstrates his current limitations\, showing how he can partially raise his arm but struggles to fully open his hand without assistance. \n\n\n\nStroke Recovery Experiences and Rehabilitation\n\n\n\nCrystal shares that McKayla had a stroke on March 17th while baton twirling in a Saint Patrick’s Day parade\, and was taken to the ER afterward. Nate discusses his recovery after his stroke at age 27\, focusing on learning to play soccer with his left foot since his right foot was affected. He also mentions using a TENS unit for rehabilitation 3-4 times a week for about 15-20 minutes at a time\, acknowledging the difficulty of relearning basic movements like opening his hand. \n\n\n\nNate’s Athletic Journey and Career\n\n\n\nNate explains how he adapted his soccer playing style after his injury by focusing on positioning rather than running. He also tried weightlifting in high school\, which he practiced five days a week and eventually led to his career as a personal trainer. Nate shares that he pursued a bachelor’s degree in exercise science\, despite initially thinking it wouldn’t involve much science or math\, and is now working on a master’s degree in public health with a concentration in physical activity at UMD. \n\n\n\nPost-Stroke Identity and School Adjustments\n\n\n\nNate shares that after his stroke\, he experienced significant anxiety but not depression\, particularly feeling self-conscious about his changed gait and worried that others would immediately identify him as a stroke survivor. He mentions that his personality became more closed off for several years\, especially when he realized the long-term implications of his stroke as he approached college. Crystal discusses her daughter McKayla’s situation\, noting that while McKayla is comfortable mentioning her brain surgery\, her friends don’t understand what a stroke is but likely notice changes in her. Crystal explains that she had McKayla return to school part-time for the final five weeks of the school year to secure an individualized education program (IEP)\, as McKayla was previously a high-performing student. \n\n\n\nStroke Recovery and Encouragement\n\n\n\nNate shares his experience of having a stroke at a young age\, explaining that while his speech and physical abilities were affected\, his mind remained sharp. He discusses how the stroke made him seem more mature for his age\, which he uses to make better decisions. Crystal mentions that her daughter McKayla is trying to return to baton twirling\, which requires using both sides of the body\, presenting a challenge for Nate who has limited use of one side. Nate encourages McKayla\, acknowledging the difficulty of her situation but assuring her that things will improve over time. \n\n\n\nPost-Stroke Recovery and Adaptation\n\n\n\nNate shares his experience with driving after a stroke\, explaining how he made it a mission to continue driving despite challenges\, even choosing a manual car. When asked what he wishes his parents had done differently\, Nate mentions he wishes he had been pushed harder with physical therapy and exercises during the critical first six months of recovery\, though he acknowledges the difficulty in balancing pushing a child who has just had a stroke. He also discusses how his aphasia affected his reading and writing abilities for about three years after his stroke\, but eventually his interest in reading returned\, particularly with fantasy and sci-fi books that helped him escape negative feelings. URL:https://circleofrights.org/event/teen-stroke-group-meeting-3/ LOCATION:Zoom CATEGORIES:Support Groups,Teen Stroke Group END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20250812T193000 DTEND;TZID=America/New_York:20250812T201500 DTSTAMP:20260116T170842Z CREATED:20250629T172908Z LAST-MODIFIED:20260116T170842Z UID:4636-1755027000-1755029700@circleofrights.org SUMMARY:YSG: Differences Between a Traumatic And Non-Traumatic Brain Injury DESCRIPTION:Kimia covered the differences between a traumatic and non-traumatic brain injury\, helping us understand how to interact with others in the brain injury community. \n\n\n\nPrintable Version of Meeting SummaryDownload\n\n\n\nBrain Injury PresentationDownload\n\n\n\nQuick recap\n\n\n\nThe meeting began with informal introductions and discussions among attendees before Kimia introduced herself as the Director of the Stroke Leadership Council and led a session on understanding brain injuries\, distinguishing between traumatic and non-traumatic brain injuries. The group explored the potential link between traumatic brain injuries and subsequent strokes\, sharing personal experiences and discussing the risks associated with chiropractic care. The conversation ended with information about staying connected with the organization and plans for new Slack channels\, along with discussions about managing stress and collecting contact information for participants interested in local services. \n\n\n\nSummary\n\n\n\nStroke Leadership Council Introduction\n\n\n\nThe meeting began with informal introductions and small talk among attendees\, including discussions about travel experiences\, family updates\, and sports. Kimia introduced herself as the Director of the Stroke Leadership Council\, explaining her role in developing content for stroke survivors and caregivers. She described her background in neuroscience and her efforts to bring relevant speakers and healthcare professionals to Young Stroke Group meetings. \n\n\n\nTypes of Brain Injuries Explained\n\n\n\nKimia led a session on understanding brain injuries\, distinguishing between traumatic brain injuries (TBIs) and non-traumatic brain injuries (NTBIs). She explained that TBIs are caused by external forces\, such as falls\, sports injuries\, and assaults\, while NTBIs are caused by internal factors like strokes\, aneurysms\, and infections. Kimia shared statistics on the prevalence of both types of injuries and highlighted the contrast in hospitalization rates between TBIs and strokes\, noting that strokes result in higher hospitalization numbers despite having a lower overall percentage of cases. \n\n\n\nComparing TBI and Stroke Recovery\n\n\n\nKimia and Nicole discussed the differences between traumatic brain injuries (TBIs) and non-TBIs\, particularly strokes\, in terms of recovery rates and outcomes. Kimia explained that mild TBIs typically result in full recovery within three months\, while moderate to severe TBIs may lead to long-term disabilities for up to 30% of survivors. In contrast\, stroke recovery is often longer and more variable\, with the fastest improvements occurring in the first six months. Both conditions can share similar cognitive issues\, emotional effects\, and physical challenges\, but strokes often require a more comprehensive rehabilitation approach involving physical\, speech\, and cognitive therapies. Kimia also mentioned a recent study suggesting that TBIs may be a new risk factor for strokes. \n\n\n\nTBI and Stroke Connection\n\n\n\nThe group discussed the potential link between traumatic brain injuries (TBIs) and subsequent strokes. Kristi shared her experience of suffering a concussion at work\, which led to a stroke three weeks later\, while Susan mentioned a fall she had before her stroke. Max described his stroke occurring immediately after a chiropractic manipulation. Kimia presented data showing that the risk of hemorrhagic stroke is over six times higher after suffering a TBI. The group explored the distinction between TBIs and non-traumatic brain injuries\, with Max noting that even non-traumatic brain injuries can feel traumatic for those experiencing them. \n\n\n\nChiropractic Risks and Stroke Concerns\n\n\n\nThe group discussed the risks associated with chiropractic care\, particularly in relation to brain injuries and strokes. Max shared his experience with a settlement from a chiropractic injury case\, while Nicole and Kimia warned against chiropractic visits after a stroke due to the potential for further trauma. Kimia presented information on the mechanisms by which traumatic brain injuries can lead to strokes\, emphasizing the importance of rehabilitation and support for stroke survivors. The discussion concluded with recommendations for resources\, including the Brain Injury Association of America and the American Stroke Association. \n\n\n\nConnecting and Supporting Organization Members\n\n\n\nKimia presented information about staying connected with the organization through social media and newsletters\, and shared details about a tax-deductible donation option. Susan announced plans to create new Slack channels for speech and language issues\, and physical therapy needs\, with Preeti offering assistance for those within 100-150 miles of Baltimore. Layli discussed her upcoming presentation on managing stress by identifying what is within one’s control. The conversation ended with Susan collecting contact information from participants interested in Preeti’s services. URL:https://circleofrights.org/event/ysg-differences-between-a-traumatic-and-non-traumatic-brain-injury/ LOCATION:Zoom CATEGORIES:Support Groups,Young Stroke Group ATTACH;FMTTYPE=image/jpeg:https://circleofrights.org/wp-content/uploads/2025/06/Brain-Injury-Presentation.jpeg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20250819T193000 DTEND;TZID=America/New_York:20250819T201500 DTSTAMP:20260116T170854Z CREATED:20250629T172908Z LAST-MODIFIED:20260116T170854Z UID:4637-1755631800-1755634500@circleofrights.org SUMMARY:YSG: The Circle of Control DESCRIPTION:Layli (Leili) Hashemi taught about the Circle of Control and practical examples where this chart may help focus energy and set boundaries. 17 attended. \n\n\n\nBelow is a summary of what was discussed at the meeting and a copy of the presentation slides. Young Stroke Group Members can also access a recording. If you’d like to watch the replay\, please ask for the link on the YSG Slack channel. \n\n\n\nPrintable Version of Meeting SummaryDownload\n\n\n\nPresentation Slides (PDF)Download\n\n\n\nQuick recap\n\n\n\nLayli\, a stroke survivor and Berkeley graduate\, shared her personal recovery journey and presented on the concept of “circles of control” as a framework for managing anxiety and stress. The group discussed various coping strategies and personal challenges related to stroke recovery. \n\n\n\nSummary\n\n\n\nGroup conversation\n\n\n\nThe group discussed personal matters and events in members’ lives and offered support to each other. \n\n\n\nEmotional Recovery in Stroke Survivors\n\n\n\nLayli\, a 29-year-old stroke survivor who graduated from Berkeley in 2020\, shared her personal recovery journey and the importance of addressing emotional aspects of recovery. She discussed her ongoing therapies\, including weekly therapy sessions\, physical therapy\, and ceramics\, as well as her efforts to improve her speech and physical abilities. Layli emphasized the need to focus on emotional recovery and proposed discussing strategies to cope with challenges\, aiming to improve overall well-being and recovery rates. \n\n\n\nCircles of Control for Anxiety Management\n\n\n\nLayli presented on the concept of “circles of control\,” a framework for managing anxiety by distinguishing between what is within one’s control\, what can be influenced\, and what is out of one’s control. She explained that focusing on controllable aspects can help reduce stress and improve coping skills. Layli shared examples of what falls into each circle\, emphasizing the importance of preparing for difficult situations and practicing self-care. The discussion included a brief exchange about participants’ familiarity with the concept\, with Michael sharing his experience finding it helpful in a partial hospitalization program. \n\n\n\nCircles of Control and Influence\n\n\n\nLayli shared her experience with a speech impediment and discussed the concept of circles of control\, explaining how recognizing what is within one’s control can help manage stress and focus energy effectively. She emphasized the importance of distinguishing between the circle of influence\, where one can take action\, and the circle of concern\, where one cannot control outcomes. Layli emphasized that within the circle of influence\, one can influence the situations to make it more manageable. She shared a specific example of sharing or disclosing her speech impediment when talking with someone over the phone. This is a great example where she can’t directly control the other person’s ability to understand her\, but she can influence the situation by sharing that information beforehand. Susan shared a personal example of using this concept to cope with worry about her husband’s health\, and Layli answered questions about breaking the cycle of worry and where to learn more about the circles of control concept. \n\n\n\nStroke Recovery Coping Strategies\n\n\n\nThe group discussed coping strategies and personal challenges related to stroke recovery and managing control over different aspects of life. Layli shared her experience with speech impediments and suggested focusing on what can be influenced rather than controlled\, while Rita expressed challenges with dependency after multiple strokes. Nicole highlighted the importance of differentiating between controllable and non-controllable aspects of life\, and the group discussed self-care practices\, including baths and treating oneself to small pleasures. URL:https://circleofrights.org/event/ysg-the-circle-of-control/ LOCATION:Zoom CATEGORIES:Support Groups,Young Stroke Group END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20250826T193000 DTEND;TZID=America/New_York:20250826T201500 DTSTAMP:20260116T170854Z CREATED:20250629T172908Z LAST-MODIFIED:20260116T170854Z UID:4646-1756236600-1756239300@circleofrights.org SUMMARY:YSG: Interview with TBI Survivor Kellee DESCRIPTION:Two weeks prior\, Kimia reviewed different types of brain injury. In this meeting\, Kellee talked about the ramifications of being a TBI survivor. \n\n\n\nBelow is a summary of what was discussed at the meeting. Young Stroke Group Members can also access a recording. If you’d like to watch the replay\, please ask for the link on the YSG Slack channel. \n\n\n\nPrintable Version of Meeting SummaryDownload\n\n\n\nQuick recap\n\n\n\nThe meeting featured an interview with Kellee about her TBI experience and discussed her recovery journey\, including challenges with memory\, organization\, and driving\, while also touching on her career as a special education teacher. \n\n\n\nSummary \n\n\n\nTypes of Brain Injuries Discussed\n\n\n\nSusan led a discussion on brain injuries\, distinguishing between traumatic and non-traumatic brain injuries. She presented statistics on the causes and prevalence of each type\, noting that strokes account for 14% of non-traumatic brain injuries. The group discussed whether to focus on traumatic brain injury survivors or all brain injury survivors for their upcoming project. \n\n\n\n\n\n \n \n \n \n\n\n\n\n \n \n \n \n\n\n\n\nKellee’s TBI Experience Discussion\n\n\n\nThe meeting focused on discussing Kellee’s traumatic brain injury (TBI) caused by a car accident in 2013. Kellee shared details about the accident\, including being hit head-on by a drunk driver\, and the severe physical injuries she sustained\, such as broken bones and a brain bleed. \n\n\n\nCar Breakdown and Rescue Incident\n\n\n\nKellee described an incident where her car was in a major accident. See photos on Slack. After some women found her phone in the car\, they were able to contact her sister and a friend\, who helped coordinate with the police and emergency services. A police officer who arrived at the scene suspected Kellee might be drunk\, but she insisted she was not and had just been at the movies. \n\n\n\nOvercoming Injuries to Return to Teaching\n\n\n\nKellee described her experience of being in a severe accident\, which resulted in multiple injuries including a brain injury\, severe juries\, and a completely turned over right foot and ankle. She spent 18 months in physical therapy and rehab\, during which she regained the use of her arm and shoulder\, and learned to walk again. Despite the challenges\, Kellee returned to teaching in January 2015\, though she continued to face ongoing issues with her left knee that require additional surgery. \n\n\n\nPost-Event Memory and Adaptation\n\n\n\nKellee discussed her experience of feeling disoriented and forgetful after the TBI\, which made daily tasks challenging. Despite these difficulties\, she was able to move back into her own place\, though she continued to struggle with memory and organization\, requiring post-it notes to remind her of daily tasks. Kellee also mentioned that she eventually returned to work. \n\n\n\nSpecial Education Teacher’s TBI Impact\n\n\n\nKellee discussed her experience as a special education teacher managing 25-35 students with individual education plans\, both before and after suffering a TBI. She described how her organization skills were affected\, leading her to use post-it notes and color-coded systems to manage paperwork and avoid losing important documents. \n\n\n\nKellee’s Driving and Health Journey\n\n\n\nKellee discussed her driving history\, revealing that she drove after her TBI but stopped after her stroke. She is currently not driving but hopes to resume once she improves her memory and attention through further evaluation and possibly completes a driver rehabilitation class. Kellee also shared that she experienced migraines for about 6-8 months before her stroke\, which were relieved by Maxalt. \n\n\n\nTBI and Stroke Recovery Journey\n\n\n\nKellee shared her experience of surviving a TBI in 2013 and several strokes\, with the last major stroke occurring in 2020. She discussed her recovery process and the challenges she faced\, including temporary memory and speech issues after the TBI. The group discussed the differences between her experiences post-TBI and post-stroke\, with Kellee noting that the stroke had a more significant impact on her ability to return to work as a special education teacher. \n\n\n\nFollow-Up\n\n\n\nThere will be a follow-up on Slack for those who don’t feel comfortable speaking at the meeting. URL:https://circleofrights.org/event/ysg-interview-with-tbi-survivor-kellee/ LOCATION:Zoom CATEGORIES:Support Groups,Young Stroke Group END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20250902T193000 DTEND;TZID=America/New_York:20250902T201500 DTSTAMP:20260116T170854Z CREATED:20250629T172908Z LAST-MODIFIED:20260116T170854Z UID:4647-1756841400-1756844100@circleofrights.org SUMMARY:YSG: Discussion/Interaction on Language Issues DESCRIPTION:Kimia discussed aphasia\, apraxia\, and dysarthria in preparation for a September 23rd discussion by Dr. Preeti Raghavan on language plasticity. \n\n\n\nBelow is a summary of what was discussed at the meeting. Young Stroke Group Members can also access a recording. If you’d like to watch the replay\, please ask for the link on the YSG Slack channel. \n\n\n\nPrintable Version of Meeting SummaryDownload\n\n\n\nQuick recap\n\n\n\nThe meeting began with technical discussions about Slack communication tools and introductions among team members\, including plans for a post-meeting discussion on the “Young Stroke Group” channel. The main portion focused on Kimia’s presentation about language and communication challenges after strokes\, covering various speech disorders and treatment options\, with several participants sharing their personal experiences. The conversation ended with discussions about future presentations\, funding strategies\, and plans to update member location data to focus on specific states where they have members. \n\n\n\nSummary \n\n\n\nStroke Language Recovery Discussion\n\n\n\nThe meeting began with introductions and casual conversation among participants. Susan announced that after the meeting\, there would be a 10-15 minute discussion on Slack under the “Young Stroke Group” channel for those who wanted to further discuss topics from the meeting. She also mentioned that Shin\, who had difficulty speaking\, should be able to read and participate in the Slack discussion. Susan then introduced the main topic of the meeting\, which was language issues after a stroke\, and explained that this would be a basic introduction\, with more detailed information to be covered in three weeks when they discuss language plasticity. Kimia\, who is in a 5-month precursor program to medical school\, presented on language and communication after a stroke. \n\n\n\nStroke’s Impact on Language and Communication\n\n\n\nKimia discussed the effects of stroke on language and communication\, explaining how different areas of the brain are involved in speech production\, understanding language\, and communication. She highlighted that stroke survivors often experience difficulties with language comprehension\, word retrieval\, and articulation\, with some using word banks or lists to aid communication. Kimia noted that while two-thirds of stroke survivors face communication challenges\, many can improve with therapy. She also touched on auditory processing as a related issue. \n\n\n\nUnderstanding Speech Communication Disorders\n\n\n\nKimia discussed three main communication disorders: aphasia\, apraxia of speech\, and dysarthria. She explained that aphasia affects language comprehension and production\, while apraxia involves difficulty coordinating speech movements despite knowing what to say. Dysarthria\, which Layli identified with\, results from muscle weakness affecting speech clarity. Kimia noted that these disorders often coexist and can be treated with speech and language therapy. \n\n\n\nSpeech Therapy After Stroke Experiences\n\n\n\nThe group discussed experiences with speech therapy and communication challenges after strokes. Nicole shared her journey with speech difficulties\, tracheostomy\, and swallowing issues following a brain stem stroke\, while Danielle highlighted the challenges of finding the right medical terminology to communicate with others. Kimia provided information on various treatments for aphasia\, apraxia\, and dysarthria\, including rhythm therapy\, motor planning exercises\, and the use of assistive devices like picture boards and voice amplifiers. She also shared a video about aphasia and emphasized the importance of patience and practice in improving communication skills. \n\n\n\nSpeech Challenges and Aphasia Discussion\n\n\n\nThe group discussed speech and communication challenges\, with several members sharing experiences and techniques for improving speech muscles. Susan led a discussion about aphasia\, apraxia\, and dysarthria\, with Kristi confirming she has aphasia that affects her ability to write numbers. The conversation ended with plans for future discussions\, including a focus on planning physical aspects of trips and the future of the Young Stroke Group\, with Kimia\, Layli\, and Beth invited to stay for additional planning. URL:https://circleofrights.org/event/ysg-discussion-interaction-on-language-issues/ LOCATION:Zoom CATEGORIES:Support Groups,Young Stroke Group END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20250904T190000 DTEND;TZID=America/New_York:20250904T194500 DTSTAMP:20250906T021833Z CREATED:20250626T204047Z LAST-MODIFIED:20250906T021833Z UID:4398-1757012400-1757015100@circleofrights.org SUMMARY:TSG: Teen Stroke Group Meeting DESCRIPTION:Below is a summary of what was discussed at the meeting. Teen Stroke Group Members can also access a recording. If you’d like to watch the replay\, please ask for the link on the YSG Slack channel. \n\n\n\nPrintable Version of Meeting SummaryDownload\n\n\n\nQuick recap\n\n\n\nThe meeting focused on sharing experiences of stroke survivors and their recovery journeys\, with participants discussing their personal challenges and adaptations to life after significant changes. The group explored various aspects of recovery\, including physical therapy\, speech therapy\, and the importance of using accommodations and assistive technology to support individuals with disabilities. They also discussed educational and social experiences\, including participation in theater and sports programs\, while sharing insights about adapting to new roles and responsibilities within their families and communities. \n\n\n\nSummary\n\n\n\nStroke Recovery and Communication Journey\n\n\n\nLayli shared her experience of having a stroke at age 24\, which led to a two-year intensive recovery period where she couldn’t speak\, eat\, or walk properly. She is now in her fourth or fifth year of recovery\, during which she has been engaging more with the outside world. Layli described her speech as abnormal due to dysarthria\, a condition affecting the coordination of speaking muscles\, and explained that she has undergone speech therapy and used an EMST device to improve her communication skills. \n\n\n\nAdapting to Life After Change\n\n\n\nLayli discussed her personal journey of adapting to life after a significant change\, initially focusing on physical recovery and speech in the first two years. She described the challenges of finding her new rhythm in society\, which was not very accepting of diverse abilities. Layli shared that she had to adapt to a “new normal” by finding alternative activities that provided a sense of fulfillment\, such as just going to the starting point of a trail because she could no longer hike. She emphasized the emotional toll of striving for her old life\, which was no longer feasible\, and her acceptance of her current situation. \n\n\n\nStroke Recovery Journey\n\n\n\nLayli discussed her journey and recovery with Myla\, who had a stroke during her sophomore year of high school. Myla was out of school until March and faced challenges returning to her studies. Layli commended Myla for her resilience and perseverance during her recovery.  \n\n\n\nLayli shared her own experience of stroke recovery\, emphasizing that younger patients often have more potential to regain abilities due to their brain’s capacity to recover\, and encouraged Myla not to give up despite discouraging comments from doctors. Myla\, now in 12th grade\, expressed her determination to continue working on her recovery. \n\n\n\nSupporting Disabilities with Accommodations\n\n\n\nThe group discussed the challenges faced by individuals with cognitive and physical deficits\, particularly in processing information and communicating. Susan and Layli emphasized the importance of using available accommodations\, such as assistive technology\, to support those with disabilities. McKayla mentioned receiving some accommodations at school\, and Layli encouraged her to fully utilize them. The conversation highlighted the need for understanding and support in helping individuals with disabilities thrive academically and professionally. \n\n\n\nClass Discussions and Student Roles\n\n\n\nThe group discussed McKayla’s proximity to the board in class and her father’s help with her math studies\, which she finds challenging. Nate\, another stroke survivor\, shared that as a personal trainer\, he doesn’t use much math in his work\, though he took one statistics class in college. The conversation shifted to Myla’s current courses\, including theater\, choir\, English\, and anatomy\, with Layli expressing admiration for theater classes. Myla mentioned her role as a senior in directing and helping new theater students\, which Susan and Layli praised for its educational value and potential for developing empathetic skills. \n\n\n\nSibling Experiences and Locations\n\n\n\nThe group discussed their experiences with younger siblings\, with McKayla mentioning her two brothers aged 4.5 and 5.5\, and Layli shared that she has experience with children that age since her 5-year-old cousin recently moved in with her. Nate shared that he was at Ocean City\, MD at the beach\, and pursuing an online master’s degree at the University of Maryland. The conversation concluded with a brief discussion about the geographical locations of the participants\, with Layli confirming she was in California\, McKayla mentioned Ohio\, Myla is in Virginia\, and Susan and Nate were in Maryland. \n\n\n\nAdaptive Sports and Community Programs\n\n\n\nThe group discussed adaptive sports and community programs\, with Layli sharing her experiences in adaptive surfing and theater. Susan shared a story about her involvement in adaptive golfing for a child with a disability. The conversation touched on home modifications for accessibility\, including bathtub handrails and shower chairs. The conversation ended with Layli offering her phone number for further questions and support. URL:https://circleofrights.org/event/teen-stroke-group-meeting-4/ LOCATION:Zoom CATEGORIES:Support Groups,Teen Stroke Group END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20250909T193000 DTEND;TZID=America/New_York:20250909T201500 DTSTAMP:20260116T170854Z CREATED:20250629T172908Z LAST-MODIFIED:20260116T170854Z UID:4648-1757446200-1757448900@circleofrights.org SUMMARY:YSG: Planning the Physical Part of Trips; How Did It Go? DESCRIPTION:On April 29\, Nikita discussed “Planning the Physical Part of Trips.” Today’s presentation followed-up on this discussion. \n\n\n\nBelow is a summary of what was discussed at the meeting. Young Stroke Group Members can also access a recording. If you’d like to watch the replay\, please ask for the link on the YSG Slack channel. \n\n\n\nPrintable Version of Meeting SummaryDownload URL:https://circleofrights.org/event/ysg-planning-the-physical-part-of-trips-how-did-it-go/ LOCATION:Zoom CATEGORIES:Support Groups,Young Stroke Group END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20250916T193000 DTEND;TZID=America/New_York:20250916T201500 DTSTAMP:20260116T170854Z CREATED:20250629T172908Z LAST-MODIFIED:20260116T170854Z UID:4649-1758051000-1758053700@circleofrights.org SUMMARY:YSG: Interview with Fellow Stroke Survivor Layli DESCRIPTION:Layli told us about her stroke\, the ramifications\, and her work-arounds. \n\n\n\nBelow is a summary of what was discussed at the meeting. Young Stroke Group Members can also access a recording. If you’d like to watch the replay\, please ask for the link on the YSG Slack channel. \n\n\n\nPrintable Version of Meeting SummaryDownload\n\n\n\nQuick recap\n\n\n\nLayli shared her personal stroke recovery journey and experience as a 29-year-old stroke survivor from California\, including her challenges with socializing and career development. The group discussed Layli’s transition to serving the stroke survivor community and her future career aspirations in neuropsychology. The group discussed upcoming meetings and attendance impacts due to the holiday season. \n\n\n\nSummary\n\n\n\nQuiz for Stroke Survivor Insights\n\n\n\nSusan and Layli discussed a new quiz they created to gauge the feelings of stroke survivors about their connections and hope for recovery. They planned to use the results for future grant applications. The quiz was launched during the meeting\, and participants were asked to answer three questions. After analyzing the initial results\, Susan ended the poll. \n\n\n\nOvercoming Challenges After a Stroke\n\n\n\nLayli shared her experience of having a stroke at age 24\, which left her physically disabled and with speech issues. She described her hospital experience as lacking empathy\, and mentioned that she blacked out the details for 2-3 months. Layli’s current challenges include socializing and establishing a career\, as she feels out of sync with her peers due to the energy required for recovery. She has learned to cope by being intentional with her daily activities\, focusing on one task at a time to avoid feeling depleted. \n\n\n\nCareer Transition to Stroke Advocacy\n\n\n\nLayli discussed her transition from a planned career in medicine to dedicating herself to serving the stroke survivor community\, a change deeply influenced by her own experience. She revealed that living with her mother became necessary after her stroke. Layli also shared that she passed her driving test on the second attempt and now drives with increased awareness and caution\, leaving more space between vehicles and being extra vigilant about potential lane changes. \n\n\n\nStroke Survivor’s Journey and Support\n\n\n\nLayli shared her personal journey of accepting her new reality after a stroke\, emphasizing the importance of not craving the past and finding peace in the present. The group discussed how each stroke survivor’s experience is unique\, and they offered support and encouragement to one another. Layli expressed interest in pursuing a career in neuropsychology\, and the group suggested she consider public speaking\, noting that her deliberate speaking style could actually enhance audience engagement. \n\n\n\nStroke Recovery and Language Plasticity\n\n\n\nThe group discussed the recent interview with Layli\, who shared her stroke recovery journey\, with Michelle expressing appreciation for the vulnerability and authenticity. Susan announced the next meeting will feature Dr. Preeti Raghavan from Johns Hopkins University discussing language plasticity\, and mentioned upcoming holiday scheduling impacts. The group agreed to complete a post-meeting survey to help improve future sessions. URL:https://circleofrights.org/event/ysg-interview-with-fellow-stroke-survivor-layli/ LOCATION:Zoom CATEGORIES:Support Groups,Young Stroke Group END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20250923T193000 DTEND;TZID=America/New_York:20250923T201500 DTSTAMP:20260116T170854Z CREATED:20250629T172908Z LAST-MODIFIED:20260116T170854Z UID:4650-1758655800-1758658500@circleofrights.org SUMMARY:YSG: Language Plasticity DESCRIPTION:Dr. Preeti Raghavan\, a physiatrist from Johns Hopkins University\, discussed language plasticity. \n\n\n\nBelow is a summary of what was discussed at the meeting. Young Stroke Group Members can also access a recording. If you’d like to watch the replay\, please ask for the link on the YSG Slack channel. \n\n\n\nPrintable Version of Meeting SummaryDownload\n\n\n\nBelow is the technical presentation covered during the meeting for reference. \n\n\n\nWhat is AphasiaDownload\n\n\n\nQuick recap\n\n\n\nThe meeting began with introductions and small talk\, including discussions about data extraction formatting and a geographic map showing YSG member distribution. The main portion featured presentations by Dr. Preeti and Erin on aphasia and language issues related to stroke recovery\, including explanations of assessment tools\, brain language dominance\, and potential recovery methods through therapy and exercise. The conversation ended with discussions about speech exercises and supplements\, followed by the setup of a post-survey and Slack channel for community engagement. \n\n\n\nSummary\n\n\n\nStroke Recovery and Language Plasticity\n\n\n\nThe meeting began with Susan introducing a survey about language plasticity and stroke recovery\, which participants completed. Kimia then introduced the main speakers\, Dr. Preeti and Erin\, who are experts in stroke rehabilitation. Erin presented on aphasia and language issues related to brain injury and stroke\, sharing her expertise as a board-certified speech-language pathologist. The presentation was well-received\, and participants were encouraged to ask questions. \n\n\n\nUnderstanding Aphasia Assessment Tools\n\n\n\nErin explained that aphasia is an interruption in language function that primarily affects word retrieval and can impact various communication modalities\, including speaking\, writing\, and understanding. She described the role of a speech therapist as evaluating and assessing language strengths and areas for intervention using formal assessments like the Western Aphasia Battery and the Boston Naming Test. Layli inquired about the use of a specific assessment tool called the Modern Cookie Theft picture task. It is a 90-second picture description task that allows the speech therapist to analyze the patient’s language sample for number of content units\, syllables\, and overall efficiency of language production. Erin clarified that it is typically used initially to diagnose aphasia and may be repeated periodically to monitor progress\, though it can also be used informally for speech samples. \n\n\n\nLanguage Recovery and Brain Wiring\n\n\n\nErin explained that language dominance in the brain is determined by wiring\, noting that left-handed individuals might have language in the right hemisphere. She discussed the potential for aphasia recovery through therapy\, even after a long time post-stroke\, and mentioned a study at Hopkins using low current stimulation for word finding. Preeti added that regular practice and increased blood flow through exercise can improve language functions. \n\n\n\nSpeech Exercises and Supplements Discussion\n\n\n\nThe group discussed speech exercises and supplements. Layli suggested exercising while talking to improve speech\, while Lisa shared that exercise hasn’t helped her speech issues. Josh inquired about creatine’s potential benefits for cognition\, which Preeti said she would research further. The conversation concluded with Layli asking about language plasticity\, which Preeti explained as the brain’s ability to change\, clarifying that neuroplasticity and language plasticity are not separate concepts. \n\n\n\nStroke and Language Recovery Insights\n\n\n\nThe group discussed language and speech impairments following strokes\, with Beth sharing her experience of dysarthria after a cerebellar stroke and asking questions about language processing. Erin explained that while aphasia primarily affects language production\, the cerebellum’s connection to language centers could explain Beth’s observations. The discussion also covered multilingualism after stroke\, with Erin noting that the primary language tends to be more resilient\, and Aaron shared his experience of learning Spanish and Japanese post-stroke\, prompting Erin to discuss the role of neuroplasticity and stroke location in language recovery. \n\n\n\nSpeech Improvement Strategies Discussion\n\n\n\nErin and Preeti discussed strategies for improving speech\, with Erin suggesting that speaking intentionally and engaging muscles through regular conversation can be beneficial. Preeti introduced the idea of high-intensity speech therapy programs and taking acting classes as additional ways to challenge and improve speech skills. \n\n\n\nPost-Survey and Slack Channel Setup\n\n\n\nThe meeting focused on setting up a post-survey and a Slack channel for community engagement. Susan announced the launch of a poll with six questions\, which 20 out of 22 participants answered. She instructed everyone to join the Slack channel for further communication\, with Kimia offering assistance to those without access. Erin and Preeti were asked to monitor the Slack channel for questions from those unable to attend the meeting\, or who could not talk but could read and write. URL:https://circleofrights.org/event/ysg-language-plasticity/ LOCATION:Zoom CATEGORIES:Support Groups,Young Stroke Group END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20250930T193000 DTEND;TZID=America/New_York:20250930T201500 DTSTAMP:20260203T172144Z CREATED:20250629T172908Z LAST-MODIFIED:20260203T172144Z UID:4651-1759260600-1759263300@circleofrights.org SUMMARY:YSG: Involvement in Your Community DESCRIPTION:Layli presented on community engagement strategies for stroke survivors\, highlighting both in-person and virtual opportunities for connection and support. \n\n\n\nBelow is a summary of what was discussed at the meeting. Young Stroke Group Members can also access a recording. If you’d like to watch the replay\, please ask for the link on the YSG Slack channel. \n\n\n\nPrintable Version of Meeting SummaryDownload\n\n\n\nThe presentation from the meeting is included below for reference. \n\n\n\nCommunity Engagement PresentationDownload\n\n\n\nQuick recap\n\n\n\nThe meeting opened with introductions and administrative updates\, including a new rule for electronic hand-raising and information about peer support volunteers. Layli presented on community engagement strategies for stroke survivors\, highlighting both in-person and virtual opportunities for connection and support. The discussion concluded with participants sharing personal experiences of community re-engagement after stroke or disability\, emphasizing the importance of gradual participation and support systems. \n\n\n\nSummary\n\n\n\nCommunity Engagement for Stroke Recovery\n\n\n\nLayli presented on community engagement for stroke survivors\, highlighting its benefits including stress relief\, reduced loneliness\, and brain-stimulating effects that support recovery. She shared three engagement strategies: adaptive sports\, volunteer opportunities\, and joining local groups\, while also emphasizing that community connection can be maintained from home through virtual support groups and other online activities. The presentation concluded with an invitation for Kellee and Shelli to share their experiences with community engagement. \n\n\n\nCommunity Engagement After Disability\n\n\n\nThe group discussed community engagement and volunteering after stroke or disability. Kellee shared her experience volunteering with the American Legion Auxiliary\, which supports veterans and first responders. Shelli described her journey of re-engaging with her community through online Spanish classes\, a volunteer mentoring program\, and teaching Spanish part-time at a private school. The group discussed strategies for re-entering community activities\, including starting small\, asking for accommodations\, and leveraging online opportunities. They agreed on the importance of community support for recovery and suggested that participants could take time to heal and gradually reconnect with their communities. URL:https://circleofrights.org/event/ysg-involvement-in-your-community/ LOCATION:Zoom CATEGORIES:Support Groups,Young Stroke Group END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20251002T190000 DTEND;TZID=America/New_York:20251002T194500 DTSTAMP:20250626T204047Z CREATED:20250626T204047Z LAST-MODIFIED:20250626T204047Z UID:4399-1759431600-1759434300@circleofrights.org SUMMARY:TSG: Teen Stroke Group Meeting DESCRIPTION: URL:https://circleofrights.org/event/teen-stroke-group-meeting-5/ LOCATION:Zoom CATEGORIES:Support Groups,Teen Stroke Group END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20251007T193000 DTEND;TZID=America/New_York:20251007T201500 DTSTAMP:20260203T172144Z CREATED:20250629T172908Z LAST-MODIFIED:20260203T172144Z UID:4652-1759865400-1759868100@circleofrights.org SUMMARY:YSG: Introduction to Physiatry DESCRIPTION:Dr. Martin Lanoff introduced physiatry\, a specialty that looks at the whole body\, working with you to select the best way to treat your disability. 21 attended. \n\n\n\nBelow is a summary of what was discussed at the meeting. Young Stroke Group Members can also access a recording. If you’d like to watch the replay\, please ask for the link on the YSG Slack channel. \n\n\n\nPrintable Version of Meeting SummaryDownload\n\n\n\nThe presentation from the meeting is included below for reference. \n\n\n\nWhat is a Physiatrist? Presented by Dr. Martin Lanoff Download\n\n\n\nQuick recap\n\n\n\nThe meeting began with casual conversation and introductions among participants from various locations\, including discussions about personal experiences and work challenges. The main focus was on learning about Physiatry\, a medical specialty. Dr. Martin Lanoff\, a physiatrist specializing in outpatient musculoskeletal pain and sports\, provided insights into treating conditions like stroke and spinal cord injuries\, while addressing questions about treatments and medications for various medical conditions. He explained the unique role of physiatrists in treating the whole person through a holistic approach to patient care. \n\n\n\nSummary\n\n\n\nUnderstanding Physiatry: A Medical Specialty\n\n\n\nKimia introduced the main topic\, highlighting the purpose of the meeting: to learn about physiatry\, a medical specialty\, with a focus on sharing experiences and knowledge about physiatrists for those who are unfamiliar with the field. Kimia introduced Dr. Lanoff\, a physiatrist\, who specializes in Physical Medicine & Rehabilitation\, treating spine\, nonoperative orthopedic & sports conditions. \n\n\n\nPhysiatry’s Holistic Patient Approach\n\n\n\nMartin discussed the unique role of physiatrists\, emphasizing their holistic approach to patient care by treating the whole person\, not just the physical symptoms. He highlighted the importance of considering psychological\, social\, and environmental factors in patient treatment. Martin also explained the training and certification process for physiatrists\, noting the specialty’s focus on improving patient function\, whether it be simple daily tasks or complex activities like sports. He addressed the challenges of marketing the specialty to the public and the need for referrals from other medical professionals. \n\n\n\nProfitability and Medical Research Insights\n\n\n\nThe discussion centered on the relationship between profitability and medical research. Martin emphasized that most evidence-based medical practices are thoroughly studied regardless of financial incentives. The group explored how alternative treatments and the placebo effect influence patient outcomes. The placebo effect refers to a beneficial health response that occurs when a patient believes they are receiving an effective treatment\, even if the treatment itself has no active medical ingredient. Martin illustrated this point with an anecdote about a patient who experienced improvement using Cannabidiol (CBD)\, a non-psychoactive compound derived from the cannabis plant. \n\n\n\nThe conversation concluded with Roo seeking guidance about off-label medication use for improving motor function. Martin encouraged open dialogue with healthcare providers\, stressing the importance of asking questions and taking an active role in one’s own recovery. Working collaboratively with a medical team\, he noted\, is key to maximizing health outcomes. \n\n\n\nPhysiatrist’s Role in Neurological Treatments\n\n\n\nDr. Martin Lanoff explained the differences between central and peripheral nervous system injuries and the treatments available\, including the use of Botox for spasticity. Shelli asked about treatments for spasticity and nerve pain after a stroke\, and Dr. Lanoff suggested consulting specialists at Shirley Ryan AbilityLab\, a leading rehabilitation facility in Chicago\, IL. Roo inquired about medications for pain and brain healing\, and Dr. Lanoff clarified that while SSRIs can help manage depression and pain\, there is no proven medication to regenerate central nervous system tissue. The conversation ended with Susan thanking Dr. Lanoff for his insights and Kimia offering to address any further questions. URL:https://circleofrights.org/event/ysg-introduction-to-physiatry/ LOCATION:Zoom CATEGORIES:Support Groups,Young Stroke Group END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20251007T210000 DTEND;TZID=America/New_York:20251007T220000 DTSTAMP:20250808T143513Z CREATED:20250808T143512Z LAST-MODIFIED:20250808T143513Z UID:5200-1759870800-1759874400@circleofrights.org SUMMARY:Stroke Leadership Council DESCRIPTION: URL:https://circleofrights.org/event/stroke-leadership-council-2/ LOCATION:Zoom CATEGORIES:Stroke Leadership Council END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20251014T193000 DTEND;TZID=America/New_York:20251014T201500 DTSTAMP:20260203T172144Z CREATED:20250629T172908Z LAST-MODIFIED:20260203T172144Z UID:4653-1760470200-1760472900@circleofrights.org SUMMARY:YSG: Horseback riding DESCRIPTION:Beth and her trainer Gail talked to us about why horseback riding is good for stroke survivors. \n\n\n\nBelow is a summary of what was discussed at the meeting. Young Stroke Group Members can also access a recording. If you’d like to watch the replay\, please ask for the link on the YSG Slack channel. \n\n\n\nPrintable Version of Meeting SummaryView and Download\n\n\n\nQuick recap\n\n\n\nBeth shared her experience with a stroke support group and her newfound interest in horseback riding\, which she discussed with her instructor Gail Todter. The group explored horseback riding as a form of therapy and emotional support\, with Beth and Gail highlighting the benefits for balance and overall well-being. \n\n\n\nSummary\n\n\n\nEmpowering Recovery through Riding\n\n\n\nBeth introduced her horseback riding instructor\, Gail Todter\, and shared her experience of starting horseback riding after a stroke. Beth discussed how riding helped improve her balance and taught her to use her whole body\, rather than relying solely on her legs. She emphasized the importance of finding an activity that brings joy and taps into new abilities\, encouraging others to pursue activities they love. \n\n\n\nJourney to Trust in Riding\n\n\n\nBeth and Gail discussed Beth’s journey with horseback riding\, focusing on overcoming initial fears and developing trust with the horse. Gail emphasized the importance of safety and communication\, while Beth highlighted the unique experiences and lessons gained from riding different horses. They also touched on the role of the horse as a sentient being and the mutual growth experienced during their sessions. \n\n\n\nHorse Therapy for Stroke Recovery\n\n\n\nThe group discussed horseback riding as a form of therapy\, with Beth and Gail sharing their experiences. Beth\, who had no prior horseback riding experience before her stroke\, found it to be beneficial for her balance and overall well-being. Gail explained how horseback riding helps with body tension and relaxation\, particularly for stroke survivors. The group also discussed the importance of finding activities that bring joy and happiness\, even with limitations. URL:https://circleofrights.org/event/ysg-horsebackriding/ LOCATION:Zoom CATEGORIES:Support Groups,Young Stroke Group ATTACH;FMTTYPE=image/jpeg:https://circleofrights.org/wp-content/uploads/2025/06/Horseback-riding-for-therapy-and-emotional-support.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20251021T193000 DTEND;TZID=America/New_York:20251021T201500 DTSTAMP:20260203T172144Z CREATED:20250629T172908Z LAST-MODIFIED:20260203T172144Z UID:4662-1761075000-1761077700@circleofrights.org SUMMARY:YSG: One-Handed Musical Instruments DESCRIPTION:Roo demonstrated music technology and shared his experience with music therapy for improved mood and mental state despite physical limitations. \n\n\n\nBelow is a summary of what was discussed at the meeting. Young Stroke Group Members can also access a recording. If you’d like to watch the replay\, please ask for the link on the YSG Slack channel. \n\n\n\nPrintable Version of Meeting SummaryView and Download\n\n\n\nQuick recap\n\n\n\nRoo demonstrated music technology and shared his experiences with one-handed instruments\, while other members discussed the benefits of music therapy for recovery and emotional well-being. The conversation ended with updates on individual progress\, including Crystal’s request for advice about hand function recovery with instruments. \n\n\n\nSummary\n\n\n\nMusic and Depression Management\n\n\n\nRoo demonstrated how to use GarageBand and other music software to create music using loops and a keyboard\, and shared his experience with one-handed instruments like tongue drums and the ORBA2. He explained how these instruments help him stay present and manage depression by providing a focused activity. The group discussed the benefits of music technology versus traditional instruments\, with Roo emphasizing that creativity is more important than the technology used. Layli asked if playing these instruments has helped Roo’s recovery\, to which he replied that music has been a helpful tool for managing his depression and staying present. \n\n\n\nMusic Therapy for Recovery\n\n\n\nRoo shared his experience with music therapy during his hospitalization\, explaining how it helped improve his mood and mental state despite physical limitations. He described using music and drawing as outlets for expression\, and mentioned that his physical therapist incorporated music to help with rehabilitation exercises. The discussion concluded with Roo adding that music can aid both emotional and physical recovery\, particularly when movements are coordinated with music’s beat. \n\n\n\nHand Function and Recovery Insights\n\n\n\nCrystal\, McKayla’s mom\, sought advice from Roo about McKayla’s efforts to regain hand function for playing the saxophone\, with Rue suggesting visualization techniques and activities like playing cards and using toys from Goodwill for hand strengthening. URL:https://circleofrights.org/event/ysg-one-handed-musical-instruments/ LOCATION:Zoom CATEGORIES:Support Groups,Young Stroke Group END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20251028T193000 DTEND;TZID=America/New_York:20251028T201500 DTSTAMP:20260203T172144Z CREATED:20250629T172908Z LAST-MODIFIED:20260203T172144Z UID:4663-1761679800-1761682500@circleofrights.org SUMMARY:YSG: How Do I Live After a Trauma? DESCRIPTION:Sue led a discussion to prepare for next week’s presentation by Syrita Simmons\, on living after a trauma. 22 attended. \n\n\n\nBelow is a summary of what was discussed at the meeting. Young Stroke Group Members can also access a recording. If you’d like to watch the replay\, please ask for the link on the YSG Slack channel. \n\n\n\nPrintable Version of Meeting SummaryView and Download\n\n\n\nThe presentation outline from the meeting is included below for reference. \n\n\n\nHow Do I Live After a Trauma? OutlineDownload\n\n\n\nQuick recap\n\n\n\nThe meeting began with participants sharing personal experiences and introductions\, including discussions about recent health challenges and upcoming presentations on trauma. The group explored definitions and symptoms of trauma\, including various emotional and physiological responses\, and shared personal experiences related to triggers and coping mechanisms. The session concluded with a discussion about common triggers among stroke survivors and their coping strategies\, followed by announcements about future polls and continued discussions on Slack. \n\n\n\nSummary\n\n\n\nLiving Well Post-Stroke Experience\n\n\n\nSusan and Julie discussed Julie’s experience as a professor of women’s and gender studies at the University of Missouri\, where she teaches disability studies. Julie shared that she has hemiparesis in her left arm and some cognitive difficulties following a stroke two years ago. Despite these challenges\, Julie remains active\, participating in activities like biking and CrossFit. Susan explained the purpose of their group\, which focuses on helping individuals reintegrate into the community after leaving the hospital and initial rehabilitation. Julie expressed that she is already living her desired life post-stroke and does not have specific recovery goals. \n\n\n\nTrauma Meeting and Personal Updates\n\n\n\nSusan discussed plans for upcoming meetings on trauma\, including a session with Sarita Simmons\, LCSW\, who works in Texas with Rehab Without Walls. The group discussed various personal matters\, including Julie’s recent ADHD diagnosis\, Michelle’s sinus infection\, and Josh’s anniversary of his stroke. They also touched on Amber’s recovery from a stroke three months prior and Kellee’s observations about Josh’s appearance after getting a haircut. \n\n\n\nMeeting Agenda and Participant Updates\n\n\n\nThe meeting began with participants sharing personal experiences\, including Josh’s two COVID-related strokes and a pulmonary embolism. Susan introduced the agenda and mentioned that Sarita Simmons would present on trauma next week\, as she was unable to attend this meeting. Susan explained that the meeting would be recorded and asked participants to use the React feature for electronic hand raising if they wanted to speak. The meeting then transitioned to a pre-poll for participants to indicate how much they had learned during the meeting. \n\n\n\nUnderstanding Trauma and Its Symptoms\n\n\n\nThe meeting focused on defining trauma and its symptoms. Susan provided a definition from the Crisis Prevention Institute\, describing trauma as an emotional response to terrible events. Participants discussed various symptoms of trauma\, including flashbacks\, anxiety\, hypervigilance\, depression\, and strained relationships. The group also explored triggers\, which were not explicitly defined in the transcript. \n\n\n\nUnderstanding PTSD Triggers\n\n\n\nThe group discussed the concept of triggers\, particularly in the context of PTSD and trauma. Participants shared personal experiences and definitions\, with Josh explaining that triggers are sensory reminders of past trauma that evoke emotional and physical responses. The discussion included examples from several participants\, including Kellee who described her reaction to pain from a car accident. The conversation concluded with Susan reading a definition from the Crisis Prevention Institute\, which described triggers as signals that lead to emotional\, physiological\, and behavioral responses based on historical traumatic experiences. \n\n\n\nStroke Triggers and Coping Strategies\n\n\n\nThe group discussed triggers and coping mechanisms related to stroke survivors. Susan shared a list of common triggers\, including being touched\, loud noises\, and loss of control. Members shared personal triggers and coping strategies\, such as distraction\, mindfulness\, and using noise-canceling headphones. The group also discussed the challenges of memory loss and the importance of finding personalized coping methods. Susan announced that a post-poll would be launched\, and members were encouraged to continue discussions on Slack. URL:https://circleofrights.org/event/ysg-how-do-i-live-life-after-a-trauma/ LOCATION:Zoom CATEGORIES:Support Groups,Young Stroke Group END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20251104T193000 DTEND;TZID=America/New_York:20251104T201500 DTSTAMP:20260203T172144Z CREATED:20250629T172908Z LAST-MODIFIED:20260203T172144Z UID:4664-1762284600-1762287300@circleofrights.org SUMMARY:YSG: How Do I Live After a Trauma? (Part 2) DESCRIPTION:Syrita Simmons\, a social worker from Rehab Without Walls\, spoke to us on Living After a Trauma. \n\n\n\nBelow is a summary of what was discussed at the meeting and a copy of the presentation. Young Stroke Group Members can also access a recording. If you’d like to watch the replay\, please ask for the link on the YSG Slack channel. \n\n\n\n\n\nThe presentation from the meeting is included below for reference. \n\n\n\nUnderstanding Trauma and Stroke Recovery: Pathways to Healing and Rehabilitation\, Presented by Syrita Simmons\, LCSWDownload\n\n\n\n\n\n\n\nPrintable Version of Meeting SummaryDownload\n\n\n\nQuick recap\n\n\n\nThe meeting featured Syrita Simmons\, a licensed clinical social worker\, who presented on trauma responses and coping strategies\, particularly focusing on managing anxiety and processing emotional aspects after physical recovery. The session concluded with discussions about practical applications of trauma management techniques. \n\n\n\nSummary\n\n\n\nIntroducing Syrita Simmons\, Clinical Therapist\n\n\n\nThe main portion of the meeting introduced Syrita Simmons\, a licensed clinical social worker from Rehab Without Walls\, who specializes in stroke\, brain injury\, spinal cord injury\, amputation\, and long COVID patients. She explained that her company provides in-home therapy services for up to 21 hours per week and also works as a therapist at Rhapsody Counseling. The conversation ended with an invitation for questions before her 20-minute presentation on trauma. \n\n\n\nTrauma Recovery and Coping Strategies\n\n\n\nSyrita discussed coping strategies and the fight-or-flight response\, emphasizing the importance of grounding techniques for managing anxiety\, especially for those who are alone after a traumatic event like a stroke. She explained that trauma can have long-lasting effects on mental\, physical\, and emotional well-being\, and she highlighted the need to recognize and address triggers. The group discussed the concept of fight-or-flight\, with Amber explaining it as a surge of adrenaline that prompts either fighting or fleeing\, and Syrita added that freezing is another common response. \n\n\n\nReframing Boston’s Negative Memories\n\n\n\nSyrita discussed with Josh his negative association with Boston due to a past stroke\, explaining that such reactions are expected after traumatic events. She suggested replacing the negative memory with positive ones through small\, controlled steps\, similar to how Josh reframed September from being associated with his stroke to his marriage. Shelli asked if Josh could reframe his feelings about Boston by doing something enjoyable there\, which Syrita confirmed could be a helpful approach. \n\n\n\nAnxiety Management and Coping Strategies\n\n\n\nSyrita discussed strategies for managing anxiety and trauma\, emphasizing the importance of gradual exposure and coping skills. She advised Erin to take small steps when facing triggering situations\, such as visiting a hairstylist\, and suggested journaling as a way for Julie to process feelings associated with Christmas. Syrita also encouraged Roo to consider celebrating her survival of a stroke as a separate event from her wedding anniversary. The discussion concluded with Syrita offering advice on managing anxiety about future events\, emphasizing the importance of focusing on controllable aspects and creating safety through support systems. \n\n\n\nTrauma and PTSD Coping Strategies\n\n\n\nSyrita presented on the differences between trauma responses\, PTSD\, and anxiety\, explaining how PTSD symptoms persist beyond three months while acute stress disorder symptoms typically fade. She shared various coping strategies including music tasks\, mindfulness exercises\, and breathing techniques like the 4-7-8 method\, noting that these approaches can help restore the mind-body connection and manage both mental and physical symptoms. The group discussed practical applications of these techniques. \n\n\n\nEmotional Recovery After Stroke\n\n\n\nThe meeting focused on a discussion with Syrita\, who provided insights on processing emotional aspects after physical recovery\, particularly in the context of strokes. Participants shared personal experiences and coping mechanisms\, including the use of exercise programs and support groups. The conversation also touched on the importance of celebrating small victories and the potential for continued progress beyond formal therapy. URL:https://circleofrights.org/event/ysg-how-do-i-live-after-a-trauma-part2/ LOCATION:Zoom CATEGORIES:Support Groups,Young Stroke Group ATTACH;FMTTYPE=image/jpeg:https://circleofrights.org/wp-content/uploads/2025/06/Reliving-Trauma-Coping-Grounding-Techniques.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20251106T190000 DTEND;TZID=America/New_York:20251106T194500 DTSTAMP:20250626T204047Z CREATED:20250626T204047Z LAST-MODIFIED:20250626T204047Z UID:4400-1762455600-1762458300@circleofrights.org SUMMARY:TSG: Teen Stroke Group Meeting DESCRIPTION: URL:https://circleofrights.org/event/teen-stroke-group-meeting-6/ LOCATION:Zoom CATEGORIES:Support Groups,Teen Stroke Group END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20251111T193000 DTEND;TZID=America/New_York:20251111T201500 DTSTAMP:20260203T172144Z CREATED:20250629T172908Z LAST-MODIFIED:20260203T172144Z UID:4665-1762889400-1762892100@circleofrights.org SUMMARY:YSG: Different Types of Heart Defects DESCRIPTION:Kimia presented about heart disease and its relationship to stroke. 18 attended. \n\n\n\nBelow is a summary of what was discussed at the meeting. Young Stroke Group Members can also access a recording. If you’d like to watch the replay\, please ask for the link on the YSG Slack channel. \n\n\n\nPrintable Version of Meeting SummaryView and Download\n\n\n\nThe presentation from the meeting is included below for reference. \n\n\n\nHeart Disease Presented by Kimia Dasteh GoliDownload\n\n\n\nQuick recap\n\n\n\nThe meeting focused on a presentation about heart disease and its relationship to stroke\, where participants learned about heart functions\, risk factors\, and diagnostic tools. The group discussed various heart conditions\, shared personal experiences with heart attacks and other conditions\, and explored common risk factors and symptoms. The conversation ended with a discussion on medications and treatments for different heart diseases\, as well as plans for future sessions including a presentation on dysarthria. \n\n\n\nSummary\n\n\n\nHeart Disease and Stroke Connection\n\n\n\nThe meeting focused on a presentation about heart disease and its relation to stroke\, delivered by Kimia. Participants discussed the functions of the heart\, risk factors for heart disease\, and diagnostic tools. Kimia explained that heart disease can lead to stroke and vice versa\, and highlighted the importance of understanding these conditions to prevent them. The group also talked about comorbidities\, which are multiple diseases that can worsen each other\, and shared personal experiences with heart conditions. \n\n\n\nCommon Heart Diseases Discussion\n\n\n\nThe meeting focused on common heart diseases\, with Kimia leading a discussion on coronary artery disease\, myocardial infarction\, and heart arrhythmias. Participants shared personal experiences and symptoms\, including Steven’s account of his 2006 heart attack and Roo’s experience with a heart attack and stroke. The group discussed risk factors such as poor diet\, smoking\, stress\, and genetics. Kimia emphasized the importance of recognizing symptoms like chest pain\, shortness of breath\, and fatigue. The conversation ended with a brief discussion on atrial fibrillation\, highlighting its impact on blood flow and the need for treatment. \n\n\n\nHeart Conditions and Treatment Options\n\n\n\nThe meeting focused on discussing various heart conditions\, medications\, and treatments. Kimia presented on different types of heart diseases\, including congenital heart defects\, heart valve diseases\, and atrial fibrillation. Participants shared their personal experiences with conditions such as AFib\, pulmonary embolism\, and artery dissections. The group discussed medications like Eliquis\, Coumadin\, and Xarelto\, as well as potential long-term side effects. They also explored treatment options\, including lifestyle changes\, medication\, and surgery. The conversation ended with a discussion about bringing in a cardiologist for future sessions and planning for an upcoming presentation on dysarthria by Dr. Faroki Shah. URL:https://circleofrights.org/event/ysg-different-types-of-heart-defects/ LOCATION:Zoom CATEGORIES:Support Groups,Young Stroke Group END:VEVENT END:VCALENDAR