情绪

"I’m so scared. Like REALLY scared. I'm in a great Veterans hospital and I'm doing well they say, but I've got 3 little kids 2, 8 and 11 and a wife I'm very much in love with."

为何重要：exemplifies high freq fear

"I’m sleeping constantly, I don’t want to leave the house, and I’m terrified of social interactions. I feel like a shell of myself."

为何重要：high freq emotional issues

"I'm a single mom and I have no family support. I'm terrified of what will happen to me if I have another stroke."

为何重要：high freq caregiver pain

"I’m terrified I’ll have another one, I overthink every small symptom is me having another stroke"

为何重要：common in batch2

"I’m 22 years old and I had a small stroke around 4 weeks ago... I know no one around who’s going through this or has in the past at my age."

为何重要：young profile isolation

"I hate myself forever and ever for not acting fast enough."

为何重要：caregiver/survivor guilt

"I’m so scared, overwhelmed, and trying to stay strong for my mom and brother. I don’t know what to expect over the next few days."

为何重要：Represents emotional distress

"He doesn’t have insurance, and we are going to do self private pay. Is it possible to negotiate the payment amount?"

为何重要：Financial strain

"My brother is a stroke patient and he has been bedbound in a nursing home for 2 years. He recently got a baclofen pump and needs to start getting physical therapy. The nursing home he is at will not g"

为何重要：Lack of rehab access

"Due to his inability to participate in intensive therapy at the inpatient rehab for 3 hours each day, he has been denied." [caregiver] Context: Explaining why inpatient rehab was not an option | Insi"

为何重要：Insurance denial for rehab

"Feeling hopeless and discouraged. Why is it so difficult to get him the treatment he needs to recover..." [caregiver] Context: Expressing emotional distress over systemic barriers | Insight: Caregive"

为何重要：Emotional toll

"The past two days my father has been super disoriented… talking about leaving for vacation and his daughter getting married.. any insight ? Is this normal, will he snap out of it ?"

为何重要：exemplifies post-stroke disorientation and need for insight on normality

"For me every question you asked was a no. In the hospital I wasn’t scared or miserable or in pain, my mind was just blank. I was so lost and my mind was so empty."

为何重要：highlights caregiver uncertainty about patient's awareness

"she may say the patient in the next bed is the Dr who is the son of her next door neighbour. Who needs to get permission from my brother for treatment"

为何重要：illustrates perseveration and disorientation

"I’m not sure at which point I'd contact my mom's doctor since mood swings were "normal" for her."

为何重要：shows confusion over when to seek help

"Recently, though it seems as though he has regressed. He can still move, but doesn't follow commands. Additionally he seems to have tremors a lot more often. I'd categorize him at Level 2 of the Ranch"

为何重要：demonstrates fluctuating confusion and Rancho scale use

"he’s lucid at times, but quickly shows dementia-type symptoms as he gets tired: confusion, very poor short-term memory, believing circumstances from years/decades ago are still current & delusions tha"

为何重要：captures interpretation struggles with fatigue-related changes

"I’m struggling with this part the most (but also continuing to be encouraging and positive with him while he is in rehab!!!)"

为何重要：reveals caregiver emotional burden

"I’ll take the progress I’ve made in a year! I’m looking forward to even more healing in this upcoming year."

为何重要：illustrates hope from small victories, common pattern

"Ten years post massive stroke, I earned my purple belt in BJJ"

为何重要：shows late recovery possible, counters timelines

"I’m so happy to see you all have a support system. It’s so important to be with others who have had a stroke can relate to what you’re going through."

为何重要：highlights emotional support need

"I had a stroke in Jan 2018. This is a speech I gave at the local Heart and Stroke info session. I'm happy to answer any further questions."

为何重要：offers peer connection

"My current belief is that I (and we) will make very gradual improvement over a course of three to ten years."

为何重要：challenges short timelines

"You have to set your hopes high."

为何重要：encourages persistence

"Just recently, I learned he had a NIH Stroke score of 26."

为何重要：relates to uncertainty

"I really just wanted to see someone else sweating it out and grinding for the process- the hard part. Not just the reward at the end."

为何重要：emphasizes need for realistic peer stories

"I’m killing myself to keep his life going. Risking my job, putting my schooling aside, my fiancé although a saint, I can tell its effecting her as well. Yet he complains the second he sees me."

为何重要：illustrates family conflicts and burnout

"Everyone thinks I’ve made an amazing recovery because my deficits are largely invisible but I struggle with the pain and dysfunction every day"

为何重要：highlights lack of recognition

"My insurance company will only pay for 3 visits a year, is there anything I can tell them that can help me out with this?"

为何重要：systemic insurance issues

"I miss my speech😅 I miss everything before the stroke."

为何重要：grief and identity loss

"He’s the type that would rather pay for machines and acupuncture to help him rather than doing OT/PT. he doesn’t listen to the OT/PT, lies to them about doing exercises and wants to quit it entirely "

为何重要：resistance to rehab

"I'm just so incredibly frustrated that I have to recover from this again."

为何重要：stalled progress

"I'm starting to lose hope that my symptoms will ever go away"

为何重要：losing hope in chronic stage

"I’m so happy for you and so jealous of you My affected hand is no where near near this open after 3 years of recovering and I’m so depressed."

研究意义：Emotional complexity of recovery—hope mixed with frustration when comparing progress

"I’m 2 years post-stroke. The spasticity in my right side is so annoying. My leg is heavy. My arm is weak. And my right lat muscle in my ribcage is always tight."

研究意义：Chronic spasticity remains a major pain point years post-stroke

"My stroke is taking a huge toll on my wife physically and mentally."

研究意义：Caregiver strain is a common, under-discussed issue

"I'm more afraid of falling than anything."

研究意义：Fear of falling is pervasive

"No one sees my effort, only my deficits."

研究意义：Invisible effort leads to feeling misunderstood

"My old mom died at the hospital"

研究意义：Illustrates ambiguous grief for the pre-stroke self.

"I caused my dad to have a stroke"

研究意义：Common caregiver guilt over delayed response.

"Everyone's abandoned me"

研究意义：Social isolation post-stroke.

"My husband has changed since his stroke.."

研究意义：Personality changes strain relationships.

"I miss my old self everyday"

研究意义：Loss of identity.

"I’ll take the progress I’ve made in a year! I’m looking forward to even more healing in this upcoming year."

研究意义：Gratitude for incremental progress on anniversary

"I’m so happy to see you all have a support system. It’s so important to be with others who have had a stroke can relate to what you’re going through."

研究意义：Value of peer support

"I’ll take the progress I’ve made in a year! I’m looking forward to even more healing in this upcoming year."

研究意义：Hopeful outlook

"Living with post stroke fatigue"

研究意义：Explicitly names the symptom as a central theme

"I’m so tired just watching this video"

研究意义：Even observing activity causes fatigue

"It’s been a long 6 months and a long week this week... I’m exhausted and heart weary right now."

研究意义：Caregiver emotional and physical exhaustion

"When you experience a stroke, you find out who your REAL friends and family are."

研究意义：Reveals relational losses compounding recovery challenges

"I just wish people recognized how hard im trying alittle bit more often"

研究意义：Highlights emotional toll of feeling unseen in recovery efforts

"We look ok on the outside for the most part but it rocked my mental state. The ptsd alone can be a real bear."

研究意义：Illustrates disconnect between appearance and internal struggle

"It's incredibly frustrating and depressing for me."

研究意义：Persistent mobility struggles cause ongoing depression

"I’m 19 and suffered my stroke last year. There isn’t a day that goes by where I don’t grieve my old life and future I could’ve had. It’s made me extremely depressed."

研究意义：Grief over lost future leads to depression in young survivors

"Im a bit depressed right here"

研究意义：Specific cognitive symptoms like amusia cause emotional distress

"After 1 year being depressed from my stroke and sitting around letting my hemiparesis get to me I've gained a lot of weight"

研究意义：Depression leads to inactivity worsening physical condition

"its depressing"

研究意义：Caregivers experience depression from patient's identity loss

"I coloured it washed it and styled it with one hand and I am so proud."

研究意义：Highlights the significance of regaining personal grooming independence as a meaningful recovery milestone

"I'm so proud of how well she's doing."

研究意义：Demonstrates the emotional value of peer progress stories

"I stayed up all day and used the toilet all day I'm proud of myself and have therapy tomorrow afternoon."

研究意义：Indicates that basic activities like remaining awake and using the toilet are significant achievements

"I can read a gain!🎊"

研究意义：Highlights reading as a meaningful milestone in cognitive and visual recovery

"he is very sad what his capabilities are."

研究意义：Highlights emotional toll of functional deficits

"My dad had a stroke almost a month ago. He is still unable to swallow 😥any uplifting stories on stroke Vic regaining swallowing?"

研究意义：Reveals emotional distress and desire for reassurance

"I dunno my father and my siblings don't seem to be impressed in any my progress after 7 months I can keep my left hand like this I can now at least wash the dishes those simple chores."

研究意义：The poster feels emotionally unsupported by close family despite tangible functional gains.

"BUT my aphasia is terrible. Truly terrible. And it’s not improving. It’s so hard to make friends/connections."

研究意义：Highlights the emotional toll of aphasia even when other functions have recovered

"She’s getting yogurt, mashed potatoes, and pudding down fine but I can tell she is discouraged and is already tired of eating the same 3 things."

研究意义：Physical limitations intersect with emotional distress

"I still have huge issues and get discouraged. I’m hoping some longer term stroke survivors can reassure more that as long as I keep working, progress is attainable."

研究意义：Emotional toll of slow progress

"It just doesn’t seem like she has that same fight in her now so it’s discouraging."

研究意义：Caregiver frustration with behavioral changes

"I am feeling so discouraged."

研究意义：Setbacks undermine emotional well-being

"Getting discouraged."

研究意义：Common early emotional struggle

"It's discouraging when I hear people saying there 5 6 or even 7 years post and still don't have mobility in thier hand."

研究意义：Fear of permanent deficits

"Im just concerned because i noticed my moms pupils are dilated for over 2 weeks now and if you have love ones who suffer stroke check their eyes if they are also dilated"

研究意义：The caregiver is observing a specific physical symptom in their mother and seeking information, indicating concern about potential complications or lack of awareness around this symptom.

"he lives alone and that is concerning me because of course, i'm not a doctor, i can't be there for him because i live in another country"

研究意义：Highlights the emotional burden and helplessness of long-distance caregiving

"My wife (34yo) survived a haemorrhagic stroke 7 months ago. She’s now able to get much of the movements in foot. But while walking, her toes get clawed and its too painful. Wanted to know what are the ways to overcome this?"

研究意义：Highlights a common mobility complication during stroke recovery that causes pain and affects gait

"Skipping out on PT is NOT a good idea, at all. I'd push for her going as hard as I could."

研究意义：Strong consensus that discontinuing PT post-stroke is risky

"I feel guilty because I know I’m lucky to be here and able to live a mostly normal life, if you look at me you would not think I went through this."

研究意义：Highlights the hidden nature of post-stroke challenges and survivor's guilt

"Like all the good things you could’ve said to make your love one happy but now doesnt even remember me you it feels like its too late to say how much care about them theres alot of regrets"

研究意义：Reveals deep emotional pain tied to lost connection and unspoken affection due to cognitive impairment

"I feel like I didn’t do enough. Like I failed her. And that guilt is eating me alive from the inside."

研究意义：Reveals intense caregiver guilt despite likely doing all they could during a traumatic end-of-life experience.

"I feel guilty as a daughter. I never had a great relationship with my dad growing up and there was a time where I was 16 and he ignored me for a year because I had a relationship."

研究意义：Past relational trauma intensifies caregiver guilt during current health crisis

"I can't help but feel that of all the..."

研究意义：The poster feels personally responsible despite no evidence suggesting prevention was possible.

"I was 33 years old, I played rugby all my life, and I carried weight but still was in decent cardio shape."

研究意义：Highlights unexpected stroke in young, fit individuals

"I’m feel pretty hopeless about all her competing health conditions and the likelihood of another stroke."

研究意义：Anxiety from conflicting treatment risks

"Had a stroke Jan 2024. Paralysis left hand side... That totally wrecked my headspace which I have not recovered from."

研究意义：Dismissive professional feedback impacts mental health

"All this time, the only thing (barely) keeping me going is hope. But it is ripped away."

研究意义：Loss of hope as primary emotional anchor

"Feeling quite hopeless as unable to use a fork in left hand post stroke"

研究意义：Specific deficits exacerbate hopelessness

"I’m desperate. I cannot live the rest of my life without my leftie."

研究意义：Reveals deep emotional attachment to regaining hand function and fear of permanent loss

"I’m currently homeless and lost all motivation to get better."

研究意义：Homelessness is a major barrier to recovery and impacts motivation

"NEVER MIND! It turns out not to be a stroke but ALS. I'll probably be dead by the end of the year. Oh well!"

研究意义：Highlights diagnostic uncertainty and emotional whiplash in serious neurological conditions

"2 years ago today I woke up half paralyzed, today I’m thriving and I want to share something I exciting with all of you."

研究意义：Highlights significant physical recovery and emotional resilience two years post-stroke

"One year tomorrow and I'm starting a big new rehab program paid for by the starter I live in I'm excited anyone done CTN here in Phoenix before"

研究意义：The poster is hopeful and motivated about continuing recovery a full year post-stroke, indicating they are in the chronic stage.

"I was curious if anyone else had the SCUBA procedure?"

研究意义：Indicates a desire to compare recovery trajectories and outcomes with peers who had the same rare procedure.

"I’m curious how this recovery differs from more traditional treatments."

研究意义：Reveals uncertainty about what to expect during recovery due to the novelty of the treatment.

"Really curious to what people think about these new developments? Would anyone try this once there's FDA approval?"

研究意义：Shows openness to novel medical interventions beyond traditional speech therapy and interest in community perspectives.

"I tend to drool a bit which can be embarrassing since I work in customer service."

研究意义：Embarrassment in customer service due to drooling

"After your guys stroke did you guys notice you guys smell bad? Like you have bad BO. Before my stroke I use to smell great now I notice I smell a little bad. And yes I do shower twice a day."

研究意义：Reveals embarrassment and confusion about a physical change not commonly discussed

"I was lying under my hospital bed in a puddle of urine, and blood bleeding from a cut on my head from a fall at 3 AM and the nurse finally came in and started scolding me like I was a child."

研究意义：Highlights dehumanizing treatment and loss of dignity in acute care settings

"I also have sensation issues on the left side of my mouth, mostly my lip and chin area so if I’m eating I usually can’t tell if I have food on mouth or face."

研究意义：Sensory deficits in the face contribute to social anxiety and self-care challenges

"Feel helpless in being able to contribute beyond just being there."

研究意义：Reveals significant caregiver emotional burden and need for actionable support

"I'm a nurse so I know what the outcome of a stroke this bad is."

研究意义：Highlights the emotional burden of medical knowledge during a personal crisis

"They make you think if they aren’t recovered by 3 months that there’s no hope so I have felt so much urgency. Now I’m realizing that she will recover on her own timeline and there is no time limit for recovery."

研究意义：Reveals a common misconception that causes unnecessary stress for families

"I fully sobbed and danced around her bed. She also has been flipping me and my sister off whenever we're annoying her"

研究意义：Shows how small neurological signs are deeply meaningful to caregivers

"Doctors want me to get his medication (that I can’t afford) before they release him. Is this normal? I can’t afford to keep him in the hospital."

研究意义：Reveals systemic pressure on caregivers to cover medication costs upfront, creating discharge delays and emotional distress.

"I had a terror unlike anything I could have ever imagined a human could bear. And it stayed that way. For five weeks."

研究意义：Reveals prolonged psychological trauma due to inadequate post-stabilization care

"i know it seems trivial but im getting anxiety just thinking about eating, im scared i will choke."

研究意义：Reveals that swallowing issues can cause significant emotional distress even when not physically severe

"She’s had a stroke so her brain‘s gone through a little bit of chaos and trauma it likes to sleep sleep is healing."

研究意义：Sleep is a recognized part of post-stroke recovery

"It is very common to be fatigued after a stroke. It actually is a medical diagnosis: “post stroke fatigue”."

研究意义：Post-stroke fatigue is clinically recognized

"What I can say is it does get better with time... one thing that helps is doing things slowly, eating slowly and less fizzy drinks for the hiccups and kinda taking in the surroundings and standing up slowly for the dizziness."

研究意义：Symptoms may improve gradually with time and behavioral adjustments

"I'm so happy.my wife wound the weed eater string correctly and started the thing and weed eated the yard and did the choke correctly I was surprised but great full I'm too fucked up to walk I in the country and terrain is rough."

研究意义：Highlights reliance on a partner for physical tasks due to severe mobility limitations post-stroke

"It is hard to watch someone else do the things you used to do before the stroke. That you can’t even do at all now."

研究意义：Reveals emotional impact of lost independence and role changes after stroke

"Use a cane. They really help in rugged terrain. Plus they have ones with built in seats so you can rest when needed."

研究意义：Indicates awareness of adaptive equipment that addresses both balance and fatigue

"It’s honestly very surprising. I always have to remind myself that it’s my leg and not my dead Siamese twin. Feels like I’m dragging 50 pound of weight alongside myself ."

研究意义：Highlights the disorienting disconnect between body ownership and motor control post-stroke

"They say exercise to make it better but exercise makes it feel much heavier afterwards. I don’t understand."

研究意义：Reveals a gap between clinical recommendations and patient experience during recovery

"My leg ‘works’, but has bad proprioception. My leg was ‘stuck’ under the Christmas dining table. I had no clue where it ‘was’, and thought I was kicking people!"

研究意义：Shows that heaviness may be linked to sensory deficits, not just muscle weakness

"And no one prepares you for it or tells you what to expect in your stroke journey."

研究意义：Underscores a systemic lack of patient education around common but non-obvious stroke effects

"My medical bills from my stroke were 1.1 million. That’s 3 hospitals; two states, a helicopter ride that I’m pissed I don’t remember., and 26 days In hospital. It’s absolutely ridiculous to me that saving my life cost so much."

研究意义：Reveals shock and frustration at the extreme cost of life-saving acute stroke care in the U.S.

"United Health Care denies anything & everything they can!"

研究意义：Indicates systemic issues with certain insurers denying necessary follow-up diagnostics

"I've never seen a bill from my hospital stays... thank you Medicare 💕"

研究意义：Suggests Medicare provides more predictable and less burdensome billing for major health events

"How can I help him so he is motivated to try and communicate with him? What can I do? I feel extremely powerless."

研究意义：Highlights the caregiver's sense of helplessness and urgent need for actionable strategies to support communication

"The most progress happens in the first 6 months and it’s going to feel like it’s taking forever but you need to be patient. His brain just went through something really traumatic"

研究意义：Emphasizes the importance of patience and realistic expectations during early recovery

"Language Therapy Lite is the app my dad uses. I put music on to listen to with him also"

研究意义：Indicates use of digital therapy tools and non-verbal stimulation (music) as part of home/hospital support

"I’ve become much more irritable and easily agitated since I had my stroke a year and a half ago."

研究意义：Highlights a clear shift in emotional regulation post-stroke, distinct from baseline temperament.

"I think it’s really easy to just say stop being a fn bitch. I think this is some thing."

研究意义：Indicates frustration with lack of understanding from others about neurological causes of behavior changes.

"I definitely want to just do I mean like recognize my emotions and just not react and keep my mouth shut for the sake of not lashing out. But when I don’t respond to react that I don’t express my feelings and that gets to me overtime"

研究意义：Reveals internal conflict between suppressing reactions and needing emotional release.

"Does anybody else just feel awkward about birthdays? Everyone is so excited about wishing you happy birthday, and I’m just like, I’m so glad to be alive and experiencing this time with my kiddos and going out to eat with my husband who was/is my caregiver."

研究意义：Reveals tension between societal expectations of birthday joy and personal, trauma-informed gratitude

"I treat milestone days: birthdays, major holidays, and stroke anniversaries [...] as points of reflection and celebration."

研究意义：Shows active cognitive reframing as a coping strategy

"I had my stroke just weeks after my 50th birthday. I'm so grateful I get to see 51 and beyond."

研究意义：Highlights how near-death experiences shift perception of aging milestones

"I must admit that I don't enjoy my birthday anymore. it's just reminds me there is less time until I'm in the grave."

研究意义：Illustrates how disability can accelerate subjective sense of aging and mortality

"I was going to do this, but watching my right hand do some movement’s is so incredibly boring."

研究意义：The user is struggling with boredom as a barrier to consistent therapy practice.

"If you look at something else, i.e. TV, you will loose the actual benefit of the mirror, which is tricking your brain, try some audio (books, podcasts, music)."

研究意义：Audio-based entertainment is seen as compatible with maintaining the visual focus required for mirror therapy to be effective.

"Sometimes instead of sitting there and laboriously doing something over and over it's better to do a little, go away, do something amusing, come back, and do it again for a short time."

研究意义：Short, frequent sessions interspersed with enjoyable breaks may improve adherence and reduce frustration.

"I get jealous of other people who complain about their normal life. Normal life being them going to office, school or college. I live a very unpredictable and abnormal life that it hurts to see other people complain about small things."

研究意义：Highlights the emotional toll of caregiving and perceived invisibility of their struggle compared to 'ordinary' problems

"They don't understand all I need is someone to do what I do (all the caregiving) in frequent rotation with me but no one from the family comes more then a few weeks maybe 2x a year"

研究意义：Reveals unmet need for consistent, trained respite care from family members

"It's said it takes a village to raise a child, well a disabled person is often more work then a child... they grow more dependent....."

研究意义：Underscores the intensity and long-term dependency in post-stroke care, exceeding typical childcare demands

"Health insurance mainly gives mental help at home no physical help or help me to pay for the physical help."

研究意义：Identifies systemic barrier: lack of coverage for essential hands-on physical caregiving support

"It will take lots of physical therapy though, but hold out hope, it sounds like she can recover it just will take some time. For me, going from a wheelchair to nothing at all took about 4 years, don’t give up hope!!"

研究意义：Recovery can be slow but substantial, even over multiple years

"The fact that her toes are moving is a good sign."

研究意义：Minimal voluntary movement indicates potential for further neurological recovery

"Stroke recovery is a very long process. Every stroke is different and everybody recovers different."

研究意义：Variability in stroke outcomes makes early prognosis uncertain

"the first 3 months after a stroke is a crucial time to do rehab. In the next 3 months, the recovery is slower but it’s quite important to keep up with intense rehab."

研究意义：Early and sustained therapy is critical for maximizing recovery

"She is in a tube her right side of her body is paralyzed. But what gives me hope is that she is moving her hands, squeezing our hands when we ask her questions, she looks at my phone when I try to show her pictures and looks at me as well."

研究意义：Indicates awareness despite physical impairment, suggesting potential for cognitive preservation

"Yes, she could recover. I'm not a doctor, but I had a subarachnoid hemorrhage several years ago."

研究意义：Peer reassurance based on lived experience offers emotional support when medical uncertainty exists

"she had a second stroke the night i wrote this (months ago) she passed away 11/14/25."

研究意义：Highlights the unpredictable and severe trajectory possible with hemorrhagic stroke

"I was lying under my hospital bed in a puddle of urine, and blood bleeding from a cut on my head from a fall at 3 AM and the nurse finally came in and started scolding me like I was a child."

研究意义：Highlights dehumanizing treatment and loss of dignity in acute care settings

"Knowing that no 1 would lift a finger to help me during a crisis has really messed with my head."

研究意义：Reveals lasting psychological impact of social abandonment during medical emergency

"I was not able to say my 10 year old daughters name, I could say fuck just fine, but not her name."

研究意义：Illustrates the specific heartbreak of language loss affecting intimate relationships

"They just kept yelling and laughing at me, it was awful. They ended up cutting my earrings off of me and laughing when they fell on the floor."

研究意义：Shows how communication barriers lead to degrading and traumatic medical encounters