Your first steps, one at a time.
A practical roadmap for survivors, families, and caregivers
A stroke can change movement, speech, swallowing, thinking, vision, emotions, energy, work, relationships, and everyday routines. Some effects are obvious; others may not appear until a person tries to manage medications, cook a meal, return to work, or spend a full day at home. Recovery is different for every person and is rarely a straight line.
This guide explains what may happen from the hospital through the early months of recovery. It includes questions to ask, checklists to complete, and links to trusted resources. It is designed to complement—not replace—the individualized recommendations of your medical and rehabilitation teams.
1. Know what to expect in the hospital
2. Understand what happened and how the stroke may affect daily life
3. Choose the right rehabilitation setting and goals
4. Prepare for discharge and make the home safer
5. Build a manageable recovery routine at home
6. Manage medications, follow-up care, and prevention
7. Address communication, cognition, mood, fatigue, and relationships
8. Organize caregiving, benefits, transportation, and community support
The first hours and days focus on identifying the type and cause of the stroke, protecting the brain, preventing complications, and deciding what care is needed next. The pace can feel fast, and different specialists may visit at different times. Ask the team to identify one point person—often a nurse, physician, case manager, or social worker—who can help your family understand the plan.
Brain imaging, usually a CT scan and sometimes an MRI, to identify bleeding or an area of injury.
Heart and blood-vessel testing, which may include an ECG, heart monitoring, echocardiogram, or imaging of the arteries in the head and neck.
Blood tests to evaluate glucose, cholesterol, clotting, infection, kidney function, and other possible contributors.
Repeated neurological checks to monitor alertness, strength, speech, vision, sensation, and coordination.
A swallowing screen before food, drinks, or pills are given by mouth. A more detailed swallowing evaluation may follow.
Early physical, occupational, and speech-language evaluations when medically appropriate.
Treatment of blood pressure, blood sugar, fever, blood clots, heart rhythm problems, or other medical risks.
Discussion of the next level of care: inpatient rehabilitation, skilled nursing rehabilitation, home health, outpatient therapy, or another setting.
Was the stroke ischemic, hemorrhagic, or a transient ischemic attack (TIA)?
Which part of the brain was affected, and what changes might that cause?
Do you know what caused the stroke? If not, what tests or monitoring are still needed?
What treatments were given, and are there restrictions related to those treatments?
Is swallowing safe? Are there diet, liquid, or medication-form restrictions?
What symptoms or complications are you monitoring right now?
Who is coordinating discharge planning, insurance authorization, and referrals?
Can I receive written information in my preferred language and in an accessible format?
Trusted resource: American Stroke Association: About Stroke — Overview of stroke types, effects, and treatment.
Trusted resource: American Stroke Association Stroke Discharge Checklist — A printable checklist for patients and caregivers.
Stroke affects people differently depending on the location and extent of brain injury, health before the stroke, complications, and access to rehabilitation and support. Ask the team to explain both the diagnosis and the functional effects. It is often more useful to know what a person can safely do than to focus only on the name or size of the stroke.
Movement: weakness, paralysis, poor coordination, stiffness, spasticity, tremor, or difficulty using one side.
Balance and walking: dizziness, ataxia, falls, reduced endurance, or need for a cane, walker, brace, or wheelchair.
Communication: aphasia, slurred speech, apraxia of speech, reading or writing difficulty.
Swallowing: coughing, wet voice, food sticking, prolonged meals, dehydration, or aspiration risk.
Thinking: reduced attention, memory, processing speed, planning, organization, judgment, or self-awareness.
Vision and perception: visual field loss, double vision, depth-perception problems, or one-sided neglect.
Sensation and pain: numbness, altered temperature sense, tingling, shoulder pain, or central post-stroke pain.
Emotion and behavior: depression, anxiety, irritability, apathy, impulsivity, grief, emotional lability, or pseudobulbar affect.
Energy and sleep: post-stroke fatigue, insomnia, sleep apnea, or reduced tolerance for busy environments.
Can the person safely get out of bed, transfer, walk, and use the bathroom?
Can the person understand instructions, make needs known, and call for help?
Can the person remember and manage medications or appointments?
Is there neglect, visual loss, poor insight, or impulsivity that changes safety?
How much physical assistance or supervision is needed, and for which tasks?
Are there activities the person should not attempt alone?
What changes should prompt an urgent call or emergency evaluation?
What is likely to improve with treatment, practice, equipment, or compensation?
Trusted resource: American Stroke Association: Changes Caused by Stroke — Plain-language overview of common changes after stroke.
Trusted resource: American Stroke Association Stroke Glossary — Definitions of common stroke-related terms.
Rehabilitation should begin as soon as the person is medically stable and able to participate. The best setting depends on medical needs, endurance, level of assistance, cognitive and communication needs, insurance coverage, caregiver capacity, and the services available locally. “Going home” is not automatically the best or safest option, and a more intensive setting is not always medically appropriate.
| Setting | Often appropriate when | What to clarify |
|---|---|---|
| Inpatient rehabilitation facility | The person needs coordinated medical oversight and intensive PT, OT, and/or speech therapy and can participate in a structured program. | Daily therapy expectations, physician coverage, stroke expertise, family training, anticipated length of stay, and discharge planning. |
| Skilled nursing facility | The person needs nursing and rehabilitation but cannot yet tolerate or qualify for an intensive inpatient program. | Actual therapy frequency, staffing, stroke experience, medical coverage, equipment, and how progress is measured. |
| Home health | Leaving home is difficult and skilled nursing or therapy is needed in the home. | Which disciplines will visit, frequency, start date, homebound requirements, caregiver training, and transition to outpatient care. |
| Outpatient rehabilitation | The person can safely travel to appointments and benefit from clinic-based therapy. | Stroke specialization, intensity, transportation, insurance visit limits, home program, and access to all needed disciplines. |
| Community or independent program | Skilled therapy is no longer required for every session, but ongoing exercise, communication practice, or peer support is useful. | Safety screening, staff qualifications, accessibility, caregiver role, and how the program coordinates with clinicians. |
Does the program regularly treat people with stroke and the specific problems present here?
Which disciplines are available: rehabilitation medicine, nursing, PT, OT, speech-language pathology, psychology, neuropsychology, social work, recreation therapy, nutrition, and orthotics?
How many days and hours of therapy are typically provided?
How are fatigue, medical complexity, aphasia, or cognitive impairment accommodated?
How will goals be chosen with the survivor and family?
How will progress be measured and communicated?
Will caregivers receive hands-on training before discharge?
What happens if insurance denies the recommended level of care?
How early does planning begin for the next transition?
Trusted resource: American Stroke Association: Choosing the Right Stroke Rehab Facility — Questions and considerations for post-hospital rehabilitation.
Trusted resource: Stroke Rehabilitation Planning List — Printable questions for families and rehabilitation teams.
Discharge is a transfer of responsibility, not the end of care. Before leaving the hospital or rehabilitation facility, the survivor and caregiver should understand the daily routine, equipment, medications, appointments, warning signs, and who to contact when something goes wrong. A person may look capable in a structured facility but struggle when the environment becomes less predictable at home.
Getting into and out of bed, a chair, the toilet, shower, and vehicle.
Walking on the surfaces and stairs that exist at home.
Using the wheelchair, walker, cane, AFO, transfer device, or lift correctly.
Dressing, bathing, toileting, grooming, and managing continence.
Preparing and eating food using the prescribed swallowing recommendations.
Managing medications, appointments, blood pressure checks, and emergency contacts.
Communicating needs when speech or language is limited.
What to do after a fall and when to seek emergency care.
Where exactly are we going next, and when will services begin?
Who is the main contact if home health or outpatient therapy does not call?
What level of assistance and supervision is needed during the day and at night?
What diet, liquid consistency, swallowing strategies, or pill modifications are required?
Which equipment must be delivered before arrival home?
Who will teach the caregiver transfers, mobility, feeding, medication, or equipment use?
What symptoms require 911, an urgent call, or a routine appointment?
What appointments and tests are already scheduled?
What transportation plan will be used for follow-up care?
What is the backup plan if the caregiver becomes ill or unavailable?
Trusted resource: American Stroke Association: Living at Home After Stroke — Factors to consider when deciding whether home is appropriate.
Trusted resource: American Stroke Association: Home Modifications — Home safety and accessibility guidance.
Trusted resource: Family Caregiver Alliance: Hospital Discharge Planning — Detailed questions for discharge to home or another facility.
Home recovery works best when daily life supports the rehabilitation plan without turning every hour into therapy. A useful routine balances prescribed practice, meaningful activity, rest, nutrition, sleep, appointments, and social connection. More activity is not always better if it causes unsafe movement, prolonged exhaustion, pain, or reduced participation the next day.
A consistent wake time, medication routine, meals, and bedtime.
Short periods of therapist-recommended practice distributed through the day.
Participation in real activities such as dressing, meal preparation, household tasks, conversation, or hobbies.
Planned rest before severe fatigue develops.
Safe physical activity at the level recommended by the medical and rehabilitation teams.
Time outdoors, social contact, or another activity connected to identity and quality of life.
A simple way to track symptoms, falls, blood pressure, practice, questions, and progress.
Walk safely from the bedroom to the bathroom at night using the recommended device.
Use a communication strategy to order a meal or make a medical appointment.
Prepare one simple lunch with setup assistance.
Tolerate a family gathering for 45 minutes with planned rest and reduced noise.
Manage a morning medication routine using a pill organizer and written checklist.
Return to a modified hobby, volunteer role, faith activity, or community program.
New or worsening weakness, speech, vision, balance, or confusion—call 911 for sudden symptoms.
Repeated falls, a significant fall, or growing fear of moving.
Coughing or choking with meals, recurrent chest infections, dehydration, or weight loss.
New severe pain, swelling, skin breakdown, or equipment-related injury.
Major decline in participation, sleep, mood, alertness, or ability to manage daily tasks.
A home program that is unclear, too easy, too difficult, or not feasible.
Trusted resource: American Stroke Association: Tips for Daily Living — Practical strategies for everyday tasks after stroke.
Trusted resource: American Stroke Association: Preventing Falls — Stroke-specific fall prevention resources.
Preventing another stroke is part of recovery. The prevention plan should be based on the likely cause of the stroke and the survivor’s individual risks—not a generic list alone. Common areas include blood pressure, cholesterol, diabetes, atrial fibrillation or other heart disease, smoking, sleep apnea, physical activity, nutrition, and taking medications as prescribed.
Keep an up-to-date list with the medication name, dose, purpose, time, and prescribing clinician.
Ask which medicines reduce clotting, control blood pressure, manage cholesterol, or treat another specific risk.
Confirm whether pills may be crushed or need a different form when swallowing is impaired.
Use one pharmacy when possible so interactions and refills are easier to review.
Use a pill organizer, alarms, blister packs, or caregiver checks if memory, vision, dexterity, or language is affected.
Do not stop blood thinners, blood-pressure medicine, seizure medicine, or other prescriptions without medical advice.
Ask what side effects or warning signs require a call.
Primary care follow-up and which clinician is coordinating the overall plan.
Neurology or stroke clinic appointment.
Cardiology follow-up or prolonged heart-rhythm monitoring when indicated.
Rehabilitation medicine, therapy, swallowing, vision, mental health, or sleep evaluation.
Blood pressure, cholesterol, diabetes, and kidney-function monitoring.
Review of driving, return to work, exercise, sexual activity, and travel.
Pending imaging, vascular studies, or tests for a stroke of uncertain cause.
What is the most likely cause of this stroke, and how certain are we?
What are this person’s three most important modifiable risks?
What blood pressure range should we aim for, and how often should it be checked?
Which medications are essential for prevention, and what happens if a dose is missed?
Is heart-rhythm monitoring or treatment for atrial fibrillation needed?
Is sleep apnea evaluation appropriate?
What type and amount of physical activity is safe now?
Are there diet or swallowing needs that change nutrition advice?
What symptoms suggest bleeding, a medication reaction, or another stroke?
Trusted resource: American Stroke Association: Preventing Another Stroke — Patient-focused prevention guidance.
Trusted resource: American Stroke Association Prevention Checklist — A practical list of prevention actions.
Some of the most disruptive effects of stroke are invisible. A person may look physically recovered but struggle to follow a conversation, filter distractions, recognize risk, control emotion, tolerate a busy day, or find words. These changes are neurological and deserve assessment and treatment—not judgment or assumptions that the person is unmotivated.
Assume competence. Aphasia affects language, not intelligence.
Use short, adult sentences and discuss one topic at a time.
Reduce background noise and allow extra response time.
Ask yes/no or choice questions when open-ended questions are difficult.
Use writing, drawing, gestures, pictures, or a communication device.
Confirm the message rather than pretending to understand.
Include the survivor in conversations instead of speaking only to the caregiver.
Ask a speech-language pathologist to teach individualized communication strategies.
Can the person manage medications, finances, cooking, appointments, and emergencies?
Does the person notice the affected side and recognize current limitations?
Can the person stay focused in a quiet setting? What changes in noise or fatigue?
Can instructions be followed after a delay or while multitasking?
Is impulsivity, reduced judgment, or slow processing affecting safety?
Does the person need supervision even when no physical help is required?
Would neuropsychology, occupational therapy, or speech-language pathology evaluation help clarify strengths and needs?
Plan demanding activities for the time of day when energy is best.
Alternate physical, cognitive, and social tasks with rest.
Reduce unnecessary noise and multitasking.
Consider sleep quality, pain, mood, medications, nutrition, and sleep apnea.
Use pacing rather than pushing until exhaustion.
Explain to others that post-stroke fatigue can be severe even when the person appears well.
Could these changes be caused by aphasia, cognitive impairment, depression, fatigue, sleep problems, medication, or another medical issue?
Which specialist should evaluate this problem?
What strategies can family members use at home?
Are counseling, medication, support groups, or caregiver training appropriate?
What changes would require urgent mental-health help?
How should decisions about driving, finances, work, living alone, and supervision be evaluated?
Trusted resource: American Stroke Association: Emotional and Behavioral Changes — Information on depression, anxiety, personality changes, and PBA.
Trusted resource: American Stroke Association: Driving After Stroke — Questions and safety considerations before returning to driving.
Trusted resource: American Stroke Association: Communication and Aphasia — Communication resources for survivors and families.
Stroke recovery often depends on practical supports outside the clinic. A caregiver may be coordinating appointments, transportation, medications, personal care, meals, insurance, finances, and communication while also coping with major life changes. Asking for help early is safer than waiting for a crisis.
List the tasks that require physical help, supervision, reminders, transportation, or communication support.
Identify which tasks require training from nurses or therapists.
Determine how much help is needed during the day, overnight, and on weekends.
Create backup plans for illness, work conflicts, emergencies, and caregiver fatigue.
Invite more than one person to learn essential tasks when possible.
Review the plan regularly; caregiver capacity and survivor needs may change.
Who can help us understand insurance coverage, denials, and appeals?
Should we apply for employer disability, SSDI, SSI, Medicaid, or other benefits?
Where can we obtain low-cost or loaned equipment?
Are home-delivered meals, transportation, in-home care, or respite available?
Who can help with housing accessibility or home modifications?
Are there support groups for survivors, caregivers, young survivors, or people with aphasia?
What services are available in our county, and who makes the referral?
What should we do if the current plan becomes unsafe?
Discharge summaries and imaging reports.
Current medication list and allergies.
Provider, therapy, pharmacy, and equipment contacts.
Insurance cards, authorizations, denials, and appeal deadlines.
Employer leave and disability-policy information.
Benefits applications and confirmation numbers.
Appointment calendar and transportation details.
Equipment prescriptions and letters of medical necessity.
Advance directives and legal documents.
Notes from calls, including the date, person, and next step.
Trusted resource: American Stroke Association: Caregiver Guide to Stroke — Practical information for family caregivers.
Trusted resource: American Stroke Association Stroke Family Warmline — Support and information for survivors and families.
Trusted resource: United Way 211 — Local referrals for food, housing, utilities, transportation, and other needs.
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by Jake Sheaffer
“I once threw a canister of my supplement powder at the wall and dented it. That’s something I can’t imagine ever doing before my stroke, but it’s just another part of my recovery to work on.”
______________________________
On an early October weekend in 2019, Alesha Goodman and her longtime boyfriend Drew hiked over 50 miles of rugged desert landscape in the Ochoco National Forest in Central Oregon. They were on a nine-day hunting trip they’d been planning for months. While Drew streaked up the steep slopes of sagebrush and loose rock, Alesha tarried behind breathing heavily, fighting the searing pain radiating from the base of her skull. An active thirty-four-year-old who frequented local gyms, walked her dog daily, and hiked on weekends, Alesha never suspected the severe neck pain and nausea she’d had for the past week and a half were signs of an impending stroke. And not just one stroke, but two. Two potentially fatal strokes that would occur within an hour of each other the day after she returned from the Ochocos.
An only child, Alesha was close to her parents and her grandmother who lived on her parents’ property later in life. As a kid, she delivered newspapers in her Bend, OR neighborhood, and in her spare time, she wrote children’s books for fun and read voraciously, prompting close friends to refer to her as a “living encyclopedia of odd information.”
On the Monday morning after she got home, Alesha sat in traffic at a parkway off -ramp, still in discomfort from the neck pain and the nausea. She had new symptoms, too, dizziness and feeling faint. Regardless of the pain, she readied herself for work, but she had an uneasy feeling about her job.
Over the weekend, Alesha had received multiple text messages from her employer, a jewelry company in Central Oregon, about an issue with her company email and password, but with no cell reception, she couldn’t respond to her manager’s concerns. After searching through Alesha’s desk for her email password and not finding it, but instead finding an important legal document she’d already dealt with but had not yet disclosed to her boss, the company hired a specialist to get around the digital safeguards. That day, Alesha was let go from her position.
Purchase the Book to Learn More About Alesha’s Journey!