INTEGRIS James R. Daniel Stroke Center

Stroke Recovery and Resources

Life after stroke can be challenging. The tips below, can help coping become easier and safer for those impacted by the stroke and those providing care for the stroke survivor.

Tips for Life After Stroke

General Tips

  • Increase visibility of task/environment
    • Increase contrast (light on dark or dark on light)
      • Decrease background pattern
      • Remove overlay of pattern (shadows, reflections)
      • Enlarge
      • Manage glare
      • Appropriate lighting
      • Even illumination
      • Maximum lumens
      • Minimize glare (windows, glass surfaces, white walls, etc.)
      • Flexible placement
    • Organize: Decrease clutter & create work stations
    • Simplify tasks: Eliminate steps requiring vision (e.g. speed dial phone)
  • Considerations for Reading 
    • Anchor lines in contrasting color (red) to help navigate page to read
    • If wearing bifocals, may need separate pair of glasses for reading
    • Increase visibility of reading material
      • Good illumination (Flexible placement, solid apron on the lamp)
      • Good contrast (Bold print)
      • Appropriate font (Sans Serif)
      • Large print
  • Considerations for Handwriting
    • Encourage person to slow down & monitor the pen tip to ensure accuracy
    • Increase visibility of the writing surface
      • Maximize contrast & illumination
      • Place the light on opposite side of the writing hand
      • Use bold marker
      • Use bold lined paper
  • Considerations for Mobility
    • Use wider head turns
    • Increase head & eye movement
    • Use an organized efficient search pattern
    • Increase attention to visual details
  • If you are having side effects from the medicine, call your doctor and speak with him/her or the nurse. Do NOT stop the medicine until after you talk to one of them.
  • Take the medicine your doctor prescribes – if cost is a problem, talk with your doctor about other options.
    Assistance is available for many expensive prescription medicines.
  • If you are on Medicare OR Medicaid, go to your local Social Security office and ask if you are eligible for Medicare Part D (helps pay part of cost of medicines).
  • Ask your doctor for generic medicines whenever possible. Lists of less-expensive generic medicines are available at most pharmacies now, as well as online (example – Wal-Mart, Target, CVS, Walgreens, Sams Club, etc.)
  • Pharmacists are a good resource and information about medicine costs and correct usage of medicine (i.e. when to take with food or reactions to watch for).
  • Try to use only 1 pharmacy for all your medicines – it can help with record-keeping for medicine expenses, deductibles and limits.
  • If you find yourself in the hospital, ask for a case manager. They can help you with most of your concerns about paying for your medicines.
  • Helpful websites for getting assistance with cost of medicines:

Continue the diet used in the hospital until told differently by a speech therapist. Includes thickening of liquids if applicable. All to avoid survivor choking or getting pneumonia from food in lungs.

Continue any position of the chin or head given in hospital for eating until changed by speech therapist to prevent choking or getting food or liquid in lungs.

Reintroduce social situations gradually. Watch for signs of survivor getting tired or overstimulated.

Use lots of herbs and spices (rather than salt) to improve taste of food. Feel free to puree their favorite foods, as well as whatever the family is eating.

Caregivers and family members cannot take care of their loved ones if they don’t take care of themselves. Get help from family members, friends, consider hiring help or adult daycare to give caregivers a rest. Don’t feel guilty about wanting or needing to get help or have a rest.

Speak slowly

  • It often takes a little more time for the stroke survivor to process information •Too much noise, light or activity can be overwhelming. Avoid having the TV,radio or other noise on when talking with the survivor

Use simple language

Give time to understand message

  • Wait patiently for the person to respond to the message

Repetition is often required

  • The more the survivor repeat/rehearse new information, the more likely he or she is to remember it.

If message continues to be unclear, try:

  • Writing
  • Ask Yes or NO questions

Remember that speech & language skills can continue to improve.

  • The brain can take 18 months to heal, and speech & language can continue to improve beyond that with work and practice.

Never lose hope. Research shows it is possible to improve function for many years after stroke. The brain can create new pathways, but constant repetition is required to make these changes.

Physical and occupational therapy operates on the principle of “forced use” – forcing the affected body part to perform more like they did pre-stroke. This technique promotes stimulation of the brain and is the best chance for regaining function. In other words, the more you use your affected side, the better possibility of recovery.

Build in daily “functional exercises” for your upper extremity such as turning doorknobs or faucet handles; lifting empty cup to help with grasping; brushing teeth or hair; putting coins in piggy bank; opening your health condition, aim for 3-4 hours/day of “functional exercises” at a minimum. Can be broken into several times/day. Do this with safety in mind and extending the fingers (not just closing the hand to make a fist; this will help reduce spasms in the hand and arm.). These activities should be performed safely with the approval of your physician or therapist.

Build in daily “functional exercises” for your lower extremity such as walking; ascending/descending stairs or curbs; riding a stationary bicycle. These activities should be performed safely with the approval of your physician or therapist.

Depending on your health condition, aim for a minimum of 3-4 hours/day of “functional exercises." This can be broken into several times/day. Try to perform the exercises EVERY DAY (If you skip them, you don’t get the benefit). Do this safely and always check with your physician or therapist before beginning or changing an exercise program.

Being very focused mentally during “functional exercises” brings better results! Research shows that the exercises need to be mentally taxing to do to get reorganization of the brain. As you work on a movement or task, always seek to add repetitions, make it faster, smoother or move on to a more difficult task to continuously challenge your brain.

If you have foot drop or an inability to walk without dragging your foot, ask your physician or therapist about a brace such as an AFO (ankle foot orthosis).

Improvement comes from internal motivation. Therapists can help patients improve and reduce their deficits after stroke, but only if the patient is motivated to do so. Support from family and friends is helpful for this.

Don’t allow yourself to cheat with mobility or activities. Relying on compensatory can build bad habits that are hard to break and can hinder regaining “normal” functions.

Do what your therapist asks you to do at home. Strokes are life-changing events and require intense rehabilitation to regain function. Don’t think that just attending therapy sessions during the week is enough to allow you to meet your goals. It requires consistent effort every day from you!

Communication is KEY! Let your therapist know exactly what YOUR GOALS and NEEDS are – specifically!

  1. Develop a routine and stick with it.
  2. Create a place for everything.
  3. Store everything in it’s rightful place to minimize confusion about it’s whereabouts.
  4. Use a to-do list.
  5. Use a planner or notebook to keep track of important plans, questions and dates.
  6. Journals or organizers can help keep track of questions to ask or tasks that need to be performed, as well as appointments to be kept.
  7. Hang a bulletin board or dry-erase board in a highly-visible place on which you can post messages. Advance planning helps reduce the risk of forgetting.
  8. Focus on one thing at a time
  9. Make notes, and use highlighters to highlight important information.
  10. Use a wristwatch or timer w/programmable alarms
  11. Wristwatches or timers that you can program for specific times will help to cue when it is time to take medicines or to perform important tasks.
  12. Doing the same tasks at the same time each day helps reduce forgetfulness.
  13. Avoid stores and restaurants during peak times – the noise, light and crowds can be overwhelming.
  14. When attending crowded places, sit near an exit so you can leave quickly if you begin feeling overwhelmed.
  1. Keep a current and accurate list of all medications (including OTC, Vitamins and Herbals) with you at all times for physician visits to review. Include drug allergies current medical condition.
  2. Aspirin is a very important medication (even w/o a prescription).
  3. High blood pressure medicines are very important for stroke survivors and anyone with high blood pressure.
  4. Coumadin (blood thinner) must be managed with dietary and bleeding precautions, as well as getting PTT lab work on schedule.
  5. Use one pharmacy. It is easier to monitor drug interactions, duplication and usage that way. Use one physician or at least let each physician know what the other physician(s) have given you.
  6. Use a pill planner to organize your medications for the coming week. It is easier to remember if your have taken your medication.
  7. Keep a note book out for writing down any questions that come up and take it with you to all doctor visits .
  8. Avoid home remedies, vitamin supplements, etc. without checking with your physician or pharmacist first .

DON’T

  • Share any medicines not prescribed FOR YOU
  • Take any expired medicine
  • Split medicine just to save $$$ if they are not prescribed that way or OK’d to split
  • Spilt any non-scored tablets, especially if extended-release (not evenly divided)
  • Take any veterinary medicine (dog, cat or cow antibiotics)

Aphasia is the loss or reduction of the ability to speak, read, write, understand or calculate. If you or someone you know has aphasia, share this list with family and friends to help them better understand how to communicate with you.

I WILL

I WILL… Encourage the person to speak and praise all efforts Promote and encourage independence.
I WILL… Give the person every opportunity to express him or herself.
I WILL… Speak in short, simple sentences, using a natural voice and a slow rate of speech.
I WILL… Practice speech exercises during short sessions in the home.
I WILL… Carefully place yourself and all objects within the person’s visual range, if there is a cut in the person’s visual field.

I WILL NOT

I WILL NOT Force the person to speak.
I WILL NOT Speak for the person unless absolutely necessary.
I WILL NOT Interrupt the person when he or she is speaking.
I WILL NOT Anticipate the person’s every need.
I WILL NOT Talk about the person in his or her presence; lack of speech does not mean lack of comprehension or lack of intelligence.

Reprinted from the Stroke Connection Magazine May-June 1996 issue.

Planning for effective rehabilitation and recovery from stroke needs good communication and coordination from the patient, family or caregiver, as well as the physicians and therapists. Everyone is working very hard to do the best they can to help your loved one recover.

Here are some questions to help formulate and understand an effective plan of care, so that all sessions and days spent in rehab make the most of everyone’s efforts for recovery.

WHEN do we start planning for rehab?

Planning should begin as early as possible in the hospital stay to allow for review of options and family’s planning. Rehab stays can be a very limited time, and every day is important. Discuss this with your physician and the case manager.

What types of options are available?

  1.  Inpatient rehabilitation (such as Jim Thorpe Rehabilitation Hospital) – must qualify by patient’s status and ability to tolerate 3 hours of therapy daily to be admitted here)
  2. Outpatient rehabilitation (go to an outpatient rehab clinic several times/week)
  3. SNF (Skill Nursing Facility) – still inpatient but less intense therapy
  4. Home-based therapy (often provided through Home Health Agencies)

WHAT are realistic goals for this particular person?

  1. Find out the current status of the patient from each therapist (EX: Can they feed themselves or do they need to be fed? Can they stand well enough to transfer to the toilet themselves?)
  2. Letting therapists know what is important to the patient and family helps the therapists focus their efforts to achieve a specific goal.
  3. Good communication is essential to let the therapists and nurses know what is really important to the patient and family. An example would be that “being able to feed myself” or “being able to hold my grandchild” is a very important goal to them.

WHAT are the specific goals, concerns and expectations for the patient’s Rehab treatments and therapy?

  1. “Will rehab make them “normal again”? Recovery may improve the patient’s function but not always return to “normal”.
  2. What is a reasonable amount of recovery to expect?
  3. “Making the hand stronger to be able to feed myself” is much more specific than just “getting stronger”. Ask WHY if you don’t understand the treatment or therapy – very important to understand what you consent to do BEFORE you agree to it.
  4. Is safety a big issue? If so, specifically which areas are you concerned about? (EX: Can they swallow safely? Can they go to the bathroom by themselves safely? )
  5. Ask if you can sit in on some of the therapy sessions to see if you can understand how to help the patient once they are discharged, and to be sure you are doing this correctly.

HOW will improvement be measured during Rehab?

If that patient is able to achieve 50% improvement, how does the family or caregiver assist with the other times when they are struggling to help themselves, i.e. assisting with eating or toileting?

PLANNING FOR DISCHARGE after Rehab:

  1. Be sure you have a current Medication List when leaving the hospital or rehab facility.
  2. Make sure you have a clear understanding of what type of follow-up care will be needed and who will be providing it (if known), as well as how to get in touch with that person or facility.
  3. Will the patient be able to live at home or in their same situation again, or is it time to find other living arrangements? These take time if changes need to be made and families need time to make these arrangements.
  4. Specific important questions to ask of the therapists or nurses for families/caregivers to provide the most effective assistance to their loved one (please give 2-3 max).

Physical Therapists & Occupational Therapists:

  1. Determine what the patient will HAVE to be able to do by themselves to go home or independent or assisted living. Often involves safety and independence with toileting, dressing and basic mobility inside the home.
  2. Sincerely discuss what level of assist the family can realistically provide. If unable to provide ongoing needed care, are hired caregivers or assisted living options? If hiring help or moving to assisted living, make sure to ask how much help they can provide at what cost.
  3. If the plan is to go home, make note and take measurements of barriers in the home which will help therapy to work with them and tailor treatments to their specific environment, such as:
  • Any steps or stairs
  • Narrow halls or doorways
  • Height of toilet, bed, chair they usually use.

Speech Therapists:

  1. Does the patient understand what is said to them or do they need more time to process what is said?
  2. Can they accurately express needs, wants and ideas?
  3. What diet do they need to continue at home – what foods are on that diet?
  4. Do they need to continue thickeners and where to do I get them?
  5. What are signs they need to have diet and swallowing re-evaluated?
  6. What are the signs of aspiration (getting food or fluid into the lungs)? (Coughing, choking, runny nose/watery eyes during meals)
  7. How do I help them deal with the frustration of not being able to communicate?

Case Managers:

  1. What does my insurance cover (such as equipment? In-home therapy? A skilled nursing facility? If so, how many days?)
  2. Are they community services that can help with transportation? Meals? Respite care to give the caregiver a break?
  3. Who can I call if I have questions or need support after the patient is discharged?

General:

  1. Where can I get help as a caregiver to deal with the fear and frustration of this change in our lives?
  2. How do I take care of my loved one and still take care of myself?

Behavior and Coping Strategies

Right-Brain Strokes

  • Emotional highs & lows (emotional lability) – involuntary outbursts of laughing, crying)
    • Interrupt the behavior with distractions.
    • Change the subject or call their name.
    • Accept behavior in matter-of-fact way. Continue conversation and ignore display of emotion.
    • Watch for fatigue & encourage rest period if due to fatigue.
    • Often manageable with medications.
  • Short attention span – distractions & loss of concentration
    • Quiet down environment. Turn off TV and radio – unplug phone
    • Divide tasks into steps
    • Encourage survivor to slow down – go step-by-step
    • Supervise project that could be harmful if distracted (i.e. cooking, ironing) ◦Install chime on door to alert for patient leaving house.
  • Poor judgment (especially own safety) & impulsiveness
    • Don’t overestimate survivor’s abilities
    • Stay with survivor & monitor activity
    • Keep their environment safe – arrange it for visual or sensory problems.
  • Confusion & Memory loss
    • Write out step-by-step directions for tasks (dressing, laundry, making sandwich)
    • Set fixed schedules if possible for meals, routine events like church, dinner out
    • Give new information a little at a time, slowly – give survivor time to process it.
    • Memory aids (calendars, appointment books, post-it notes and pictures where things are located)
    • Do not point out the survivor’s memory problems.
  • Spatial-perceptual problems (neglect of left side – unaware they have a left side)
    • Place items they need on the right side to be seen – turn dinner plate so all food is seen and eaten.
    • Reminders that they have a left side – touch it, rub it, massage it
    • Encourage survivor to scan (turn head side to side) to see what’s being ignored on the affected side.

Left-Brain Strokes

  •  Cautious or compulsive behavior
    • Offer encouragement and positive feedback. (EX: “Keep going”; “good”; “that’s right”)
    • Develop pace to allow survivor to work or function at comfortable pace
    • Watch for fatigue – encourage survivor to ask for help with daily tasks without guilt
  • Apraxia (difficulty translating ideas or performing function into action)
    • Give short phrase instructions geared to achieving the goal (“Come to the kitchen”)
    • See if patient can “sing the answer.”
    • Use carrier phrases patient can complete, like “you want a ________.”
  • Aphasia - difficulty speaking (expressive) or understanding what is being said (receptive)
    • Be patient – give them time to give a response to questions or comments.
    • Keep questions simple – being able to give yes or no answers is best.
    • Encourage survivor to point to objects or make gestures to show what they want
    • Use a word or picture board.
    • Speak clearly & concisely – use one idea at a time.