General Tips

Increase visibility of task/environment.

• Increase contrast: light on dark, or dark on light.
• Decrease background patterns.
• Remove the overlay of patterns, shadows and reflections.
• Manage glare with appropriate sunglasses and other tinted lenses.

Organize: Decrease clutter and create workstations.

Simplify tasks: Eliminate complex tasks requiring vision. For instance, instead of dialing 10-digit phone numbers, consider having your phone set up for one- or two-digit speed dialing.

Considerations for Reading Printed Materials

Mark the edge of the print with contrasting colors, such as red, to help navigate the page to read.

If using bifocals, have a second pair of reading glasses nearby if needed.

Increase the visibility of reading material.

Use appropriate lighting.

• Use even illumination.
• Use higher-watt bulbs.
• Minimize glare from windows, glass surfaces, white walls, etc.
• Use a gooseneck lamp or over-the-shoulder light fixture to illuminate
  reading material.

Considerations for Digital Materials

Adjust settings for good contrast and bold, enlarged print.

Consider using fonts that are easier to read (sans serif).

Adjust the screen setting for brighter or cooler lighting according to your
preference.

Considerations for Handwriting

Slow down and write slowly.

Increase the visibility of the writing surface.

• Rotate paper.
• Maximize contrast and illumination.
• Place the light on the opposite side of the writing hand.
• Use a bold marker.
• Use bold-lined paper.
• Mark the end of the line with a ruler to indicate the stopping point.

Considerations for Mobility

• Have family and friends approach you on your side with intact vision.
• Use wider head turns.
• Increase head and eye movement.
• Use an organized, efficient search pattern.
• Increase attention to visual details.
• Pad sharp corners of furniture or countertops.
• Mark furniture and cabinets with tape for higher contrast.
• Keep furniture in the same place and replace moved items to their spot.

• 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, contact Social Security and ask if you are eligible for Medicare Part D. This plan helps pay part of the cost of medicines.
• Ask your doctor for generic medicines whenever possible. Lists of less expensive generic medicines are available at most pharmacies and online.
• Pharmacists are good information resources about medication costs and correct medicine usage.
• Try to use only one pharmacy for all your medications. This can help with recordkeeping for costs, deductibles and limits.
• If you are admitted to the hospital, ask for a case manager who can help you with most of your concerns about paying for your medicines.

• RX4OKLA.com (or 1-877-RX4-OKLA or 1-877-794-6552)
• needymeds.org
• cms.hhs.gov
• pparx.org
• patientadvocate.org
• internetdrugcoupons.com

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 television, radio and other noise when talking with the survivor.

Use simple language.

Give time to understand the message.

• Wait patiently for the person to respond to the message.

Repetition is often required.

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

Consider these ideas if the message continues to be unclear.

• Try writing down the ideas.
• Try asking yes or no questions.

Remember speech and language skills can continue to improve.

• The brain can take a lifetime to heal; speech and language can continue to improve with work and practice.

(download pdf here)

Do

• Keep a current and accurate list of all medications with you at all times including over-the-counter vitamins and herbals.
• Review the medication list, drug allergies and medical diagnosis at each provider/therapist visit.
• Remember aspirin and high blood pressure medications are very important for stroke survivors and anyone with high blood pressure.
• Remember Coumadin, a blood thinner, must be managed with dietary and bleeding precautions, as well as getting lab work on schedule.
• Use one pharmacy to more easily monitor drug interactions, duplication and usage. Use one physician or let each physician you visit know what the other physician(s) have given you.
• Use a pill planner to organize your medications for the coming week to help you recall if you have taken your medication.
• Keep a notebook for writing down questions that come up between provider visits. Take the notebook with you to make sure all questions are answered when visiting your physician or provider.
• Avoid home remedies, vitamin supplements, etc., without checking with your physician or pharmacist first.

Don't

• Use any medicines not prescribed specifically for you.
• Take expired medications.
• Split medicines if not prescribed to do so or approved to split to save money.
• Spilt non-scored tablets, especially if extended-release (they cannot be evenly divided).
• Take any veterinary medicine (dog, cat or cow antibiotics) or anti-parasite medications.

(download pdf here)

Behavior and Coping Strategies

Right-brain stroke survivors experience:

Emotional highs and lows and involuntary episodes of excessive crying and/or laughing. These are often manageable with medications.

• Interrupt the behavior with distractions.
• Change the subject or speak the survivor’s name.
• Continue conversation; ignore display of emotion.
• Watch for fatigue and encourage rest periods.

Short attention spans including distractions and loss of concentration

• Ensure a quiet environment. Turn off TVs and radios; unplug phone.
• Divide tasks into steps.
• Encourage survivor to slow down and go step-by-step.
• Supervise projects that could be harmful if distracted such as cooking or ironing.
• Install chime on door to sound an alert if the survivor leaves the house.

Poor judgment, especially for his or her own safety and impulsiveness

• Don’t over- or underestimate the survivor’s abilities.
• Stay with survivor and monitor activity.
• Keep survivor’s environment safe. Arrange it to alleviate visual or sensory problems.

Confusion and memory loss

• Write step-by-step directions for tasks like dressing, laundry or making a sandwich.
• Set fixed schedules if possible for meals, routine events like church and dinner out.
• Give new information a little at a time, slowly; give survivor time to process it.
• Offer memory aids such as calendars, appointment books, Post-it notes and pictures of where things are located.
• Do not point out the survivor’s memory problems.

Spatial-perceptual issues (neglect of left side/survivor is unaware he or she has a left side)

• Place items the survivor needs on the right side to be seen. For example, turn dinner plate so all food is seen and eaten.
• Provide reminders of the left side by touching, rubbing and massaging it.
• Encourage survivor to scan (turn head side to side) to see what is ignored on the affected side.

Behavior and Coping Strategies

Left-brain stroke survivors experience:

Cautious or compulsive behavior

• Offer encouragement and positive feedback phrases such as keep going, good, that’s right.
• Develop a cadence to allow survivor to work or function at a 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 such as, “Come to the kitchen.”
• See if the survivor can sing the answer. Singing uses many areas of the brain undamaged by the
  stroke.
• Use carrier phrases the survivor can complete like, “You want a ____.”

Aphasia (difficulty speaking [expressive] or understanding what is being said [receptive]

• Be patient; give the survivor time to respond to questions or comments.
• Keep questions simple so the survivor is encouraged to answer with short, yes or no replies.
• Encourage survivor to point to objects or make gestures to show what he or she wants.
• Use a word or picture board.
• Speak clearly and concisely; use one idea at a time.

Posterior stroke survivors experience:

Lack of coordination or swallowing problems

• Remove throw rugs to deter tripping.
• Install grab bars in bathrooms and hand rails around the house.
• Have a walker available.

Swallowing problems

• Continue diet prescribed in the hospital until the speech therapist changes it.
• Encourage the survivor to continue liquid thickener to avoid choking.
• Purée favorite foods.

(download pdf here)

Everyone is working very hard to help your loved one recover. Good communication and coordinated rehabilitation are keys to a successful recovery.

When do we start planning for rehabilitation?

Planning should begin as early as possible during the hospital stay. Review rehabilitation options with the team including the physician and case manager.

What options are available for the stroke survivor?

• Inpatient rehabilitation or outpatient rehabilitation
• Skilled nursing facility inpatient therapy
• Home-based therapy

Ask the survivor’s case manager about medical insurance coverage and other help after discharge such as:

• Equipment needs
• In-home therapy
• Skilled nursing facility options including number of available days
• Available community services for transportation, meals, respite care
• Name/contact numbers to call for help after discharge

What goals are reasonable for this particular survivor?

Find out the survivor’s current status from each therapist.

• Can the survivor feed him or herself without assistance?
• Can he or she stand well enough to use the toilet without assistance?

Letting therapists know what is important to the survivor and family members helps them focus their efforts to achieve specific goals.

Examples include:

“It is important for my loved one (survivor) to be able to feed himself.”

“My loved one really hopes to be able to hold her grandchild again.”

What are the specific goals, concerns and expectations for the survivor’s rehab treatments and therapy?

Return to normal: Rehab frequently improves the survivor’s function but will not return them to normal.

Reasonable expectation of recovery: Make the hand stronger so the survivor can feed himself or herself.

If you or the survivor don’t understand a treatment or therapy, ask why it is being done. It’s very important to understand what the survivor consents to do before agreeing to do it.

Is safety a big issue? What are the major concerns? Ask questions such as, “Can my loved one swallow safely or go to the bathroom without assistance?”

Ask if you can join some therapy sessions to see if you can understand how to correctly assist the survivor.

How is improvement measured during rehab?

Therapists will evaluate improvements in the survivor’s balance, gait, transfers, speech and many other patient-focused goals.

Planning for discharge after rehab

• The survivor’s modified or new living arrangements must be available prior to discharge. Modifications range from discharge to the home with home health care assistance/paid caregiver assistance to discharge to a skilled or assisted living facility (either temporary or permanent).
• A current medication list must be completed before discharge. This is located on the discharge summary document.
• Verify a clear understanding of what type of follow-up will be provided.
• Ensure you have contact names and numbers for follow-up care.

Questions for physical and occupational therapists

• What must the survivor be able to do independently to go home or to assisted living? This often involves safety as well as independence with toileting, dressing and basic mobility inside the home/facility.
• Realistically, how much assistance can the family provide?
• What home modifications are required for the specific survivor? What help can rehabilitation therapists give to assist with coordination of these adaptations?

Questions for speech therapists

• Does the survivor understand what is said to him or her? Is more time needed to process what is said?
• Can he or she accurately express needs, wants and ideas?
• What diet should continue at home? What foods are included on that diet?
• Are thickeners still required? If so, where can they be purchased?
• What are the signs a diet and swallowing re-evaluation is needed?
• How do I recognize signs of possible aspiration (getting liquids or food particles in the lungs)? What should be done about this? What can be done to avoid aspiration risks prior to discharge?

(download pdf here)

Never lose hope. Strokes are life-changing events and require intense rehabilitation to regain function.

• Function can improve many years after stroke.
• Through constant repetition, the brain can create new pathways.
• PT (physical therapy) and OT (occupational therapy) operate on the principle of forced use, which:
  • Pushes the affected body part to perform like it did pre-stroke.
  • Stimulates the brain and helps to restore function.
  • Increases the possibility of recovery through frequent use of the affected side.

How to help your therapists

• Work to maintain motivation. Enlisting support from family and friends can help.
• Communicate openly with your therapists; advise them of your goals and needs.
• Do what your therapist requests during both clinic and at-home therapy sessions.
• Don’t cheat with mobility exercises or other strengthening activities.
• Shortcuts can build bad habits that are hard to break, hindering resumption of normal function.
• Don’t skip your daily exercises.
• Check with your provider or therapist before initiating or changing an exercise program.

Functional exercises help you perform everyday life activities more easily. Focus mentally when performing functional exercise; mentally taxing activity is required to stimulate brain reorganization.

• Upper extremity functional exercises (for a minimum of four hours per day) include:
  • Turning doorknobs or faucet handles
  • Brushing teeth and hair
  • Lifting empty cup to improve grasping
  • Putting coins in piggy bank

• Divide the four hours into several short sessions.
• Extend and close the hands to help reduce hand and arm spasms.
• During your functional exercise sessions:
  • Add repetitions.
  • Make movements faster and smoother.
  • Increase complexity of the task.

• Lower extremity functional exercises include (remember to practice safety):
  • Walking
  • Ascending/descending stairs or curbs
  • Riding a stationary bicycle

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

(download pdf here)

Battle stroke as you do heart disease, with diet and exercise.

(download pdf here)

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.

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; 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. 

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.

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.

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?