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Stroke is a medical emergency. With timely treatment, the risk of death and disability from stroke can be lowered. It’s important to know the symptoms and act in time; the first 3 hours are critical, brain cells are dying.





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Life After Stroke

“No matter how dark the moment, love and hope are always possible”

George Chakiris

Overview

Guidelines for Interacting with a Stroke Survivor

Caregiver

Rehabilitation

Rehabilitation Team

Side of Brain Damaged

Types of Disabilities

Steps Against Recurrent Stroke (STARS)

Overview

Recovery from stroke may be a lifelong endeavor. Nevertheless, most individuals do continue to improve and frequently can achieve a satisfying existence.

Following a stroke, some areas of the brain may function normally while other areas do not. A person may seem as capable as ever when doing one task, but then be completely unable to perform another task that does not seem to be any more difficult. Often, this is confusing or frustrating to the stroke survivor because they do not understand why they get so tired when doing what seems to be a simple task.

Sometimes the person’s pattern of behavior is inconsistent. They may have good days and bad days or some patterns of behavior may fluctuate during the day. Behaviors and performance often get worse when the person is tried or is exposed to too many sensory stimuli. Also, some people experience depression and/or lack of motivation because of their brain injury. Medications may be required to help balance the chemistry of the brain post-stroke.

The task of finding help may be overwhelming at first and that is why the Stroke Association of Florida has made it easier for you to find the information you need through our on-line Resource Guide. The Guide will provide you with information on local resources for home health care, rehabilitation, home-delivered meals, transportation and much more. The Guide is presented in PDF format so that you can print any of the pages you may need.

Included in the Resource Guide under “publications” is a list of stroke magazines you may find very helpful. The National Stroke Association has a publication which can be downloaded or purchased from their website: ”HOPE: The Stroke Recovery Guide”. The American Stroke Association and Healthsouth Hospitals has a publication, “Living with Stroke, A Guide for Families” which can be ordered from Amazon.com.

Our Calendar lists local support groups with dates, times, locations, contacts and directions.

Our Links page directs you to other websites including national stroke associations with useful information about stroke.

There are Stories of hope and success that will give you encouragement.

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Guidelines for Interacting with a Stroke Survivor

Communication may be difficult, give them enough time to respond, talk slowly, be patient when trying to communicate. It’s ok to help them find a word they are having trouble with.

 Treat them like adults and not children.

Speak directly to them not to their spouse or caregiver. Don’t talk like the stroke survivor isn’t there.

Give the stroke survivor a chance to be independent. Ask before you help them. Follow their instructions for initiating help.

Stroke survivors can have problems with balance. It takes alot of concentration to walk and any touch, even a gentle tap can set them off balance.

A wheelchair is an extension of the stroke survivor, be careful not to bump the chair.

Talk to the stroke survivor at eye level when possible. 

When the stroke survivor is tired and/or frustrated, all of their basic skills (talking, walking, handwriting, and concentration) diminish. Understand that this can cause them to be agitated.

Have patience.

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Caregiver

It is not unusual that your first few days will be overwhelming and exhausting. It is important that you take time to take care of yourself. Make it a priority to get enough sleep and to take breaks from the hospital. Seek out your own physician to help you manage your stress. Take things one day at a time. The road to recovery can be a long and difficult one but with the right attitude and perseverance you can and will survive.

Don’t hesitate to reach out to family, friends, church members, and support groups. Make a list of things you need done so that when someone asks if they can help you will have a good idea of where you need it. Delegate jobs to your family, many times they want to help but just don’t know how.

Start to keep a notebook with all the information you will need. A three ring binder is helpful.  Be sure to include your contact information in the event you misplace the binder. The following are suggested sections:

Names and phone numbers of family members and other caregivers

Names and phone numbers of doctors, health care providers and pharmacies

Insurance information, ID numbers, names and phone numbers of contacts and copies of insurance cards

Legal information with copies of legal documents (living will, durable power of attorney)

A calendar with doctor and therapy appointments

List of medications and schedule of when they should be taken

 

You may also want to make wallet-size info sheets:

Caregiver: include important phone numbers you may need while away from home

Stroke survivor: include “in case of emergency…”, family and caregiver names and phone numbers along with a statement such as “I am a stroke survivor…”. This is particularly helpful if the stroke survivor has expressive aphasia.

 

Get help with your finances and paying your bills.  A Care Manager or Personal Assistant or family member may be able to help you with this.

Caregivers run the risk of burnout. It certainly is not unusual for the caregiver to have feelings of anger, resentment, fear, guilt and depression. Some ways to deal with burnout are to:

Get frequent medical check-ups

Enlist the help of a counselor

Ask family and friends to spend time with the survivor so that the caregiver can get some free time for themselves 

Keep an eye on our Calendar for Caregiver Forums and Retreats

Join a stroke or caregiver support group

Take a look at on-line support groups

 

It’s often a challenge for both the caregiver and the survivor to adjust to their new roles. It’s important that the caregiver and stroke survivor share in the decision-making as much as possible. 

When the patient is discharged from the hospital certain arrangements may need to be made. Some of these tasks can be shared with family members. Local resources are listed in our Resource Guide under the following categories:

Assisted Living Facilities

Care Manager or Personal Assistant

Companion Service

Food or Home-Delivered Meals

Home Health Care

Independent Living

Medical or Mobility Equipment

Nursing Homes or Skilled Nursing Facilities

Personal Emergency Response Systems

Rehabilitation

Remodeling

There are also several websites specifically for Caregivers.

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Rehabilitation

With good medical care and rehabilitation along with dedicated and compassionate caregivers, stroke survivors can begin to rebuild their lives with a new sense of hope and strength.

Rehabilitation helps stroke survivors relearn skills that are lost when part of the brain is damaged with the goal in mind to reacquire the ability to carry out these basic activities of daily living. This represents the first stage in a stroke survivor’s return to functional independence.

The main goal of post-stroke rehabilitation is to help survivors become as independent as possible and to attain the best possible quality of life. Even though rehabilitation does not “cure” stroke in that it does not reverse brain damage, rehabilitation can substantially help people achieve the best possible long-term outcome. Rehabilitation may help stroke survivors relearn skills that are lost when part of the brain is damaged or teaches survivors new ways of performing tasks to circumvent or compensate for any residual disabilities.

There is a strong consensus among rehabilitation experts that the most important element in any rehabilitation program is carefully directed, well-focused, repetitive practice – the same kind of practice used by all people when they learn a new skill, such as playing the piano.

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Rehabilitation Team

Physiatrist

Physical Therapist

Occupational Therapist

Rehabilitation Nurse

Speech Therapist

Recreational Therapist

Psychiatrist or Psychologist

Vocational Rehab Counselor

Physiatrist:; A medical doctor who specializes in rehabilitation.

Physical Therapist:  A healthcare provider who specialized in maximizing a stroke survivor’s mobility and independence to improve major motor and sensory impairments, such as walking, balance and coordination.

Occupational Therapist:  A therapist who focuses on helping stroke survivors rebuild skills in daily living activities such as bathing, toileting and dressing.

Rehabilitation Nurse:  A nurse who coordinates the medical support needs of stroke survivors throughout rehabilitation.

Speech Therapist:  A specialist who helps to restore language skills and also treats swallowing disorders.

Recreational Therapist:  A therapist who helps to modify activities that the survivor enjoyed before the stroke or introduces new ones.

Psychiatrist or Psychologist:  Specialists who help stroke survivors adjust to the emotional challenges and new circumstances of their lives.

Vocational Rehabilitation Counselor:  A specialist who evaluates work-related abilities of people with disabilities. They can help stroke survivors make the most of their skills to return to work.

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Side of Brain Damaged

The types and degrees of disability depend on which part of the brain is damaged. 

Left Hemisphere

Stroke survivors with left hemisphere brain injury may experience any or all of the following:

Weakness, paralysis or altered sensation on the right side of the body

Aphasia, difficulty or an inability to speak and write (expressive aphasia) and/or difficulty understanding spoken and written language (receptive aphasia)

Problems with numerical recognition and calculations (dyscalculia)

Anxiety and depression

 Right Hemisphere

Stroke survivors with right hemisphere brain injury may experience any or all of the following:

Weakness, paralysis or altered sensation on the left side of the body

Distorted spatial and perceptual awareness including left sided neglect and problems judging distance, size, position and rate of movement

Problems expressing emotions, recognizing the emotions of others, reading “body language” and with social judgment

Apparent lack of concern or awareness of their disability with a tendency to be impulsive

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Stroke can cause five types of disabilities:

Paralysis

Sensory Disturbances

Language Problems

Memory, Learning & Awareness Problems

Emotional Disturbances

Paralysis

Paralysis problems controlling movement (motor control), is one of the most common disabilities resulting from stroke. The paralysis is usually on the side of the body opposite the side of the brain damaged.

Hemiplegia: one-sided paralysis

Hemiparesis: one-sided weakness

Dysphagia: problems swallowing

Ataxia: difficulty coordinating movement (body posture, walking, balance)

Sensory Disturbances

Stroke patients may lose the ability to feel touch, pain, temperature or position. Sensory deficits may also hinder the ability to recognize objects that patients are holding and can even be severe enough to cause loss of recognition of one’s own limb

Paresthesia:  Pain, numbness or odd sensations of tingling or prickling in paralyzed or weakened limbs

Neuropathic Pain:  Chronic pain syndromes resulting from stroke-induced damage to the nervous system

Frozen Joint:  A joint becoming immobilized due to lack of movement and the tendons and ligaments around the joint become fixed in one position causing pain

Thalamic Pain Syndrome:  Pathways for sensation in the brain are damaged, causing the transmission of false signals that result in sensation of pain in a limb or side of the body that has the sensory deficit

Incontinence:  Loss of ability to sense the need to urinate or the ability to control muscles of the bladder.  Loss of bowel control or constipation may also occur.  Permanent incontinence after a stroke in uncommon.

Language Problems

At least one-fourth of all stroke survivors experience language impairments, involving the ability to speak, write and understand spoken and written language.

Aphasia: Problems using or understanding language

Expressive Aphasia: Damage to a language center located on the dominant side of the brains known as Broca’s area. People with this type of aphasia have difficulty conveying their thought through words or writing. They lost the ability to speak the words they are thinking and to put words together in coherent, grammatically correct sentences 

Receptive Aphasia:  Damage to a language center located in a rear portion of the brain, called Wernicke’s area. People with this condition have difficulty understanding spoken or written language and often have incoherent speech.  Although they can form grammatically correct sentences, their utterances are often devoid of meaning

Global aphasia: Extensive damage to several areas involved in the language function. People with this condition lose nearly all their linguistic abilities; they can neither understand language nor use it to convey thought

Anomic or Amnesic Aphasia: Minimal amount of brain damage; its effects are often quite subtle. People with this condition may simply selectively forget interrelated groups of words, such as the names of people or particular kinds of objects.

Memory, Learning, Awareness Problems

Stroke survivors may have dramatically shortened attention spans or may experience deficits in short-term memory. Individuals also may lose their ability to make plans, comprehend meaning, learn new tasks, or engage in other complex mental activities.

Anosognosia: An inability to acknowledge the reality of the physical impairments resulting from stroke

Neglect: The loss of the ability to respond to objects or sensory stimuli located on one side of the body, usually the stroke-impaired side

Apraxia: Loss of ability to plan the steps involved in a complex task and to carry the steps out in the proper sequence. People with this condition may have problems following a set of instructions.

Emotional Disturbances

Many people who survive a stroke feel fear, anxiety, frustration, anger, sadness and a sense of grief for their physical and mental losses. These feelings are a natural response to the psychological trauma of stroke. Some of these disturbances are caused by the physical effects of the brain damage.

Clinical Depression: A sense of hopelessness that disrupts an individual’s ability to function.  Signs of clinical depression included sleep disturbances, a radical change in eating patterns that may lead to sudden weight loss or gain, lethargy, social withdrawal, irritability, fatigue, self-loathing and suicidal thoughts.

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Steps Against Recurrent Stroke (STARS)

People who have had a stroke are at a greater risk for having another. The good news is that there are steps from the National Stroke Association you can take to prevent a recurrent stroke.

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Sources:

American Stroke Association

National Stroke Association

Peninsula Stroke Association