- Pseudobulbar Affect– “sudden outbursts of uncontrollable crying or laughing”
- Aphasia Definitions– “Aphasia can be so severe as to make communication with the patient almost impossible”
- Coping with Depression: Signs You Might be in Trouble – “the forfeiting of our own well-being in order to become a primary caregiver”
- When Stroke Happens – “Strokes are complex and affect both loved one and caregiver in a multitude of ways”
Am I Having a Stroke?
Pseudobulbar affect (PBA) is one of the most frequently reported post-stroke behavior conditions, with up to half of all stroke survivors experiencing it at some time. PBA can be extremely embarrassing and can negatively impact a survivor’s social life and relationships.
What is Pseudobulbar Affect?
Have you experienced sudden outbursts of uncontrollable crying or laughing? If so, you may have Pseudobulbar affect (PBA). It is sometimes referred to as emotional lability, pathological crying and laughing or emotional incontinence. An episode of PBA can occur at any time, even in inappropriate social situations.
PBA is often mistaken for depression, causing it to be underdiagnosed, undertreated and sometimes inappropriately treated.
Only a healthcare provider can diagnose PBA. However, the Center for Neurologic Study-Lability Scale (CNS-LS), developed by healthcare professionals, can help you assess whether you have symptoms of PBA. Your answers to this simple seven-question scale will help you determine whether to talk to your healthcare provider about PBA. A CNS-LS score of 13 or higher may suggest PBA.
This scale is not intended as a substitute for professional medical assessment and/or advice. Please consult your healthcare provider.
Can Pseudobulbar Affect be treated?
PBA can be treated. The first step to treating PBA is to get an accurate diagnosis. Because people with PBA may cry a lot, their symptoms may be confused with depression. However, PBA is not depression. Ask your healthcare professional about PBA treatment options. Education of patients, families, and caregivers is an important component of the appropriate treatment of PBA.
Tips to live with PBA
Be open about the problem so people are not surprised or confused when you have an episode.
When you feel an episode coming on, try to distract yourself by counting the number of objects on a shelf or by thinking about something unrelated.
Take slow deep breaths until you’re in control.
Relax your forehead, shoulders and other muscle groups that tense up during an emotional episode.
- Change your body position. Note the posture you take when having an episode. When you think you are about to cry or laugh, change your position.
These tips are general coping techniques and are not substitutes for medical advice. Talk with your doctor about additional ways to cope with your PBA episodes and whether a treatment plan may be appropriate.
Research about PBA
Results of a 2010 National Stroke Association survey about PBA after stroke showed that:
53 percent of stroke survivor respondents reported symptoms of PBA based on their answers to the Center for Neurologic Study-Lability Scale (CNS–LS). This percentage is higher than the 6 to 34 percent cited in medical literature.
Fewer than one in five stroke survivor respondents were familiar with PBA.
About four in 10 respondents indicated that PBA episodes interfered with their social activities, including spending time with friends and family.
More than one-quarter of respondents suffering from PBA symptoms indicated that they experienced PBA outbursts frequently or often.
- Only about one-third (38 percent) of respondents with PBA symptoms were treated for their episodes.
Aphasia is an impairment of language, affecting the production or comprehension of speech and the ability to read or write. Aphasia is always due to injury to the brain-most commonly from a stroke, particularly in older individuals. But brain injuries resulting in aphasia may also arise from head trauma, from brain tumors, or from infections.
Aphasia can be so severe as to make communication with the patient almost impossible, or it can be very mild. It may affect mainly a single aspect of language use, such as the ability to retrieve the names of objects, or the ability to put words together into sentences, or the ability to read. More commonly, however, multiple aspects of communication are impaired, while some channels remain accessible for a limited exchange of information. It is the job of the professional to determine the amount of function available in each of the channels for the comprehension of language, and to assess the possibility that treatment might enhance the use of the channels that are available.
Varieties and special features of aphasia
Over a century of experience with the study of aphasia has taught us that particular components of language may be particularly damaged in some individuals. We have also learned to recognize different types or patterns of aphasia that correspond to the location of the brain injury in the individual case. Some of the common varieties of aphasia are:
This is the most severe form of aphasia, and is applied to patients who can produce few recognizable words and understand little or no spoken language. Persons with Global Aphasia can neither read nor write. Global aphasia may often be seen immediately after the patient has suffered a stroke and it may rapidly improve if the damage has not been too extensive. However, with greater brain damage, severe and lasting disability may result.
In this form of aphasia, speech output is severely reduced and is limited mainly to short utterances of less than four words. Vocabulary access is limited and the formation of sounds by persons with Broca’s aphasia is often laborious and clumsy. The person may understand speech relatively well and be able to read, but be limited in writing. Broca’s aphasia is often referred to as a ‘non fluent aphasia’ because of the halting and effortful quality of speech.
This term is applied to patients who have sparse and effortful speech, resembling severe Broca’s aphasia. However, unlike persons with Broca’s aphasia, they remain limited in their comprehension of speech and do not read or write beyond an elementary level.
In this form of aphasia the ability to grasp the meaning of spoken words is chiefly impaired, while the ease of producing connected speech is not much affected. Therefore Wernicke’s aphasia is referred to as a ‘fluent aphasia.’ However, speech is far from normal. Sentences do not hang together and irrelevant words intrude-sometimes to the point of jargon, in severe cases. Reading and writing are often severely impaired.
This term is applied to persons who are left with a persistent inability to supply the words for the very things they want to talk about-particularly the significant nouns and verbs. As a result their speech, while fluent in grammatical form and output is full of vague circumlocutions and expressions of frustration. They understand speech well, and in most cases, read adequately. Difficulty finding words is as evident in writing as in speech.
In addition to the foregoing syndromes that are seen repeatedly by speech clinicians, there are many other possible combinations of deficits that do not exactly fit into these categories.Some of the components of a complex aphasia syndrome may also occur in isolation. This may be the case for disorders of reading (alexia) or disorders affecting both reading and writing (alexia and agraphia), following a stroke. Severe impairments of calculation often accompany aphasia, yet in some instances patients retain excellent calculation in spite of the loss of language.
The National Aphasia Association (NAA) is committed to provide persons with Aphasia and their families with helpful information about existing therapies. However, the NAA does not endorse any specific therapy nor does it make any claims as to their effectiveness. News posts related to therapies should not be considered a recommendation to patients as to which therapy they should choose for their treatment. If you have any questions or concerns related to any of the NAA news posts, please email us at firstname.lastname@example.org
Coping with Depression: Signs You Might be in Trouble
When caregivers take on the responsibility of caring for a loved one, we expect our lives to change. What is unexpected, and often goes unnoticed, is the forfeiting of our own well-being in order to become a primary caregiver.
Ask yourself the following questions. If you answer, “Yes,” to any of them, you need assistance. Support groups, your loved one’s social worker, your physician, counseling or therapeutic centers and a number of other community resources can help you in providing greater balance between your caregiving responsibilities and your well-being.
Have you stopped communicating with friends you had before you became a caregiver?
Do you lack time to participate in activities that make you feel good?
Is your caregiving role negatively affecting your personal relationships?
Have you failed to have a check-up lately or find you do not follow the doctor’s recommendation for you own health?
Does your loved one need, but not have, a monitoring device?
Has your loved one become abusive towards you?
Have you noticed you are becoming verbally, physically or emotionally abusive to your loved one?
Are you drinking or taking drugs to cope with stress or distress?
Has your sleeping pattern changed since becoming a caregiver?
Do you feel you are not getting enough sleep?
Do you refuse to let others assist you, or give your respite, for fear something will happen if you leave you loved one in another’s care?
© Today’s Caregiver Magazine
For About and By Caregivers
When Stroke Happens
By Jennifer Bradley, Staff Writer
Strokes, or “brain attacks,” disable Americans more than any other disease. With an interruption of blood to the brain, a stroke may have similar symptoms; but as everyone’s brain is different, so are the effects of each person’s stroke.
There is no rhyme or reason to the severity of strokes or to the recovery a person may need to undergo. Stroke damage can affect a loved one’s entire body and cause a wide range of disabilities, from mild to severe. Paralysis, difficulty thinking and speaking, as well as a multitude of emotional issues are just some of the challenges a caregiver can expect to see a loved one experience post-stroke.
Learning to help through this transitional period with optimism and organization will make life easier, and happier, for both caregiver and loved one.
Even though each loved one has a different experience after a stroke, they have one thing in common: life is changed in some way or another. It’s important a caregiver know which type of stroke their loved one is facing, so symptoms, precautions and/or treatments can be tailored accordingly.
There are two kinds of major strokes. The most common, an ischemic stroke, is caused by a blood clot which blocks a brain’s blood vessel. The other, a hemorrhagic stroke, is caused when a blood vessel breaks and bleeds into the brain.
A different stroke, commonly known as a “mini-stroke,” is the TIA, or Transient Ischemic Attack. These should be taken as seriously as a major stroke because they are usually a precursor of what’s to come. The only difference is that in a TIA, the blockage in the blood vessel is temporary and the incident lasts less than five minutes— usually a minute.
Many strokes are not preceded by a TIA, but one-third of people who experience a TIA will experience a major stroke within a year. There are many new technologies available today to help prevent serious damage if the stroke is caught early on. Knowing the symptoms and signs may spare a loved one from permanent brain damage. Professionals say “time lost is brain lost” and that if a person is even suspected of having a stroke, call 911 immediately and don’t wait for symptoms to clear up.
Here are the main symptoms of a major stroke and TIA:
1. Sudden numbness or weakness in face, arms or legs, especially on one side of the body
2. Sudden confusion, trouble speaking or understanding
3. Sudden trouble seeing
4. Sudden trouble walking as well as dizziness, loss of balance or coordination
5. Sudden, severe headache
First Time Around
Not all strokes are caught in time. If a loved one is alone at the time of the attack, too much time may elapse before a call for help can be placed.
For caregivers who find themselves in the new world of caring for a loved one who just suffered a major stroke, there are a few things first-timers should now. From the initial trip to the hospital and through the recovery process, it’s important to take notes and keep records. The “Stroke Caregivers Handbook” from Stroke Awareness for Everyone (SAFE) recommends using two notebooks or three-ring binders with folders: one for notes for encounters with medical professionals and the other for records, correspondence, receipts and bills.
It’s important to keep an up-to-date list of medications, dosages and when prescriptions were filled. At each and every medical appointment, that information will be requested.
One particular piece of advice this handbook offers is to not pay any bills from medical providers until the claims are completely processed through the insurance. If a caregiver pays any portion of the bill, it essentially says that the payee takes full responsibility and revokes any ability to appeal the insurance in the future, if necessary.
There are a few symptoms a loved one can expect to face early on after a stroke. The first is aphasia, or difficulty communicating. This could range from complete loss of speech to the occasional difficulty finding a right word. Those with aphasia are mentally competent, thus making this a frustrating disorder for caregiver and loved one.
Another common symptom is subluxation of the shoulder on the stroke-affected side of a loved one’s body. This causes dead weight and needs to be supported so the shoulder does come out of its socket.
Breakdown of overall skin integrity and loss of bladder and bowel function are also symptoms present in those newly diagnosed with a stroke.
Depression and a wide gamut of emotional issues are something a caregiver must be aware of and tread delicately through with their loved one. It’s normal for a person to mourn the loss of their “old” self and caregivers should learn to practice empathy instead of sympathy, reminding a loved one that they are still alive and have much to offer, just in a new way.
The “New” Normal
After a major stroke, most people spend time in a hospital becoming stable enough to move on for rehabilitation,either at a special facility or home, depending on the caregiver’s availability and circumstances.
The “Stroke Caregivers Handbook” says that most caregivers who have been through this phase will not even consider outpatient therapy to begin with because a loved one will be very weak and need more assistance initially than they think.
Insurance companies may dictate where and how long a loved one can remain at a rehab facility, but caregivers are important advocates in these situations.
A loved one must begin to accept a new “normal” after a stroke. Many times, it’s hard to know what physical and mental limitations will improve with continued therapy. Only time will tell. The first thing to address at home is a loved one’s safety, especially in the bathroom. A loved one may also come home with a new set of habits which were formed around a different level of care, and most likely, the ability to move around in a secured environment. Caregivers must help establish a new routine within the living quarters available to their loved one, as well as availability of a caregiver. This also may mean meals are at different times than at the rehab facility and treats are not always served at 7 p.m., for example. A caregiver needs to decide which habits can be kept and which need to be tossed.
A caregiver will also be facing a change in routine and have a shock to their “normal.” The main thing is to accept reality and progress as it comes, even though it may not lead back to the way things were before the stroke. Family and friends may not understand and therapy visits will become less and less, leaving the caregiver and loved one to wade through the post-stroke life alone. There is hope and joy to be found in each situation, however.
Don’t worry, be happy
Depression is a very real side effect of a stroke, for both caregiver and loved one. Honesty about emotions is a first step to dealing with them and moving forward.
Studies show that an optimistic attitude reduces the risk of stroke overall, but affirmations and positive thinking are just as important after a stroke.
Frustration and discouragement will be normal, but even small victories should be celebrated and empower caregivers and loved ones to go the next step. A big hurdle is the embarrassment associated with not being able to function as before, especially in public. Caregivers should encourage public outings because it will lessen the likeliness of depression and lonely thoughts.
Positive thinking and expecting the best, not the worst, promotes health and prevention of future strokes. It also helps a caregiver keep their best health and attitude, for their new role and any others they may have.
Strokes are complex and affect both loved one and caregiver in a multitude of ways. With good organization, awareness and attitude, it can be handled in a way that leaves both fulfilled and enjoying life, whatever it may bring.