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Living with stroke
Fatigue
Foto: Christopher Olssøn

Difficulties after stroke that are not visible to the eye

It is not rare for injuries to arise that cannot be seen from the outside, but that can produce great problems. Here we explains some of these injuries.

Impaired mental capacity

After a stroke, most people notice that they have less mental energy and are more easily fatigued. Their mental energy is not what it was and they need more rest. Thinking becomes slower and harder. Handling multiple tasks simultaneously becomes difficult. Concentration over time becomes a challenge. It becomes difficult to grasp complex situations and adapt to new requirements. Perhaps you perceive situations differently from before, and can’t manage things the way you used to. With both your speed and your ability to solve problems impaired, it can be difficult to get used to your new life. It is easy to become irritated and frustrated. Getting used to all these changes is a challenge in itself. But if you can accept that your life will be different, it will be easier both for yourself and for your family members to live with the way things have changed.

Fatigue

Fatigue is an overwhelming feeling of tiredness that does not always disappear even with rest. You feel worn out, are unable to “get your strength back”, feel as if your energy is depleted, even when performing small tasks. Words often used to describe fatigue include post-stroke tiredness, brain exhaustion, energy depletion, fatigue, or feeling extremely unwell. Fatigue can influence everyday life in many ways. You might not have the energy to participate in activities that you would normally have engaged in before the stroke. Spending time with family, colleagues, and friends can be a strain. Many people feel as if they have no initiative. Because many people need an unusual amount of sleep and rest, it can be difficult to plan activities. In addition, fatigue makes people very sensitive to stress, so you are likely to be easily overwhelmed and stressed. Fatigue can feel like a hidden disability that can be difficult to understand and accept for others.

Some tips for people with fatigue:

  • When planning work and leisure activities, take your fatigue into account. Adapt your activities to how much energy you have each day, and accept that this is your new energy level.
  • Prioritise the most important activities and adjust your involvement to your new energy level. Many people have to economise on energy in everyday life. What do you need to prioritise today? What chores can wait?
  • Organise your day so that you set aside some time for rest before and after activities that are taxing. Pencil in time in your calendar for time to rest, and follow your plan.
  • Avoid situations that are especially demanding, unless they are important to you. Learn to say no when needed.
  • Let the people around you know why you need to a take a break from time to time to help you manage what you had planned to do together.
  • Physical activity and training can help, and also improve your quality of sleep. It is a good idea to choose an activity you were familiar with before the stroke and which you enjoyed, but start taking things very easily. You can gradually step up or adjust your efforts. If you become exhausted and fatigued, this could be because you have exerted yourself too much. Stop activities, including training, some time before you plan to go to bed.
  • Stick to a regular sleep schedule. Go to bed and get up at about the same time every day. Make sure that you have the right temperature in your bedroom and that it is dark. Don’t use your bedroom for television or being on the computer or your mobile phone.
  • The drugs’ side effects and some medical conditions can worsen fatigue. Discuss these matters with your doctor.

IN: Fatigue – photo credit – Christopher Olssøn

Cognition and cognitive impairment

The term cognition refers to the thought processes we use to acquire knowledge. We differentiate between verbal and non-verbal cognition. A stroke can produce many signs of cognitive impairment that affect everyday life. The nature of these problems is determined by how much damage the brain has suffered, and where it is located.

Language difficulties

When we communicate we exchange ideas, information, and experiences by means of language, non-verbal sounds, or tone of voice to convey feelings. We also use non-verbal social cues such as gestures, signs, body language, facial expression, and movements. For people who have had a stroke, communication can be affected by language disorders such as aphasia and other invisible difficulties such as apraxia, specifically oral apraxia and/or apraxia of speech (AOS). In addition, if muscle control in the face, mouth, lips, neck, or throat is impaired, speech can become slurred or low. This is called dysarthria.

AOS and oral apraxia make it difficult to perform voluntary movements, even where there is no paralysis. The difficulties arise due to problems in coordinating the facial muscles and the muscles in and around the mouth. The stroke patient may also have problems making specific sounds or forming words, or may say the wrong word – for instance, they may say “hat” instead of “cat”. Making sounds on request, e.g. whistling, can be difficult, even if they can sometimes make the same sound just a moment later.

Dysarthria is when control of the muscles we use to produce speech is impaired. This can lead to slow or unclear, slurred speech. The cause is poor coordination of the muscles. Sometimes speech can become quite incomprehensible, and communication aids can be helpful. Stroke patients with dysarthria, oral apraxia and AOS may benefit from seeing a speech therapist.

Many stroke patients are affected by the language disorder aphasia. When we produce language, we use both hemispheres of our brain. When the dominant half of the brain is injured, stroke survivors may have difficulties using and understanding words. This can result in writing and reading difficulties. The level of aphasia can vary from mild difficulties to profoundly impaired language function. Survivors may have problems understanding what is said and expressing themselves. Reading, writing, and numerical understanding, as well as interpreting written, spoken, or screen-based information, can be affected. Persons affected by stroke often pretend they have understood more than they have. In some cases it is the other way around, and family members underestimate the stroke patient’s ability to understand what is going on. Knowledge about aphasia and how aphasia can affect people’s lives can be very useful for family members and other people who engage with stroke survivors. The more we know, the easier it is to adjust our communication and make it easier to talk with people who are affected by aphasia.

Other brain injuries can affect non-verbal communication, for instance recognising and understanding facial expressions and understanding body language and humour. Some stroke patients can find it difficult to gauge which reactions are appropriate in a situation. People with pragmatic language difficulties can speak well and fluently but be unable to interpret mimicry, eye contact, gestures, jokes, or irony. They may struggle to stick to a topic in a conversation and to understand the emotional expression of the person they are speaking with, e.g. whether they are in a good or bad mood, are angry, happy, etc.

Communication difficulties can also arise for other reasons, e.g. impaired attention, changes in eyesight or hearing, memory problems, difficulty regulating behaviour, or impairments in the ability to grasp the overall picture. This can lead to problems in social interaction and lessen the ability to grasp what is being said.

Approximately one in four stroke patients are affected by aphasia. Assessment and training with a speech therapist is vital for these patients, and it is important to start the process of assessment, follow-up care, and language training quickly. Speech therapy must be adapted to the needs of the person with aphasia. This includes both the content of the training and its intensity. Some patients may benefit from adapted communication aids. Being knowledgeable about aphasia can help family members support stroke survivors. It is easier to start a conversation if people feel that they are met with understanding and knowledge.

Some advice for successful communication:

  • Prepare a good communication setting: Avoid distractions and background noise. Patients with aphasia may find it difficult to relate to many people in a single conversation. Before starting the conversation, make sure you have caught their attention.
  • Don’t use sentences that are too long; use everyday words. Make it clear that you have plenty of time. There is no such thing as an “embarrassing silence”. Have a listening attitude and say that you have plenty of time. Be patient and if necessary help the aphasia patient complete their sentence, but only if they want you to.
  • Improvement requires practice. Give praise and encouragement and use your body language to show when the conversation is moving in the right direction. If you don’t understand a person with aphasia, let them know. Don’t pretend that you understand. If necessary, you can end the conversation and make arrangements to wait a little and try again later.
  • Speaking in a loud voice or shouting at a person with aphasia does not help communication.
  • Allow the conversation to move between both speakers and help the aphasia patient to take their turn. If there is anything that is unclear, ask. Only correct the person affected by stroke when this is necessary to avoid any misunderstandings.
  • During the conversation, gestures can be used to underline the message. Examples include giving a “thumbs up” for “yes”, or “thumbs down” for “no”, clear body language, holding up fingers to emphasise numbers, holding a cup to the mouth if talking about drinking, and shrugging shoulders to show that you don’t know. Sometimes these gestures can make it easier to find the words.
  • Some people find it helpful to use writing or symbols/drawings to support their conversation. The aphasia patient or the person they are talking to can write down a few letters, words or numbers to help convey their message.
  • Communication difficulties can also arise for other reasons, e.g. impaired attention, memory, behaviour regulation, ability to grasp the overall picture, eyesight, or hearing. These types of impairments weaken the ability to grasp what is being said and capacity to engage in social interaction.

Other signs of cognitive impairment

Cognitive control functions (executive function)

Some people find that their overarching cognitive control functions are impaired. These are called executive functions. This is the ability to plan, organise, manage, assess, and control one’s acts and attention. For some stroke survivors, the ability to control impulses is weakened and their judgement and insight into their own circumstances may be reduced.

The weakening of concentration and attention is not usually visible to the surroundings and creates huge challenges in everyday life. It leads to being easily distracted from an activity, leading one to stop what one is doing and begin doing something else. It is difficult to focus on more than one thing at a time and it becomes easy to lose the thread of a conversation.

The list below includes techniques and strategies that can compensate for executive dysfunction and which are likely to help most people with cognitive impairments:

  • Make sure that your surroundings are tidy and well-organised.
  • Remove potential disturbances such as mess or noise.
  • Build routines (where things have a fixed place and things are always done in the same way), which everybody follows consistently.
  • Write check lists and follow them.
  • Use a memory diary and/or electronic reminders to help you remember things.
  • Write down short messages explaining what the person affected by stroke needs to do, or write down what they should expect.
  • Important information should also be put down in writing.
  • Divide up jobs into smaller parts.
  • Divide complicated information into smaller segments.

Learning and memory

Many stroke survivors find that grasping and storing (learning/remembering) new information becomes more difficult. Because their mental pace has become slower, it takes longer to learn new things. If the information is provided too quickly, it becomes difficult to catch it all. If a survivor also has impaired attention (a sign of executive impairment), keeping up becomes impossible. People with aphasia struggle a lot with remembering spoken or written information. Some find it especially difficult to remember directions and where to go.

Others forget faces. Some forget appointments etc. Diminished ability to learn new things and a poorer memory are common effects of stroke and can express themselves in a number of different ways. Fortunately, most people remember the knowledge they had before the stroke, such as their own personal history, the pin code for their mobile telephone, skills and knowledge from their professional life or studies, etc. It is new knowledge that can be difficult to recall.

Memory can be subdivided in different ways and different terms are used to describe different aspects of learning and memory. Our memory span and short-term memory make it possible for us to remember a new name long enough to repeat it or write it down at once. Our working memory is what we use to remember numbers long enough so we can do mental arithmetic without writing down the numbers, or plan a good move in Chinese chequers.

Unless we write down new names or a message or use some sort of mnemonic technique, it is quite common to forget this sort of information. There are a variety of good mnemonics, but they are much easier to use for people who are not cognitively impaired. For people who have had a stroke, it is most effective to write down what they need to remember, or to get others to help them remember. Another good tips is of course to make sure that one doesn’t need to rely on memory for a lot for new things.

Helpful steps include:

  • Keep a notepad next to the telephone where you can jot down telephone conversations and messages.
  • Request that all spoken messages also be given to you in writing, e.g. as a text message on your telephone.
  • Hang important information on a pinboard or on the door of the fridge.
  • Use your telephone’s alarm feature for reminders, or use other types of diaries.
  • Enter appointments on your telephone digitally, including an alarm that will notify you of the time, preferably an hour or a day before the appointment itself. This way, you will be prepared.
  • Keep bags, glasses, keys, etc., in fixed places, and always return each item to its regular place.
  • Secure important things so that they don’t go missing. For instance, use a cord for your glasses or a key chain to secure your keys to your belt.
  • Label the doors of your kitchen cupboard, so that you know what is inside.
  • Label the doors in your home, so you know what rooms they lead to.
  • All of the tips in the section on cognitive control functions are also useful for impaired memory.

You will find more information about memory problems on Sunnaas hospital’s web pages.

Neglect

Neglect is a very particular type of attention impairment. The person with neglect “forgets”, or completely or partially overlooks the left side of their surroundings and/or the left half of their body. This functional impairment occurs almost exclusively after strokes in the right half of the brain. If the person also suffers from visual neglect, he or she will not perceive visual information on their left side. Neglect is a form of attentional impairment that is linked to general attention impairment. People with serious neglect easily forget that they have an impairment and do not remember that they need to train up their level of attention. These patients require an additional level of help to initiate and complete attention training.

The best way to work on neglect is to integrate the training into everyday life activities. The stroke survivor must use the affected side as much as possible; using their right (“healthy”) arm to move their left arm does not help. To the contrary, they must concentrate on using their left arm or leg as often as possible. When wanting to focus the patient’s attention on the left side of their body, it can be helpful to use a mirror. Placing glasses, the mobile telephone, or other objects that are frequently used to their left is a good way of stimulating attention towards this side. Family members can address the stroke patient from his or her left, forcing the survivor to direct their attention towards the neglected side.

As neglect is a form of attention impairment, it is a good idea to work on building up a set of routines. Once one has done a thing often enough it gradually becomes automatic. However, it goes without saying that the number of tasks one can train in this way is limited. That is why it is important to choose the most important things, such as always putting on the wheelchair brake and taking off the foot support before getting up from the wheelchair, or washing hands after going to the toilet. There are also other methods to work on neglect, but neglect can’t always be trained away entirely. When there is a lot going on or when the person is tired, symptoms may resurface. Neglect can be dangerous for persons affected by stroke, both at home and when they are outdoors, e.g. due to traffic. In serious cases of neglect, it may be necessary to watch the stroke patient or put in place other measures to keep the patient safe from harm.

Spatial orientation and sense of direction

Patients who have problems with spatial orientation and sense of direction have trouble judging the distance to objects and performing actions in space. They may find it difficult to manage steps or cross thresholds, estimate the distance to the chair, or see where on the table to put the cup. They may find it especially difficult to find their way in new places.

People with diminished spatial orientation after stroke frequently also suffer from neglect and have reduced attentional capacity; moreover, many have lost their left-sided peripheral vision. Many find getting dressed difficult and sometimes put their clothes on inside out, do up their buttons wrongly, or have their arm sticking out of the neck opening rather than the sleeve. Examples of adapted actions to help include:

  • Spoken or practical guidance to help the stroke survivor do things in the right order
  • Helping them turn the item of clothing the right way around before putting it on
  • Using Velcro instead of shoe laces
  • Elastic bands in the waistband
  • Having contrasting colours on the table so that it is easier to tell where to put glasses and cups
  • Marking table ends, thresholds and steps with colour to focus awareness on them.

Apraxia

Apraxia is when a person is unable to perform normal actions – but this is not caused by paralysis, sensory impairment, coordination disorders, or impaired understanding or memory. This disorder become apparent in all types of actions, e.g. during personal hygiene, when eating, writing, drawing, talking, or imitating other people’s movements. The disorder may present in different ways. Sometimes the person with apraxia simply never initiates the action in question.

Often, they may perform the right action, but at the wrong time or place. If they are cooking and have just used a knife, the cutting movement may go on (perseveration) so that they keep on repeating the same movement, even when they are actually trying to use a cheese slicer. When brushing teeth, they might move the hairbrush to the mouth, before raising it to the hair. In cases of serious apraxia, one sometimes has the impression that the stroke survivor is confused or suffers from dementia. The person affected by stroke often notices that the movement is wrong and often feels ashamed or becomes annoyed, without, however, always being able to correct the action.

In milder cases, others might not notice the impairment before the apraxic person shows sign of exhaustion or stress. Even then, the apraxia may only manifest itself through a short waiting period or hesitation before performing the action.

Usually, apraxia is especially noticeable when the patient concentrates on performing the action correctly. When they relax and are not thinking about what they are doing, they can often do it perfectly well. There are different degrees of apraxia, but typically all apraxia patients vary in their ability to perform actions. A person with apraxia may struggle with an action one moment and manage perfectly well and naturally in the next. People with serious apraxia are not allowed to drive.

Apraxia is common among stroke survivors who are also affected by aphasia. Sometimes it can be difficult to know whether the reason an action is not performed, or performed hesitatingly or incorrectly, is aphasia, apraxia, or something else.

In many cases, the person in question will need to be given practical and spoken guidance to perform a task. Sometimes using one’s hands to guide the person with apraxia through the action can help them get started or to complete the action.

To date, no effective training programmes with a durable effect have been identified, but there are some steps than can improve things:

  • Allocate plenty of time for each task. Be calm, patient, and gentle. Stress and the pressure resulting from expectations can trigger apraxic symptoms. In some cases the person with apraxia performs best when no one is watching.
  • It is easier to do things if the surroundings are well-organised to reduce distractions. Don’t have more utensils lying ready than are required for the task at hand. If you are about to brush the teeth, only have the toothbrush and the toothpaste within reach.
  • If spoken guidance doesn’t work, use your hands to guide the person affected by stroke through the action, so that things are done in the right order. For some people, it helps if the action is demonstrated in the mirror; others need to be hand-guided through the motions.
  • Try to prevent and avoid embarrassing situations. If the stroke survivor is moving the toothbrush towards their hair, direct it towards the mouth instead. In this way, they won’t feel stupid. Humour can be helpful to defuse situations, for instance by simply laughing it off if something is done “wrongly”. Acceptance and humour can relieve the situation, but don’t overdo it.
  • Sometimes the right thing to do is to perform the activity for the person with apraxia, so they don’t need to exert themselves. Remember that stroke survivors tire easily and may need their energy for something more pleasant or important.

Assessment, facilitation, and adjustment

If the stroke survivor reacts in a way that is different to before the injury, this may be because they are not as able to handle challenges as before. It is important to assess changes in the ability to function, primarily to help the patient and their family members understand why tasks that used to be easy and required no effort have suddenly become difficult. Based on the assessment, circumstances can be adapted to suit the stroke patient’s capacity and abilities. In some cases, it can also form the basis for goal-oriented training to improve cognitive functioning, for measuring improvements, and understanding what expectations are realistic.

A neuropsychologist or other person with specialised knowledge about life with cognitive impairments can undertake a neuropsychological assessment to provide recommendations and guidance.

Emotional reactions

The following emotional reaction are normal after stroke:

  • Anger and bitterness: Thoughts such as: “Why did this happen to me? What have I done to deserve this?”
  • Fear and nervousness: Worries about the future, about how much improvement can be expected, about having another stroke, or other concerns.
  • Denial: Behaving as if nothing has happened because it is too painful to accept.
  • Embarrassment: Feeling odd or ashamed about not functioning the way you could before the stroke.
  • Frustration: Losing patience with yourself and your family members because you are unable to do things the way you used to. You might feel that other people treat you differently or don’t understand what you feel or are trying to tell them.
  • Sadness: Grief at losing functions you used to have, or sadness that you can no longer have the same dreams for your future.
  • Feelings of guilt: Feelings of guilt for the load placed on the family due to your stroke, and/or because you need more help and support than you used to.
  • Loneliness: The feeling of being the only one going through what you are going through, and that no one else understands how you are feeling.

Depression and anxiety

Many people have symptoms of depression after a stroke. Going through a stroke involves going through a crisis as one’s entire life is transformed. Having functioned independently, some people suddenly need help to go to the toilet, get dressed, or move about. For many, the stroke makes them unable to work and they have to rely on disability benefit. As a result, they lose their professional identity, contact with their colleagues, and their income. Often keeping in touch with friends becomes difficult. Many go from being a person that gives to society to feeling like a burden. In addition, many stroke survivors live with pain and/or develop sleep problems. Each of these factors is known to be a contributory factor to depression in its own right. In fact, depression is just as common among people who suffer other injuries and diseases that result in comparable impairments, pain, and dependency as among stroke survivors.

Many stroke patients develop depression, which is a psychiatric diagnosis that involves distinctive and severe consequences. But it is more common to react with grief. Low spirits and feeling sad and dejected are normal reactions. Even though grief in most cases is a passing reaction to serious illness, it can develop into long-lasting depression. Life after stroke can be an enduring strain, which can trigger depression after a few years. The stroke survivor may become emotionally exhausted from bearing up, mastering demands, and being positive. Being depressed reduces the motivation to train and desire to live, and psychological therapy and/or drug treatment may be required. Physical activity can help ease the mood and can form part of the treatment for depression.

Being disposed to cry easily, lower motivation and initiative, and emotional flatness are all symptoms that can be both the consequence of depression, i.e. mental health/psychiatric symptoms, and direct organic (physiological) consequences of the stroke, i.e. not due to any psychological reaction. Only a specialist can assess the reason behind the symptoms. Drug treatment for depression can be harmful for people who do not have depression, and can increase a tendency to apathy.

Anxiety disorders are also very common after a stroke. Sometimes they are a consequence of feeling helpless, uncertainty about the future, and having lost the feeling of overall understanding and being in control of everyday life. The fear of further strokes can be especially trying. If anxiety comes on top of the limitations experienced by some stroke survivors, it can make them even more dependent. Anxiety and depression often occur together, but they can also occur separately. People who enter a vicious circle of anxiety and depression can be prone to social isolation. This includes both the patient and their family members. In some cases, their networks pull back, leaving those who have suffered a stroke with fewer people to support them. As a result, the entire family suffers.

Some helpful advice:

  • It can be helpful to meet other people who are going through similar things. Both you and members of your family can join conversation groups, networks, or organisations for stroke survivors or for persons struggling with aphasia specifically and/or their family members. 
    Sharing your feelings with others will make you feel less lonely. Telling one another about personal experiences feels good, both for yourself and for the people in your life.
  • By learning more about stroke, both you and your family members will come to feel more confident and better understand your own reactions. Knowledge helps bring down anxiety and feelings of insecurity, as well as enhancing a sense of mastery.
  • Taking part in affirmative processes is good for us. Think positive thoughts and concentrate on the successes you have achieved along the way. Sometimes it can be helpful to look back and take stock to get a clearer picture of the progress one has achieved through the rehabilitation process.
  • Being engaged, hobbies, and other areas where you experience a sense of mastery can help you. This helps shift your attention away from your own illness, and will help you move on.

Your G.P. has an important role in treating and following up any anxiety and depression. The G.P. will assess whether drug therapy is appropriate and may refer you on for other treatment if required.

IN: Woman – photo credit – Shutterstock

Changes in personality

In addition to causing impairments to physical and sensory capacities and affecting verbal and non-verbal cognitive abilities, stroke can also impact survivors’ emotional life and even their personality. Some family members describe changes in personality, to the extent that it can be difficult to recognise the stroke survivor. Stroke patients sometimes react differently from the way they used to; in some cases, existing personality traits can become reinforced.

Some stroke patients develop apathy, a lack of involvement, and problems initiating activities because they lack motivation. Occasionally these changes are erroneously interpreted as depression.

It is even more common for stroke survivors to become short-tempered and irritable. As mentioned above, the regulation of conduct may become impaired, and persons affected by stroke can sometimes act without reflecting first and come across as uncritical, rude, or inconsiderate.

Many become egocentric, and can only view a situation on the basis of their own needs and point of view. At the same time, persons affected by stroke can struggle because of language problems or changes in their ability to tolerate things. This may lead to frustration and losing control of oneself. Many feel ashamed and have a sense of failure.

Living together and interacting

The way people work and communicate together after a stroke can change. Because the stroke patient does not grasp information and process it the way they used to, misunderstandings are likely to occur more frequently. It becomes difficult to use arguments in discussion.

Many family members feel that everyday life is dominated by the changes in behaviour and life circumstances of the person affected by stroke. They organise their everyday life to meet the needs of the stroke patient and end up neglecting their own needs. It is important for family members to know what they should spend their energy on. They need time to themselves, to “recharge their batteries”, and give priority to their own needs, too. In order to make everyday life work, everybody has to be accommodating, patient, and understanding.

To address the challenges that arise, it may be necessary to try to get help and guidance externally, such as from the family counselling service. Communication is important.

Feeling that you cannot engage in social interaction the way you used to can be frustrating. If the stroke survivor also has problems expressing emotions, communication is affected even more. Some people become more prone to tears. Others find it difficult to delve deeply into a topic. It may be difficult to put feelings into words and they might end up saying things they didn’t mean to say.

Good advice to promote communication:

  • Say what you want to say clearly. Be specific. Don’t “beat about the bush”.
  • Adapt the information you give to the abilities of the listener so they can understand what you are trying to say.
  • People can’t read minds – say what you have on your mind.
  • Make sure to give compliments, hugs, and offer positive feedback frequently. Ask the person who has had a stroke to do the same if they are unable to grasp your needs on their own.
  • Be respectful of each other, also in the way you communicate. It can be a good idea to ask again, so that both sides are sure that the message you understand corresponds to what was said in the first place.

Sex and intimate relationships

A stroke can have an impact on your sex life and intimacy. People sometimes have sex more rarely because one or both partners feel less desire, but there can also be practical reasons. It can be difficult to accept and live with grief and the sense of loss. This can affect the relationship and how people respond to each other. Sometimes, the roles in the relationship are changed from partner to caregiver. There may be a need to ask for help and advice, also about intimate questions. For some people, their sex life changes from having sexual intercourse to sharing physical closeness, giving massages, or being caring in other ways.

These can be good ways of expressing love to one another.

Being together sexually is an important way of showing love and strengthening your relationship. However, talking about sex can be complicated and embarrassing. If you are open and able to talk about intimate matters it is easier to do something about these problems. After a stroke, there are many circumstances that can impact on one’s sex life.

  • It is not unusual to feel dejected and depressed after a stroke, and you may feel less interested in sex. The desire and energy for sex can sometimes disappear.
  • In some cases, the stroke diminishes normal inhibitions, making it difficult to control both the way a person behaves and how they think. Other people may get the impression that the person has stronger desire/sexual power, but often it is just that the desire has become more noticeable. The person doesn’t realise they are acting inappropriately and may require help and guidance from a specialist.
  • Drugs can inhibit desire, the woman’s ability to secrete fluids from the vagina, and the man’s ability to have an erection.
  • Exhaustion/fatigue, poor control of the bladder (incontinence), or reduced physical sensations are normal consequences of a stroke, all of which can hinder desire. The fear of subjecting the body to a high pulse and blood pressure can further inhibit desire and sex drive.
  • Many stroke patients have other illnesses, such as high blood pressure, diabetes, heart disease, or epilepsy which can weaken the libido and sexual power. A lack of desire, problems having an erection, dryness in the vagina, and difficulties in reaching an orgasm are among the issues that could complicate sexual relations.
  • Changes in the hormonal balance, especially after strokes that affect the pituitary gland and the hypothalamus, which are the parts of the brain that control hormone production, can result in sexual problems.

What can you do?

  • To address any sexual problems it is important to talk about them with your doctor and romantic partner. You are not the only person with problems like this. If it is very difficult to bring up the issue, you may need to consult a relationship therapist.
  • If you feel down or depressed, you may need to speak to your doctor.
    Drugs such as antidepressants and/or conversation therapy may help. Some antidepressants weaken the sex drive.
  • Worry and anxiety can reduce sexual desire. Give things time. Make sure you are well-rested and feeling fit. There are many good ways of showing your feelings and being close. Most people like being touched, stroked, kissed, cuddled, or massaged. Friendship and emotional closeness can be more important than having sex.
  • There are drugs and a variety of methods for both women and men to enhance their ability to have intercourse. In some cases, drugs that reduce sexual desire can be switched for other drugs – but never stop taking drugs without consulting a medical professional.
  • If you are afraid you might wet yourself, you could develop a routine of emptying your bladder before you have sex. Using a sheet that you don’t mind soiling means you don’t have to worry.
  • Practical problems can be overcome. Find suitable positions that are not too exhausting. If you lie on the weaker side of your body, you can use your good arm. Make sure you have a comfortable bed. You can use pillows to support the body. Get a lock for the door. Get a babysitter for the kids.

(The paragraph on relationships and sexuality is an excerpt and builds on the English factsheet ”Sex after stroke” by the Stroke Association, UK – and which is available on their website www.stroke.org.uk. The text was translated into Norwegian from English with permission from the Stroke Association in England and quality-assured by Hilde Bergersen, specialist psychologist, Sunnaas hospital HF).