Living with stroke

In this chapter we will describe some of the problems associated with these sequelae and come with a few suggestions for how to manage life with these disabilities. After each paragraph you will find some exercises that target the problem area discussed. You could use these exercises to supplement those from your physiotherapist, occupational therapist, and/or speech therapist, or do the exercises in this section on the days you are not having therapy.

Your safety and that of your helper is the first priority. If you have any “red flags” or if an exercise raises any “red flags”, you must not do it.

RED FLAGS:

If you have one or more of the following symptoms or if they arise during the training, you should stop doing the exercise and rest and – if you are alone – immediately contact your therapist:

• Any pain during the exercise
• Sudden dizziness
• Irregular heartbeat
• Chest pain
• Unusual shortness of breath
• Unusual headache
• Cloudy vision
• If there is any danger of falling

Training on your own is very important. The normal amount of training with a therapist is 45–60 minutes on average, five times a week at a rehabilitation clinic. After this, it is normal to have follow-up rehabilitation with two 30-minute sessions a week at your home. There is evidence to show that exercise intensity – i.e. duration and frequency – is linked to how quickly and to what extent stroke survivors are able to recover physical functions and independence in ADL (activities in daily life).

Muscle weakness and paralysis

Full or partial paralysis (impaired muscle power) is one of the most common consequences of stroke. Stroke can lead to varying degrees of paralysis, impairing survivors’ ability to function, with paralysis affecting large parts of one side of the body, e.g. the face, arms, or legs. Minor paralysis can present as having less strength in the hand or fingers, or facial paralysis – usually only on one side of the body. The nature of the functional impairment will depend on the size and location of the brain injury. Different degrees of paralysis can reduce mobility and impair a person’s balance or coordination.

If the stroke has produced any paralysis, you should start up stroke exercises at an early point. This will help you regain a certain ability to function and move. The brain has an inherent ability to reorganise itself after an injury as new brain cells develop, but the most important thing is that other parts of the brain can take over the functions which the damaged part of the brain used to handle. To achieve this, the brain needs to be stimulated through action-triggering signals. All actions count: everything from morning hygiene including brushing your teeth to practising to walk and training your sense of balance.

Training natural movement patterns without using your strong side to compensate is very effective.

There is a possibility that you will develop muscle spasticity. Spasticity is increased muscle tone in the affected half of the body, making it difficult to perform even and precise movements. Pain, twitches, cramps, and after some time impaired function and movement are quite common.

The following are vital:

• Beginning physiotherapy early on
• Training that progresses at a good pace and according to your needs (training must be adapted where required)
• Evaluation

Exercises for paralysis:

For the face:

Gently massage the face to stimulate nerve impulses (red flag: over-sensitivity to touch).

• Sit in front of the mirror and make faces: Smile so all your teeth show; pout (make a kissy face); blow out your cheeks; whistle; make a grimace face (lips turned downwards); run your tongue along your lips and teeth; wrinkle your forehead.
• Fill your mouth with water: Move the water from one side of your mouth to the other; pinch your lips together and clench them together while you (or a helper) gently press on your cheeks (trying to get you to squirt out the water).

For your hand (with your lower arm lying on the table):

• Lay your hand on a towel, palm facing down – slide the towel to either side, slide it forwards and backwards, make circular motions on the table with your hand.
• Lay your hand on a towel, crumple the towel into a ball without lifting your lower arm.
• Crumple a piece of paper or newspaper into a ball, place your lower arm on the table at the same time as you lift and drop the paper balls onto a plate.
• Lay your hand on the table and spread your fingers, palm down, and try to lift your fingers one by one, without moving any of the other fingers.
• Move your thumb in a circle; move your thumb and little finger towards each other so the tips of the thumb and finger meet (finger-to-thumb opposition).
• Clasp your hands, interlacing your fingers, and let your thumbs circle around each other.
• Fine-motor exercises such as buttoning, turning keys, turning light switches on/off, or screwing things on/off (bottle caps, screws, and nuts).
• Index finger and thumb: Pick up differently-sized object (coins, dice, pens, pins).
• Build Lego/Duplo or do puzzles.

For your hand, lower arm, and shoulder:

• Take some plastic beakers and set them on a surface upside down; put them inside one another, or build a pyramid or tower with them.
• Try to flick away a plastic beaker with your thumb or index finger at different heights.
• Small stick: Hold the stick in front of you, keeping your arm and elbow straight. Turn the stick around.
• Small stick: Hold the stick with both hands. Stretch out your arms in a straight line in front of you, with the side of the arm pointing up. Gently lower the stick, keeping your elbows quite straight.
• Small stick: Lift up the stick as far as you can; this can be done sideways or straight ahead.
• Small stick: Hit the table rhythmically with the stick.
• Small stick – stick and towel: Make a flag and wave the stick about, trying to avoid the towel falling off the stick.
• Small ball: Slightly bend and place your thumb (or index finger) on a ball and try to roll it away from the hand (straighten your fingers).
• Small ball: Without letting go of the ball, roll it on the table, as far away from your body as you can (you can vary this exercise by using the palm or the back of your hand).
• Small ball: Drop/throw the ball into a bucket.
• Push objects around. If you have a helper, try pushing them while you are sitting. You can vary the exercise by alternating between pushing them away and pulling them towards you.
• Place your hands on the arm rest or the wheelchair; try pushing down so hard that you lift up your buttocks.

For the legs:

Lying down:

• Lie down on your back and use your big toe to draw all the letters of the alphabet in the air.
• Spread your toes as far apart as you can.
• Tense all your muscles in your foot as hard as you can; count to three, and relax them completely.
• Place your foot on a towel and let it slide sideways, or up to your buttocks..
• Bend both knees. If you need help, your helper can help you move your foot. Let your knees drop slowly to one side before turning them to the other side.
• Pull up both knees so they point at the ceiling, put your feet flat onto the mattress; if required, your helper can grip your ankles and press them down onto the mattress. Using your legs, push off and lift up your buttocks.
• Pull up both knees, pulling them as far towards your abdomen as you can; if required, the helper can hold the legs up against your body. Tilt your pelvis/buttocks: upwards, downwards, then sideways.
• Lift both legs up into the air and cycle them in the air rhythmically. If you need help, your helper can help you with your weak foot.
• Lying on the side: Lift the uppermost leg up into air, as high as you can. Make sure that the knee is quite straight and that the leg is fully aligned with the rest of the body forming a straight line. If required, the helper can help with the exercise by giving the leg some resistance.

Sitting:

• Tense the muscles in your buttocks as much as you can. Alternate between your right and left side.
• “Scooting on (walking with) your buttocks” Lift your right buttock and push your right knee forward. Relax the muscles on your right side. Then, tense your left buttock and push your left knee forward. If you are doing the exercise correctly, your body will move forward to the edge of your seat. To “walk” backwards, first lift up the buttock and then draw the hip backwards. Your helper can help you by pushing against your knees.
• Sit straight up and try to stretch your head towards the ceiling. Cross your arms across your chest. Rotate your torso to one side as far as you can and try to look behind yourself.
• Keeping your knees bent, lift up one of your knees as far up as you can, pointing at the ceiling. Do the same with your other leg.
• Lift one foot up in the air and forward, make circular movements, or use your ankle to draw the letters of the alphabet.
• Place a small towel under your foot. Let the foot slide as far forward as you can on the floor; then slide it back towards yourself and as far as under your body as it will go.
• With a helper: Sit with your feet on the ground and knees bent. Your helper should place their hands on either side of your knees. You should now press both knees outwards without moving the legs, at the same time as your helper resists your movement.
• Standing up and sitting down. If you need it, have a chair stand in front of you for support. Get up from your chair; then sit down again, slowly. The slower you do this, the more difficult the exercise is.

Standing: You can stand by a table or something else you can hold onto.

• Get up on your toes. Stretch your knees, lift up your heels from the floor, think that your head is pointing to the ceiling. If you need help, your helper can make sure that your knees remain straight when you are on your toes.
• Lift your toes up from the floor. Shift your body weight to the back and onto your heels and try to lift the toes up from the floor.
• Stand on one leg. Lift your other leg out to the side.
• Stand on one leg. Lift your other leg – first forwards and then backwards.
• Stand on one leg. Place the other leg on a towel. Slide the foot on the towel as far backwards or to the side as possible. Make sure that your body remains above the leg you are standing on (the foot that is not standing on a towel).
• March on the spot. Vary your marching: lift your knees high up in front of you and kick your buttocks with your heels.
• Squat. Hold on to the table in front of you, stand with your feet hip-width apart. Calmly bend your knees and hips so that you come down and your buttocks approach the floor. Tense your leg muscles and stand up straight again.

Changes in sensation

After a stroke, sensation in parts of your body can be lost entirely or change. There are different levels of deficit and sensory impairments can present in many ways:

• Difficulties in distinguishing hot from cold, sharp objects from blunt objects.
• The way in which you sense pain may change and even gentle touches may feel painful. This is called hypersensitivity.
• Generally reduced skin sensitivity, or a feeling of numbness/having a numb area, so-called hyposensitivity.
• The feeling in your joints and skin may change, or disappear.
• Neglect.

If your ability to distinguish hot from cold has been impaired you may not be able to feel whether the water in the shower is the right temperature, or that the oven is hot if you accidentally touch it. Your arm or leg could end in a potentially harmful position without you noticing. This means that you must be extra attentive to such problems.

Sensitivity exercises

Impaired skin sensitivity (hyposensitivity, also known as hypoesthesia):

Make sure to check your skin regularly to avoid it getting sore.

• Use an electric toothbrush and stimulate the impaired skin area. Begin with the skin areas where sensation is normal, and work your way towards the impaired areas.
• Use a rough washcloth and massage the affected skin area.
• Stroke and apply different levels of pressure repeatedly, moving from your good side to your bad side.
• Alternate between applying cold and heat to the area, no more than one minute at a time (use an ice cube and the palm of your hand).
• Use a spiky massage ball (you can buy these at sports and fitness equipment shops, or as dog toys or laundry dryer balls) and roll it around on your skin.
• With a helper: Draw symbols (circles, squares, hearts) or write numbers on the skin while the stroke patient keeps their eyes closed and tries to guess the symbol you are drawing.

Excessive sensation in the skin (hypersensitivity, also known as hyperesthesia):

If you have excessively sensitive skin, it is important to always be observant. You can use your eyes to make sure that the pain you feel on your skin doesn’t signal injury or harm. Use a small brush (a painting or make-up brush) and brush your skin gently, moving from the normal skin area to the hypersensitive area.

• Take a cotton wad and use it to gently brush your skin, moving from the normal skin area towards the hypersensitive area.
• If you are not overly sensitive to cold, use an ice cube on the area. Use the ice cube to draw numbers or symbols on the skin.
  Impaired joint position sense (proprioception)
• With a helper: The helper takes hold of the weak hand or foot. Next, the helper tilts the outermost finger or toe joint up or down. Keep your eyes closed. Try to guess if the outermost joint is pointing up or down.
• With a helper: The helper takes your hand or foot and bends at an angle. With closed eyes, try to mirror/copy the same position with your non-affected side.

Difficulty swallowing (dysphagia)

Many stroke patients have difficulties swallowing, especially in the beginning. There may be multiple causes, such as paralysed muscles and reduced sensitivity in your mouth and throat.

All stroke patients should have their swallowing function tested when they are admitted to hospital. In some cases, health workers need to find the right food consistency. Wrong consistency combined with impaired sensitivity can lead to the food entering the wrong pipe and not going to the stomach. Food or drink that enters the windpipe can result in pneumonia. Constant coughing and having to clear one’s throat after a meal can be a symptom of eating or swallowing difficulties. Weakened muscles in your mouth, lips, or chin may lead to the food ending up at the back of your throat, or falling out of your mouth. In some cases, stroke patients need to be provided with nutrition and fluids though a feeding tube. Feeding tubes can be temporary or a permanent solution (PEG tubes).

Training helps, also if you have swallowing problems. Your swallowing training should be with a speech therapist or specially trained personnel. The food or drink you train with must have the right consistency. Adapting the consistency and facilitating safe intake of meals can be decisive for the outcome of dysphagia. You may have to avoid food such as chops and nuts, but food with a smooth consistency will be manageable. Stimulating and training the muscles in your oral cavity helps reduce the risk of aspiration, which is when food comes into the lungs. If you find that meals can take a long time, you can supplement your intake of food with nutrition from the feeding tube. Eating can be quite tiring and the social setting surrounding meals is often different from before. Some stroke survivors prefer not to eat with other people as they always have to mind their swallowing difficulties. Even if you are unable to eat yourself, it is important to take part in meals as social events.

Dental health

Stroke survivors often have problems with their teeth. Dental health problems can be caused by paralysed muscles in the face, mouth, and tongue, as well as impairments in the way the oral cavity and throat work, all of which affect the ability to maintain oral hygiene. In addition, using cutlery and the toothbrush may pose difficulties if the stroke patient has problems using their arms and hands. It becomes more difficult to maintain good dental hygiene, affecting the state of the teeth.

Stroke patients describe different practical problems. During meals, they can have difficulties swallowing, opening their mouth, biting off food, and chewing. The tongue doesn’t work the way it used to. Many report that their dentures don’t sit the same way, and they need more time for their meals.

Others say that handling the food on the plate can be difficult, for instance because of impaired hand function, difficulties seeing, or because they struggle to understand how to use the eating utensils. For some, mealtimes become full of fear, uncertainty and shame, and trigger feelings of isolation. Mealtimes stop being the social experience they used to be.

Swallowing difficulties also affect quality of life and the consistency of the food plays an important role here.

Actions:

• Make sure to clean your oral cavity after each meal. Because you are less sensitive, you may not notice if there are rests of food left. Rinsing the mouth with a saline solution can be helpful.
• Brush your teeth with a toothbrush in the mornings and evenings, preferably with an electric toothbrush as they are more effective. Electric toothbrushes can also be easier to hold for people who are less able to grip.
• Use toothpaste containing fluoride and/or other fluoride products every day. If you develop sores or a fungal infection you can use a chlorhexidine product, e.g. Corsodyl mouthwash.
• If you can’t manage your daily oral hygiene by yourself, ask for help. Our mouths are intimate zones and it can be difficult to ask for hygiene help in the mouth.
• Have regular check-ups with your dentist. False teeth often have to be re-fitted after a stroke because the gums change and dentures may need to be attached differently. If your municipality gives you home help services you are also entitled to free dental care from the public dental service.

You can prevent dry mouth through good oral hygiene, plentiful intake of fluids, lozenges, or sugar free chewing gum. You can also use saliva replacements, either as mouth spray or gel, but the most important factor for dental health is good oral hygiene.

Vision problems

Depending on which part of the brain has been injured, your vision may have been affected by stroke. As many as 65 per cent of stroke survivors develop vision problems. The most common post-stroke vision problems are:

• Visual field loss, where part of the vision field disappears. Most commonly, the right or left half of the visual field is lost for both eyes. This is called hemianopia.
• Eye movement problems. Our eye movements are controlled by muscles, which can be affected by a stroke. If you have ocular motor problems, you may develop double vision (diplopia) or have problems reading and watching television. Your depth vision may also be affected.
• Reduced visual acuity. When acuity is impaired, you see less clearly and contrast sensitivity is reduced.
• Perception problems. The most common perception problem after a stroke is visual neglect. People with neglect fail to absorb visual information from one side, even though their visual field is actually intact.
• Stroke survivors can have several types of vision problems at the same time. Often stroke patients don’t notice their vision problems themselves and attribute their problems to other things. It is therefore important that all stroke patients have their vision function examined, both in the acute and the rehabilitation phase. Rehabilitation is possible and there are compensatory measures. Vision problems can create difficulties in orientation, spatial sense and sense of direction, facial and shape recognition, and organisation. It is important to be thoroughly informed about the state of your vision function. If you contact a vision therapist, they can give you guidance about the use of aids, including computer programmes, that can help you work on vision compensation therapy. A vision therapist can also advise you and give you the right exercises for your vision problems. Norges Blindeforbund (The Norwegian Association of the Blind and Partially Sighted) has blindness and low vision rehabilitation and support centres which offer on-site courses for people with post-stroke vision problems.

Exercises:

• Put up post-it notes numbered 1–9 all over the wall – not in order of ascendance. Close one eye at a time and find the numbers in the right order, either 1–9 or 9–1.
• With a helper: The helper says the numbers out loud (not in order). After each number, stretch out your arm and touch the right number.
• With a helper: Your helper can prepare simple arithmetic exercises, with answers ranging from 1–9. Do the exercise in your head and stretch out your hand to point at the right number (for instance 14-7 or 2+3).
• Kim’s game: Place a number of different objects on the table, covered by a cloth. Lift the cloth and spend one minute memorising the objects. Cover the objects with the cloth and say the names of the objects out loud.
• Do puzzles.
• Build Lego or Duplo.
• Use a deck of cards and build a house of cards. Try building a pyramid by balancing two cards against each other at a time.
• Plastic beakers: Place plastic beakers upside down and on top of each other to build a large pyramid.

Advice and tips for stroke survivors struggling with vision problems:

• Access vision rehabilitation services through your municipality or the Norwegian Association of the Blind and Partially Sighted.
• Set realistic goals.
• Make sure to get enough rest and avoid over-exertion.
• Learn to use your gaze to compensate for the loss of vision field.
• Keep things you need in fixed places.
• Explain to the people in your life that re-arranging furniture and keeping things in new places is difficult for you.
• Get hold of aids such as special lamps with dimmable lighting, light sensitivity glasses with filters, low vision optical devices (magnifying glasses, electronic optic devices), image-enlarging video systems, and audiobooks.
• For many, the most important assistive device is their smartphone: Using the speech-to-text function, you can use your telephone to write and send texts and emails, use smart apps, and surf the internet.
• When you are a pedestrian, be defensive in relation to traffic.
• Use a white cane if you need one, but take a course to learn to use it correctly.

Source: The Norwegian Association of the Blind and Partially Sighted

Other senses, such as hearing and the senses of taste and smell, may be affected after a stroke, both in the acute phase and in some cases permanently.

Impaired balance

Having a stroke can impact your sense of balance. Our ability to sit, stand, walk, and everything we do when moving about, depends on our sense of balance. If this is impaired, you are at greater risk of falls. Many stroke patients with balance problems need an assistive device to help them move about in everyday life. It is also common to feel more insecure when you walk. This can lead to a vicious circle, often resulting in inactivity because people can be too afraid to move about.

Impaired balance can be caused by paralysis, reduced sensitivity, or vision problems – or by an injury in the cerebellum’s coordination centre. Controlling your body and estimating distances in the space around you may be difficult. In many cases, people need assistive devices or help from other people to move about in the beginning.

Training your balance will reduce falls. You should train your balance function three times a week, if possible divided into short sessions of ten minutes each. It is a good idea to stand up and hold onto a steady chair or railing if you need some extra support. Here are some examples of simple exercises you can do at home:

Sitting: Feet flat on the floor.

• Bend sideways and try to keep your elbows straight down alongside your body, as close as possible.
• Lean and stretch towards objects at different heights. Your helper could move the objects farther away to make you stretch farther.
• Throw a ball against a wall or to a helper. Use balls with different weights.
• Using both hands, hold a stick. Stretch the stick as high up in the direction of the ceiling as you can without toppling over backwards.
• Using both hands, hold a stick. The helper should throw a soft ball. Try to hit the ball with your stick (careful so you don’t fall).

Standing: Stand close to a table or something else you can hold on to.

• Stand on one leg. If you need, you can place your fingertips onto the table to help you. Count how many seconds you are able to remain standing.
• Stand on one leg and make circular movements with the other leg.
• Stand on your toes.
• Stand on your heels.
• Stand with your feet close together. Place your feet side by side, as close as you can, and count out loud how many seconds you are able to remain standing like this.
• Stand with your feet close together. Move your gaze (not your neck) as far to the right as you can, and then do the same to the left. You can also look up at the ceiling, and then down at the floor, as far as you can.
• Stand with your feet close together. Turn your neck sideways and move your gaze as high up to the right as you can. Then, do the same turning to the left and looking as far to the left as possible. Imagine that you are drawing an X in the air.
• Stand on one foot, lift the opposite knee up so you have a 90-degree angle at the hip and the knee. Tilt your pelvis/buttocks up and down while keeping your balance.
• With a helper: Throw a ball or let the helper hold objects for you to reach and touch at different heights.

Walking:

• Walk sideways. You can vary your walk by crossing your feet in front of or behind you.
• Walk straight ahead, but vary your walk by moving your neck and your gaze from right to left; alternatively, you can look down at the floor and then up at the ceiling.
• Walk straight ahead. Hold a little ball which you throw up into the air and then catch again. If you have a helper, you can throw the ball while walking forward.
• With a helper: Keep your legs moving as you walk the whole time while your helper calls out instructions, telling you how and which way you should walk: straight ahead, to the left, backwards, to the right, forwards on your toes etc.
• Walk stairs.
• Walk in uneven terrain (you could walk in the forest).
• Walk in a forward direction and pick up objects from the floor (differently sized objects).

Dizziness

Vertigo is linked to our sense of balance. After a stroke, some people experience dizziness, and sometimes they also feel nauseous, have to throw up and/or have nystagmus (involuntary eye movements). Dizziness commonly occurs with strokes that affect the cerebellum, which coordinates the information from our balance system. The dizziness is likely to be most acute the first few days and improve gradually, but for some stroke survivors it will persist and become a big problem and handicap.

You can work to control your dizziness. It is not always possible to get rid of it, but it is possible to override some of the signals to the brain, so that it spends less time on interpreting the effects of dizziness on the rest of the body. It is also important to train your reactions to prevent falls. These are exercises you need to do with a therapist in safe surroundings. Someone needs to be standing by to prevent any falls.

You must not do these exercises alone in your home.

Bladder and bowel function

All bodily processes are controlled by the brain. This includes bladder and bowel functions. Some stroke patients lose control of these functions and develop incontinence, while others can’t empty their bladder or have constipation. At the hospital, the bladder function should be examined quickly. The problems may dissipate over time. There is also a risk of urinary tract infections during the stroke’s acute phase.