Dystonia

Dystonia is a movement disorder that causes the muscles to contract and spasm involuntarily. The neurological mechanism that makes muscles relax when they are not in use does not function properly. Opposing muscles often contract simultaneously as if they are “competing” for control of a body part. The involuntary muscle contractions force the body into repetitive and often twisting movements as well as awkward, irregular postures.

There are approximately 13 forms of dystonia, and dozens of diseases and conditions include dystonia as a major symptom.

Dystonia may affect a single area of the body or be present throughout multiple muscle groups. Dystonia affects men, women, and children of all ages and backgrounds.

Secondary dystonias are caused by diseases and traumas. Secondary dystonias are much more prevalent than the primary forms (where dystonia is the root health concern). When the dozens of diseases that can cause dystonia such as Parkinson’s, Huntington’s and Multiple Sclerosis are considered, the number of dystonia cases can be propelled into the millions.

Dystonia causes varying degrees of disability and pain, from mild to severe. There is presently no cure, but multiple treatment options exist and scientists around the world are actively researching new therapies.

Dystonia is a chronic disorder, but most dystonia cases do not impact cognition, intelligence, or shorten a person’s life span. The main exception to this is dystonia that occurs as a symptom of another disease or condition that already exists.

Causes of dystonia

Categorizing dystonia by the cause is not a simple task and can easily get complicated because scientists have not yet identified the precise biochemical process in the body that triggers the symptoms. This is often referred to as the “mechanism” of dystonia, and it is suspected that this mechanism is common to all forms of dystonia.

On the other hand, we do know that dystonia can occur as a result of trauma, certain medications, and mutated genes. So, we may say that the mutated DYT1 gene or physical trauma cause dystonia, but these explanations do not address the true origin of the dystonia and what happens inside the body to produce the symptoms.

When describing dystonia by the cause, it may be characterized as primary, secondary, or dystonia-plus.

Diagnosing dystonia

Currently there is no single test to confirm the diagnosis of dystonia. Instead, the diagnosis depends on a physician’s ability to observe symptoms of dystonia and obtain a thorough patient history. Doctors must be able to recognize the physical signs and be familiar with the symptoms. In certain instances, tests may be ordered to rule out other conditions or disorders. The kind of physician who is typically in the best position to diagnose dystonia is a movement disorder neurologist.

The dystonia diagnostic process may include:

  • Patient history
  • Family history
  • Laboratory studies such as blood and urine tests, and analysis of cerebrospinal fluid
  • Electrical recording techniques, such as electromyography (EMG) or electroencephalography (EEG)
  • Genetic testing for specific forms of dystonia
  • Other tests and screenings intended to rule out other conditions or disorders

Dystonia prognosis

Dystonia does not define who you are. People with all forms of dystonia have been able to pursue education, work, remain independent and active, form romantic relationship, build families, and live full lives. Individuals may have to adjust activities and lifestyle to incorporate dystonia, but it must be stressed that having this disorder does not define who you are.

Dystonia includes a wide variety of symptoms and characteristics, and each person with dystonia is unique. At this time, there is no way to predict the prognosis of the disorder. Most cases of primary dystonia (both generalized and focal forms) will usually stabilize within five years of onset. Even when stabilized, symptoms may fluctuate. For example, stressful situations may make symptoms temporarily worse. Currently, no medication or therapy can prevent progression from happening. Prompt diagnosis and treatment can often minimize the impact of symptoms and improve or maintain a person’s ability to function in everyday activities.

Dystonia treatments

Although there is presently no cure for dystonia, multiple treatment options are available. Because every person with dystonia is unique, treatment must be highly customized to the individual. No single strategy will be appropriate for every case.

The treatment options for dystonia generally consists of several approaches:

  • Non-drug therapies
  • Oral medications
  • Physical therapy
  • Voice/speech therapy
  • Botulinum toxin injections
  • Surgery
  • Complementary therapies

The information for this page was written and provided by the Dystonia Medical Research Foundation.

Physical effects

Many physical effects of brain injury can impact a person’s activities of daily living (ADLs). These effects include:

  • Ataxia (jerkiness) and coordination
  • Balance problems
  • Chronic (consistent) pain
  • Fatigue, difficulties with sleeping, and insomnia
  • Headaches
  • Impaired motor control and motor planning
  • Muscle tone
  • Paralysis or weakness
  • Perception and receiving sensory information (for example, phantom pain) and figuring out how to act on it
  • Sensory problems, such as sensations on the skin, touch, and vision

Explore our site to learn more about some of the most common physical effects of brain injury and physical rehabilitation.

Fatigue
Fatigue is the feeling of being extremely tired or having no energy or motivation. It is incredibly common after brain injury and can be caused by lack of sleep, stress, the amount of energy required to complete tasks, and pain.
Chronic pain
Pain is a complex issue, particularly when it’s long-term. Chronic pain can make symptoms of brain injury worse and prevent you from engaging in activities of daily living (ADLs).
Mobility
Many physical effects of brain injury can make moving difficult. Changes in mobility can be difficult to adjust to, and can lead to increased risks of mental health challenges. Understanding mobility and engaging in physical rehabilitation are important steps to take in recovery.
Headaches
Headaches can be painful, frustrating, and keep you from doing activities of daily living (ADLs).

Mobility aids

You may find that you need help navigating the world after your injury. There are several mobility and environmental aids that can make moving around easier. You should only use a mobility aid if it is recommended by a physiotherapist or occupational therapist. The therapist will make sure the aid fits you and will show you how to use it properly. Using an ill-fitting aid or using an aid improperly can increase the risk of injury (e.g., due to falls or repetitive strain).

Canes

Canes are an excellent aid that offer support if you have a deficit on one side of your body and only require a small amount of help moving. They are meant to help with balance and should be used when a person can mostly walk on their own.

Walkers or rollators

A person uses a walker when they require more stability. A walker has four legs. Rollators are like walkers but have wheels for ease of use. Walkers and rollators are sturdier than canes and allow people with more significant balance problems to continue walking, building up their strength and stability over time. In some cases, a person may need to use a walker or rollator permanently for safety.

Wheelchairs

In some cases, a person with a brain injury may not be able to walk. This could be temporary or permanent depending on the cause. Some people may find that they can walk short distances or indoors but need a wheelchair to travel longer distances or outdoors. When a person is unable to walk, they use a wheelchair. There are several different kinds of wheelchairs ranging from basic manual models to more advanced motorized chairs. Wheelchairs can provide you with the ability to move around, but it does mean that some places may be inaccessible, and your home environment will need to be adapted.

Walking poles

For some people, walking on uneven ground (typically outside) can still pose a challenge, even if they are able to walk indoors with no trouble. This is where walking poles can come in handy. Also called urban poles, these walking poles can be used for increased activity and for balance by people in rehabilitation. Some sticks even come with special ‘feet’ or ‘grips’ that can be changed depending on the environment and purpose of the walk. Many models are also collapsible for easy storage. If you would like to try using walking poles, you should consult with your doctor first, particularly if you are currently using a walker or cane. You should also be aware that if you have joint pain or are unable to grip the poles that they may not work for you.

Orthotics and proper shoes

When a person experiences mobility issues, there is the possibility that the way they walk, and their posture will change as a result. This can cause additional health problems, including pain. Doctors may recommend orthotics or special shoes that provide more foot and arch support in order to alleviate related pain, correct skeletal positioning/posture, and overall help improve balance [1].

Some people with brain injury have ‘drop foot’. These people will have difficulty flexing the foot when swinging the leg forward during walking. The toes may drag on the ground and increase the risk of tripping. An ankle-foot orthosis is a device that fits around the ankle and helps to keep the toes from dragging while walking. Alternatively, a functional electrical stimulation device can activate the muscle at the front of the shin during the swing phase of walking to flex the foot. If you think you have drop foot, you should speak to your doctor or physiotherapist about getting an ankle-foot orthosis or functional electrical stimulation.

Stair lifts

Stairs can be difficult to use if you are experiencing problems with walking, lifting your legs, and balance. If your home has stairs and you are not able to live entirely on one floor, a stair lift is a safe alternative. These are mechanical chairs that move up and down on a track. They can be installed in your home to make the environment more user-friendly.

Ramps

If you have a wheelchair, you will need to use ramps to access places, including your home. There are companies that make these modifications and will be able to recommend appropriate ramps for you.

Wider doors

If you are using a walker or in a wheelchair, you may need wider doors to navigate easily. This is an additional renovation you may need to complete.

Bathroom adaptations

Using the washroom with mobility issues can be frustrating and unsafe. There are several modifications that can be made to make it easier, including:

  • Grab bars
  • Higher toilets
  • Walk or wheel-in showers
  • Shower seats

Your bathroom is just one area that may need some modifications. An occupational therapist will be able to help you identify problem areas in your home and how best to adapt them to suit your mobility needs.

There are renovation grants available if you need to adjust your living environment. Available funds depend on provincial programs.


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Tips for improving mobility

Most physical recovery gains will occur in the first 6-24 months – but that is not a strict rule. Every brain injury is different and will require its own treatment plan and timeline. There are actions you can take to help increase your mobility over time.

Work with physiotherapists, kinesiologists and occupational therapists

The best way to improve mobility is to work with experts. Physiotherapists, kinesiologists and occupational therapists specialize in helping people improve their gross motor skills and fine motor skills. By having the support of professionals and following a tailored rehabilitation plan, you will be able to make progress.

Repeat exercises and activities

Our muscles and body will learn movements the more we repeat them. The more you practice an exercise, the more your body will respond. However, practicing exercises should be spread out over time. This is a long process requiring a lot of patience. You do not want to go too hard or too quickly: that can result in diminished returns. In other words, you probably will not see progress as quickly. This can cause frustration with the process, which also has the potential to impact your progress.

The best way to see results is to follow the program set by therapists and use exercises or activities that mimic actions you enjoy and do in your day-to-day routines. Engaging and interesting activities will produce more dramatic and meaningful recovery as you are more likely to successfully repeat the action.

Medications

Medications may be used for controlling muscle tone, seizures, pain management (headache, central pain), dizziness and nausea. Medications should only be prescribed by and taken on the recommendation of your doctor.

You will benefit from having a good working relationship with your doctor. All aspects of brain injury recovery take time, and this will be a long-term relationship with many check-ins. You should feel comfortable telling them about any changes to your health and well-being throughout your recovery. They will be able to adapt your treatment plan as needed, helping you progress as much as possible.

Use mobility aids as needed

To both improve your mobility and keep yourself safe, you should always use any mobility aids your therapists or healthcare team recommend. Many individuals with brain injury continue to use some sort of aid like sturdy shoes or walking sticks to reduce the risk of further injury.


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Mobility

Many physical effects impact a person’s mobility, or the ability to move. Examples of this include, but are not limited to:

  • Being unable to walk (limps, poor posture, poor endurance, not able to walk and complete activities at the same time, poor balance, needing to use a walking aid like a cane or rollator).
  • Being unable to work, play or drive
  • Being unable to sit or get dressed
  • Pressure sores from staying in the same position for too long
  • Contractures (permanently stiff joints and/or tight muscles)
  • Loss of muscle mass from disuse
  • Experiencing impaired movement control
  • Increased dependency on others
  • Increased risk of falls
  • Poor bed and wheelchair positioning

When a person experiences changes in their mobility after a brain injury, it can be difficult to adjust to their new reality. This can lead to increased risks of mental health challenges, such as anxiety and depression.

It’s important to work with medical professionals, including physiotherapists, occupational therapists and kinesiologists, to address mobility issues and create a goal-oriented rehabilitation plan.

Topics in this section include:


How the brain perceives the environment & controls mobility

Our brain controls our ability to move, our physical responses and our ability to use and move objects.  While the location and size of the brain injury doesn’t always mean there will be mobility challenges, certain areas of the brain do control specific aspects of mobility, such as:

  • Basic body functions such as heart rate, blood pressure, respiration, sweating, consciousness, and alertness.
  • Coordination and balance, including smoothness of movement.
  • Information related to sight, touch, and spatial awareness. If the brain is having trouble determining where and what things are, it can make it difficult to perform movements like reaching for and picking up objects and moving in the environment.
  • Planning movements and putting them in order, and strength and coordination of muscles. This means that a person may be able to walk but have difficulty planning their movements or may move impulsively.
  • The vestibular system. Everyone has a vestibular system which is made up of organs in the inner ear and the vestibular nerve. The vestibular system provides the brain with information about motion, head position, and where you are in a space. It also helps with balance by stabilizing the head and body during movement and maintaining good posture.
  • Vision. Movements can become more difficult if there are visual deficits that make it more difficult to see.

Many survivors with traumatic brain injury will not have significant visible physical limitations because of the brain injury (although they may have additional temporary injuries like broken bones which will impact mobility). In many cases, physical deficits are ‘invisible’ to others. This is true of cognitive and behavioural effects as well. This is why brain injury is often referred to as an invisible injury.

Effects on mobility after brain injury

Balance
Balance is the ability to keep yourself centered as you walk, sit, and engage in other movements. It allows you to control and adjust your body before, during and after movement to keep from falling. Balance problems after a brain injury are common: 30-65% of survivors have reported some sort of issue with balance [1].

Balance requires functional muscle strength, vision, vestibular function (inner ear), sensation in the skin, muscles, tendons and joints (known as proprioception). It also requires cognitive function and movement planning. When you are keeping your balance, your brain is continually processing inputs and information from multiple senses and body parts. The brain then sends directions out to the body’s motor and sensory system (muscles in the arms, legs, core, and eyes) to keep you centered.

Common causes of balance problems after an acquired brain injury include:

  • Changes in blood pressure
  • The actual injury to the brain
  • Medications
  • Mental health issues like depression, anxiety, fear of falling, or fear of moving
  • Sensory impairments
  • Impairments in motor control
  • Dizziness, which is a sensation of light-headedness, spinning, or nausea.

Balance is important not only for walking but for doing all daily activities. Poor balance can keep you from taking part in activities such as sports, driving and work. Issues with balance and dizziness can increase the risk of falls and injuries, including another head injury. It can have an impact on your abilities and your mental health and well-being.

How can I improve my balance?

Balance problems will usually improve over time with activity and exercises. The more you move, the more you improve. You may be referred to a physiotherapist or other specialist who can help you with your balance. While many people with an acquired brain injury can walk or move independently within a few months of their injury, many will have problems with quick movements, running, sports and high-level balance activities. Some people will recover completely while others may have lasting deficits that change their daily lives.

If one or more of your balance systems is not working well, you can try to improve your balance by focusing on areas that are working. For example, if you have poor vision, make sure you have good shoes, optimal lighting, and vision aids

Other ways to cope with balance problems include:

  • Use mobility aids such as canes and walkers, if recommended by a healthcare professional.
  • Hold onto a family member or caregiver’s arm if you feel unsteady
  • Wear proper footwear (closed toe and heel, well fitting, flat-heeled)
  • Work with an occupational therapist to make changes to your home environment such as railings on stairs, installing railings and safety chairs in the bathroom, and removing rugs or other tripping hazards.
  • Clear high-traffic areas in your home
  • Use adequate lighting and nightlights (for example, smart lights that can be controlled by voice or by phone).
  • Avoid alcohol or other substances that can impair your sense of balance
Endurance
Endurance is having the strength, energy and ability to perform an action over an extended period of time. It can be measured by how well you perform an activity or how much you can increase the intensity or duration of the activity. For example, first you walk further, then you walk faster.

How to improve my endurance

It takes time, patience, and practice to build up your endurance. This will be regulated by your physiotherapist and occupational therapists, healthcare providers, and caregivers. Your therapist may give you strengthening exercises like using small weights or resistance bands. They may also recommend focusing on form and repetition to help your endurance and other aspects of mobility such as posture and gait.

One of the ways you can keep track of your progress is by keeping a record of the activities you are doing. For example, if your goal is to walk 100 metres on the treadmill in a set time, track that progress. Then set your next goal. Goal-setting is something your therapists can help with, and it can help you see how much progress you’re making.

Gross & fine motor skills
Mobility refers to the ability to move your limbs. This includes gross motor skills such as walking and larger movements and fine motor skills such as picking things up and writing. These skills are incredibly altered by brain injury. If you lose parts of your mobility, you have to cope with major lifestyle changes. Physiotherapy and occupational therapy can help with strengthening or re-gaining mobility as well as learning new ways to accomplish tasks. This could include activities such as:

  • Working with your fingers on small, detailed tasks such as writing or crafting
  • Range of motion and strengthening exercises

Certain exercises and activities will be recommended based on your needs.

Muscle tone, strength, and coordination
Muscle tone is the amount of tension in a muscle when it’s in the resting position (not being actively used). When muscle tone is normal, the limbs and body feel easy to move. A brain injury may damage your normal control of muscle tone. This may cause decreased muscle tone – your limbs feel floppy and heavy (also called hypotonicity or flaccid). It could also cause an increase in muscle tone – your limbs feel stiff and tight (also called hypertonicity or spasticity). Both affect the ability to control movement.

After a brain injury, muscles may show different degrees of weakness. Some muscles may be stronger in one limb than another. Damage to certain parts of the brain may result in slow, jerky, or uncontrolled movements. You may hear the terms:

  • Hemiparesis: muscle weakness on one side of the body only
  • Hemiplegia: muscle paralysis (no movement) on one side of the body only

Physiotherapy and occupational therapy can assist with working on muscle tone. This is a process that requires patience as it can take a long time. Your treatment plan will need to be adapted as your mobility changes, and you may never fully regain the mobility that you had before the injury.

How to improve muscle tone and strength

Ways to improve muscle tone depend on whether you are experiencing spasticity or flaccid muscles. If you are experiencing spasticity, your doctor may recommend medication along with stretching and range of motion (ROM) exercises overseen by a therapist. If you are experiencing flaccid muscle tone, treatment can include working on proper positioning, exercises, and joint-positioning devices [2]. Improving muscle tone requires time and patience.

Improving strength involves focusing on which muscle areas need the most help. Exercises such as resistance training can help increase strength over time and with a lot of practice and patience.

How to improve coordination

You need coordination for every movement you make. Improving coordination involves a lot of time and patience, like improving muscle tone and strength. While exercises will vary, they will contain several key components, including but not limited to:

  • Repetition
  • Goal of increasing speed and accuracy
  • Proper form
  • Inclusion of sensory cues
Posture
The head and neck give the eyes, mouth, and tongue a stable base. The trunk (the area of your body between the shoulders and hips) gives us a stable base so we can use our arms and legs. To move normally, the head, neck, and trunk need to be properly positioned when standing and sitting.

A brain injury can affect the muscles that control head, neck, and trunk positions. It can also affect the sense of what is upright and what is straight. For example, you may be leaning left or right because the muscles that hold your posture are affected. This may be caused by wrong information coming from the senses about position, limited range of motion, abnormal muscle tone or pain. If posture is poor, you can create a list of visual checks to make when you are sitting or standing. You can also ask for a caregiver to help.

Physiotherapy can be useful in helping you work on your posture when sitting and standing. Therapists will use specific exercises and gait training to help make improvements. Along with these exercises, you can work on your posture by:

  • Rolling your shoulders back
  • Use a wall to help straighten your posture. Your ears should line up with the middle of your shoulders
  • Sit all the way back in your chairs, and choose chairs with high backs
  • Wear shoes that provide proper support
  • Use a mattress that properly supports the spine

There are also some simple yoga stretches and positions to help with your posture and your flexibility. You should first consult with your therapists and doctors about whether you should perform yoga. If you are coping with balance issues, there are some forms of chair yoga that can be done from a seated position.

Sensations
Sensations tell us how we are moving, what we are feeling, and what’s going on around us. Forms of sensation include light touch, pain, temperature, moving joints and muscles, vision and hearing.

Changes to the way you experience sensation can affect your ability to sense movement or position, to feel changes in temperature, or to feel touch to the affected part of the body. It can also make it harder to re-learn movement since movement information must be sensed by thinking about the movement first. Loss of sensation can also make walking and balance more difficult.

Losing sensation can be a very serious safety issue because you may not be able to feel an injury or be aware of that part of your body anymore. It is important to know what types of sensations have changed to help keep yourself safe. For example, if you cannot feel hot or cold temperatures in a part of your body, use an unaffected body part to check the water temperature before a shower.

Managing changes in sensations can be challenging, but your healthcare team can help you learn ways to cope. Your treatment plan will depend on the sensation changes you are experiencing.

Assistance from caregivers

If you require mobility assistance, it is important that your caregivers are trained to provide it. Mobility assistance can include transferring you from a bed to a chair, helping you use the facilities, and walking. Caregivers need to know how to safely lift, position, and move you. This is important for everyone’s safety – proper training reduces the risk of injury for both of you. Caregivers will commonly receive this training from healthcare professionals involved in your care.

Physical rehabilitation

When a brain injury causes damage that affects mobility and movement, a physiotherapist will assess your physical status and abilities. After the assessment, a treatment program is created that fits your needs. Rehabilitation programs are goal-oriented, meaning the therapists work with you to develop a treatment plan that not only addresses areas of need, but will help you reach your goals. These goals and plans require ongoing re-assessment and modification as the treatment progresses and your goals change. Physical rehabilitation may consist of activities such as:

  • Strengthening exercises focused on building endurance and muscle
  • Range of motion (ROM) stretches, which often focus on specific joints
  • Balance exercises which will target areas of deficit
  • Gait training to improve walking
  • Dizziness/vestibular retraining
  • Visual/perception re-training

Physiotherapy can be short or long term and requires active participation. You may be given activities or exercises to do between appointments. Doctors may also recommend that you work with an occupational therapist to help meet goals surrounding activities of daily living (ADLs) and work. This could include cooking, typing, using public transportation independently, and more.


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