Tag: Managing effects

Ways to cope with pain at home

Pain can impact quality of life and rehabilitation. This is detrimental for both physical and mental health [1]. Chronic pain (which is consistent, long-term pain) can keep you from engaging in activities you like and engaging with others.

It can also contribute to sleep problems and impact your emotions. When you’re tired, you may notice that your pain threshold is actually worse, which then again contributes to bad sleep.

By learning to manage pain, you can improve your quality of life, manage other symptoms and focus on your rehabilitation and activities of daily living (ADLs).

Ask for help
If you are feeling pain and don’t know what to do about it, ask someone to help you. Your friends and family know you’re going through a lot, and they may be able to help you find specialists or help with other pain management techniques.
Attend counselling or support groups
Pain can lead to other issues: for example, depression [2]. Counselling and support groups can be helpful to manage your overall health and well-being. You may also find that there are other people going through something similar to you.
Avoid stressors
There are many possible sources of stress. Stress can make your pain worse [3], which can then lead to more stress.

If something is stressing you out, take a break from it. You should also make sure to keep track of your stressors, and ask for help if necessary.

Avoid substances such as alcohol, caffeine, and tobacco

Excessive consumption of substances such as alcohol can actually contribute to pain [4]. Any questions about substances should be directed to your medical team.

Care for yourself through healthy eating
We feel our best when we eat healthy foods and prioritize our nutrition. While you may be experiencing pain that makes it hard to focus on anything else, nutrition is still important. It can help you combat other potential health issues that may contribute to your pain.

Commit to developing a healthy sleep routine

Pain can interrupt sleep, which in turn leads to feelings of fatigue, anxiety, and more awareness of pain. It’s a cycle that can be incredibly difficult to break unless you start getting proper rest.

One way to work towards better sleep is to develop a healthy sleep routine.

Exercise (gently)
Sometimes pain can be related to stiffness or a lack of movement. In those cases, gentle exercises can provide some relief.
Find distractions
The more you focus on your pain, the more you may feel it. While you shouldn’t ignore your pain, finding distractions can be a good way to reduce/control your pain. This is because you’re specifically focusing on something else, which takes more of your attention away from the pain.

While this management strategy is often recommended, it may have different levels of effectiveness depending on the kind and severity of the pain [5] you are experiencing.

Track your pain
Pain is difficult for others to understand because everyone experiences pain in their own way. But the more information your treatment and rehabilitation teams have, the more they may be able to help you.

Tracking your pain using a chart or journal will not only help identify instances of pain, but may help identify what influences your pain. For example, you may feel more pain before bed because you’re fatigued. Taking more breaks throughout the day may help with that.

Work on breathing and meditation
Many people use breathing and meditation exercises to support both their mental and physical health. This can include pain management.

Two common ways to treat pain are physical therapy and medication. Physical therapy can help with improving mobility, identifying pain points, teaching proper stretching and exercise form and building your endurance for activities. Pacing strategies (strategies that help you move slowly through your day) taught to you by your therapist are also very important for managing chronic pain. It’s a long process but can yield positive results with time and patience.

Doctors may provide prescriptions for medication if appropriate. The prescription could be as simple as an over-the-counter medication. However, in some cases they may prescribe medications targeted to the type of pain that you are experiencing. It’s important for the patient to use prescribed medication correctly, and work with doctors continually for effective pain management.

Resources

Sources

[1] https://pubmed.ncbi.nlm.nih.gov/21752179/

[2] https://onlinelibrary.wiley.com/doi/abs/10.1046/j.0007-1331.2001.00727.x

[3] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4795524/

[4] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4385458/

[5] https://pubmed.ncbi.nlm.nih.gov/15745617/

Headaches

Headaches are one of the most common challenges after a concussion. They can also be present after brain injury. They can be debilitating, frustrating, and be a long-term effect. It can be helpful to understand your headaches, the potential causes, and how to manage them.

Topics in this section include:

Causes of headaches

Headaches can be triggered by a variety of causes.

  • Damage to your brain or nerves
  • Stress
  • Dehydration
  • Medication
  • Pain due to neck or muscle
  • Fatigue/lack of sleep
  • Overstimulation

Diagnosing headaches

If you are experiencing any headaches after your brain injury, you should share this information with your doctor. These headaches could be related to other brain injury symptoms that may need medical attention [1].

To help keep track of your headaches, you can use this printable headache diary from the Ontario Neurotrauma Foundation. This headache diary will help doctors work with you to determine treatment by tracking the length, severity and time of your headaches as well as other important factors.

Types of headaches

Headaches come in a variety of types. While they are all true to their name, they can cause different effects.

Tension headaches
Tension headaches often feel like a tight, squeezing sensation that can last for long periods of time. They can cause mild to moderate levels of pain. They are the most common type of headaches for all adults and do occur often in people with brain injury. They are usually related to stress.
Migraine headaches
Migraines are severe and can be incredibly debilitating. Migraines may be one-sided (classic) or both sides (common) and are notable because they are more severe than other types of headaches. Migraines can also cause light and sound sensitivity and nausea/vomiting.

Migraines can make it harder to complete activities of daily living (ADLs), interfere with sleep, and impact overall health and wellbeing. While they can often be treated with over the counter headache medication, migraines may be long-term challenges for people with brain injury [2].

Cervical headaches
Cervical (or cervicogenic) headaches are caused by nerve damage in the neck, shoulders, or back of the head. These nerves are often connected to the head. Cervical headaches will commonly start in the neck, shoulders or back of the head and can be made worse when standing/sitting in certain positions [3].
Rebound headaches
Rebound headaches can happen as a result of headache medication. If you use the medication too frequently and then miss a dosage, or decrease your dosage, you may experience headaches (particularly if your medication has caffeine).

Doctors can answer any questions you may have about rebound headaches, as well as provide you with information about headache medication.

Cluster headaches
Cluster headaches are short-term, painful headaches that gather behind one eye or one side of the head. While cluster headaches themselves don’t last long, there may be periods of time where cluster headaches happen frequently. Cluster headaches aren’t as common as other types of headaches.

Medication and medical treatment for headaches

If you require medication to help with your headaches, your doctor will prescribe preventative or rescue medication. Preventative medication keeps headaches from happening: doctors will perform an evaluation to determine whether this is something you need. Rescue medication helps when you already have a headache. Examples of these medications include triptans, ibuprofen and acetaminophen. They should not be used daily for extended periods of time as they will result in medication overuse headaches. Other rescue medications, such as opiates, should rarely if ever be used and only for short periods under the close supervision of a physician [4].

Any questions or concerns about medications for headaches should be brought to your doctor.

Tips for managing headaches (without medication)

There are steps you can take to prevent and manage headaches.

  • Apply a cold or hot pack to your neck or head [5]
  • Avoid alcohol and caffeine
  • Complete deep breathing exercises
  • Do visualization or other mindfulness-based exercises
  • Drink plenty of water to stay hydrated
  • Eat healthy foods
  • Focus on improving your sleep
  • Get regular exercise
  • Go outside to get fresh air
  • Go to a quiet place, lie down or take a break from activities
  • Stretch and self-massage your head, neck, and shoulders

Resources

Please note: while these resources are designated for concussion recovery because headache is a common symptom of concussion, the tips may be applicable to those with moderate to severe traumatic and non-traumatic brain injury.

See sources

Disclaimer: There is no shortage of web-based online medical diagnostic tools, self-help or support groups, or sites that make unsubstantiated claims around diagnosis, treatment and recovery. Please note these sources may not be evidence-based, regulated or moderated properly and it is encouraged individuals seek advice and recommendations regarding diagnosis, treatment and symptom management from a regulated healthcare professional such as a physician or nurse practitioner. Individuals should be cautioned about sites that make any of the following statements or claims that:

  • The product or service promises a quick fix
  • Sound too good to be true
  • Are dramatic or sweeping and are not supported by reputable medical and scientific organizations.
  • Use of terminology such as “research is currently underway” or “preliminary research results” which indicate there is no current research.
  • The results or recommendations of product or treatment are based on a single or small number of case studies and has not been peer-reviewed by external experts
  • Use of testimonials from celebrities or previous clients/patients that are anecdotal and not evidence-based 

Always proceed with caution and with the advice of your medical team. 

The Influence of Visual Triggers on Symptoms in Brain Injury and Concussion

By Karen Monet, Opticalm Visual Stress Solutions

Please note: As of 2022, this submitted article has been edited to reflect updated language related to brain injury. The information itself has not be altered.

Stress, both good and bad, is something that we all deal with. For many, managing stress is possible even though we may need help from supportive family, friends, coworkers, doctors, and therapists. The trauma of a brain injury, however, can cause a drastic change in our health, increasing the stress in our relationships, employment, finances, and lives in general. What was once manageable, may now be too overwhelming to manage.

It can be hard to identify everything contributing to this sense of overwhelm. This article aims to point out some of the environmental influences that may be contributing to stress and provide suggestion on how to modify these influences so that recovery and rehabilitation can be improved.

Too much information

Our brains are subject to a non-stop barrage of information – what we are sensing, what we are feeling, and what we are thinking about both. Visual information accounts for approximately 80% of the sensory information we take in, so if the brain is injured and becomes sensitive to visual information, too much energy can be used dealing with the results of this sensitivity, and there may not be enough left to work on recovery.

Tolerance to visual information often decreases following a brain injury and it may be difficult to pinpoint the specific visual information that is uncomfortable and triggering symptoms. Initially following a brain injury, it is recommended to briefly avoid stimulation, bright lights, and computers. If visual problems persist long-term, changes to the visual environment are necessary to decrease sensitives and encourage healing.

Visual stress and uncomfortable images

Visual stress is the term used to describe the overwhelm (hyper-excitement) the brain experiences in the presence of uncomfortable visual triggers. Uncomfortable images have been identified as those having a high spatial frequency such as those that are patterned and of high contrast. (Perception. 2008;37(7):1098-113. Uncomfortable images in art and nature. Fernandez D1, Wilkins AJ.) In addition, images that flicker or move quickly have been reported to be uncomfortable in those with hyper-excitable visual cortices (migraine, epilepsy, autism, head injury). (Wilkins et al. 1989 and Kowacs et al., 2004)

Functional magnetic resonance imaging (fMRI) has been used to demonstrate that “Most uncomfortable visual stimuli will reduce the sparseness of neural activity according to models of the visual cortex; and increase the amplitude of the haemodynamic response” (Arnold Wilkins, Discomfort and Hyper metabolism, Project October 22, 2016 ResearchGate)

Simplified, images that our brains find uncomfortable will:

  1. Increase the density of our brain activity, and
  2. Increase the energy (blood) sent to the area in response to the visual stimuli.
Visual cortex

This increased density and energy can lead to difficulty focusing, headaches, and perceptual distortions as the brain is overwhelmed with too much activity in one area. If the trigger to the hyperexcitement is not stopped and this brain activity and energy is not reduced, the effect then cascades into other areas of the brain. These same results have been shown using other brain imaging techniques including near infrared spectroscopy and QEEG, shown here.

I often use the analogy of blushing to explain this concept – when triggered by something embarrassing, our cheeks fill with blood, become red, burn with heat, and the skin can actually sting as the blood makes the area firm. Until we remove ourselves from the trigger experience and start to calm down, this can be very uncomfortable. And the same goes for our brain.

So what can be done?

Start by evaluating the visual environment. Look for images that are uncomfortable that you avoid looking at. The idea is to find these items/images and make changes where possible, even if the changes are only temporary until the original environment is more tolerable. A good rule of thumb is things that are similar to those found in nature will be comfortable and anything unnatural will likely be uncomfortable. And while wearing dark sunglasses may be a go-to solution, consider this: wearing dark sunglasses will block out almost all the visual information leading to eye strain. This is similar to having to strain to hear something through noise cancelling headphones.

1. Reduce High Contrast Images

Find and remove items in your visual environment with high contrast. This is not just black against white, but also colours that are opposite like red/green, purple/yellow, and blue/orange. Also remove dark/light contrast images as they have the same effect that black/white has on hyperactivating the visual cortex. Difficulty reading is a commonly reported post-injury symptom. To reduce the contrast of black text on white paper, select a comfortable colour of paper and write on it with a similarly coloured pen or print on it with a closely coloured font. Reducing the contrast on your computer screen or phones is possible with specific software and apps that tint screens and change font colours.

2. Reduce Patterns

Repetitive narrow patterns like stripes are one of the most uncomfortable images, and the biggest triggers to visual stress.  Look at patterns around you in artwork, clothing, carpets, flooring, fabrics, and window coverings. Text is also a pattern. Things that were liked and tolerated before the injury may now be causing discomfort simply because of the pattern. The more these items are present in the visual environment, the more the visual stress accumulates. Change out highly patterned artwork, cover patterned carpets or flooring with solids, and soften items with sharp corners and edges with plants, blankets, or curtains. Think soft curves of nature. A local rehabilitation centre changed their high contrast tile flooring because of complaints from patients who felt uncertain walking on it and afraid they would fall. Similarly, a local physiotherapy clinic with a highly patterned carpet must lay towels over the carpeting to reduce nausea for clients looking down from the therapy beds.

3. Reduce Flicker

Flicker is the on/off presentation of an image. It could be the flicker of a computer screen, fan blade, light reflecting off moving water, images moving past the car window, etc. Think about how you feel when looking at these flickering images and do what you can to avoid looking at them. There are specialty filters for computer screens and blade-less fans.  As well, there are specific filter lenses that can be worn to reduce the effects of visual images that cannot be changed.

Another source of flicker is lighting, specifically fluorescent.  For those who have experienced a brain injury, sensitivity to this flicker may be heightened and can be perceived even if others around do not notice it. The compact fluorescent lights bulbs that were put into lamps and lights can be contributing to discomfort. Look instead for dimmable and tunable colour LED bulbs to replace them. These bulbs can also be used at the office for task and ambient lighting if the overhead fluorescent tubes can be turned off.

Blinds are both patterned and create a contrast with the bright light coming through the darker blind. When the windows are open, the breeze may move the blinds, causing flicker. We suggest keeping blinds all the way closed or all the way open to reduce this trigger or use an un-patterned drape or roll blind material instead.

4. Wear precision tinted filters

While you can make modifications to your own environment, you can’t change the world to suit your needs, so an important option is to get tested for visual stress and have your unique visual filters identified. Everyone has a different optimal filter to improve visual perception, just as everyone has a different prescription to improve vision refraction.

Experience a reduction in symptoms

Making these changes can reduce commonly reported symptoms of brain injury, such as:

  • Visual sensory problems: light/glare sensitivity, movement sensitivity
  • Visual processing problems: reading difficulties (word movement, intermittent blurring), and balance difficulties (world appears off balance)
  • Cognitive difficulties: fatigue, concentration, comprehension
  • Physical difficulties: headache, eye pain, nausea

These modifications suggested above may provide a more tolerable visual environment and reduce symptoms, leading to an increased ability to focus on other important aspects of recovery and rehabilitation. It is important to continue with other visual and physical therapies as these will help your brain get back to tolerating life and all the stresses that were managed before brain injury.

Talking to family and friends about your brain injury

One of the most frustrating aspects of living with the effects of brain injury is trying to get other people to understand how you are feeling and how much you are impacted by cognitive, physical, emotional and behavioural effects.

Your friends and families may not be familiar with brain injury in any way. Therefore, they may make some comments that make you feel hurt or upset. They mean well, but they don’t know what you’re experiencing. The only way they will know is if you tell them. You can do this by creating an atmosphere of open communication and dialogue. Take the opportunity to educate them about your injury and how you are impacted. Knowledge leads to understanding and even though it can be frustrating and take patience, it is important to keep those connections with friends and family.

Some examples of comments/questions you may hear from family or friends. Remember, your friends or family members mean well and want to know how to talk with you.

“When will you get better?”
This can be hard to hear. No one wants to live with memory loss, fatigue, pain, or any of the other effects of brain injury. Unfortunately, brain injury requires a lot of time, patience and commitment to rehabilitation. You will never be the same as you were before the injury. This is something that both you and your friends/families need to talk about. Brain injury recovery does not happen overnight. You are continually recovering and adapting. Let them know how they can help and support you. Tell them what you need from them and keep them updated as it your needs change over time.
“Glad to see you back to your normal self”
Bran injury is called the invisible disability because many symptoms of brain injury aren’t immediately obvious to others. What your friend or family member doesn’t know is that to prepare to see them, you have slept for hours and will then need to sleep again to recover. Or that you spend most of your time isolated from the world to cope with your symptoms. So, while to them you look ‘normal’, you’re far from it. You may feel hurt and frustrated by the comment: but they won’t know what you’re experiencing if you don’t tell them. Let them know how much physical and cognitive fatigue impacts your daily life.  Ask them to listen and ask questions about what you are experiencing and what “normal” looks like to you.
“You never come out or hang out with us anymore”
Bright lights, loud or multiple sounds and other stimuli may be hard for you after your brain injury. Traditional environments for socializing can cause you to experience symptoms of your injury or make those symptoms worse. You may be experiencing increased social isolation, and it’s frustrating when someone says something like this. But if they don’t understand what you’re going through or how to help them. Let your friends or family members know what types of environments don’t work for you at the moment. Socialize in smaller groups or one on one at your home or a place you are comfortable. If you can control your environment, you can control your symptoms and get more enjoyment from being with your family and friends.
“I feel like you are different, and our relationship has changed”
You are dealing with a whole new set of circumstances than before your brain injury. You may be different, and that’s okay. But it can be hurtful to hear someone say something like this. It can cause you both to dwell on the past when you should be focusing on the future of your relationship. Inform your friend or family member about how you’re feeling.  Through communication and continued engagement, you can forge a new relationship path forward.  “
“Weren’t you listening? I already told you that”
You were listening, but you may be experiencing memory loss or trouble focusing after brain injury. It’s a common challenge and one that can be so frustrating for both of you.  While you can use all sorts of tips and strategies to help you assist with memory loss, you need friends and family to be patient and not critical. There is no quick fix to memory impairments, so making sure family and friends are aware and understanding of your challenges will reduce frustration on both parts.
“I don’t want to upset you. I feel like I am always walking on eggshells”
This can be hurtful and comes from a lack of knowledge about the impairments caused by brain injury.  You may be experiencing multiple symptoms of brain injury that could impact how you interact with others. For example, you might have emotional lability (which is extreme emotional reactions such as laughing or crying excessively and sometimes in inappropriate situations), chronic pain, behavioural challenges, and frustration over the changes you have gone through and that people don’t understand them. All of this is common for brain injury survivors, and it’s important to communicate this with your friend or family member. There may be times when you both get upset. By being open and honest about what’s happening, you will both be able to communicate with more consideration and thought.

These are just a small sample of what you may hear from your family and friends as everyone adjusts and adapts. They are not trying to be offensive: they are trying to be supportive. Explain to them why comments like these are hurtful and help them understand how to communicate with you in a more positive way.

Other ways to educate family and friends

Ask them to visit the Family/Caregiver section of this site and ask them to spend some time looking through the information so they can become better educated about the complexity that is living with a brain injury.

Assistive devices & technology

Assistive devices and technology are anything that helps make activities of daily living (ADLs) easier and increase quality of life. This is a small sample of the assistive technologies available to help after brain injury. If you are looking for more options, check with healthcare providers, other survivors and your local brain injury association for ideas and recommendations.

Financial aid for assistive technology/devices

DISCLAIMER: the following are examples of commonly used assistive technologies and devices. Your healthcare provider will be the one to make recommendations for your specific needs, and they should be consulted if you have any questions about assistive technology. Using these devices and technology can be very helpful, but only when targeted for your abilities.

For mobility

Walking poles
Walking poles are sometimes used for active walking. They can also be used for people who want extra support and safety when walking outside on uneven ground. These walking poles can be ordered online, or in some cases can be found in sports equipment or medical stores. Make sure to find ones that are good for rehabilitation: there is a difference between sport poles and support poles. It is also important to follow instructions and use them correctly.
Canes
Canes are a walking aid, generally used by people who have some unsteadiness and need extra support. Canes can be single point or four-point.
Walkers
Walkers are an excellent assistive aid for people who are able to walk but may be experiencing muscle weakness or unsteadiness/balance issues. Compared to canes and walking poles, walkers provide more support. While most walkers have wheels for easy movement, some do not. Your doctor will be able to provide recommendations.
Wheelchairs
Wheelchairs can be manual or motorized operation and come with a variety of features designed to make mobility easier. If you do need a wheelchair, you may have to adjust your home environment in order to accommodate the change. Wheelchairs should be fitted by an occupational or physical therapist who can make sure wheel types, seating and other parts of the wheelchair are suited for the user.

At night

Bed rails
For people who toss, turn and are at risk of falling out of bed, bed rails are an easy way to increase safety while asleep.
Low beds and bed steps
Getting in and out of bed can be challenging. Lower beds and bed steps can help. They are also easy to find and add to a bedroom.
Sleep mask
For many people, they need peace, quiet and darkness to fall asleep, meditate, or just take a few minutes for themselves. One way to do this is to use a sleep mask. A sleep mask restricts light and can help someone if they are feeling overly visually stimulated.
Special adjustable beds
Adjustable beds can make it easier to find a comfortable sleeping position, improve circulation, and turn a bed into a chair for day use.
Supportive pillows
There are different kinds of pillows that can be used to help people when the sleep. Pillows can be used to help with neck, hip positioning, between the knees, and more.

In the kitchen

There are all kinds of kitchen items that can make cooking enjoyable and more accessible. An occupational therapist may have recommendations specific to your needs.

Automatic turn-off switches for stoves
There are several automatic stove turn-off devices that can be used by people who experience challenges with memory. Some even have timers. These automatic turn-off devices can be an important safety tool.
Grips for silverware
There are grips you can get to add to silverware. This makes it easier to hold a fork or spoon and eat independently. They can also be used for other utensils such as pens.
Kitchen tools developed for people with one hand ability
There are plenty of kitchen tools such as knives, cutting boards and pots/pans that are designed for people who can only use one hand. This means that people who find traditional kitchen equipment impossible to use can still enjoy cooking.
A pot watcher
There are different names for it, but a pot watcher is essentially a heat-resistant disc that goes into a pot or kettle. It rattles when liquid starts to boil as a reminder for the person cooking. This is a great tool for people who like to cook but may get distracted.

In the bathroom

Shower chairs/benches
Shower chairs or shower benches allow people to bathe safely while sitting down to help minimize risks of falls.
Grab bars
Grab bars can be installed in various places in the bathroom to help a person in an out of a shower or bathtub or up and down on the toilet. These grab bars are installed specifically to support a person’s weight. Towel bars and hooks should not be used as grab bars.
Handheld shower sprayers
For people who sit down in the shower, a handheld shower head allows for easier cleaning and more maneuverability.
Raised toilet seats
Raised toilet seats can be incredibly helpful for people who find sitting far down challenging.

Technology

Learn more about Tech for Good a digital accessibility program 

Computer programs that change screen colour & contrast
For some people with visual challenges, regular screen settings (colour, contrast and brightness for example) don’t work. There are computer settings and additional programs (free or for purchase) that can be used to alter screens to make them more comfortable for users.
Journaling applications
For people who don’t want to keep a physical/paper journal, there are free and paid smartphone/tablet applications that allow you to keep a journal. This is also an excellent option if you struggle with writing by hand.
Photo shortcuts
Some applications for smartphones are available to create photo shortcuts for actions you perform all the time. For example, a photo of a family member could be a shortcut to their phone number. This can make calling loved ones or visiting frequently used websites quick and easy. Please note: these applications are not free.
Screen readers
Computers, tablets and smartphones can be equipped with screen reader software that will read out text and image descriptions on your screen. Some computer operating systems even have screen readers (or narrators) built in. This assistive technology is helpful for people who have difficulty using screens or vision problems.

 

Not all screen readers are the same and some may cost money. You can find the right screen reader for you by asking specialists on the rehabilitation team for their recommendations. You can then begin looking at free vs. paid programs and reviews from other users to determine which recommendation would be best for you.

Scheduling applications
There are plenty of smartphone and computer applications available for free or for purchase that make keeping a digital calendar or setting reminders easy.
Smart-pen and paper
Smart pens (along with the appropriate smart paper) can turn handwritten notes into digital notes and audio recordings. Some can even store pages or audio notes directly on the pen.
Speech to text software
For people who are unable to write, speech to text software can take what you say and turn it into text on a computer, smartphone or tablet. This is helpful for emails, text messages, reports, and more.
Talking clock/calendar
There are digital clocks and calendars that go one step further. They not only show the date/time: they say it. Depending on the model of clock/calendar, they may also show other relevant information such as temperature and weather.
Use smart technology to send alerts, change settings
Smart technology is becoming more and more integrated into homes. Using smart technology and applications, it’s possible to do things like send alerts to a caregiver when a person leaves their bedroom (ideal for people with memory or balance issues), set up automatic reminders, and more.

 

Smart technology does cost money and will need professional installers. Healthcare professionals may have some recommendations for smart technology that other patients have found helpful.

Voice recorders
Taking notes in any form may be difficult for some. Audio recorders can be used to record conversations, important meetings, doctors’ appointments, and journal entries. The recordings can be saved on a computer or compatible device.
Wearable timers & smart watches
Smart technology watches and timers can be worn and used by people with brain injury to remember the date and time, set timers for activities, and set reminders to complete tasks. Some can even take voice memos.

Additional aids

Hearing aids
Hearing aids are for people who have hearing problems and need technology to help them with communication. If you have hearing problems, you should consult with an ear, nose and throat (ENT) specialist or your doctor about whether a hearing aid would help you.
Large print calendars and schedules
Standard print size may not be suitable for some people. There are large print calendars and schedules that can be ordered. These make it easier for people to read, especially from a distance.
Prism glasses
Prism lenses are designed for people with double vision. The prisms help align the two images into one. Eye doctors prescribe prism eyeglasses based on specific tests.
Medical bracelet
A medical bracelet isn’t a tool or device, but it’s a valuable way to convey information about brain injury to medical professionals (such as emergency personnel), caregivers, and even the person with a brain injury if they are experiencing memory issues.

 

Brain Injury Canada has partnered with MedicAlert to provide a special rate on their services and a free medical bracelet.

An alternative to a medical bracelet is an emergency identification card or storing the information on your smartphone. Many smartphones now have a feature that enables you to make someone your emergency contact, which can be accessed by first responders.

Financial aid for assistive technology/devices

There are several different funding programs available to provide assistance to those with disabilities. They can be run by provincial/territorial governments, local nonprofits, or community organizations. Funding programs for assistive devices will have different eligibility requirements, so not all programs may be available to you. Check with your local brain injury association to see if they have information on funding programs.

March of Dimes Canada’s Tech for Impact Fund is providing funding towards purchasing technology to support Canadians living with a disability.

There are grants available at the federal and provincial/territorial levels that can assist with home environment accessibility renovations. You can find the list of current renovation grants on this page.

Tips for exploring the new normal

Self-identity after a brain injury is fluid. While things have changed and that’s hard, with time, patience and support you have the opportunity to explore your new identity and shape your new normal.

Ask for positive reinforcement

Positive reinforcement from others is helpful – everyone needs encouragement, especially during recovery. You can also give yourself positive reinforcement by writing down encouraging statements or recording the positive parts of your day on an audio device (like a smartphone).

Attend therapy

Therapy is an excellent way to explore your feelings and your self-identity after brain injury. A psychologist or psychiatrist will help you work through what you’re feeling, focus on positive progress, and adjust to your new normal.

Be patient with yourself and others

Finding a new normal and re-forming a self-identity doesn’t happen overnight. You’re going to have a lot of ups and downs. Reflect on what can you do now that you couldn’t do a month or year ago, rather than always compare your current self to your pre-injury self. It’s difficult but being patient with yourself is one of the most important things you can do for your mental/emotional health and well-being.

It’s also important to be patient with others, especially families and caregivers. Everyone is adjusting to the changes in relationships and responsibilities. It’s normal to feel frustrated with others – you’re going through a lot. But try to remember that their whole world has changed as well, and they need your support and love too.

Celebrate your wins

It’s important to recognize your accomplishments, even the smaller ones: they are worth recognizing. For example, can you sometimes remember things without looking at your notes? Or control a strong emotion? Or feel a little more stable on your feet? Celebrating your wins will not only improve your mood, but it will reinforce how far you have come.

Find the familiar

While you shouldn’t compare where you are now to where you were before the injury, it’s okay to take comfort in the aspects of yourself you recognize or are familiar after your brain injury. It’s reassuring, and it’s helpful when building your new normal.

Try new things

Part of living in the new normal is trying new things and learning what works for you and what doesn’t. This can be done through rehabilitation or simply getting out there through community classes, social groups, or trying new hobbies. Recovery does not have to mean get your old life back as much as possible. It can also mean bringing new valued activities into your life.

Chronic pain

Chronic pain is pain that a person experiences for a long period of time (longer than 3 months) after an injury. Pain is a complex issue for people with brain injury, as not only is there bodily pain, but the way you perceive pain may have changed as well. Pain can also make symptoms of brain injury worse, especially if it impedes the person’s ability to perform rehabilitation exercises.

You can experience bodily pain which is common in the neck, shoulders, back, hips and knees and can be caused by comorbid conditions (conditions that happened/are happening at the same time). This is typically an aching pain or a sharp pain and gets worse with activity. Neuropathic pain is nerve-related and can be a burning, tingling, stabbing or shooting sensation [1]. Headaches are common  (particularly after concussions) and can be debilitating. Many individuals report chronic pain after their brain injury to varying degrees [2] and in different parts of the body [3].

Chronic pain can have side effects, it can impact mental health and emotions, your social life, your behaviours, and causes problems with thought processing. We have more information on coping with these kinds of effects on the following pages:

Managing chronic pain after brain injury

Without management, chronic pain can impact quality of life and rehabilitation. This is detrimental for both your physical and mental health. Chronic pain can keep you from engaging in activities you like and socializing with friends and family. It can also contribute to sleep problems and impact your emotions. When you’re tired, you may notice that your pain threshold is actually worse, which then again contributes to bad sleep. By learning to manage chronic pain, you can improve your quality of life, manage other symptoms and focus on your rehabilitation and activities of daily living (ADLs).

Chronic pain management and treatment may include physical therapy and medication. Physical therapy can help with improving mobility, identifying pain points, teaching proper stretching and exercise form and building your endurance for activities. Pacing strategies taught by your therapist are also very important for managing chronic pain. It’s a long process but can yield positive results with time and patience.

Doctors will provide prescriptions for medication if appropriate. The prescription could be as simple as an over-the-counter headache medication. However, in some cases they may prescribe medications targeted to the type of pain that you are experiencing. Some medications may contain opioids: used safely, they are an effective pain medication. But used incorrectly, they can be dangerous. Opioid overdoses can actually cause brain injury . It’s important for the patient to use prescribed medication correctly, and work with doctors continually for effective pain management. Some additional examples of pain management techniques include:

  • Avoiding substances such as alcohol, caffeine, tobacco, etc.
  • Commit to developing a healthy sleep routine
  • Meditation and mindfulness can help reduce stress, which can aggravate pain
  • Pacing strategies

Reach out to your local brain injury association  and look into resources or support groups for brain injury survivors. Other people may have experience managing chronic pain and be able to offer support.

Resources

See sources

Tips for coping with stroke

Use assistive devices

Assistive devices are meant to make rehabilitation and daily tasks easier. These devices could be:

  • Walking poles
  • Walkers
  • Canes
  • Wheelchairs
  • Software applications on computers or phones
  • Smart technology
  • Hand bars in the bathrooms
  • Railings

Arrange your environment

After a stroke and subsequent brain injury, your home environment may not be set up for you to act independently (at least at first). This can be hard on self-esteem and mean that you rely on caregivers for more things. Following an occupational therapist’s suggestions or advice on minor home environment adjustments can create a safe, practical living space that lets you be as independent as possible. Labelling drawers, getting special adaptive tools, or adding safety railings are all examples of home environment improvements that could be helpful.

Be patient

Stroke and brain injury rehabilitation will take a lot of time and commitment. You won’t see progress right away, and it’s easy to get discouraged. But by working with the rehabilitation therapists, breaking down big goals, and with time you will move forward.

Focus on one task at a time

Multitasking requires a lot of focus, and it can be overwhelming – particularly if you’re struggling with attention at this time. When you try to do too many things at once, something could be missed or done incorrectly. By focusing on one task at a time, you ensure that you are completing that task safely and correctly. This is much more effective, particularly if the task is a rehabilitation exercise.

Get appropriate rest

Stroke and brain injury recovery requires a lot of energy. This energy often fades as the day goes on. It’s easy to get fatigued. By taking breaks and devoting some time to creating a good sleep routine, you can make sure you’re well-rested for the day.

Keep schedules and lists

Schedules and lists help keep you organized and track appointments. A schedule or list can also reduce stress because you won’t be worried about forgetting something. You can also use journaling as a useful way to track your progress, activities, and feelings.

Take care of your mental health

Mental health is an essential part of overall well-being, and an important aspect of brain injury recovery. It is a difficult, emotional and mentally stressful process, and there is a risk that you may experience anxiety, anger, or depression.

Plan for the long-term

After a stroke and brain injury, you may need help to complete activities of daily living (ADLs). It’s important to make plans for the long-term. You could have a caregiver, a personal support worker, move into short-term care or find a long-term care home. There are several options you can choose, and several factors you should take into consideration to make the decision.

Exercise and nutrition

Proper exercise and nutrition are important parts of health. After a stroke, you may have specific restrictions on what you can do and eat. Working with a dietitian and physical therapists will ensure you are getting the right nutrients and exercising safely.

For more focused tips on stroke and brain injury recovery, check out the Heart and Stroke Foundation website

Brain tumour

A brain tumour is an abnormal growth of cells within or around the structure of the brain. They can impact all areas of the brain and change how a person thinks, feels, and reacts. There are over 120 types of brain tumours, ranging from non-malignant (non-cancerous) to malignant (harmful or cancerous). In some cases, brain tumours can put pressure on surrounding tissue, leading to long-term effects.

It is unknown what causes brain tumours, yet family history, age, environmental exposure may be risk factors.

Signs and symptoms of brain tumour

Brain tumour symptoms vary from person to person and may appear overtime or all at once. Not every type of brain tumour will generate the same symptoms. The symptoms may also occur with other conditions, so may not indicate a brain tumour.

Common symptoms of a brain tumour include:

  • Behavioural changes
  • Cognitive changes
  • Dizziness or unsteadiness
  • Double or blurred vision
  • Frequent headaches
  • Hearing impairment
  • Morning nausea and vomiting
  • Seizures
  • Weakness or paralysis

Symptoms of a brain tumour will depend on the size and location of the tumour, and not everyone will experience all the symptoms listed.

A brain tumour is diagnosed by using a combination of neurological exams, magnetic resonance imaging (MRI) and computed tomography (CT) scans.

Treatment for brain tumour

Doctors will determine the best treatment for a brain tumour based on factors like:

  • Age
  • Overall health
  • Tumour location
  • Tumour size
  • Tumour type

For malignant tumours (such as cancer), surgery, radiation, chemotherapy, and immunotherapy are the most recommended treatments. For more information about cancerous tumours, including metastatic cancer, visit the Brain Tumour Foundation of Canada website.

In cases where surgery is not possible or the brain tumour is not doing any harm or causing any major symptoms, , doctors may recommend monitoring the tumour before making additional treatment decisions; this is called a “wait and see approach”. It’s important to discuss your available treatment options with the healthcare professionals about treatment.

Brain tumour recurrence

Sometimes a brain tumour can become ‘active’ again. This could indicate growth or change in the tumour. Normally this is discovered during routine checkups. If your tumour does come back or become active again, your healthcare team will determine the best course of treatment.

Tips for living with brain tumour

Ask for help & access support
You may need help from family, friends, or caregivers to complete activities of daily living (ADLs), get to appointments, or to run errands. But unless you ask, your circle of supporters may not know how best to help you. If there is something you need, you should always ask.

There are many ways to access support, whether that is one-on-one support, or attend a virtual brain tumour support group. Gain peer support in a safe, relaxed atmosphere from the comfort of your home.

Ask questions of your healthcare team
Your healthcare team has a wealth of knowledge about brain tumours, and they can help you learn all you can about yours. They can also keep you informed of treatment options and clinical trials for which you may be eligible.
Find ways to cope with cognitive, behavioural, and physical effects
The brain tumour may be altering your cognitive, behavioural, and physical abilities. This affects your activities of daily living (ADLs) and can mean that you can’t do things the same way you used to before your brain tumour.

There are ways to cope with those changes. For example, if you are experiencing memory problems, writing things down can help you keep track of tasks.

Learn about finding your new normal
With a brain tumour diagnosis comes a lot of change in your life. Nothing may ever be quite the same again. It will take time to adjust to your new normal, and you will experience strong emotions – even grief.

Learning what to expect when things are changing for you is a good way to pick up coping methods that can make transitions easier.

Take care of your physical health
A brain tumour is a health condition that can have many effects on mind and body. Eating a healthy balanced diet, exercising safely, and getting appropriate rest are great ways to take care of yourself.

Resources

Brain Tumour Foundation of Canada offers many programs, services, and support for anyone affected by a brain tumour. Their handbooks provide information about treatment options, long-term effects, and an overview of brain tumours. These handbooks are available in English and French (print copy shipped free in Canada or available electronically)

Adult Brain Tumour Handbook
Adult Brain Tumour Patient Handbook cover image

Order handbook

Non-Malignant Brain Tumour
Non-Malignant Brain Tumour Patient Handbook cover image

Order handbook

Pediatric Brain Tumour
Pediatric Brain Tumour Patient Handbook cover image

Order handbook

Brain Tumour Caregiver Handbook
Caregiver Brain Tumour Handbook cover image

Order handbook

See sources

Disclaimer: There is no shortage of web-based online medical diagnostic tools, self-help or support groups, or sites that make unsubstantiated claims around diagnosis, treatment and recovery. Please note these sources may not be evidence-based, regulated or moderated properly and it is encouraged individuals seek advice and recommendations regarding diagnosis, treatment and symptom management from a regulated healthcare professional such as a physician or nurse practitioner. Individuals should be cautioned about sites that make any of the following statements or claims that:

  • The product or service promises a quick fix
  • Sound too good to be true
  • Are dramatic or sweeping and are not supported by reputable medical and scientific organizations.
  • Use of terminology such as “research is currently underway” or “preliminary research results” which indicate there is no current research.
  • The results or recommendations of product or treatment are based on a single or small number of case studies and has not been peer-reviewed by external experts
  • Use of testimonials from celebrities or previous clients/patients that are anecdotal and not evidence-based 

Always proceed with caution and with the advice of your medical team. 

Language & brain injury

After a brain injury, a person may find communicating more challenging. This includes speaking, listening, reading, writing, and understanding language.

Topics in this section include:

Aphasia

Aphasia is the term used to describe a language disorder. It is a common language problem that occurs after a stroke (which is a non-traumatic brain injury), but can occur from other causes such as traumatic brain injury and tumours [1].  Aphasia can impact your ability to talk, understand conversation, and read and write, which are all important aspects of communication. Someone with aphasia is often able to understand others or know what they want to say, but has difficulty putting thoughts into words or grammatical sentences. Difficulty communicating because of aphasia can lead to social isolation and be associated with lower quality of life [2].

Aphasia can range from mild to severe and can be categorized into several types. Working with a speech-language pathologist to understand your specific pattern of impairments and areas of strength is important. This can help to create your therapy goals and find the most effective ways to communicate with others.

This chart from the National Aphasia Association demonstrates common types of aphasia based on patterns of impairments.

Red and white chart of the different types of aphasia. Type of aphasia is broadly identified by answering yes or no to whether a person can speak, understand speech, and repeat what they hear. Created by the Aphasia Institute.

Please note that this diagram only shows a selection of types of aphasia. Since there are so many different combinations of language impairments, it’s important to work with a speech-language pathologist to address your specific needs. Speech-language pathologists are experts in the assessment and treatment of all different types of aphasia [3].

Tips for improving and supporting communication

No matter the severity of aphasia, communication challenges can be incredibly frustrating. Communication and social interaction are important parts of maintaining relationships and supporting mental health and well-being. Finding support, participating in therapy with a speech-language pathologist (SLP), and learning strategies to communicate with aphasia can help reduce the risk of social isolation and improve communication between family members, friends, caregivers, and health professionals.

Work with a speech-language pathologist (SLP)
A speech-language pathologist (SLP) specializes in helping people with language, speech, cognitive-communication, and swallowing difficulties. A speech-language pathologist can be consulted during the acute stage of recovery or at a later point in rehabilitation. Some people have even benefitted from working with a speech-language pathologist many years after their injury. Speech-language pathologists complete a comprehensive assessment, work with you to create a therapy plan, and help you work towards specific communication goals. It’s important to remember that recovery is different for everyone: while communication skills can improve over time, long-term difficulty communicating may persist [4].
Augmentative and alternative communication (AAC)
Augmentative and alternative communication (AAC) devices and technology are potentially a great way to communicate more effectively. There are both low-tech (e.g. paper or communication boards) and high-tech (e.g. electronic devices) options. There are several applications for computers, tablets and smartphones that generate sentences, translate text to speech, and more. Speech-language pathologists and occupational therapists on the recovery team will be able to determine if an AAC device is appropriate for you (taking into consideration any physical impairments, such as reduced movement of one arm) and make recommendations that best suit your needs.
Be patient
It’s incredibly frustrating to struggle with communication, especially if you haven’t had communication problems in the past. Communication often improves over time and you can also learn adaptive strategies to make communication easier and more natural, but it takes time and effort. Give yourself a break and be patient.
Focus on one task at a time
Multi-tasking can be tiring, and it can divide a person’s concentration. Divided attention can make it harder to find the right words. When you want to read, write, or speak with someone, try to reduce distractions and focus on one task at a time.
Join a conversation group, participate in activities and volunteer to practice
The more you practice a skill, the stronger it gets. Communication is a big part of recreational activities and volunteering. There are conversation groups offered by different community centres, hospitals, and programs to help you practice communicating. Often times these groups can be facilitated by an SLP, or a trained volunteer. By engaging in those activities, you get an opportunity to practice your communication skills. You also get a chance to socialize with others and may have the opportunity to connect over a shared experience, which can support your mental and emotional wellbeing.
Use notecards or picture cards
Someone who has difficulty communicating may benefit from using notecards or picture cards to help communicate. They can be used to let a communication partner know your specific communication strengths and communication challenges. Written aids or pictures can also be used to communicate important information (such as your phone number and address), answer yes/no questions, communicate frequently used phrases, and help identify what you need.

Reading

Reading skills are a component of language. People with aphasia may have difficulty understanding words they are trying to read. Reading plays a large role in activities of daily living (ADLs), and aphasia-related reading challenges can impact a person’s abilities to enjoy hobbies, understand medical forms, and more. A speech-language pathologist (SLP) can assess reading skills and make recommendations for therapy to improve your reading ability. Some people find that increasing text size, reading slowly, reviewing what you’ve read, and using a line guide can help with reading. Following a stroke, visual deficits or impaired physical movement of the hand can also impact your ability to read and write; for these concerns, you can also work with an occupational therapist [5].

Writing

People with aphasia may have difficulty with written language, which could include: spelling words incorrectly, making grammar mistakes, or writing the wrong word. These impairments can make communication, hobbies, and other activities challenging. A speech-language pathologist (SLP) can help by assessing writing skills, focusing on various evidence-based therapy activities  to target these skills [6].

Dysarthria

Dysarthria is the term used to describe a speech impairment where the nerves controlling muscles for speech are damaged. Just like aphasia, there are many different types of dysarthrias. One of the most common ways used to describe dysarthria is “slurred speech”. People with dysarthria may have muscular weakness, a smaller range of motion with their lips and tongues, difficulty controlling volume and tone, and problems controlling airflow. While dysarthria can happen on its own, it is common for people with dysarthria to also have some form of aphasia.

Apraxia of speech

Apraxia of speech is another motor speech impairment that can occur following an acquired brain injury (or may be related to another neurological condition). Apraxia of speech is related to problems with motor planning or organizing speech. People with apraxia of speech make errors in the sounds of the words they say and can have difficulty with their rate and rhythm of speech. Apraxia of speech commonly occurs along with aphasia [7].

A speech-language pathologist (SLP) can help you with your speech by creating an individualized therapy program specific to your impairments. An example of what this could include is: learning specific strategies, completing speech drill-based activities, or completing strength-based exercises. Your speech may not be exactly the way it was before you had your brain injury, but with time and practice, many people see improvements.

See sources