How to redefine yourself after brain injury

BY: ALISON

Most people don’t realize that the most painful part of living with a serious health issue is losing your identity.

When every day things – that you’ve never given any thought – become difficult and you’re no longer able to do the things that you enjoy, you constantly feel self-conscious, misunderstood, and pressure to be who you once were, especially around people that knew you before your injury/illness.

It feels like you’ll never stop grieving the loss of your old self. To cope with this and to pre-emptively explain themselves, I’ve noticed that a lot of people with brain injuries are very quick to share a detailed recount of their medical history, even with people they’ve just met. This makes me sad to hear, because it means that they have likely turned their injury into their identity. As a result, the injury becomes the only thing that their peers see in them, too.

People from this community also tend to talk more about their past lives than their current ones. For example, they often tell you about the things they used to do; i.e. their past careers, the sports they played, or their hobbies, talents, and skills from before their acquired brain injury. This may be because, on some level, they worry that the current version of themselves is lesser than their original version. Although this line of thinking is understandable considering the constant reminders they have of their new limitations, it is completely untrue. Here’s how I changed the way that I define myself and how I measure my self-worth now.

After a debilitating brain injury, I wasn’t able to tolerate any form of stimulation which meant that I wasn’t able to do anything. I couldn’t even lift my head off the bed to take a sip of water without excruciating pain and exhaustion. At my lowest point, I was absolutely useless to the world and had become a huge burden to my caregiver. But luckily, I have always believed that every life serves a purpose and adds value to the world. So, I refused to accept the notion that I had become worthless. First, I allowed myself to mourn the loss of my old life and then I accepted the reality that things would never be the same. I never gave up hope that things would improve but even if they didn’t, I resolved to do the best with what I had and live my best life. The next step was to figure out who the new me was.

I asked myself, who am I if I can not work, socialize, or volunteer anymore? Can I still tell people that I love to travel if I may never travel again? Am I still considered a TV and movie lover if I no longer watch them? Am I still a foodie if I can’t cook or eat in restaurants? That’s when I realized that I had been using the wrong definition of “self” all along, because I had based my identity on things that I “do”.

Who we are is not simply a sum of our jobs, likes and dislikes, and strengths and weaknesses. Even our thoughts don’t make us who we are; it’s what we do with those thoughts that does.  Eckhart Tolle coined my favourite philosophical definition of the “self”. Paraphrasing in my own words: The real you is the part of your mind that’s aware of your thoughts.

Too often, we base our self-esteem on measurable things such as salaries, belongings (e.g. cars, jewellery, wardrobe), size (e.g. waist, chest, bicep, etc.), fitness abilities, and achievements (e.g. professional and conventional life stages). I decided that I would define myself and measure my self-worth based on the choices that I make. Every time you try again, exercise patience with yourself, focus on what you have as opposed to what you don’t (or how far you’ve come as opposed to how far you’ve left to go), show appreciation to people that have helped you, or do something that helps your health (e.g. drink a glass of water or stretch), you’re building character and proving your value. Internal decisions such as these are significant victories, especially in the face of struggle.

So, who am I? Before my brain injury, I would have answered that question with my profession, travels, and plans for the upcoming weekend. Now, I will tell you that I am grateful and funny, that I’m learning, I persevere, love dogs, and care about others. The more important question is, who are you?

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‘Mind Yourself with Alison’ is a collection of self-help tips, research, and personal experiences dedicated to helping people thrive after brain injury (or other health problems). Check out Alison’s other BIST Blog articles Women and Brain Injury: What you need to know and How to be a Good Friend to a Survivor.

 

 

 

 

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Useful tools or symptom inducers? On using smartphones when you have a brain injury

BY: BLUE HELMET GIRL

I had my accident in July 2015, right in the middle of the smartphone era. About a month after my TBI, I was in the hospital and I got my phone back for the first time. I tried to reply to a text. It didn’t work. My brain tried to tell my fingers to type, but nothing happened. The connection was lost.

Four years later, the connection is back. And now, I rely on my smartphone more than ever for certain things. There are so many pros with smartphones when dealing with a brain injury, but there are also cons.

Pros:

• Calendar: Having a calendar app on my phone is what I rely on the most. My app can set reminders for events. I have inconsistent appointments, so I set the event to remind me the day before. Also, having your schedule with you is helpful for planning stuff on the go.
  • App I use: iCal

• Reminders: If I remember I need to pay a bill but I’m away from home, right away I put it in my reminders app. If I don’t do this, I will forget it by the time I get home. I set reminders at a specific time that I know I will be available to do this task.
  • App I use: Reminders (iPhone)

• Medication Reminders: Sometimes I’m in a rush and forget to take my meds. Every day, I’ll get a reminder at the same time. If I forget to take it, I can use one of the extras I carry with me when I’m out.
  • App I use: Pill Reminder

• Headache Tracker: I find tracking headache symptoms on the go helpful, rather than trying to remember how I felt the next day. It’s not ideal to be looking at a screen with a headache, but it can pay off to notice patterns with symptoms.
  • App I use: Headache Diary Pro

• Step counter: Monitoring my steps throughout the day is helpful for my energy levels. When I reach 10,000 steps, I know it’s time to rest or I will burn out.
  • App I use: Health (iPhone)

Cons:

• Blue light: That nasty blue light on your phone is the worst for your eyes and can be a nightmare when you have a headache. For me, I find it drains my energy if I look at it too long.

• Social media (energy): I can get into a deep Internet hole with social media accessible at any time. I set myself daily limits and when I reach them certain apps will lock.

• Social media (emotional): Seeing friends living their best lives while I’m at home on the couch sucks. This can be detrimental for a person’s mental health, especially if their injury prevents them from doing certain activities.

In conclusion, there are a lot more pros than cons to my smartphone usage. There aren’t many cons, but those that exist can be significant.  All one has to do is find strategies to deal with the cons so that the pros can be enjoyed. In a way, we are lucky to have smartphones to help us deal with our injuries, and make life a bit easier.

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The Blue Helmet Girl is a woman in her mid-twenties who acquired a TBI 4 years ago, and after 3 open head surgeries, has recovered remarkably. With a high level of organization skills and self-awareness, she hopes to help others by sharing her unique story and strategies. In her spare time, you can find her hanging out with her dog, taking pictures or writing in her journal.

Follow her on Twitter @theBHjourney, on Instagram @bluehelmetjourney or www.thebluehelmetjourney.com

 

 

 

 

Why are we more susceptible to developing dementia after brain injury?

BY: SOPHIA VOUMVAKIS

A post on this blog by Alison discussed research which suggests that those of us who have sustained a Traumatic Brain Injury (TBI) have a higher risk of developing dementia, including Alzheimer’s, one of the causes of dementia.

Alison also provided some great advice on maintaining a healthy lifestyle and how participating in key activities can help reduce the risk of dementia from Alzheimer’s.

I’ve also read that those who have sustained a TBI are at higher risk of developing dementia. To clarify, dementia is a set of symptoms that consistently occur together. It is not a specific disease. Dementia is caused by damage to the brain cells, Alzheimer’s disease is the most common cause of dementia. Other causes are Parkinson’s disease, Multiple Sclerosis, Huntington’s Disease and stroke.

I recently came across some interesting new research which sheds light on the possible cause of increased risk of Alzheimer’s in people who have sustained a TBI, and a couple of more suggestions we can employ to reduce the risk of dementia caused by Alzheimer’s.

The Glymphatic Network – A New Discovery

The research is out of the University of Helsinki in Finland, and its findings were published in the Washington Post on May 21, 2017. Like many breakthrough discoveries in science, this finding was accidental.

Kari Alitalo, a scientist at the University of Helsinki had studied the lymphatic network for two decades. The lymphatic network carries immune cells throughout our body and removes waste and toxins. For over three hundred years it was believed that the lymphatic network stopped at the brain. It was accepted wisdom.

Three years ago, Alitalo wanted to develop a more precise map of the lymphatic network. To do this, he used genetically modified mice, whose lymphatic vessels glowed when illuminated by a specific wavelength of light.

When viewing the modified mice under the light, a medical student in Alitalo’s lab noticed that the heads of the mice also glowed. This went against the common wisdom that the lymphatic network did not extend to the brain. At first the scientists suspected that there was something wrong with their equipment, and when they repeated the experiment, they got the same result – the lymphatic network does indeed include the brain.

Working independently, several scientists, including Maiken Nedergaard at the University of Rochester and Jonathan Kipnis of the University of Virginia School of Medicine, have also shown that the lymphatic vessels extend into the brain.

This discovery has major implications for a variety of brain diseases, such as Alzheimer’s, Multiple Sclerosis, and stroke which cause dementia. It also provides an explanation of why those of us who have sustained a TBI may be more susceptible to developing Alzheimer’s.

Researchers have identified two networks: the vessels that lead into and surround the brain, and those in the brain itself. The first network is the lymphatic system for the brain, and the second is called the glymphatic system – the addition of the “g” is for the glia neuron, that makes up the lymphatic vessels in the brain.

The glymphatic vessels carry cerebrospinal fluid and immune cells into the brain and remove cellular trash from it. The analogy that Nedergaard employs to describe this system is a dishwasher for the brain. When the lymphatic and glymphatic systems do not function properly, the brain can become clogged with toxins and suffused with inflammatory immune cells. Over decades, this process may play a key role in Alzheimer’s disease, Huntington’s disease, Parkinson’s disease and other neurodegenerative diseases.

Nedergaard told the Washington Post, “This is a revolutionary finding. This system plays a huge role in the health of the brain.”

Malfunctioning of the Lymphatic and Glymphatic Systems and the link to Alzheimer’s Nedergaard and Helene Benveniste, a scientist at Yale University, have found evidence that links the malfunctioning of the lymphatic and glymphatic systems to the development of Alzheimer’s. In a study of mice, they found that glymphatic dysfunction contributes to the buildup of amyloid beta, a protein that plays a key role in the disease.

In 2016, Jeff Iliff, a neuroscientist at Oregon Health & Science University, along with several colleagues examined post mortem tissue from 79 human brains. They zeroed in on aquaporin – a key protein in glymphatic vessels. In the brains of those with Altzhiemer’s, this protein was jumbled – in those without the disease, the protein was well organized. This suggests that glymphatic breakdown plays a key role in the disease.

The link to TBI

How does all this relate to TBI and an increased risk of Alzheimer’s? The scientists have shown that in mice, a TBI can produce lasting damage to the glymphatic vessels, which are quite fragile. Mice are a good model, Nedergaard explains, because their glymphatic systems are very similar to humans. She has found that months after a TBI, the brains of these animals were not clearing waste efficiently, leading to a buildup of toxic compounds, including amyloid beta. Returning to the dishwasher analogy, Nedergaard likens it to using only a third of the water required, you’re not going to get clean dishes!

Strategies to improve the functioning of our Glymphatic System Sleep

Important to the healthy functioning of the glymphatic system is sleep. Nedergaard has demonstrated, at least in mice, that the system processes twice as much fluid during sleep than it does during wakefulness. She suggests, that over time, sleep dysfunction may contribute to Alzheimer’s and other brain diseases. We clean our brain when we are sleeping – this is probably an important reason we sleep.

Nedergaard and Benveniste have also found that sleep position is crucial. In an upright position – sitting in a chair – waste is removed less efficiently. Sleeping on your stomach is not very effective; sleeping on your back is somewhat better, while sleeping on your side proves to be the most effective, although why this is the case isn’t known.

Other ways to improve glymphatic flow

Other ways to improve glymphatic flow are also being studied. In January, Chinese researchers reported that in mice, omega-3 fatty acids improved glymphatic functioning. I relate this to other advice about staving off the risk of dementia I’ve come across – following a “Mediterranean” diet, which is high in omega-3 fatty acids.

Benveniste is also examining the anesthetic dexmedetomidine’s ability to improve glymphatic flow, while in a separate, small human study, researchers have found that deep breathing significantly increases the glymphatic transport of cerebrospinal fluid into the brain.

Alitalo is experimenting with growth factors – these are compounds that can foster regrow the of vessels around the brain. He is currently using this to repair lymphatic vessels in pigs, and is now testing this approach in the brain’s of mice who have a version of Alzheimer’s.

Currently, there are no clinical therapies in treating Alzheimer’s and other brain diseases, however this particular mechanism of brain disease has only just been discovered and as Alitalo says “give it a little time.”

In the meantime follow Alison’s advice on strategies to prevent, slow down, and possibly even reverse cognitive decline and remember to include good sleep hygiene and a diet rich in omega 3 fats, and take some deep breaths.

Source: Washington Post

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Since her TBI in 2011, Sophia has educated herself about TBI. She is interested in making research into TBI accessible to other survivors.

The waves of ABI-related trauma

BY: MARK KONING

If you ask me, any type of brain injury is traumatic, whether it is acquired by a motor vehicle collision, an aneurism, a viral infection etc.

Living with the challenges of ABI, which can include headaches, nausea, fatigue, chronic pain – among other countless symptoms – can be brutal, and this brutality often comes in waves. Brain injury is often invisible, episodic, and quite often, not understood.

Sometimes I think the real trauma of acquiring a brain injury comes after the actual injury itself. I think many survivors of brain injury handle the initial challenges of their injury better than the ongoing aftermath, the reactions from others to their injury, and their own mental well-being.

I am happy for those that try, for those that don’t turn away. I am lucky to be in the position I am and to have the support I do. Nevertheless, at times, it feels as though the trauma continues.

There are times I think it is my fault: for pushing myself too hard, or for not saying enough. There are other times I simply want to yell and scream. Sometimes I even get confused and scared simply by looking in the mirror and questioning my own feelings.

I don’t want to explain what fatigue means for me, I don’t want to justify why or how it is that I just know my headaches are not the same as yours, I want to stop feeling stupid every time I forget something and I see that look on the faces of others.

The trauma lives on.

I am doing the best I can.

I don’t want anyone to feel sorry for me, I just want them to understand. Because if others can start to do that, perhaps I can keep moving forward without feeling like one step up means two steps down.

Then maybe, I can put the trauma to rest.

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Mark’s passion to lend a helping hand, offer advice and give back has developed into a moral and social responsibility with the goal of sharing, inspiring and growing – for others as well as himself. His experience as a survivor, caregiver, mentor and writer has led to his credibility as an ABI Advocate and author of his life’s story, Challenging Barriers & Walking the Path. Follow him on Twitter @Mark_Koning or go to www.markkoning.com

The Ultimate Guide to board games for brain training

BY: ALISON

Without lights and sounds associating with gaming apps or consoles, board games are less stimulating than other activities and require very little physical exertion. They were among very few things that I was able to do during the acute phase of my injury.

Board games are great for brain training and reconditioning. In fact, I suggested board games as a mentally challenging activity in my previous article, Having a brain injury increases your chances of dementia: here are activities that can help and are great for encouraging and facilitating social interaction.

After my injury, I wanted to avoid my friends, because conversations were exhausting and difficult to follow. But playing board games with friends was perfect. I got the social connection that I needed without having to engage in deep conversation. Also, the pressure and focus was off of me, since everyone’s attention was directed towards the game.

Not to mention, board games are super fun (heck, they’ve withstood the test of time), provide hours of distraction, and can be played solo. I didn’t need assistance or company for entertainment.

The selection of board games is endless, so there’s always something new to try.

Photo: Pixabay via  Pexels

 

How to challenge yourself using board games:

The following guidelines will teach you how to train your brain by gradually increasing the difficulty of your board games. The steps should be tackled one at a time, moving forward only when you are confident with the previous step. Be patient with yourself, as you may need weeks or months before advancing. Regular practice and repetition are the keys to success here.

Step 1:

In the beginning, focus only on learning and following the rules of the game. Don’t worry about speed or trying to win. Simply learn the basics of how to play. Play as many times as needed to become familiar with it. This will improve your learning and memory skills.

Step 2:

If you’re playing a game by yourself, then play with the goal of improving your result, speed, or efficiency. For example, depending on the game, you could try to collect more points, finish the game more quickly, or finish the game using fewer moves. Work through one objective at a time.

If you’re playing a game with others, figure out one strategy that will help you win the game. However, the focus should be on discovering and practicing the strategy, not on winning. This promotes problem-solving skills. If you’re stuck, ask the person you’re playing with to teach you their approach. Once you’re familiar with the first one, see if there are other strategies that could help you win the game. Determine which one(s) are the most effective. Eventually, the goal is to use a combination of strategies at the same time. This is great practice for multi-tasking skills. You might even start winning more games.

Step 3:

Now that you’ve figured out how you like to play the game, it’s time to pay attention to how your opponents are playing. See if they make decisions differently from you, figure out what their strategies are, and try to predict their next moves. Compare their approach to your own, see which one is more effective, and learn from them. Furthermore, think of new tactics that will prevent your opponents from winning. This will exercise your analytical and critical-thinking skills.

Finally, try to improve your chances of winning. You will likely need to change your plan multiple times throughout a game in order to adapt to new scenarios/problems and to circumvent your opponents. Once you become really good at the game, start these steps over again with a different game.

Board games that can be adapted for single players:

While it’s better to play board games with other people, one-player games allow you to practice at any time. Some of the board games listed were not originally designed for single players, but you will find solo variant instructions online. The following suggestions vary widely in difficulty and cost.

Word Games

Scattergories

Bananagrams

Scrabble

Boggle

Honourable mention: Code Names – Although this game cannot be played solo, it is, in my opinion, the best word-focused, brain training game. It allows you to practice communication, word associations, and different thought processes. The cards could even be used separately for reading and comprehension.

Pattern Games

1. Set – This simple card game is really good for unique pattern-recognition, concentration, and different lines of thinking.
2. Bingo –  even more fun if there are small prizes to be won.
3. Puzzles
4. Carcassonne – No language skills are required to play this tile-based puzzle / strategic game.
5. Enigma – Includes fragment puzzles and 3-D puzzles among other challenges.

Honourable mention: Sudoku – This is not a board game, but it’s great for figuring out number patterns. The difficulty ranges from easy to very hard. Also, you can find free printable sudokus online.

 Fine Motor Skills Games

1. Jenga – Try Giant Jenga if fine motor skills are an issue.)
2. Perfection – There’s the original version with 25 pieces and a more affordable version with only 9 pieces. This game also has a pattern-matching/puzzle component to it.

Photo: Pixabay 

Honourable mention: Building blocks and sets (e.g wooden blocks, jumbo cardboard blocks, Mega Bloks, Lego, K’Nex, etc.) – These aren’t board games, but they’re great for stimulating creativity.

Memory Games

1. There are many different versions of matching card games that were designed to practice memory skills. See here for more information, you could also play this type of memory game using a regular deck of cards.

General Knowledge Games

1. Cardline – Variations include: Globetrotter, Animals, Dinosaurs
2. Timeline  – Variations include: Diversity, Historical Event, Inventions, Music and Cinema, Science and Discoveries

Problem Solving or Brain Teaser Games

1. Mindtrap  – A game with many riddles, brain teasers, and picture puzzles.

2. Enigma – This includes math-based and various puzzle-based challenges.

3. Robot Turtles – This is a kids game that can be used to practice logical thinking, planning ahead, and improving efficiency. It was originally designed to introduce programming fundamentals to kids.)

Strategy Games

1. Single-player card games, such as Solitaire (played with a regular deck of cards, Instructions on how to play can be found here) or Friday – a survival / battling card game.
2. Catan Dice Game – a settlement-building game was designed for one or more players.
3. Pandemic – The object of this game is to treat and eradicate diseases before they spread out of control.
4. Imperial Settlers – This empire-building game was designed for 1 or more players.
5. Blokus – This tile-placement game does not require language skills.

Adventure Games

1. Mage Knight – This is the most complex and expensive board game I’ve listed in this article. It is a strategic game that is based in an adventure and story. The game includes instructions for solo play, but there are many pieces and rules, so I suggest watching YouTube videos, HERE and HERE that help explain them.

My Favourite Games Stores:

1. Walmart

Walmart doesn’t have a large selection of unique games, but every now and then they have great sales on classic games. I purchased the following games for less than $20 each while they were on sale: Scattegories, Bingo, puzzles, Jenga, Perfection, Sudoku books, and decks of playing cards.

2. 401 Games

This is my favourite board games store. They have an extensive selection, competitive prices, and incredibly knowledgeable staff. They have a storefront at 518 Yonge Street, Toronto, and an online store as well.

Although their store is wheelchair accessible, their games room for events is not. If you want to avoid a crowd, go before 3 pm or shop online. I suggest ordering your games online and then picking them up at the store to save on shipping. If transportation is an issue, shipping is a flat rate of $8.95 per order. Shipping is free for orders of $150 or more.

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Mind Yourself with Alison’ is a collection of self-help tips, research, and personal experiences dedicated to helping people thrive after brain injury (or other trauma). Check out Alison’s other BIST Blog articles Women and Brain Injury: What you need to know and How to be a Good Friend to a Survivor.

Fatigue and the heat wave

BY: MARK KONING

There is a saying, ‘no two brain injuries are alike.’

This is true, every acquired brain injury is indeed different. But these horrid ABIs share some commonalities, and one in particular is fatigue.

photo credit: Holographic Circus Wume / Aural States via photopin (license)

Similar to brain injury, fatigue is invisible. I find it to be hiding in the corners of my brain, lurking in the shadows. It seems to be ready to jump into action at any given time of the day. A nap, or extra rest, does not cure it.

Fatigue:

extreme drowsiness, typically resulting from mental or physical exertion or illness.

I’m not sure if people understand the effect fatigue has on someone living with a brain injury. I find it comes in waves and at various levels of low, mild and extreme.

It is a silent paralyzer, and never a pleasant experience. It is disorienting. One could almost wonder how much worse it possibly get?

Remember last summer? 2016 was the hottest year on record. This summer we have some relief, but the heat and humidity persist on most days, and they are a lethal instigator of fatigue.

photo credit: jo3design [DSP] May 18: Heat Wave via photopin (license)

While I’m not sure what is the best way to beat this devastating duo of fatigue and the heat wave, I know there must be a way to deal with it.

Perhaps it is inner strength, or knowing how to slow yourself down and breathe. Maybe the answer is to go for a nice cool swim or take a cold shower. Regardless of how staggering it can get, like with many things, I will get through it and survive.

I’m sure any of us who come up against these monsters can do the same. (And remember, fall is just around the corner.)

But sometimes I wonder, which is harder? Dealing with the fatigue or dealing with the fact that others don’t understand why I’m dealing with the fatigue. Maybe it is me not always telling people that I’m trying to deal with the fatigue.

Wow, that’s confusing, but that is also brain injury.

Mark’s passion to lend a helping hand, offer advice and give back has developed into a moral and social responsibility with the goal of sharing, inspiring and growing – for others as well as himself. His experience as a survivor, caregiver, mentor and writer has led to his credibility as an ABI Advocate and author of his life’s story, Challenging Barriers & Walking the Path. Follow him on Twitter @Mark_Koning or go to www.markkoning.com

Wisdom gained from 20 years of living with ABI in 4 mantras

BY: JEAN OOSTROM

I write today about the passage of time after brain trauma.

Since acquiring a brain injury as a result of a stroke in 1997, some thoughts have helped with my recovery:

I never gave up.

But other thoughts have hindered it.

Immediately following a brain injury, a diagnosis – be it a concussion, stroke, combat trauma, or PTSD – can be a word that both the brain injured person, and the people who care for that person, can use to start to recover.

For the people who care for the brain injured person, a diagnosis can provide a research tool or an avenue for questions so recovery can proceed.

For the person with the brain injury, a diagnosis can provide a much needed answer and recovery options.

But with the passage of time, that original diagnosis can become a label, which may hinder recovery.

With the passage of time, caregivers might wonder if they have missed something, that could move recovery in a different direction.

With the passage of time, the person with the brain trauma might start to accept the fact that, ‘this is as good as I am going to get.’

Which is why thoughts like these have helped me recover, with the passage of time:

At times I played the role of caregiver for myself and trusted my recovery options

I’ve been down and out, pulled myself up and made it to the other side

The brain trauma will always be part of my life, but it will not rule my life.

After suffering a stroke, Jean coined herself “the voice for the brain injured person” and provides information “from the brain injured point of view” so people can find answers as they “learn to live with their new brains” after all types of brain trauma.

Jean shared more of wisdom in 2016 during Brain Injury Awareness Month: