April 2018 Community Meeting Recap: Alternative Treatments to Heal a Brain Injury

BY: JULIA RENAUD

Spring has finally sprung which has hopefully brought you some pep in your step or zeal in your wheels to feel better during this chilly year! Bringing some extra encouragement to April’s BIST Community Meeting and to shed some light on alternative treatments that he used to heal his brain and body, was teacher, author, motivational speaker, and brain injury survivor, Anthony Aquan-Assee.

Anthony Aquan-Assee holds his book Rethink, Redo, Rewired in front of the BIST Office

Anthony’s Story

Anthony began by telling the harrowing story of his first brain injury. In 1997, Anthony was a middle school teacher and coach of the school football team. He was excited about his team qualifying for the city finals and was anxious to get to football practice to prepare them for their upcoming big game. On his ride to practice, Anthony, an avid motorcycle rider, was struck by a car, sending him and his motorcycle flying. This landed Anthony at the beginning of a long road to recovery.

The paramedics arrived at the scene of the accident to find Anthony unconscious and in a very grave state. He was then airlifted to St. Michael’s Hospital, where he would require numerous extensive surgeries, including: neurosurgery, heart, lung, general, vascular, knee, throat, and plastic surgery.

It was an emotional and trying time for his family and friends who were uncertain if Anthony would ever wake up from the coma that had kept him unresponsive for two weeks, and if he did, what his quality of life would be post-injury. His doctors were worried that Anthony could remain in a vegetative state for the rest of his life.

 Start doing what’s necessary; then do what’s possible; and suddenly you are doing the impossible.
Quote included in Anthony’s latest book, Rethink Redo Rewired

He started with opening his eyelids, and progressed from there, giving himself and his family hope with every gain, no matter how small. Anthony graduated to a rehabilitation centre where he worked tirelessly to regain control of his body and mind. Eventually, Anthony was able to return to work as a school teacher, but his brush with brain injury didn’t end there.

Sixteen years later, Anthony was struck in the head by a malfunctioning automatic gate which left him with a concussion. Fatigue, dizziness, brain fog, memory loss, and sleep problems were only a few of the symptoms that he dealt with on a daily basis. Unfortunately, these symptoms persisted bringing with them anxiety and frustration. When his doctors prescribed “drugs, drugs, and more drugs” to help, Anthony began to question whether there was a better method to spur his recovery.

Alternative Treatments Anthony Found Effective

*From the top, Anthony stressed that while these treatments worked for him, each person is different; therefore, everyone’s experience is different. Prior to trying any of the following alternative modalities, he encourages you to discuss any treatments that you are considering with your doctor.*

These techniques are described in more detail in Anthony’s fourth book, Rethink, Redo, Rewired: Using Alternative Treatments to Heal a Brain Injury

Anthony realized over the course of his recovery that, for him, the prescribed medications were only acting as a bandage solution rather than getting to the root cause of the problem. He disliked being on the same medications as he had been on previously, after his first brain injury, and felt that there must be a better way.

This is when he turned his attention to alternative strategies and treatments, which, as he would learn, had the power to get to the root cause of the problem rather than masking it. Furthermore, alternative strategies “provided the necessary conditions for the body to heal itself”, and, as an added bonus, they came with no side effects!

The following is a list of techniques that Anthony found effective in his recovery that he thought might be helpful to share:

  • Neurofeedback
  • Laser Therapy
  • Kangen Water

Fun, Brain-Training Resources

For those of you dealing with a brain injury and looking for a way to train your brain, Anthony has included links to a bunch of online activities and games ranging from math, to art, to optical illusions on his website.

Next Community Meeting:
Wednesday, May 30th 6 – 8 p.m.
TOPIC: Chair Yoga with Occupational Therapist & Yoga Instructor, Kristina Borho 

Everyone is welcome!


 Julia Renaud is a very talkative ABI survivor with a passion for learning new things, trying new activities, and meeting new people – all of which have led her to writing this column. When not chatting someone’s ear off, Julia can be found outside walking her dog while occasionally talking to him, of course!   

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

BY: SOPHIA VOUMAKIS

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.

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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.

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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.”

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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.

Man sleeping on his side

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


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

15 things you don’t know about Abby Schnurr Mongkonrob, BIST volunteer of the year, survivor / thriver category

Meet Abby Schnurr Mongkonrob, winner of our Volunteer of the Year, Survivor / Thriver Category!

Abby is someone who is always willing to help out with anything and everything we need, from being an amazing photographer at our 2017 5K Run, Walk or Roll to co-curating our Expressive Art Show for the past two years. When she’s in the office or at a program, you know she’ll lifting the spirits in the room by cracking jokes or offering an empathetic ear to anyone who could use it.

Congrats Abby – it’s volunteers like you who help make BIST strong!

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Abby on a BIST Community Outing to the Hockey Hall of Fame in 2017

16 things you don’t know about me in 16 words or less: I’m a teacher, TV actor, digital music producer, artist, photographer, graphic designer – the list goes on!

I was brought up with good family values: treat everyone equally, respectfully and kindly. I instilled these things in my students as a teacher and this is what I act now as a TBI Survivor and volunteer.

The reason I began volunteering for BIST was: the group of ladies [on staff at BIST] gave me hope. Hope and meaning like I mattered. I didn’t quite understand my TBI for the longest time. Being around others around who shared the same experience urged me to help them while I was also unexpectedly helping myself in the process.

I found support with BIST but also enjoyed engaging with other survivors through their outings and activities, especially the creative arts which I guess is the teacher side of me coming out. My old self resurfaces once in a while when I am with BIST and that is a good feeling.

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Abby strikes a heroic pose with her family at the 2017 5K Run, Walk or Roll

If I could pick any job in the world, I would be: A well-known actor, but not famous. Just well-known. I don’t like the spotlight on me, I like to choose when to be in the spotlight. Also music producing is something I’d like to get in to.

I have an (irrational or otherwise) fear of:  not being in control. Being alone. Death, I think about it every day. Not being able to control my suicidal ideations, which are part of my TBI linked with mental health struggles.

I don’t like snakes but I really like spiders.

My greatest assets as a volunteer are: I’ve been told I’m funny and quirky. Effective communication with other TBI survivors, patient, friendly and helpful. I feel the need to help to take care of them, it’s the teacher in me.

My friends would describe me as: Quirky, a big kid, funny, kind and unpredictable.

If I could invent a super power, it would be: to record our dreams and watch them on TV. Maybe they already have that. LOL. But it’s pretty cool anyways. You can learn a lot about yourself in your subconscious existence.

What inspires me most about BIST is: taking part in the events and feeling appreciated and needed.

If I won $1 million dollars I would: keep it for myself! Give some money to my family, because my parents are always there and so is my sister, no matter what. I would buy my husband and myself a food truck because my husband wants to sell Thai food. I would open a tranquil coffee shop. I would try and help the homeless because I know how to feels to be in poverty.

My personal hero is: any child or adult survivor of an injury, addiction, abuse, mental health, illness or disease that they have conquered or are in the process of conquering.

 My celebrity “crush” is: David Tennant, I think he’s brilliant. I also like Chris Pratt and Noami Watts.

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My favourite BIST event is: going to the movies! And the yearly art show, this is my second year co-curating.

A quote/motto I try to live by is: treat others as you would like to be treated – Karma!

If I could volunteer anywhere in the world I would: volunteer for Make a Wish Foundation, go to Disney World with the kids.

One time, as a kid, I:  had a radio show in my basement with friends and cassette tapes, the good old days. I won a spot on a 107.9 morning show with Anwar Night and Larry Silver when I was in grade six. Anwar Night was cute, he’s a weather guy now.

I am most proud of: my husband, for moving all the way from Thailand to support me and take care of me.

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Abby and her husband at our Holiday Party in 2015

My favourite BIST moment from this past year is: when Spider Man came to High Park on picinic day – I felt like a big kid!

 

 

15 things you don’t know about Kevin Redmond O’Keefe, BIST volunteer of the year, caregiver category

As a small non-profit, volunteers are a central part of how BIST is able to do what we do. Meet our Volunteer of the Year, Caregiver Category Kevin Redmond O’Keefe who for years has come to our office on the third Wednesday of the month, every month, to co-facilitate our Parent Support Group.

Thank you Kevin for all your hard work – you have made a big difference in the lives of ABI caregivers!

The reason I began volunteering at BIST:  My sister had an acquired brain injury from a car accident 23 years age and I went to a support group for a couple of years at Bloorview. At the time Caron Gan was running the group and she asked me if I would come on as a co-facilitator. She said she wanted a gender balance of facilitators and that having a family member facilitate would be a good idea. A couple of years ago when I found out that Bloorview wasn’t able to do the group and BIST offered to take it over, it seemed as a natural progression. The important thing for me was that the group continue.

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Kevin on a night on the town with his sister and niece!

If I could pick any job in the year, I would pick:  For 25 years I’ve been a TV producer making documentaries for TV stations. I’ve been lucky that I usually work on projects that I’m passionate about. Right now I’m trying to decide if I want to work at a TV station or go out on my own and start my own production company. So I guess if I could choose, it would be to start my own production company and only work on projects that I love.

I have an (irrational or otherwise) fear of: I don’t think I have any specific fears. I’ve traveled pretty extensively and worked in some pretty dangerous places. e.g. during the civil war in Sri Lanka or in the capital of Honduras which, at the time, was the murder capital of the world. This past year I just returned for working in Haiti which was challenging. I guess I have a fear of trying to figure out what I want to do for the rest of my life (see previous question)

My greatest assets as a volunteer are: I think I’m a good listener and I really enjoy getting people to share their stories. Caron Gan gave me good advice when I first started to volunteer– she said that my job was not to solve people’s problems but to get them to share their story. That took a lot of the pressure off because sometimes I felt bad if we didn’t solve everyone’s problems during the meeting. Since Caron’s advice during the group I look at the people who are not talking and try to get them to open up. I find sometimes those are the most powerful moments.

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Salsa dancing with Takashi

My friends would describe me as: Hahahaha. I just emailed my friends as part of a career counselling questionnaire on me, so I have all their answers: warm, friendly compassionate, honest, hard working and committed.

If I could invent a super power, it would be: something to prevent Acquired Brain Injuries  – even though it has enriched peoples’ lives it has also caused a lot of pain and suffering to a lot of people.

What inspires me about BIST is:  Oh my god – family members. Their unbelievable love, devotion and commitment to their children.  They’re all super moms and dads. They have such persistence and tenacity to help their kids. It’s just awe inspiring the way they can overcome obstacles and the incredible strength and courage they have to pick themselves up and keep moving! After every group meeting I leave inspired for sure!

If I won $1 million dollars I would:Oh gosh! I would produce whatever documentaries I wanted as the fundraising is always a challenge. I would use it to do my passion projects. I would also take time off to travel with my husband. We plan to go to Japan for our honeymoon and still haven’t had a chance to do that. (I got married a year ago)

My personal hero is: I’m working on a documentary now on a young Indigenous man from Nova Scotia. Last year he did a Pride parade on his small reserve with a population of under 4,000. He did it because a lot of LGBT Indigenous people had committed suicide and he wanted queer people to feel like they belonged. He is an amazing guy to talk to – to see his wisdom and compassion.

My “celebrity” crush: Lisa Vanderpump! She is on the Real Housewives of Beverly Hills and also has a spinoff show called Vanderpump Rules. I like watching her shows and the last time I was in West Hollywood, I went to her restaurant Sur and her bar called Pump. I think she’s funny, glamorous and she also does a lot of animal rights work. My guilty pleasure is watching her shows.

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❤️ Lisa Vanderpump ❤️

My favourite BIST event was: an art exhibit of survivor’s art. One of our group member’s mom had photographs of her son’s work, such sensitive works and was a really an amazing idea.

Kevin’s favourite BIST event is happening this week!

Don’t miss our Community Fair & Expressive Art Show on April 26, 4-7 p.m. at Christ Church Deer Park. 

A quote/motto I try to live by is: I got from a meditation book I’m reading. It says, “When you’re going through a difficult time try to be as compassionate to yourself as possible. And even try to be compassionate to yourself about your inability to be compassionate to yourself”. (in other words, we all beat ourselves up sometimes and that’s okay too)

If I could volunteer anywhere in the world: I guess I would volunteer in a warm climate, doing something fun cuz I’ve just finished a documentary and have seen a lot of devastations, natural disasters. Maybe as a volunteer on an animal reserve or working with children. I looked at an organization called Right to Play: children who have suffered because of poverty and war and they help children do normal things, playing and helping at the same time.

One time, as a kid:I built a volcano. I used to do a lot of building, mechanical stuff, creative things growing up.

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On a shoot in Haiti

I am most proud of: the people in my life who have overcome tremendous obstacles whether it be my sister, the people I do the documentaries on like the young aboriginal man or the families I meet at BIST.

My favourite BIST moment from the past year is: At one of our family support groups we all went around the room and talked about whether this experience has made us better people or a worse people. We got some really emotional, powerful answers and we all agreed that in the end, even though we would never chose to go through this, we had all become better people.

Expressive art show sneak peek – you’ll be amazed at what Abby creates with her smart phone

The art work keeps pouring in for our Beauty + The Beast: The Good + Bad of ABI Expressive Art Show – happening Thursday, April 26 4-7 p.m. at Christ Church Deer Park. And while we are already knew BIST members are a talented bunch – and this year’s art show submissions are truly amazing!

To give you a taste of what is to come, check out our Expressive Art Show co-curator, Abby Schnurr Mongkonrob’s amazing work, which she creates using her smart phone.

Our Expressive Art Show & Community Agency Fair is a FREE event, but some of our Expressive Artists will be selling their art, which includes: greeting cards, photography and other crafts – so you’ll want to bring your wallet!

Abby Schnurr Mongkonrob

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BIST Community Agency Fair & Beauty + the Beast: The Good + Bad of ABI Expressive Art Show | Thursday, April 26, 4 – 7 p.m.
Christ Church Deer Park, 1570 Yonge Street (North of St. Clair) www.bist.ca/community-fair

 

15 things you don’t know about: BIST volunteer of the year, Ambassador Category, Tonya Flaming

The reason I began volunteering for BIST was:  While I was still a discharge planner at SickKids I was asked to join the awareness committee and I jumped at the opportunity.
Tonya Flaming holds up an #areyouaware button

If I could pick any job in the world, I would:  An actor – I love the idea of taking on different characters and pretending to be someone else for just a little while.

I have an (irrational or otherwise) fear of: Bears – although I go camping every year.

Picture of a sign that reads:

My greatest assets as a volunteer are: My flexibility, enthusiasm, and my ability to jump in where I am needed.

My friends would describe me as: Kind, fun loving, up for just about anything, and someone who loves to dress up!

If I could invent a super power, it would be: To be able to touch people and fill them with compassion and the inability to be mean to or hurt others.

 


What inspires me most about BIST is: I have been involved with BIST for quite a few years now and it has been incredible to see to the organization grow and expand their reach to help even more people. BIST is filled with amazing people are constantly coming up with innovative and creative ideas to create awareness and help those living with the effects of a brain injury.

If I won $1 million dollars I would: buy a big country home and fill it with children in need and rescued animals.

My personal hero is: Would have to be my Opa – Roelof Spikman.  He was a young married man with young children living in the Netherlands during the war. In reading his memoires there are stories of being taken prisoner of war, biking 250km to get home and then joining the Underground – or the Dutch Resistance movement. What he lived through and fought for was incredible. After the war he then packed up his young family and moved them Canada and started a brand-new life. Opa Spikman was someone who was loved and respected by all who knew him.

My celebrity “crush” is: Jensen Ackles aka Dean Winchester…Carry on my Wayward son, there’ll be peace when you are done.

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My favourite BIST event is: The Halloween Bash in support of BIST. I know I helped organize it – but I love to dress up (hence the actor side of me.)

A quote/motto I try to live by is: There are two mottos’ in my life – “It is what it is, but it will become what you make of it”. And the second, which my kids always hear me say – “There is a solution to everyone problem.”

If I could volunteer anywhere in the world I would: Join Animal Hope and Wellness and help to put an end to the dog meat trade.

Tanya Flaming dressed as a cop, red background

One time, as a kid, I:  I lived out in the country just outside of Guelph. My brother and I (I was around six and my brother was around ten) left the home at the crack of dawn with a saw and chopped down our own Christmas tree, dragged it home and decorated before my parents even woke up. Apparently, it was an ugly tree, but my parents kept it up anyway 😊

I am most proud of:  My children. Sometimes I sit back and look at them and think, wow, I have really good kids. We all try our best as parents but when you see you children emulating the characteristics you are trying to model you can’t help but feel proud (and a bit relieved!)

Tanya F- Halloween Bash

My favourite BIST moment from this past year is: The Inaugural Halloween Bash in Support of BIST. It was a fantastic evening filled with great costumes and we were able to raise money for BIST. Can’t wait for next year!!

 

This Fresh Tomato Day: make your own ketchup

BY: JANET CRAIG

Did you know April 6 is Fresh Tomato Day?

Bowl of Homemade ketchup

And did you know ketchup can be so much more than a bottle of what you get at the grocery store?

Our favourite chef Janet Craig knows ketchup has so much more potential when you make it at home. Here’s her recipe, all you need to do is combine the ingredients below and blend in a food processor.

And think beyond the fries: Janet’s recipe a great topping for grown up food, such as chicken or other meats.
    • 2 cans drained mandarin oranges
    • 2 cloves of garlic
    • 1 large shallot, peeled
    • 1 tbsp lime or lemon juice
    • 2 inch piece of fresh ginger
    • 1/2 cup White Vermouth
    • 1/2 cup Maple syrup
    • 1 tsp Five Spice powder
    •  1 tsp hot sauce
    • 1 tsp salt ( optional)

Use your food processor to blend together and enjoy!

a plate with green beans, pork dressed with homemade ketchup, squash and potatoes
PHOTO: JANET CRAIG

Chef Janet Craig recipes are simple, healthy, delicious and ABI friendly.  You can find out more about her HERE.