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.
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
Toronto’s Recollectiv is not your typical musical troop.
It is a group where people living with conditions such as dementia, post-traumatic stress disorder (PTSD), acquired brain injury (ABI), Alzheimer’s or Parkinson’s disease can come together to create and experience music.
But it’s also about improving group members’ quality of life, what Recollectiv’s founder, Ilana Waldston, says is about, “Rediscovering joy by making music.”
Waldston’s mother lives with dementia – and like others living with chronic conditions – her mother spends a lot of her time with doctors, social workers, and other professionals.
“[My mother] was a very vibrant, active woman,” Waldston said. “As her disease progressed, she lost so many of the activities she loved … singing [is] one of the few things left we can share that makes us both happy.”
Waldston sees Recollectiv as a way for individuals to focus on what they can do, as opposed to what they have lost.
“The main takeaway of Recollectiv [is to] touch others’ lives through group music making, something so fundamental and universal that elevates everyone’s quality of life,” Waldston said.
Recollectiv is inspired by the California band The 5th Dementia, created by couple Carol and Irwin Rosenstein.
Irwin Rosenstein, who practised real estate law, lives with Parkinson’s and early dementia. After his diagnosis, the couple realized Irwin Rosenstein’s memory, energy, and well-being improved when he played and taught music to others. This is backed by research, music therapy alters the chemistry in the brain by stimulating the release of dopamine, which effectively increases energy and improves mood.
In addition to The 5th Dementia, the couple created the non-profit MusicMendsMinds (MMM) whose mission is to support the mind and spirit of those affected by neurological disease, cognitive decline, and PTSD through musical groups. There are currently nine MMM affiliated bands in the U.S., mostly based in California, with other bands forming in the Philippines, other U.S. states, and the organization has been a supportive partner with Recollectiv.
The organization has also inspired a documentary, to be released this summer:
Back in Toronto, Waldston says finding activities for her mother has been difficult.
A trip to the symphony, an outing both Waldston and her mom previously loved, became challenging when her mother began to sing or talk along with the music, something generally not appreciated by fellow audience members.
It’s that stigma and feeling of non-belonging surrounding neurodiversity that Recollectiv hopes to neutralize in the future.
“I want [the public] to realize that people with cognitive challenges are just like them; they deserve to feel good about themselves, have friends around them who care and, above all, have some fun,” Waldston said.
Waldston hopes Recollectiv, which is a project of Smile Theatre Company, can lead to the creation of new groups and communities where people can access support and share a joyous activity together.
“I have lived long enough to know that life is short and unpredictable,” Waldston said. “You can’t fix a lot of things that cause people pain but if you can bring happy moments back into their lives, that’s a huge achievement.”
Recollectiv will meet in Central Toronto on Saturday afternoons in an accessible and barrier-free location. There is no cost for participation, and anyone who wants to sing and or play an instrument, regardless of any physical or neurological diversity, are welcome to join.
Robin Ly is a Bachelor of Social Work student at Ryerson University graduating in spring 2018. She has been completing her fourth year placement with BIST and loves that she’s able to get back into writing to talk about advocacy, awareness, and transformative change.
Just on time for Super Bowl Weekend – or if that isn’t your thing – a Valentine’s / Anti-Valentine’s feast – our favourite chef Janet Craig brings you Baked Cocoa Wings!
This is a ‘rub’ that could be used on chicken wings or drumettes. The recipe could be doubled or tripled and stored in a glass jar for future meals, it’s also great on ribs so go ahead and enjoy!
Three tablespoons chili powder
One tablespoon unsweetened cocoa powder
Two tablespoons flour – this can be gluten free or cornmeal. The fat in the skin of the wings will make them crispy.
One tablespoon garlic powder
One teaspoon cinnamon
Two teaspoons cumin powder
One teaspoon salt and pepper
1⁄2 teaspoon cayenne (optional)
1⁄3 lb chicken wings per person (appetizer portion)
1. Mix all the rub ingredients together and dust the wings well.
2. Cut off the wing tips, reserving them for another use such as
stock if desired, and halve the wings at the joint. Pat the
wings dry, season them with the rub mix .
3. If using the oven, place on the parchment lined cooking
sheet, under a preheated broiler about four inches from the
heat for ten minutes. Turn the wings and broil them for ten
minute more, or until they look crisp.
Lime Mayo Dip
One cup mayonnaise
Juice and zest from one lime
One clove of garlic minced
Two tablespoons fresh cilantro chopped
½ small seeded jalapeño-finely chopped (optional)
Chef Janet Craig’s recipes are simple, healthy, delicious and ABI friendly. You can find out more about her HERE.
Tuesday, March 19, 2013, an adventurous ski getaway in Whistler, B.C. changed the course of Michael Levine’s life forever. A Class 2 avalanche struck while Levine, along with his brother and a friend, were hiking up the back side of the mountain in the backcountry of Whistler Blackcomb. Levine’s friend and brother escaped relatively unscathed, Levine at first did not.
“I was fully buried under four feet of snow,” Levine said.
Beginning the search, both his brother and friend were miraculously able to locate him and first discovered his snowboard boot, Levine’s brother and friend were quick to react and shoveled him out, to find him unconscious and non-breathing.
“They went to clear my airway and found my mouth was full of snow,” Levine said. “They [shook me] and moments later, I began breathing on my own.”
The Whistler Avalanche search and rescue Team helicoptered into the area to rescue Levine, his brother and friend. They were then transported to the Whistler Health Care Centre, where the life-saving rescue made the news.
Diagnosed with a concussion at first, Levine took a flight back to Toronto a mere two days after the accident. He showed up for work that week, as a financial adviser at a downtown Bay Street firm, where his Branch Manager immediately recognized something wasn’t right with his health.
“My eyes were completely blood shot, I had headaches and sensitivity to screens, light and noise,” Levine said.
So began Levine’s journey to recovery. In fairness, Levine says, not many health practitioners treat avalanche survivors in Ontario, and many did not know what to do. He was determined, trying to find the right care until he started treatment at the David L. MacIntosh Sport Medicine Clinic at the University of Toronto. It was at the MacIntosh Clinic where Levine learned he had sustained an anoxic brain injury due to lack of oxygen to the brain, in addition, to his concussion.
“The recovery was extremely challenging for the first two years,” Levine, who says he has not taken any prescription medication or over-the-counter pain medicine since his injury. “I was advised by my doctors to take a leave of absence from work which started out as three months, then turned into six months, and then it ended up being a year and a half.”
Skiing in the backcountry is at your own risk and adventure seeking skiiers are strongly suggested to proceed with caution. Levine, his brother and friend were experienced and equipped adventurers prepared for the day.
Whistler, appeared safe and enticing despite having variable weather patterns that week, and Levine was capable and adaptable to the conditions when the event occurred. Doctors said his health beforehand helped him survive and recover, initially, as well as he did.
Levine had no choice but to adapt to this new way of life. His exercise routine had to change. Elevating his heart rate put too much pressure on his brain. Socializing and working became a much slower pace than he was used to. He limited his workout routine to gentle yoga and the stationary bike. He had to give up weight lifting for over a year. He dealt with short term memory loss, fatigue, lack of energy and continued to experience sensitivity to light and noise.
Levine says the multidisciplinary team at the Toronto Rehabilitation Clinic, where treatment included occupational, physical and speech therapy moved him to the next level of his recovery. Cranial Sacral Therapy, Levine says, got him even closer to the final recovery stage and it became a significant part of his ongoing support to improve his health.
“I knew what I was capable of before the accident,” Levine said. “Now I had to learn to adapt to this new way of life. I had to really listen to my body and if I really don’t have any energy I had to say no to people or events. It was a learning experience.”
Levine says it wasn’t ‘just one thing’ that helped with his recovery. Talk therapy was also an important component to my recovery during the second phase. Not to leave out the fact that food is medicine for Levine and he focused on nutrition and supplements.
Levine says recovery from a brain injury also became a chance to find his true purpose and reevaluate what is important in his life. He took a detour from the financial world for two years and worked as a stylist in the menswear industry. This allowed him time and space to reflect, heal, reorganize and prioritize.
Today Levine is back in the finance office, working full time developing a business with a team. He is mindful of his time management balancing work, social, rest, exercise, and achieving optimal health and well being in today’s fast pace environment. And congratulations to Levine he has just completed the 200 hour yoga teacher training at YogaSpace.
“Yoga has been a part of my life for the last seven years,” Levine said. “It’s a great way for me to give back, and share with others in the community.”
You can catch Levine’s community class at YogaSpace this Sunday, January 28 and on Sunday March 11 at 8:45 a.m. on both days. He’ll also teach at the Attic at Lululemon (318 Queen West) on March 17 at 3 p.m. The cost is $5, and all levels are welcome, Levine says he teaches a strengthening flow class, which is open to beginners and more experienced.
We have a hunch a lot more is coming for this ABI thriver, especially for you yogis out here.
“I’d love to customize a [yoga] sequence for ABI survivors,” Levine said.
To help you partake, our favourite Chef Janet Craig has created this easy Pho Soup recipe. Give it a try, and cook up some deliciousness, health and warmth this chilly season. Here’s to soup!
One tetra pack of Pho broth
Four ounce rice noodles
One, four-ounce piece of beef steak, (round, top sirloin), slightly frozen
Two cups of bean sprouts
Shredded carrot or red peppers
Green onions, sliced lime, basil, mint, and /or cilantro to garnish
1. Bring the Pho broth to the boil. If you wish to add more seasonings like fish sauce, ginger, or garlic, this is the time.
2. Cover the rice noodles with boiling water & let sit for 10 minutes.
3. Take the steak & slice it very thin. This is why you put it in the freezer for a bit.
4. Place the steak, noodles, and vegetables into large bowl.
5. Pour on the very hot broth. Meat will turn opaque.
6. Soup is usually served with hot Chili/garlic sauce .
PHOTO: JANET CRAIG
Chef Janet Craig’s recipes are simple, healthy, delicious and ABI friendly. You can find out more about her HERE.
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.
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.
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.
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.
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.
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.
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.
Set – This simple card game is really good for unique pattern-recognition, concentration, and different lines of thinking.
Bingo – even more fun if there are small prizes to be won.
Carcassonne – No language skills are required to play this tile-based puzzle / strategic game.
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
Jenga – Try Giant Jenga if fine motor skills are an issue.)
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.
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.
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.
Blokus – This tile-placement game does not require language skills.
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:
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.
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.