ABI Info Blog

The only way I can describe the first 3 years after my mTBI are “a living hell that I wouldn’t wish on my worst enemy”. I had extreme light and noise sensitivity. I kept the blinds pulled and relied on noise-cancelling earbuds, sometimes with ear protectors & pillows over top. The hum of the fridge in the kitchen and the dehumidifier in the basement drove me nuts. I couldn’t stand any music at all or two conversations going on in the same room. Walking into a drug store felt like going to a rock concert. I couldn’t stand the sight of things moving, it took 8 months to be able to sit up with my eyes open in a moving vehicle. It was over a year before I could look at a TV screen. It took a year to be able to walk at a normal speed without triggering a headache.

What I needed most then was hope. I’m 9 ½ years post-accident now. Let me warn you as a member of a club you never wanted to join – the road ahead is long and incredibly hard, but things can get better, a lot better. Ignore anyone who tells you that you’ve reached maximum recovery. Push yourself. Find ways to work on all the things that are hard for you now. Be creative. Do a little more of those hard things every day even if it triggers your symptoms. Keep being willing to try different things. Be diligent in what you eat and remove any pro-inflammatory foods. Get sugar out of your diet (yes, I know how hard that is). Eat lots of avocados and olive oil. Take high doses of Omega 3 & Vitamin-D. Get your hormones checked and supplement if necessary. Do whatever it takes to improve your sleep. Learn to meditate, even if it’s not your thing. You need to calm your central nervous system down. Become aware of your thoughts and squash the negative ones. And at the top of the list – EXERCISE!! It did more for me than any of the therapies I paid for. The progress is infinitesimally small, but the baby steps eventually add up. I have climbed mountains to get here, but things are a lot better now.

A Traumatic Brain Injury (TBI) or any other serious accident can have devastating impacts on a person’s financial situation so it’s helpful to be aware of any programs that can help reduce household expenses. The Government of Canada has a program where Internet Service Providers (ISPs) can participate and offer low-cost, high-speed Internet to low-income seniors and families. Access Communications, Bell Canada, Cogeco, CSUR, Hay Communications, Mornington, Novus, Rogers, SaskTel, Tbaytel, TELUS, Vidéotron and Westman Communications are all participating in offering improved Internet quality, coverage and price to eligible Canadians in this national “Connecting Families Initiative”. This initiative recognizes high-speed internet service is no longer a luxury, it is essential to our economic and emotional well-being, and the private sector has an important role in bridging the “digital divide”.

Connecting Families Initiative Quick Facts

• When the program was initially created, eligibility included families receiving the maximum Canada Child Benefit (CCB); however, in Aug 2021 a 2^nd phase of the program was announced, and eligibility was expanded to include “low-income seniors”. The Connecting Families webpages do not yet define the criteria for “low-income” seniors.
• Eligible Canadian families can access high speed Internet service packages for as little as $10 per month from participating Internet Service Providers.
• For those who need faster download or upload speeds, a package that provides 50 megabits per second (Mbps) download speed with 200 GB of data usage for $20 a month is also available. The download and upload speeds in this package will be five and ten times faster respectively than the $10/month option. If 50Mbps is not available in a particular region, this package will provide the highest speed available in that region.
• No equipment or installation fees will be applied.
• Families eligible under the program will receive a letter from the Government of Canada with an access code that is required to sign up for the initiative through a secure online portal.
• The participating ISPs are voluntarily contributing to the initiative by offering low-cost Internet service to eligible families. The government is not subsidizing ISPs to provide the low-cost Internet service.

Rogers

Rogers’ program is called “Connected for Success” and it is available in Ontario, New Brunswick and Newfoundland. In addition to being available to the families and seniors eligible under the “Connecting Families” initiative, it is also available to additional low-income people. If you live in subsidized housing (rent-geared-to income – RGI) or are a recipient of Ontario Disability Support Program (ODSP), Ontario Works (OW), the Maximum Child Care benefit or are a senior who receives Guaranteed Income Supplement (GIS), you may be eligible for their “Connected for Success” Program. Internet services within this program range from $10 to $35 per month for 25 to 150 mbps service. For example, their 50mbps unlimited package is typically $70 per month; however, through this program it costs just $15 per month. The program provides unlimited usage, so there won’t be overage fees. The installation is free and there is no contract. Rogers Ignite TV service can also be added on for an additional $40 per month (a 50% discount).

A representative indicated Rogers plans to expand the program to include other low-income criteria, such as Canada Pension Plan Disability (CPPD) but does not currently have timelines for this enhancement.

This program is only available in areas where Rogers offers service. You can check to see if Rogers is available at your address by entering it on this webpage.

If you apply for internet service only, there won’t be external credit checks done; however, if you are currently a Rogers customer and are behind in your payments by more than $300, you must set up a payment plan before accessing the Connected for Success Program. If you plan to bundle in TV services as well, external credit checks will be done.

Further details about the program, supporting documentation requirements, toll-free phone number for agents familiar with it and a link to the application can be found on this webpage.

Bell & Cogeco

Bell and Cogeco are both participating in this program but don’t seem to have added information to their websites advertising it or explaining it further. Their customer service agents indicated people who live in their service area who receive a letter and code from the government indicating they qualify for the “Connecting Families” initiative can contact them directly to make the necessary arrangements.

TELUS

The TELUS “Internet for Good” program provides eligible low-income families with low-cost Internet connectivity in BC and Alberta (in areas where service is available). It provides internet plans for $9.95/month (plus applicable taxes) for 24 months; (regular pricing thereafter). It includes speeds of up to 25 Mbps (where available) and up to 300 GB data/month. There is no contract or cancellation fee.

Families who have a Canada Child Benefit (CCB) statement showing their net income of less than or equal to $31,120 can email TELUS directly at InternetforGood@telus.com with a copy of their statement and request for a program code. Other families who do not meet this criterion but are in need should discuss their situation directly with their child’s teacher or principal who can request a code from TELUS on their behalf

Further details about the program, email address and toll-free phone number for agents familiar with it can be found on this webpage.

 

These are significant discounts and certainly worth your time and energy to look into them, even if you need a family member or friend to help you with it. Please share this information with anyone you feel may benefit from it.

 

 

I recently met a brain injury survivor who is a role model for us all. Her name is Kanika Gupta and she was one of the scheduled speakers at a public information session about brain injury. The event had been advertised to the organization’s own brain injured clients and their families. Kanika was the third speaker and as she walked to the podium, the lights in the room dimed. She started her presentation by making note of it and indicating she had asked the organizers to dim the lights for her presentation. She then asked the audience how many people have light sensitivity and many of us raised our hands. She scanned the audience and said hmmm… more than half the people. She then began her presentation and I was immediately captivated. She was out in front of the podium, talking casually but confidently. I felt she must have been doing public speaking all her life.

She began her talk by indicating that in 2013 she sustained a concussion and has been living with lasting symptoms ever since. She has been plagued by headaches as well as light and sound sensitivity. Although she wasn’t an artist at that time, she found the only thing that gave her relief from her symptoms was drawing and colouring, so she did a lot of that. Her drawings typically depicted what she was going through. She later decided to pull her drawings together into a book so she could give it to her family and friends to help them understand her issues better. The book represents the story of her journey and what she has learned along the way.

As she described her life since her accident, images from her book were displayed on the screen beside her to bring her words to life. She indicated it bothers her when people ask her for more details about her accident. Her view is the details of her accident aren’t important; there are a million different ways people can hit their heads. She feels what happens after the brain injury is all that matters. I couldn’t agree more. Some accident victims seem to enjoy telling the details of their accident. In her book, Kanika indicates that speaking about what happened often forces people to revisit unpleasant experiences or painful memories.

She describes what it takes for her to go out in the world now. For her to attend a wedding, a party or a gathering of friends she has to wear her wide-brimmed hat and sunglasses, noise-cancelling headphones and hide out in the dark corners of the room. But she is there. Hanging out in dark corners isn’t fun, but it allows her to show up. She is doing whatever it takes to continue to participate in life. When she does head out into the world with her hat and sunglasses permanently in place (indoors or out), she just wants to participate and to blend in with the crowd. She doesn’t want extra attention. She’d rather people didn’t comment on the hat and sunglasses, but she finds invariably they do. She has concluded the issue isn’t hers, its theirs. People are uncomfortable with anything different. She has learned it is a reflection of them and it has absolutely nothing to do with who she is. Over time she has gained more confidence and is choosing to own it. She has decided to move forward boldly and unapologetically. She has a beautiful collection of hats. If she has to wear a hat and sunglasses everywhere, then so be it, she’s going to rock them!

Like so many of us, Kanika speaks very well so her issues are to an untrained eye, “invisible”. Her book and presentation provide a request to society to accept the things you don’t fully understand, to do all you can to further your knowledge about invisible disabilities like brain injury and to do what you can to make a brain-injured person in your life more comfortable. This may mean dimming the lights, closing the shades, switching seats in a restaurant to make the person more comfortable, turning off the music and the ceiling fan, closing the window, speaking one at a time and perhaps even speaking more slowly. If the person is willing to tell you what will help them participate in the world, please, listen and do what you can to accommodate them.

At the end of her presentation, Kanika boldly asked the audience if they’d like the lights to remain dimmed during the next speakers’ presentations and those of us with photosensitivity all applauded. The irony is not lost on me that an organization putting on an event specifically targeted to brain-injured people and their families could watch a bunch of people file into the room wearing wide-brimmed hats, sunglasses and noise-cancellation headphones and still need to be specifically asked to dim the harsh lights. We have a long way to go.

At the end of the event, I went and found Kanika and got emotional as I thanked her for her presentation and for having the courage to speak up and use a voice that not all of us have found yet. She stood up from signing my copy of her book and we hugged it out. Kanika has appropriately titled her book “Brave – Living with a Concussion”. Her brother tells her she’s the bravest person he knows. In her presentation Kanika asks those still suffering the effects of concussion to think about how they are going to be brave and to think about how they are going to show up in the world. We are all going to have to follow Kanika’s lead, square our shoulders, calmly educate those around us and ask for what we need.

Kanika’s book is a perfect tool for starting the conversation with your family and friends. She has generously made the book available for free viewing online. So, read it yourself and send it to everyone you know. Better still, support Kanika in her work and buy a copy and pass around a good ‘ole hard copy book. Then continue the conversation and tell the people in your life what makes your symptoms worse and what they can do to help you be more comfortable.

Ever since her presentation I’ve been trying on different hats in stores. I’m looking for just the right one. One that’s practical and will block the fluorescent lights in stores and doctors’ offices, but one that I’m proud to wear. I need it to bring me confidence so I can channel my inner Kanika and “rock the hat and sunglasses” as I follow her lead and assume my role as an advocate for invisible injuries.

My neurosurgeon, Dr. Charles Tator is quite well renowned in the world of concussion. During my first appointment with him he indicated “You’ve probably figured out by now that the medical community doesn’t know much about concussion. If you ask 10 different doctors what a concussion is, you will get 10 different answers. But the one thing we do know is that concussion is cumulative.”

We all need to be careful, but people who have already sustained an Acquired Brain Injury (ABI) need to be especially careful to ensure they don’t sustain another blow to the head. I have met a few ABI survivors who have received another hit to the head and all of them said it brought all the symptoms back to the level they were at after their initial ABI.

With all the freeze/thaw and freezing rain we have had in Ontario this winter, we all need to be especially careful and proper footwear is a must. Here’s a website that shows the results of thorough testing on various boots’ treads in terms of how well they perform in various winter conditions. This site is being updated to reflect the current year’s model of boots.

http://www.ratemytreads.com/

My winter boots were still in good shape, but I read these reviews and ordered two pairs that I felt would work best for the type of walking I do. When they arrived, I compared the two different models by seeing whether my foot slid or gripped on our tile kitchen floor. Some models of boots actually have little shards of glass or metal embedded in the sole, but I felt they would be slippery if you walked from outside into a store. Because I needed to be able to go into stores or doctors offices with them, I went with ones with a softer more grippy rubber instead. For very serious icy conditions when you still have to get out, I recommend putting Kahtoola microspikes right over your boots. Then when you get to where you are going you can take them off your boots and put them in your coat pocket.

Better safe than sorry!

Katy Kumar, who runs the Ontario Brain Injury Association’s (OBIA’s) help line recently discovered a very important article and has shared it with her network in the industry. From past brain injury conferences I have attended, I too had started hearing that the latest research was indicating that the old advice of complete physical and mental rest in a dark silent room after a concussion was proving to not be the best advice beyond a couple of days.

According to this article, “the study by University at Buffalo researchers and colleagues, is the first randomized clinical trial of a treatment in the acute phase after a sport-related concussion.” The goal of the study was to evaluate allowing adolescents who had sustained a concussion to resume a level of activity that didn’t trigger their symptoms (after a few days of rest).

The study included 103 kids aged 13-18, with nearly equal numbers of boys and girls. All were seen within 10 days after sustaining a sport-related concussion. The study found “patients who followed the aerobic exercise program took on average 13 days to recover while those in the control group, who performed stretching exercises, took 17 days. In addition, fewer patients in the exercise program took longer than four weeks to recover than did patients in the control group.”

““This research provides the strongest evidence yet that a prescribed, individualized aerobic exercise program that keeps the heart rate below the point where symptoms worsen is the best way to treat concussion in adolescents,” said John J. Leddy, MD, Director of the UB Concussion Management Clinic at UBMD Orthopaedics and Sports Medicine.”

To determine how much exercise each patient could tolerate without triggering their concussion symptoms, researchers had the patient walk on a treadmill while they gradually increased the incline until the patient’s symptoms worsened. They recorded the patient’s heart rate at the point the symptoms worsened. Researchers then prescribed exercise at 80% of that heart rate. Patients wore a heart rate monitor so they could make sure they stayed below the threshold while exercising. Patients performed their assigned exercise for about 20 minutes each day in the beginning, but the amount of exercise was gradually increased over time (as symptoms improved).

Another key finding in the study was “the lower the threshold of activity at which symptoms increase, is a key clinical indicator of how severe the concussion may be”.

The researchers plan to investigate if the treatment is also effective in adults with concussion. I’m very much looking forward to seeing those results as well. I personally believe that regularly attending organized exercise classes has had a big impact on my recovery. Feel free to use the comments section below to share your thoughts on/experience with exercise & concussion recovery.

To read the full article click the link below.

http://www.buffalo.edu/news/releases/2019/02/002.html

A friend of mine was at Toronto Western Hospital today and sent me a copy of this flyer advertising a two-night workshop on lingering symptoms from concussion. The last session of 2018 is being held this week on the nights of  Nov 6 & 8  (i.e. two nights total) from 7-9pm at Toronto Western Hospital.

Thankfully they are considerate of the people who would like access to the information but can’t make it to their session in person so they recorded past sessions and put the videos online. You can access the videos using this link:

https://www.uhn.ca/KNC/Research/Projects/Canadian_Concussion_Centre/Pages/patient.aspx

 

Unfortunately there are all too many stories of concussion in sport. This particular one highlights the long lasting cognitive, mood and personality changes that can occur when concussion symptoms persist or when Chronic Traumatic Encephalopathy (CTE – which can result from many concussions) develops. Unfortunately the football associations themselves often seem more concerned with running defense than with helping the injured player. Sadly, in this situation they did not follow the concussion protocols that have been developed for sports.

In Canada, Parachute Canada has developed these sports protocols . This story highlights the incredible long-lasting impacts concussion can have on the injured player and on that player’s family and the friends that choose to stick by him/her afterwards. If you are a coach, team doctor or therapist or even a parent with a child in a sport we all need to play a role in ensuring these protocols are followed and if the person does receive a brain injury, please do your part in spite of the personality changes to help the person down the long road to recovery.

 

 

I discovered a good TEDx talk from a brain researcher in Vancouver, Dr. Lara Boyd. In it she describes the chemical and structural changes that occur in your brain during neuroplasticity (brain changes). The key points I took away were:

• Her work with people recovering from stroke shows a lot of variability in results from person to person.
• The primary driver of brain change is your behaviour. “There is no neuroplasticity drug you can take. Nothing is more effective than practice at helping you learn. The bottom line is you have to do the work.”
• Increased difficulty/increased struggle in what you are practicing results in not only more learning but also greater structural change in the brain.
• Neuroplasticity can be either positive (e.g. learn something new) or negative (e.g. become addicted to drugs, have chronic pain).
• Neuroplasticity is shaped by everything you do and everything you don’t do.
• There is no one size fits all approach to learning. There is no one intervention that will work for all of us. This has forced the researchers to look further into “personalized medicine” (unique interventions).
• Biomarkers in the brain are helping them to match therapies with individual patients recovering from stroke.
• Not only do we need personalized medicine, we need personalized learning.
• Even for people without a brain injury/stroke, behaviours in your everyday life and things you encounter are important because each of them is changing your brain for better or for worse.
• Break bad habits. Do the positive learning that your brain requires. Build the brain you want.

The Ontario Neurotrauma Foundation (ONF) has recently released a new Concussion Information Booklet for Patients and Families. It is excellent and I hope multiple copies are delivered to every hospital emergency room and general physician’s office for distribution to people with a concussion. Here is a link to download a copy of it:

http://concussionsontario.org/wp-content/uploads/2018/04/ONF-Concussion-Booklet-Web-Feedback-link.pdf

Representatives of the ONF were at the recent Concussion Public Forum in Toronto to distribute copies of it. They indicated they would like to receive feedback on it from patients and families at info@onf.org or through Twitter @ontneurotrauma.

The representatives indicated the purpose of this guide is to help you navigate through the industry after potentially receiving a concussion. The ONF has developed concussion standards by working with 100 stakeholders including people with lived experience and their family members. They found that concussion was becoming a business and people were calling themselves “concussion experts” without proper training. The ONF’s concussion standards and this guide are intended to help deal with this issue.