I’ve had 4 brain injuries in 10 years – and I’ve met so many doctors who still don’t understand how to treat ABI

BY: ALYSON ROGERS

June is here and that means Brain Injury Awareness Month is here once again. Last year, I wrote a post about how awareness isn’t enough and we need to see action, in particular in terms of how concussions are responded to and prevented.

I wrote this piece from a very interesting standpoint: I had my first brain injury nine years prior and had experienced a concussion again in April of 2017. What I learned was, not a thing has changed in terms of what happens when you go to an emergency room with a head injury.

Even after nine years of increased awareness, it could have been 2008 all over again. My  diagnosis was slow, multiple doctors were unfamiliar with symptoms and none took them seriously.  My analysis of our healthcare system failure ended at the emergency room doors when I exited and returned to work two weeks later.

Brain injury action

It is said that once you have had one head injury, you are likely to be susceptible to another, and surprise, I had another concussion in September 2017.  I bent over to get something I had dropped on the floor at work and hit my head on the edge of a desk.  Depth perception issues were apart of my original injury so this isn’t too shocking. Based on my last experience, I skipped the whole emergency room circus, I knew the drill at this point and wasn’t showing any signs of a serious head injury such as vomiting or loss of consciousness.

I thought I had recovered from my head injury until I started experiencing, by far, the oddest and unfamiliar brain injury symptoms I’ve ever had. Between the rapid blinking eyes, stiff arms and shaking, it looked like I was having seizures yet all of my tests for epilepsy were normal. Fortunately, I found a great neurologist who has been successfully treating these symptoms through medication but it was an uphill battle to get to him and to treatment.

Last year, all I wanted was for the medical profession to put brain injury awareness into action. After my latest brain injury, I’ve seen them in action and it isn’t pretty. This wasn’t the action I was hoping for and isn’t what I need as a person with a brain injury.

In the past six months, I have had doctors tell me the type of brain injury I had ten years ago was impossible with no proof otherwise, attempt to diagnose me with mental health issues and not consider my pretty significant brain injury as a factor related to my current health issues.

I want the medical profession to take a pause and really take the time to learn about traumatic brain injuries and educate themselves beyond the symptoms we commonly associate with these

I’ve sat through four hour long appointments where I was taken through every detail of all four head injuries I’ve had and questioned about every decision I have ever made. It felt like I was on trial as a victim of a crime being cross examined by a defence attorney.  If I couldn’t remember something, I was questioned why that was. Maybe it’s the brain injury? I hear those could cause memory issues but just a guess.

Last year, all I wanted was action. This year, I want a pause. I want the medical profession to take a pause and really take the time to learn about traumatic brain injuries and educate themselves beyond the symptoms we commonly associate with these injuries. Doctors need to have a more comprehensive understanding of symptoms that go further than what they read in a concussion pamphlet if they are going to treat them.

When I acquired my brain injuries, I had to open Google and crack open some books to get the information I needed. People with brain injuries don’t have time for the medical profession to take a pause so better crack open that textbook.

PHOTO: Annie Spratt via LifeofPix.com


Alyson is 26-years-old and acquired her first brain injury ten years ago. She graduated from Ryerson University and is a youth worker at a homeless shelter. In her spare time, Alyson enjoys writing, rollerblading and reading. Follow her on Twitter @arnr33 or on The Mighty 

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May Community Meeting: Reading rehab + Advocacy and brain injury

BIST had two speakers come to our May community meeting: BIST member and writer Shireen Jeejeebhoy discussed her experiences trying to re-gain her love of reading and Katie Muirhead, advocacy specialist at the Ontario Brain Injury Association (OBIA), spoke about advocacy.

Reading Rehab

Before her brain injury, Shireen was a vivacious reader,  a person who could lose herself in a book for hours. But after her ABI, Shireen lost that ability completely. It’s how she learnt the hard way that literacy does not equal reading.

Shireen can read words and sentences but can’t remember the information from them. She often stops in the middle of a sentence, and is unable to retain new vocabulary. She said she usually  needs a nap after a reading session, and ABI-related initiation problems mean even choosing what to read is a problem.

After her brain injury, Shireen said she followed the medical model of re-learning how to read. She focused on one page at a time, and says it her a full year to read a simple book, which, she says, she remembers absolutely nothing about.

The interesting thing is, Shireen has written several books since acquiring her brain injury, because, as she explains, reading is taking stuff in, whereas writing is taking stuff out.

Shireen said her first illumination was learning the physiological reasons why she was having difficulty reading from a EEG test. Also, biofeedback treatments helped her remember characters and improve her concentration, though she was still unable to recall the book after she was done reading it. When her biofeedback treatment ended, Shireen could read for 20 minutes a day – what the average person reads. But Shireen is a writer who needs to read for hours and hours a day. 20 minutes isn’t good enough.

Which is why Shireen says she convinced her neuropsychiatrist to help her regain her love of reading. She says she didn’t want to go back to a reading “expert”, who would claim her reading abilities are fine. She needed someone to start from the ground up, and who would respect her goals.

While the road Shireen is taking is bumpy, her neuropsychologist’s treatment is helping. His first exercise was to take a newspaper article and to listen to Shireen read out loud in the same way she would read silently, for as long as she could. Shireen says this helped her doctor see her get a headache, repeat words and get tired from her efforts. From this he is able to work with her to help her, hopefully, regain her love of reading.

Reading is a solitary activity,

You can read what Shireen has written for our blog about her experiences here.

Brain Injury and Advocacy

Katie Muirhead is the advocacy specialist at OBIA, and survivors who need help accessing services or benefits they feel they are entitled to can contact her for assistance at:  kmuirhead@obia.on.ca or (905) 641-8877 ext. 229.

Katie explained that advocacy is different than lobbying. Advocacy is supporting a cause, and trying to get others to notice and pay attention to that cause. Lobbying goes a step further, and aims to make systemic changes – something which non-profits such as OBIA (and BIST) are unable to do.

There are four types of advocacy:

  • Self advocacy – advocating for your own interests
  • Peer advocacy – advocating for someone else’s interests
  • Systemic advocacy – advocacting for change for a larger group of people
  • Legal Advocacy – when a lawyer helps advocate for your legal rights

Focusing on self advocacy, Katie discussed that we all have some barriers to being good self- advocates. Maybe we get frustrated quickly and can lose our temper, or keeping track of paper work just isn’t our thing. What’s important, Katie said, is to recognize those weaknesses and get support in dealing with them.

In order to achieve your goal (for example, get on ODSP benefits) Katie said it’s important to break down the problem into more manageable pieces. For example, if you were denied ODSP, consider:

  • why you were denied
  • what are the facts about your case which you know are true
  • collect the right information (usually, additional medical information)
  • carefully look at the denial letter

Documentation is very important. Be sure to keep track of all conversations that you have about your case. Include the following in your notes:

  • the date
  • time
  • names of people contacted and their titles
  • agency name and telephone number
  • description of what was discussed

In addition, it is very important to keep track of your medical information. Katie suggests keeping a binder of all of your documentation – so that everything is in one place. Organize these documents in a way that you can easily retrieve them.

Communication Skills

Finally, advacating for yourself is a very stressful thing to do. Often you are advocating because you have denied something you need, such as financial benefits. It’s why Katie said self-care is so important. Things such as setting boundaries (I will not take calls or work on this issue during meal times, for example), talking it out with people you trust and trying to take time out from the case are very important. For more information, you can read Katie’s presentation here.

Katie Muirhand, Advocacy Specialist, OBIA
kmuirhead@obia.on.ca or (905) 641-8877 ext. 229

Next community meeting: BIST AGM – June 22, 2015; 6-8 p.m.

An Open Letter to Premier Kathleen Wynne re: proposed changes to no-fault accident benefits

The BIST board of directors has written a letter to Premier Kathleen Wynne and MPP Eric Hoskins to express our opposition to the proposed changes to no-fault accident benefits as outlined in the Ontario budget.

As described in the letter, the changes aim to drastically reduce available no-fault accident benefits for the most seriously injured motor vehicle accident victims in Ontario, which include many brain injury survivors. 

Concerned? You can sign the petition expressing your opposition to the changes and send a letter to your MPP. We’ve drafted a sample letter you can use, or you can write your own.

To find your MPP – enter your postal code on the Election Ontario site hereRemember your electoral district, and click ‘Information on your Member of Provincial Parliament’.

If you’re on Twitter or Facebook – help spread the word about the proposed cuts, and share or re-tweet our messages. Mention @BrainInjuryTO in your Tweets!

There is a rally planned at Queen’s Park on June 3 (tentative). We will update everyone  when more information is available.


 

The Honourable Kathleen O. Wynne, Premier of Ontario and
Honourable Eric Hoskins, MPP St. Pauls

Dear Premier Wynne and Mr. Hoskins,

The Brain Injury Society of Toronto (“BIST”) is a non-profit charitable organization which represents the interests of and advocates for individuals with acquired brain injury (“ABI”) and their family members in the Toronto area.

On behalf of the Board of Directors, I am writing to express our opposition to Schedule 17 of Bill 91, an Act to Implement Budget Measures and to Enact and Amend Various Acts in Ontario (“Schedule 17”). Schedule 17 will drastically reduce available no-fault accident benefits for the most seriously injured motor vehicle accident victims in Ontario. These proposed changes will worsen the lives of many ABI survivors and will increase the burden on our already overly strained publicly funded health care system.

Our primary issues with Schedule 17 are the following:

  • We oppose the proposed drastic reduction of available attendant care benefits and medical and rehabilitation benefits for catastrophically injured ABI survivors. Under this Budget, people with severe ABI, spinal cord injury, blindness or amputation will see their lifetime auto insurance health care benefits reduced from $2,000,000 to $1,000,000. This 50% reduction in available benefits will make life much more difficult for ABI survivors and their families. These vulnerable people are precisely the population that the auto insurance product was designed to protect.
  • We oppose the proposed re-definition of the term catastrophic impairment in the Statutory Accident Benefits Schedule. Our understanding is that this definition will be re-defined to make it more difficult for ABI survivors to access the higher level of benefits available to people with catastrophic injuries. The Liberal government is going to be exponentially harming ABI survivors and their families by concurrently reducing the non-catastrophic coverage while further restricting the ability of people to be confirmed as catastrophically impaired.
  • We oppose reduction of the standard duration of non-catastrophic medical and rehabilitation benefits from ten years to five years for all claimants except children. The shortened duration of medical and rehabilitation benefits is going to leave ABI survivors with poorer long-term outcomes and will therefore place a larger burden on the O.H.I.P. funded system.
  • We oppose the elimination of the $185 per week non-earner benefit beyond the two year anniversary of the motor vehicle accident. In order to qualify for this benefit, an accident victim must already have suffered “a complete inability to carry on a normal life.” People who qualify for a non-earner benefit are profoundly impaired. By eliminating this $185 per week non-earner benefit for people who were not working at the time they were hurt, your government is increasing the burden on the Ontario Disability Support Program and the Ontario Works program.
  • We note that Schedule 17 links the $30,000 deductible for pain and suffering claims in tort claims to inflation. We would like to note that the income replacement benefit in the auto insurance product has been capped at $400.00 per week since 1996. If this amount were linked to inflation it would currently be $570.85 per week.

On behalf of our organization, we are writing to express our opposition to Schedule 17. Reducing the available coverage to such a great degree will certainly result in ABI survivors receiving less privately funded medical and rehabilitation. Individuals who do not receive full compensation for their losses often end up relying on government funded organizations for the care and services that they require. In the ABI service sector, publicly funded services are already stretched to the breaking point. There is no capacity in the system to meet the needs of the current demand let alone any additional demand that would be diverted as a result of these changes.   Wait lists for specialized ABI residential services exceed 10 years and in some jurisdictions are non-existent.

It is the position of BIST that Schedule 17 should be amended so as to eliminate the changes to the definition of catastrophic impairment and to maintain the current level of benefits available to the catastrophically impaired. We also recommend that non-catastrophic claimants continue to have 10 years to use their benefits, that the income replacement benefit be linked to inflation and that the non-earner benefit remain payable as it is under the current system.

Thank you for your consideration of our letter.

Yours very truly,

Judy Moir, Chair of the Board of Directors

Brain Injury Society of Toronto