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.

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The slow and steady – reading rehab begins

Shireen Jeejeebhoy writes about her journey back to the love of reading. You can read the first post in this series here.

BY: SHIREEN JEEJEEBHOY

For most of my post-brain injury years, I’ve roared ahead at top speed trying to get my life back as quickly as possible. I worked hard to regain skills, the necessary ones and the ones which, are critical-to-me. I strived to become financially independant.

Then last year happened. It was tough. I learned you cannot control other people. Your health care and recovery are by necessity dependent on others, and when they don’t listen, you can either scream and stomp off, go with the flow and not heal much, or keep pushing. (And pushing and pushing while your PTSD hits the stratosphere as parts of your recovery slow to a crawl.)

close up of a woman reading a novel
photo credit: Goblet of Fire via photopin (license)

At some point, I stopped driving hard. It was almost a relief to move into the frozen lane. My neurodoc was probably relieved too.

That’s when reading books and long form articles halted altogether. That’s why my neurodoc said we are starting from zero with respect to my reading. Anything I do is an improvement, no matter how small.

And so we begin reading rehab with a few possible strategies.

After my neurodoc saw me read a portion of a Wall Street Journal article, he said the first thing I needed to do was relax and bring my anxiety under control. We discussed strategies I’m familiar with, but in a different way — with the encouragement from someone being alongside me – not as an expert telling me what to do.

shelves of books in a library
photo credit: Books at library via photopin (license)

First: I used my Mind Alive audiovisual entrainment device’s 15-minute alpha session to relax. Anxiety interferes with cognition and makes it harder to read. The key is to get rid of the anxiety, which will take awhile.

Next: I covered off the text, and used my fingers or a ruler to slow my reading down. Instead of using the Evelyn Wood method to speed up my reading, I used it to try and slow down so that my eyes worked at my processing and integration speed. The only thing is, I can’t use my fingers or ruler on an eReader or iDevice, so we will need to come up with a similar strategy for screens.

And finally: do a Toronto Sun-style summary of what I’d read. Let me tell you, when he had me summarize what I’d read to him as if it were for Toronto’s daily tabloid, it changed my task from being a university-level assignment to something do-able.

My neurodoc insisted I take home the WSJ article to trigger the things we discussed and to remind me I’m not alone.

He reminded me that the strategies we discussed this week are the barest beginning. I have a partner and someone doing the thinking, not as an expert in reading, but as an expert in listening and in me so as to come up with approaches to help me. Thank God for that.

You can read the full versions of Shireen’s posts on her blog HERE.