The importance of family in rehab

BY: JODI HARENDORF

A few months ago, my husband and I were invited to our youngest daughter’s high school for an academic award ceremony. As I sat with about 200 other family members waiting for our kids’ names to be called, I thought about how lucky she, and the other students, were that so many parents and family members could be present for this special occasion.

PHOTO CREDIT: BRAIN LINE
PHOTO CREDIT: BRAIN LINE

I also thought, what would happen if I couldn’t have been there to support her? Would her life have been significantly affected if I hadn’t had the luxury of being able to reschedule my work day to be there? Of course not.

But what happens to people who suffer traumas who do not have a support system? Who advocates for them when they cannot advocate for themselves? Who helps them navigate through the complexities of the medical, legal and insurance systems? Who sits by their bedside, and cares for them during the early days of recovery? Who holds them when they cry and cheers them on when they succeed?

The support system plays such a significant role in the recovery and therapy process, and can also significantly affect the outcome.  The process of recovery from a serious trauma or injury is difficult enough without having to go through it alone. How does someone who cannot communicate make their wishes known? How does someone who needs care or supervision rely on strangers to provide this care? To have familial support can be the difference between someone finding the strength and motivation to cope and carry on versus giving up.

The family plays such a crucial role in the rehabilitation and recovery process that some would say that it is one of the most critical factors in determining outcome.

I’ve had two very similiar cases recently, men with significant brain trauma which had rendered them in prolonged coma (approximately four months). One client has a mother who was at his bedside 12-15 hours per day. She talked to him, changed his diapers and generally cared for him. The other client has no family in the Toronto area.

Upon wakening, both clients were non-verbal and non-weight-bearing. They both had tracheostomy and were fed through a G-tube.

Today, the client whose mother was with him all day is living with her. He is weight-bearing, verbal and despite some swallowing issues, he is able to eat and is engaged in a full multidisciplinary rehabilitation program. He also volunteers and attends a gym, but will always require access to 24-hour care. The other client is in a semi vegetative state. He is non-verbal, does not voluntarily move, does not consistently respond to cues, continues to have a tracheostomy and is fed through a G-tube.

Did the presence of family make the difference in these two cases? The hospital staff of the client who had his mother at the hospital stated that they believe the client’s outcome was a direct reflection of his mother’s daily presence – caring for him, nurturing him, talking to him and being available throughout his hospital admissions and post discharge.

What will the outcome be for my other client? Who comes to visit him daily? Who talks to him, who cares for him? Where will he live should his cognitive status improve? How motivated will he be to recover or engage in rehabilitation without someone supporting him? I fear that this client may remain in hospital indefinitely.

Jodi Harendorf has been working as a case manager in the field of rehabilitation in the private auto sector for the past 29 years.  She is the owner and manager of Catastrophic Injury Management, Inc. and has developed partnerships with many service providers / lawyers / insurers also working in the private auto sector. Jodi is also a Canadian Certified Life Care Planner. 

 

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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.

BIST member Taylor Corstorphine: The power of positive thinking

By Melissa Myers

“I’m never discouraged.  I just keep going and keep moving.  I’m never down or sad”

Taylor Corstorphine: graphic design artist; brain injury survivor.

Taylor Corstorphine is in his last year of a three-year Graphic Design program at George Brown, and earned his way into the program by achieving a grade higher than 3.0 on a photography portfolio he created in his first year.  He created the portfolio in a course called Art Fundamentals.

He volunteered with the Brain Injury Society of Toronto (BIST) to create the poster for BIST’s 5km Run, Walk and Roll in September. Corstorphine says it is difficult to balance school and volunteer work, but he looks forward to more volunteer opportunities with BIST.

Taylor Corstorphine
Taylor Corstorphine. Photo by Melissa Myers

His interests at school and ambitions in graphic design include packaging and corporate design, which involves designing brand logos and product packages.  Working out, reading, golfing and watching movies are some of his hobbies.  Corstorphine loves to laugh and comedy is his favourite genre of movie.

In 2006, Corstorphine was hit by car while training for a Sporting Life 10 kilometre run with his high school gym class.  He was knocked unconscious from the impact and was then put on life support and put ino a drug-induced coma once an ambulance delivered him to St. Michael’s Hospital in Toronto.  He says that doctors at St. Michael’s said he had a one per cent chance to live.

After two and a half weeks in a coma, Corstorphine was finally pulled out of it and found himself in the intensive care unit of the hospital.  Two months later he was transferred to Holland Bloorview Kids Rehabilitation Hospital, where he stayed for six months.

Corstorphine had to re-learn how to walk, talk and eat properly.  At rehab, he partook in physiotherapy, speech language pathology and began attempting simple math, English and art practices.  He had to learn how to read and write again and, interestingly, he found himself more interested in art where he had preferred history and science beforehand.  In this way, Corstorphine said he had experienced a sort of revival and had become a new person.

He said he remembers his mom being there for him and spending a lot of time with him while he was in rehab.

“My mom dropped everything and went to the hospital,” said Corstorphine.  He said that his dad and sisters had a more difficult time accepting what had happened to him, but that his mom was and is really aware.

He said that a lot of friends came to visit him while he was in rehab, but that not all of them still visit with him.  It seems some people have moved on with their careers, but Corstorphine says a couple of friends stuck around and still accompany him to events around the city.

Although he has a great family supporting him and has been able to live a goal-oriented life, Corstorphine still copes with many challenges due his acquired brain injury.  For example, to stay successful at school he has to pace himself.

Corstorphine has made it through his program by taking four classes per semester instead of the usual six-course curriculum, making up the remaining classes in summer semesters.  Another way he paces himself at school is by strategizing his coffee intake and taking after-school naps.

“I drink coffee in the morning, and one in the afternoon,” he said.

At school, Corstorphine uses a smartpen to record classes and has help taking notes.  He utilizes several memory aid devices and also has a rehab support worker (RSW) who helps him to get off to a good start at the beginning of each semester.  He said that he has been writing a lot of things down lately to help him remember what is going on at school.

Corstorphine said that although his short-term memory has been affected, his long-term memory still remains intact.  He recalled his role on his soccer team before his accident.

“I was a ‘stopper’ (midfield/defensive player),” he said, mentioning that his head was his biggest asset as he used to stop the ball from entering his team’s defensive zone.  He said he still enjoys playing soccer with friends whenever he has the opportunity.

Corstorphine also mentioned he had taught younger students English as a Second Language, or ESL, to fulfill his mandatory high school volunteer hours before his accident.  He said he taught the students how to read and speak English at an elementary school downtown and that this volunteer position had been very rewarding for him.

Corstorphine seemed to have a very unique and positive outlook on life and didn’t want to focus on the way his daily life has been altered.  Instead, he pointed to his successes and the way he will use the skills he has learned.

“I’m always moving forward,” he said, “that’s my motto.”

Melissa Myers is a BIST Communications Commitee member and is working toward her Bachelor of Journalism at Ryerson University in Toronto.