Lost and Found: A survivor's guide for reconstructing life after brain injury

Lost and Found: A survivor's guide for reconstructing life after brain injury

Barbara Webster

Coping with life after brain injury is not easy. This practical and user friendly workbook and guide for survivors and their families is packed with everyday strategies, tips and accommodations to address the cognitive challenges of daily life.

Based on the author's experience as a survivor and as a facilitator of hundreds of support groups, she presents a philosophy and approach for overcoming challenges, envisioning goals, and continuing their healing process.

It is a collection of “brain injury survivor wisdom” that users will be able to apply each day, no matter where they are in their journey of recovery. The workbook comes with a CD to print all forms and worksheet tools.

Read an interview with Barbara Webster on surviving brain injury.

Item: LFSG
Price: $30.00
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Full Description

This is the one book that every survivor of a brain injury and the family should have. It is the most comprehensive, sensitive, insightful and thorough workbook available and is filled with hands on practical strategies aimed at helping the person with a brain injury navigate the complexities of daily life. By focusing on the cognitive changes that are so common after a traumatic brain injury, the author approaches each challenge with practical building blocks and strategies for continued rehabilitation at home and in the community. Her philosophy of problem solving and thinking about “how” to do something when a challenge is encountered is a continuous theme through all the chapters.

The workbook comes with a CD that has all the tools – forms, worksheets, checklists – so the user can print them and use them whenever and wherever needed.

Details
Item LFSG
ISBN# 978-1-931117-61-6
Pages 196 pages 8 ½ x 11 softcover plus CD with PDF files for forms and worksheets
Year 2011

Authors

Barbara Webster

When a car skidded into mine on a slippery road in 1991, I felt very lucky. Although my car was totaled, I had my seatbelt on and I didn't have a scratch on me. I had blacked out only momentarily and I looked OK! The emergency room sent me home with instructions to take Advil.

I thought I couldn't think because I was exhausted and I was in so much pain. I had a severe case of TMJ or “whiplash”. I could barely eat or talk. As I slowly healed and was able to do more physically, I began to realize that I couldn't do anything mentally that I used to do so effortlessly. I was a wife and mother; I managed the household. I had worked in professionally in teaching, banking and health care. I was an achiever: multitasking, problem solving and organizing were second nature to me. Now I couldn't remember what I was doing. I couldn't figure out what to wear. I couldn't find my words. I couldn't remember what I was trying to say and if I got interrupted, it was like a train getting derailed, I couldn't get back on track. I couldn't follow the storyline while reading to my son or watching TV. Noise and confusion quickly overloaded and overwhelmed me; like a computer getting too many demands too quickly. But I looked OK!

I had been a home economics and early childhood teacher. Now I couldn't cook supper and I couldn't tolerate the noise and confusion of children. I was a banker and a bank officer and I couldn't hold 2 plus 2 in my head long enough to get 4! I had lived in Framingham for 20 years and I couldn't find my way around. But I looked OK!

My brain used to feel like a fancy multi-function copy machine, copying, sorting and collating all at once. Now, the harder I tried to do what I used to do, the more “meltdowns” and “shutdowns” I had. I thought I was losing my mind and I didn't dare tell anyone. I wasn't feeling so lucky anymore. But I looked OK!

Reality began to set in when I accompanied my son to an evaluation for school. I sat beside him, going through the tests in my head as he answered the questions out loud and I realized that he was doing better on the tests than I was! He was diagnosed with processing and memory problems. He was in second grade. But I was a college graduate!

Cautiously I mentioned this experience to my rheumatologist who had been my doctor for a long time. She said I needed a neuropsychological exam and fought my insurance co. for me. Finally, after nine months, I had the testing. I was diagnosed with a “mild” brain injury but I was told I was doing fine - I was figuring out my strategies! Imagine my dismay! During the testing I had related how I had figured out how to do grocery shopping again, a process that now took me 3 days.

I didn't feel like I was doing fine, quite the opposite. I was fighting depression. I had started seeing a counselor and when I asked her if she knew of any help for this diagnosis I had, her response was, “If there is any help, I would think the neuropsychologist who did your testing would have been obligated to tell you about it.” I still remember driving home from that appointment, many years ago. I almost lost hope. I thought I was going to go crazy and die. I contemplated suicide.

Fortunately, not too long after that, my son's school featured a speaker from the Brain Injury Association of Massachusetts at a parents' meeting. I had to investigate, even though I rarely had the energy to go out at night. As I sat in the back of the room and listened to this brave survivor speak, tears rolled down my face; finally I was not alone! I approached her after the meeting and she offered to take me to a support group. I was stunned, there is a Brain Injury Association in Massachusetts and there are support groups?! At the support group meeting, as I listened to other survivors tell their stories, I realized that some of these people were getting help, that rehab wasn't just for people with substance abuse problems and that I didn't have to go crazy and die, literally. Quick, please sign me up! They did sign me up and the therapists helped me begin the long process of putting my life back together.

Meanwhile, I took my husband to a support group meeting and he began to understand that I wasn't getting upset because I was mad at him; I was upset with myself and I had a problem, a BIG problem. During one of those first support group meetings I expressed my frustration about keeping track of what I was doing, even taking a shower! Someone in the group shared the strategy he used to help him remember what he was doing in the shower and it felt like a light came on in my brain! There was a way out of this terrible place I was in; there was HOPE!

Today, my brain can work like that fancy copy machine again - if conditions are optimum. I can do quality work again if I plan it, allowing extra time for fatigue and “bad brain days”. I have rebuilt skills and regained stamina. I am able to hear my intuition. Today, I can depend on myself again - if I plan and pace myself. Sometimes, when I am tired or stressed, I have to work like an old-fashioned copier; one page, one step at a time - but I can get the job done!

Today I am a lucky lady. I have had the privilege of facilitating the Brain Injury Survivor Support Group in Framingham since 1995 and I work part time for the Brain Injury Association of Massachusetts assisting other support groups. I get to do something I am passionate about and I get to work with good people. Brain injury survivors and the people who work with them are typically quality people, people who aren't focused on superficial things. Best of all, I get to witness survivors take steps in their healing process and move forward, knowing that my work has helped to play a part in their progress. What an honor! Today I am a lucky lady!

 

Contents

About the Author

Introduction

1. The Other Dimension of Brain Injury Healing

Strategies for Rebuilding Self Confidence

Suggestions for Promoting Emotional Healing

Grieving Process

 

2. Preventing Shutdown and Meltdowns

Strategies for Managing Fatigue and Overload

Practical Suggestions

Pacing and Balancing

Managing Stress

Managing Overload and Preventing Meltdowns

Tool: Parenting Tips for School Vacations

 

3. Caps, Sunglasses, Ear Plugs

Strategies for Coping with Sensory Hypersensitivities

General Coping Suggestions

Specific Coping Strategies

Visual Processing Problems

Tool: Brain Recharging Breaks

 

4. More than Writing it Down

Strategies for Improving Memory

Suggestions for Improving Memory Registration

Suggestions for Improving Memory Recall

Tool: Medical History Form

Tool: Frequently Dialed Phone Numbers

Tool: Telephone Log

Tool: Getting Out the Door Checklist

Tool: Memory Jogger List for “To Do's

Tool: Memory Tips and Strategies

 

5. A Prosthesis for Your Memory.

Strategies for Setting Up Organizers

Suggestions for Setting up Organizers

Suggestions for Using a Planning Tool Effectively

Cell Phones and Electronic Organizers

 

6. Creating Shortcuts for Your Memory

Strategies for Getting Organized and Staying That Way!

Three Basic Tips for Successful Organizing

General Organizing Strategies

Strategies for Organizing paperwork

Traveling

 

7. Turning A “Bad Brain Day” Into A “Good Brain Day

Strategies for Improving Cognition

General Suggestions

Pacing and Breaks

Keep Challenging Yourself

Think Progress

Tool: How Are You SMART?

Tool: “The Power of Music

 

8. Start Small, Think Building Blocks

Strategies for Reading and Writing, Tips for Using the Computer

Basic Reading Strategies

Basic Writing Strategies

Tips for Using the Computer

Safety Concerns

Strategies to Consider

 

9. Creating A Memory Friendly System

Strategies for Paying the Bills and Processing the Mail

General Suggestions

Weekly System

Daily System

Tool: Master Bill List

 

10. Simplify, Get Organized, Start Early

Strategies for Meal Planning, Shopping and Cooking

Meal Planning: Simplify as Much as Possible

Conquering Grocery Shopping!

Cooking: Start Early, Take It One Step at a Time

Helpful Tips

Tool: Meal Ideas

Tool: Master Grocery List

Tool: Sample Grocery Store Map

Tool: Grocery Store Map

 

11. Saving Your Energy

Strategies for Shopping, Errands and Gift Giving

Helpful Suggestions

Gift Giving – Keeping It Simple

Tool: Memory Jogger List and Plan for Errands

 

12. Creating Space

Strategies for Conquering Clutter

Tip # 1 Prevent as Much Clutter as You Can

Tip # 2 Try to Handle Things Only Once

Tip # 3 Create Zones

Tip # 4 Help Getting Started

Tip # 5 Deciding What to Keep and What to Let Go of. Ask Yourself

Tip # 6 Maintenance

Tool: Blueprint for Conquering Clutter

Tool: Recommended Documents to Keep

 

13. Starting Over

Strategies for Social Situations

Safety First: Staying Out of Trouble

General Suggestions for Social Situations

Helpful Strategies: Set Yourself Up to Succeed!

Practice Good Listening Skills

Phone Skills: Prepare for the Conversation

Tool: Conversation Evaluator, Speaker

Tool: Conversation Evaluator, Listener

Tool: Creative Problem Solving Example

Tool: Creative Problem Solving Worksheet

“Listen”

“The Four Agreements”

 

14. A Complex And Dangerous Task

Strategies for Driving and Directions

Safe Driving Tips

Tool: Safe Driver Checklist

Tool: Winter Driving Tips

 

15. Yes, You Can!

Suggestions for Rebuilding Skills and a Life after Brain Injury!

Managing your Stress

Exercise

Getting Involved in the Arts

Working with Music

Doing a PhotoVoice Project

Playing “Brain Games”

Other Possibilities

Volunteer

The Rehabilitation Process

Tool: Assets and Strengths

Tool: Star Qualities

Tool: Making Changes

“The Tao of Success”

 

16. PhotoVoice Project Guide

Introduction to PhotoVoice

Doing Your Own PhotoVoice Project

A PhotoVoice Path

Getting Started

PhotoVoice Tips

Photo-Taking Questions

Photo-Taking Tips

PhotoVoice Ethics: Safety and Respect

Photo Discussion Questions

Building on Your Project

Exhibit Options

Photo Consent Form 1

Photo Consent Form 2

 

17. Tool Chest

Inventory of Tool Templates

CD of Tool Templates (inside back cover)

What Brain Injury Survivors Want You to Know

Excerpts

Sample excerpt. Preview only – please do not copy

More Than Writing It Down

Strategies for Improving Memory

“I felt a cleavage in my mind as if my brain had split;

I tried to match it, seam by seam, but could not make them fit.

The thought behind I strove to join unto the thought before,

But sequence raveled out of reach like balls upon a floor.”

— Emily Dickinson

It is helpful to keep in mind that there are two basic categories of memory processing:

1. Recall

This involves retrieving information from the brain.

The information is already stored in memory.

2. Registration

This involves getting information into the brain. It is also referred to as imprinting, encoding, storing and learning. This is a common problem for survivors of brain injury. While it may seem that you can't recall or remember well, much of the problem may actually be due to difficulties storing or registering information in your brain.

So, Recall of new information is dependent on Registration.

— If the information doesn't get registered in the brain, it can't be recalled!

Suggestions for Improving Memory Registration

Establish routines for daily tasks.

For example, your routine for getting up each and every morning might be:

Wake up

Take a.m. pills

Shower

Brush teeth, shave

Get dressed

Comb hair

Make bed

Prepare and eat breakfast

Check planner/calendar

Repeating the steps in the same order or sequence every morning will help the steps become more and more automatic and easier to remember. It may be helpful to make a list of your steps and post it in your bedroom.

Make notes on the spot.

Use a pocket recorder or the message feature on your cell phone/electronic organizer when it is not convenient to write things down. For example, make a note where you parked your car or to remember to pick something up at the grocery store on your way home.

Keep track of medications.

Use pillboxes that can be set up for the day or the week, whatever works best for you.

Medication reminders

Use an alarm on your watch/cell phone/electronic organizer to help you remember when to take your medications.

Appointment reminders

Use an alarm on your watch/cell phone/electronic organizer for appointment reminders. Consider travel time and set the alarm for the time you need to leave in order to arrive at the appointment on time.

Link a new activity with an established routine.

For example, take morning medications when you brush your teeth. Check your planner when you have your morning coffee.

Talk to yourself (quietly) as you do things.

— This practice can help your language skills as well as your memory recall.

Write it down!

Write down what is important in your life. (Try not to fall into the trap of writing everything down; it can be counter-productive.) Just the act of writing something down enhances your ability to remember it. Having things in writing reduces the amount of retrieval your brain needs to do. It also creates a memory tool. Examples:

Write up your medical history.

Keep it in your planner or appointment folder, whatever you always take with you to medical appointments. This is especially helpful when you see a new health care provider. You will need to update it periodically.

(Sample at end of chapter.)

Post a list of frequently dialed phone numbers.

Organize it by category and have it near your phone at home to use when you are there. If you program numbers into your phone and never dial them, you will not re-learn them and you will have a big problem if your phone is lost. (Template at end of chapter.)

Keep a small notebook and pencil beside the phone for messages.

Loose paper can easily get misplaced.

Use a telephone log.

This helps track ongoing issues and correspondence like insurance and billing problems. (Sample at end of chapter.)

Make a cueing and reminder system for yourself.

To remember information about family and friends, you can keep notes and questions for future calls in your address book.

Create lists.

Lists are invaluable memory tools. When you review them at the end of the day, it may surprise you how much you actually did get done!

Examples of lists:

Checklists for routines; your morning routine, leaving the kitchen, before you go to bed, paying bills, etc. (Sample “Getting Out the Door Checklist” at end of chapter.)

Memory Jogger Lists, lists of issues to consider for “To Do” Lists.

(Sample at end of chapter.)

“To Do” Lists, for the day, paperwork to be done, for errands, groceries, shopping, etc.

— Please refer to the Chapter 7 on Organization for more details about lists.

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