Recovery Process
Prevention
Critical Care
Primary Rehabilitation
Home Again
Back to Work
Socializing
Ongoing Rehab

Grief Management

How YOU Can Help

Recovery Journals
Our Story
Our Services
Donations
Recovery Journal Examples
David Smethurst
John Hessler

What is an Online Recovery Journal?
The Brain Trauma Recovery Journals will include both information about brain trauma and rehabilitation, and a tool to allow families to write updates about a patient's condition from the time of the accident through long-term rehabilitation.

Information Resources
One of the biggest challenges faced by families of brain trauma patients is finding information. The brain is the most complex and least understood organ in the body, and the effects of a brain injury are complex and highly unpredictable. Beyond understanding the injury itself, families must then explore options for both short-term and long-term rehabilitation, search for social services and financial support, all while dealing with a loved one whose personality might well have been fundamentally altered.

Our site will include access to a wide range of informational resources. We will post links to this information on every page of the journals in a sidebar, allowing all readers to explore this information as questions arise from the journals. This will support one of our secondary goals to increase awareness and education about brain trauma.

The information for this site must be researched and collected from a wide range of sources. Donations will go in part to supporting this research. Content areas include the following: (note that this list is subject to change)

1. Critical Care Information
   a. What is a Brain Injury? (Overview)
   b. Medical Jargon - Definitions and Explanations
   c. Who's Who in the ICU (Overview)
   d. What to Expect (Overview)
   e. How You Can Help the Patient
   f. What Social Services Can Offer (Overview and Local Info)
   g. A Roadmap to Recovery (Overview)
   h. Online Journals from Other TBI Patients
   i. Grief Management and Resources (Overview and Local Info)
   
2. The Step-Down Ward
   a. What to Expect (Overview & Testimonials)
   b. Getting What You Need (Overview & Testimonials)
   c. What Social Services Can Offer (Overview and Local Info)
   d. Online Journals from Other TBI Patients
   
3. Intensive (Primary?) Rehabilitation
   a. What to Expect in Rehab (Overview)
   
   1. What is being rehabilitated?
      
   2. Speech Therapy
      
   3. Physical Therapy
      
   4. Occupational Therapy
      
   5. Alternative Therapies

   b. List of Rehabilitation Centers and Descriptions (Local Info)
   c. How You Can Help the Patient
   d. What Social Services Can Offer
   e. Online Journals from Other TBI Patients

4. Later-Stage Rehabilitation
   a. What Rehabilitation Is Available in Your Area
   b. What Kind of Ongoing Rehabilitation Is Appropriate
   c. Living with Differences - The New You
   d. What Funding Sources Are Available in Your Area?
   e. How You Can Help the Patient
   f. Online Journals from Other TBI Patients
   

5. Life After Brain Trauma
   a. What Happens Now?
   b. What Resources Are Available in Your Area (Local Info)
   c. How You Can Help the Patient
   d. Ideas and Essays from Survivors
   e. Online Journals from Other TBI Patients
   

6. Online Recovery Journals
   a. Searchable Database of Patients' Stories

The Recovery Journal Tool
The family and friends who gather in the ICU find themselves playing a difficult dual role. First, they are the primary caregivers to the patient. The medical professionals can take care of the body well enough, but it is the responsibility of family and friends to nurture the spirit of the brain trauma patient.

Unfortunately, these people also have to play the role of communicator to loved ones far away. The people in the ICU take in all of the information they can from the medical team and from their own obervations of the patient. Loved ones who cannot make it to the ICU are desperate to hear this information, and they need to hear it from family members that they trust. ("Ok, so that's what the doctor said. But how do you think he looks?") Family members in the ICU therefore often find themselves spending much of the day on the phone, repeating good news or bad news over and over. This, naturally, tends to amplify both the emotional highs and the emotional lows that the family feels. This roller coaster often becomes too much, and families will withdraw from the phones, leaving loved ones far away feeling abandoned and scared. They stop calling, which in turn leaves the people in the ICU feeling alone and abandoned by the people far away.

The Online Recovery Journal can resolve the challenge of this dual role. The family members in the ICU can send out information (including their own perspectives) to loved ones far away. Those people far away therefore feel included in the crisis, and they are free to send informed and relevant messages of support to the family members in the ICU. Their thirst for information satisfied, they can focus their efforts on nurturing those primary caregivers. This dynamic can transform the ICU experience for everyone involved.

The Online Recovery Journal will allow a family member or friend of a patient to create a webpage dedicated to that patient. That family member will be given a username and password, which they will use to log onto the site. Once they have logged on, this family member will become the "administrator" for this patient's site -- only the person with this username and password will be allowed to post updates about the patient's condition. We will provide this administrator with recommendations for how to make their journal the most valuable -- e.g. make updates on a regular basis.

Readers will be able to log onto our site and search for their loved one's Recovery Journal. They will be able to read the entire journal, including the most recent updates. Readers will be able to post messages to a message board (where all other readers may see them), and send private messages to only the administrator.

Both readers and administrators will have access to the informational resources described above.