Call for action - patient advocacy issue

Lifelines: The Brain Injury Support Group

Hello.

Kimberly here, facilitator of Lifelines. I am writing today to ask for your support with a patient advocacy issue.

During our September meeting, we discussed the brochures distributed by the Brain Aneurysm Foundation (BAF), a national organization based in Boston. The attendees of that meeting approved the letter pasted at the end of this introduction. Please review the letter, as well as one of the brochures mentioned (http://www.bafound.org/info/pubs/BAF_Brain_Aneurysm_Basics.pdf).

If you are in agreement with the letter, I would appreciate a reply email (aikmank@gmail.com) that relays your support and desire for change. I will collect all the responses, send them to the BAF and ask that change be made. This is equivalent to collecting a petition with signatures.

Please feel free to distribute this request to other interested parties. The goal is to collect hundreds of "signatures."

Let's make the world a better place for brain injury survivors!

___________________________

We are the members of Lifelines: The Brain Injury Support Group in Dallas, Texas. Because of the number of brain aneurysm survivors in our group, we also function as the Dallas support group for the Brain Aneurysm Foundation (BAF). We write to you today in order to express our concern about the recent marketing material distributed by the BAF with the hope that the rhetoric may be improved.

As brain injury survivors and caregivers, we are aware there are many types of brain injury, which include brain aneurysm rupture, brain surgery, stroke, motor vehicle accidents, bicycle accidents, falls, gunshot wounds, congenital conditions, etc. Surviving these incidents, which in the majority of cases means triumphing over death, and struggling to restore our quality of life in the aftermath, gives us leave to make the following points:

1. We object to the use of fear of death as a motivator to encourage treatment for unruptured aneurysms.

2. We feel that the interview with Amanda Horan Kennedy is misleading as to reality faced by a brain injury survivor and does not accurately reflect the probable result of brain injury that follows brain surgery.

3. We request that the marketing material also include mention of brain injury and resources available to survivors.

4. We request that the materials also provide guidance as to how people can talk to their doctors and insurance companies in order to obtain an accurate diagnosis; many unruptured aneurysms are left undiagnosed and untreated due to a lack of education in the medical community. In addition, there is a lack of awareness regarding the symptoms of ruptured brain aneurysms that should also be addressed.

We suggest the following changes:

a. Instead of "Save your life" - "Improve the quality of your life"
b. Instead of "40% of all people will die" - "Only 60% will live"
c. Clarify that ruptured brain aneurysms account for 3-5% of all new *hemorrhagic* strokes

We welcome the opportunity to discuss this matter with you. Our facilitator, Kimberly Aikman, may be reached via email at aikmank@gmail.com or by calling 214-289-0286.

Thank you for your consideration.

Sincerely,

Lifelines: The Brain Injury Support Group

Neither Lifelines nor Presbyterian Hospital of Dallas endorse or recommend any method, treatment, or a program for persons with a brain injury. The intent of the group is to provide support and make information available. Attendance in the group is not a substitute for an informed discussion between a patient and his/her health care provider. No endorsement is intended nor implied.

General Overview

Lifelines: The Brain Injury Support Group
meeting at Presbyterian Hospital of Dallas

2nd Mondays of the month, 6:30 - 8 PM

Fogelson Building, Classroom A

Now in our eighth year, Lifelines functions primarily as an educational forum. We also hold group discussions every few months.

Mission Statement Lifelines: The Brain Injury Support Group strives to address the various issues that arise during the rehabilitation/recovery period through support, information and education. The group provides an open forum where survivors, caregivers and healthcare professionals may meet and share their experiences. The group also serves to educate its members about brain injury and how to improve brain health. This exchange allows the group to address quality of life issues.

Philosophy Every individual, whether brain injured or not, has suffered some type of affliction. The emphasis for healing and recovery is not to focus on what has happened but instead to focus on what a person can accomplish in the aftermath of tragedy. What is most important is how a person responds to life's challenges. We are survivors. We are not victims.


Purpose "For human beings adaptation to change cannot take place through instincts. It has to take place through something called awareness, motivation, free will and the ability to anticipate the future." Self-Healing: A Personal History, René DuBos from The Healing Brain, A Scientific Reader, Edited by Ornstein/Swencionis

Goals • To assist patients during the rehabilitation/recovery phase of brain injury by providing education about the brain, brain health and the possibility of recovering brain function. • To identify the “silent epidemic” of brain injury and offer a forum for patients and their caregivers to feel supported and find direction during this period of adjustment. • To allow for exchange of thoughts, ideas and experiences.

Calendar - 2009 meeting dates

January 12 - Matt Kramer, Voice mapping
February 9 - Dr. Ray Mailloux, caregiver, sharing his experience
March 9 - Let's talk about you - the caregiver
April 13 - Discussion group - Brain injury and personal relationships
May 11 - Mind-Body Skills
June 8 - How to turn down the noise in your life
July 13 - Brain Food
August 10 - Jim Goodman, Karl Heller and Horace Irwin - Survivors speak
September 14 - Brain Aneurysm Awareness Month - An exercise in patient advocacy
October 12 - Discussion group - Turning Weaknesses into Strengths
November 9 - Sherry Aikman, artist - Arts and Crafts, Holiday ornament making
December 14 - Holiday Social at Cafe Express, Mockingbird Station



For the purposes of our group, the most important thing to realize is that the mechanism by which the brain was injured (automobile accident, fall, stroke, ruptured brain aneurysm/brain surgery, congenital) is most significant during the acute phase of care - hospitalization - and post acute - first stages of rehabilitation. When it comes time to address the physical and cognitive deficits in the recovery/rehabilitation/remediation phase, there are enough similarities between the brain insults that allow survivors to meet under an umbrella group.

Our group members have experienced traumatic brain injury, mild traumatic brain injury, acquired brain injury such as ruptured brain aneurysm/brain surgery and stroke and congenital brain injury. Caregivers, other family members (adults only), friends, and health care professionals also attend the meetings.

The challenges faced by survivors depend on what type of brain injury has occurred, so we have a range in physical and cognitive abilities. We usually have an average of 15 people attending presentations.

Past speakers include Dr. Harold Crasilneck presenting the effects of hypnotherapy, Drs. Gray Atkins, Jonathan Walker, Marvin Sams and Sara Hunt Harper discussing neurofeedback (EEG Biofeedback techniques), Tracy Sellers introducing Brain Gym, Betty Erickson (daughter of Milton Erickson) giving a "reality check" with emotionally healthy ways to approach life, Dr. Fran Assaf presenting CranioSacral Therapy, Dr. Steve Lomber detailing how the brain overcomes injury, Roger Stainbrook and Elijah Hawken discussing the benefits of acupuncture, Dr. John-Claude Krusz discussing neuropharmocology, and Dr. Richard Fulbright presenting two lectures - one about neuropsychological testing and the other about psychosocial outcomes following traumatic brain injury.

Note: Additional information is listed under the 2007 posts. For Fun Things to Do, click on June 2007; for Free Things to Do, click on May 2007; for Resource Information, click on May 2007; for information on different therapies/remediating brain injury, click on August 2007.

For more information and/questions about the group, please contact Kimberly at aikmank@gmail.com. Please note that meetings are for adults only - we do not have the facilities to accommodate children.

Directions to Presbyterian Hospital:
Presbyterian Hospital of Dallas is located on Walnut Hill Lane, just east of U.S. 75 (Central Expressway). The meetings are in the

Fogelson Building, Ground Floor, Classroom A
Presbyterian Hospital of Dallas
8200 Walnut Hill Lane
Dallas, TX 75231

Map:http://www.google.com/maps?f=d&saddr=&daddr=8200+Walnut+Hill+LN+Dallas,+TX+75231&iwstate1=dir:to&oi=manybox&ct=16&cd=1&resnum=1

When turning into the campus from eastbound Walnut Hill, the best route to take may be the driveway prior to the light for the main entrance. The driveway curves away from the main entrance (direction towards North Central Expressway) and the entry to the parking lot is on the left (gated entry). The Fogelson Building has a small dome on top and is next to the Margot Perot Center.

Using the underground parking is the easiest way to reach the meeting location; if entering from the main floor, cross the foyer (past the stairs) and take the elevators to the ground floor. Classroom A is to the left off the elevators.

Remember that parking is now free! Be sure to get your validation sticker at the start of the meeting.

Neither Lifelines nor Presbyterian Hospital of Dallas endorse or recommend any method, treatment, or a program for persons with a brain injury. The intent of the group is to provide support and make information available. Attendance in the group is not a substitute for an informed discussion between a patient and his/her health care provider. No endorsement is intended nor implied.

Next meeting: September 14, 2009

Lifelines: The Brain Injury Support Group
meeting at Presbyterian Hospital of Dallas


The September meeting is scheduled for Monday the 14th, from 6:30 – 8:00 PM (directions below).

Brain Aneurysm Awareness Month - an exercise in patient advocacy.

Tonight we will hear from brain aneurysm survivors AND also talk about patient advocacy. Since this is a vast subject, we will focus on the following:

There are a number of national organizations that represent individual conditions of brain dysfunction, e.g. National Stroke Association, Brain Aneurysm Foundation, Brain Injury Association. It could be argued that instead of focusing on the individual condition, many brain injury survivors would be better served by using a "global" approach. For example, many brain aneurysm and other stroke survivors are not told they have a brain injury, and this can contribute to recovery frustrations.

A common theme that many health care organizations adopt, probably without being fully cognizant of the practise, is the use of fear of death as a motivator. For those of us who have actually faced death, been returned to life and spent some time in therapy to rid ourselves of the post traumatic stress associated with having survived such an experience, this negative motivator no longer has a place in our lives. We have found joy in living.

But how do we as patients teach those who are supposedly advocating on our behalf? During tonight's meeting, we will take a look at two brochures published by the Brain Aneurysm Foundation - and brainstorm about how to turn the negative aspects (fear of death as a motivator) into positive (joy of life). Our goal is to create an alternative marketing plan to send to the Foundation. Please take some time to review the brochures and write down your initial reaction to the handouts.

Please send a reply email to Kimberly Aikman (aikmank@gmail.com) or call 214 289 0286 so we know to expect you.

Directions to Presbyterian Hospital:
Presbyterian Hospital of Dallas is located on Walnut Hill Lane, just east of U.S. 75 (Central Expressway). The meetings are in the

Fogelson Building, Ground Floor, Classroom A
Presbyterian Hospital of Dallas
8200 Walnut Hill Lane
Dallas, TX 75231

Map:http://www.google.com/maps?f=d&saddr=&daddr=8200+Walnut+Hill+LN+Dallas,+TX+75231&iwstate1=dir:to&oi=manybox&ct=16&cd=1&resnum=1

When turning into the campus from eastbound Walnut Hill, the best route to take may be the driveway prior to the light for the main entrance. The driveway curves away from the main entrance (direction towards North Central Expressway) and the entry to the parking lot is on the left (gated entry). The Fogelson Building has a small dome on top and is next to the Margot Perot Center.

Using the underground parking is the easiest way to reach the meeting location; if entering from the main floor, cross the foyer (past the stairs) and take the elevators to the ground floor. Classroom A is to the left off the elevators.

Remember that parking is now free! Be sure to get your validation sticker at the start of the meeting.

Neither Lifelines nor Presbyterian Hospital of Dallas endorse or recommend any method, treatment, or a program for persons with a brain injury. The intent of the group is to provide support and make information available. Attendance in the group is not a substitute for an informed discussion between a patient and his/her health care provider. No endorsement is intended nor implied.