Information from National Family Caregivers Association

A message from the
National Family Caregivers Association

Encouraging Family Caregivers to Speak Up

January 2009 E-LETTER
TO NFCA ONLINE MEMBERS AND FRIENDS

This month find information on:

Make This the Year You Speak Up!

Value of Family Caregiving Hits $375 Billion

AARP Foundation Helps Families "Prepare to Care"

Teva Neuroscience Launches Spanish Parkinson's Disease Patient and

Caregiver Web Site

Volunteers Needed for Upcoming Clinical Trials and Research Programs

Now Available Online: NFCA's Communicating Effectively With Healthcare Professionals TeleClass

CCAN Volunteers Initiate Family Caregiver Postage Stamp Campaign


Make This the Year You Speak Up!

With the inauguration of a new president who has expressed his commitment to substantive healthcare reform, family caregivers have an opportunity like none before: to make our voice heard as the healthcare reform debate takes shape. The Obama-Biden administration is looking for ideas and feedback as it begins the long process of reshaping America's healthcare system. Let's not miss out on this once-in-a-lifetime opportunity. Go to http://m1e.net/c?93235626-ULg2IvKMnkPuU%403904006-DqSLCXgzLSLNo to find out how you can be a part of the discussion.

Value of Family Caregiving Hits $375 Billion

The economic value of family caregiving in the U.S. reached $375 billion in 2007, according to a new report by AARP's Public Policy Institute. The report finds that in 2007, the value of family caregiving was 7 percent higher than the estimated value of $350 billion in 2006. "Valuing the Invaluable, The Economic Value of Family Caregiving, 2008 Update" also estimates that 34 million Americans provide more than 20 hours of care per week to another adult, making family caregiving a cornerstone of U.S. health and long-term care.

The AARP report notes that family caregivers of those 50 and older spent an average of $5,531 out-of-pocket in 2007 to care for their loved ones. That spending was often coupled with lost workdays, wages, health insurance and retirement savings. The AARP report makes several recommendations to assist family caregivers, including adopting "family-friendly" workplace policies; assessing caregivers' needs and providing them with needed supports; expanding funding for the National Family Caregiver Support Program and the Lifespan Respite Care Act; and supporting family caregivers in chronic care coordination programs and care transitions.

The full report is available at:
http://m1e.net/c?93235626-/8Kp6NkmZZX7E%403904007-XoBncaPQPy8bg

AARP Foundation Helps Families "Prepare to Care"

The AARP Foundation has a publication called "Prepare to Care: A Planning Guide for Families" that provides helpful advice on everything from creating a caregiving plan to finding and obtaining basic resources. Whether you have just begun caregiving or you have been a family caregiver for years, you will find the publication's many checklists straightforward and useful. To download your copy of "Prepare to Care," go to www.aarp.org/foundation/preparetocare.

Teva Neuroscience Launches Spanish Parkinson's Disease Patient and Caregiver Web Site

Teva Neuroscience, Inc. has launched a Spanish version of their patient and caregiver resource Web site to provide important information and resources to members of the Hispanic community, living in the U.S., who are affected by Parkinson's disease (PD), an age-related degenerative disorder of the brain.

The Spanish Web site is a comprehensive resource that provides important information to help patients and families with the physical and emotional effects of PD. Spanish-speaking visitors will be able to access a wide range of information and resources, including: basic disease information and treatment options; signs and symptoms of the disease; tips on living well through a combination of treatment, activities, and support; downloadable worksheets and links to various other resources; and caregiver information. Visitors will also have access to a downloadable version of the recently released "Hacia adelante" resource guide. The easy-to-use guide is a useful tool that helps people affected by PD understand more about the disease, learn how to live well despite the diagnosis, and research various treatment options. Go to: www.azilect.com/espanol.

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Upcoming Clinical Trials and Research Programs

The following information is provided as a public service. NFCA has no connection to the clinical trials and research programs publicized below and no endorsement is implied.

Worldwide Parkinson's Disease Trial Seeks Participants

Worldwide, a team of researchers is evaluating an investigational medicine for the changes in thought, behavior, and judgment that can occur with Parkinson's disease. About 280 people will participate in this study at ap­proximately 65 research centers around the world. Participants will be asked to make seven visits to the study center. It is possible that at the end of the initial treatment peri­od, participants may have the opportunity to receive extended treatment with the active investigational drug. The clinical study is now enrolling qualified participants. To learn more, please visit www.ParkinsonsBodyMind.com or call 866/565-0262 today.

Global Multiple Sclerosis Trial: Volunteers Needed

While great progress has been made toward developing treatments for people living with MS, a need still exists for more effective treatments that may slow the progression of the disease. Researchers currently are seeking adults who are living with relapsing-remitting multiple sclerosis (RRMS) to participate in two global clinical research studies: CARE-MSSM I for adults 18-50 who have not yet begun therapy for MS other than corticosteroid treatment, and CARE-MSSM II for adults 18-55 who have experienced relapses (flare-ups) on an approved therapy to treat MS. The CARE-MS studies are designed to determine the safety and effectiveness of alemtuzumab, the investigational drug, as compared to Rebif® (interferon beta-1a), a current FDA-approved treatment. All study-required medications and procedures are provided at no cost. To learn more, call 866/790-MS-CARE (U.S. only) or visit www.CARE-MS.com.

Caregivers Wanted for Online Support Program for Stroke Families

Kent State University is conducting an NIH-funded research program designed to help female caregivers and male stroke survivors who face difficult challenges following a stroke. In this program, family caregivers will get online access to critical support, information, and education that will help to facilitate the stroke survivor's physical and emotional recovery and reduce the family caregiver's feelings of strain or burden. The program is especially targeted to caregivers and stroke survivors who feel depressed or anxious. All couples who participate will receive cash incentives up to $140. Couples must have their own computer and Internet service provider if they reside outside of Ohio. For more information, call 866/300-6657.
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NFCA's Communicating Effectively TeleClass Available on the Web

Thanks to everyone who helped make NFCA's two-part TeleClass a huge success. If you were unable to participate during the live presentations, it's not too late to learn from them now. Both presentations have been archived and are available on NFCA's Web site.

The classes were designed to educate family caregivers on how to communicate more effectively with healthcare professionals. Learn how to: understand your role on your loved one's healthcare team; prepare for doctor office visits; develop strategies to establish rapport/collaborate with your loved one's healthcare providers; compose assertive messages for communicating in healthcare situations; and be prepared for and cope with an emergency room visit.

Don't miss out on this wonderful educational opportunity. Go to www.thefamilycaregiver.org and click on "Listen to Our Communicating Effectively Teleclass Programs."

NFCA is very grateful to Medtronic Foundation, Forest Laboratories, Inc., and Novartis Pharmaceuticals Corporation for their support of this educational program. Additional support was provided by Intel's Digital Health Group, AGIS, Eisai Inc., Evercare, and MetLife Foundation.

CCAN Volunteers Initiate Family Caregiver Postage Stamp Campaign

NFCA's CCAN state volunteers want to see the United States honor our approximately 52 million family caregivers with a U.S. Family Caregiver Postage Stamp. To that end, Virginia CCAN Representative Terry Vasquez, who is spearheading the initiative, and other CCAN volunteers are collecting thousands of signatures to send directly to the Citizen Stamp Advisory Committee of the U.S. Postal Service. And they need your help.


Visit NFCA's Web site at www.thefamilycaregiver.org and click on the U.S. Postage Stamp button on our home page to submit a letter to the Citizen Stamp Advisory Committee. On behalf of all family caregivers, we thank you in advance for your support of this effort.

Happy New Year!

We wish you and your family a healthy and peaceful 2009. Make this the year you Speak Up for your loved one AND yourself.

PLEASE FORWARD THIS E-LETTER ALONG TO YOUR FAMILIES AND FRIENDS and ENCOURAGE ALL THE FAMILY CAREGIVERS YOU KNOW TO JOIN THE NFCA COMMUNITY OF CAREGIVERS. THERE IS NO COST! Just click here: www.thefamilycaregiver.org

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Information on Memory and Trauma

Matt Kramer, our speaker in January, sent the following information on memory.


http://www.integrative-healthcare.org/mt/archives/2007/04/understanding_a.html


Institute for Integrative Healthcare Studies

April 27, 2007
www.homestudycredits.com
Learn How to Unlock Tissue Memory

The unexpressed trauma of past experiences stored in the musculature and connective tissue of our bodies creates tension, blocks circulation and can ultimately lead to pain and disease. Learn what you can do as a massage therapist to unlock and free clients of these tissue memories.

by Nicole Cutler, L.Ac.

Many scholars believe that pain and trauma are incidents prevented from being completed. These can be single damaging events such as a car accident, continuous bombardments requiring emotional defenses, or over-training of isolated muscles that lock the body into a recognized pattern. Traumas can be considered anything that keep us locked in a physical, emotional, behavioral or mental habit. Recovery from trauma is the process of the body finding balance and freeing itself from constraints. All too often, the recovery process is halted, preventing the traumatic occurrence from completing.

There are many reasons traumatic incidents cannot be completed, creating stagnation and causing a cascade of physiological protective mechanisms to separate the trauma from affecting everyday functioning. Because our bodies and emotions can only safely handle a limited amount of stress, trauma results whenever an experience exceeds our abilities to handle and cope with its consequences. The energy of the trauma is stored in our bodies’ tissues (primarily muscles and fascia) until it can be released. This stored trauma typically leads to pain and progressively erodes a body’s health.

Feelings
Emotions are the vehicles the body relies on to find balance after a trauma. Feelings represent the accumulation of incomplete events and the body’s attempt to complete them. By strengthening our inner resources, we are capable of processing these feelings, releasing stored traumas, and increasing our ability to handle stress with greater ease.

Protection
When trauma occurs, our bodies activate a protective mechanism. A stressor that is too much for a person to handle overloads the nervous system, stopping the trauma from processing. This overload halts the body in its instinctive fight or flight response, causing the traumatic energy to be stored in the surrounding muscles, organs and connective tissue. Whenever we store trauma in our tissue, our brain disconnects from that part of the body to block the experience, preventing the recall of the traumatic memory. Any area of our body that our brain is disconnected from won’t be able stay healthy or heal itself. The predictable effect of stored trauma is degeneration and disease.

Memory Beyond the Brain
There is ample scientific evidence proving memory storage in locations other than the brain abound. Three examples of the body containing extraordinary memory capabilities are:

1. Immune system response is enhanced by memory T-cells maintaining information about previous attacks by specific foreign antigens.

2. Muscle memory improves the ability of top class sports people and musicians to perform optimally even under extreme pressure.

3. Genetic research has demonstrated that the matrix composing our body’s cells (DNA) possess a complex information storage system.

When considering the vastness of our body’s intelligence, it is no wonder that our muscles and fascia are capable of holding memories.

Unlocking Memories
Three things are necessary for the body to release stored trauma:

1. The inner resources to handle the experience that were not in place when the experience originally occurred.

2. Space for the traumatic energy to go when released. Being full of tension and stress does not allow space for the stored trauma to move into.

3. Reconnection of the brain with the area of the body where the trauma is stored.

Combining bodywork with verbal therapy can successfully bring a trauma to completion. Many types of verbal therapy are ideal for the development of a person’s inner resources for handling a traumatic experience. Certain bodywork styles effectively reduce stress and tension levels making room for release as well as function to reconnect the brain with the stored trauma.

Bodyworkers play a key role in bridging locked memories with the physical body. The techniques known as myofascial release or myofascial unwinding are hands-on methods for initiating traumatic memory release. Myofascial work locates and physically frees the restrictions in muscle and surrounding fascial tissue that house traumatic memories. As a skilled therapist holds and unwinds these tissue tensions, memories may surface and release, causing the body to spontaneously "replay" body movements associated with the memory of the trauma. This release initiates relaxation, unlocking the frozen components of the nervous system. Such a shift marks the reconnection of the brain with the tissue housing the trauma, allowing transformation and healing to ensue.

Seeking Support
Bodyworkers utilizing myofascial release techniques practice within the illuminating space between physical and emotional health. While developing the emotional resources to cope with a traumatic experience is best reserved for those specifically trained in verbal therapy, bodyworkers can effectively fill the gap of total health in traumatic recovery. As psychological counseling is beyond the scope of practice for most massage therapists, it is recommended to practice release techniques with a client who has sought, or is currently seeking support from a mental health professional. Meeting all three of the components necessary for unlocking and healing from stored trauma combines the work between client, mental health professional and bodyworker. With this holistic approach, traumatic events can go to completion, allowing the body to once again find balance.

Recommended Study:
Myofascial Release
Advanced Anatomy and Physiology

References:

Grant, Keith Eric, PhD, NCTMB, Mind and Body, Massage Today, July 2003.

www.alchemyinstitute.com, The Alchemy of Healing: An Exploration of the Meaning of Illness, David Quigley, the Alchemy Institute of Healing Arts, 2006.

www.anniebrook.com, The Physiology of Shock and Trauma, Annie Brook MA, LPC, Annie Brook, 2001.

www.cranialsacraltherapy.org.uk, Tissue Memory and Trauma, David Ellis, November 2005.

www.fnd.org, Writings on the Great Unwinding, Marvin Solit, DO, The Foundation for New Directions, February 2005.

www.integrative-healthcare.org, The Therapeutic Relationship in Post Traumatic Stress Disorder, Natural Wellness, July 2005.

www.positivehealth.com, Biodynamic Massage: A Truly Therapeutic Massage, Denise McCrohan, Positive Health Publications Ltd., 2002.

www.satyamag.com, Releasing Muscle-Bound Memories, David Drier, Stealth Technologies Inc., November 2001.

© Copyright 2007. Institute for Integrative Healthcare Studies. All rights reserved. 1-800-364-5722

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2. http://saveyourself.ca/articles/tissue-memory.php

The Body Remembers
How your body can store emotional experience in your tissues, and experience them again during massage therapy
by Paul Ingraham, Registered Massage Therapist (Vancouver)

This document expresses my opinion only, and does not replace medical advice. More …

Recently, a woman came to me with a question: “Why do I start crying when I go like this?” And she tipped her chin up into the air.

“Do you feel like crying right now?”

“Yes, but I can control it. If I stay here, though, it will get stronger until I have to cry.”

What on earth is going on here?

This is an unusually vivid and specific case of body memory or somatized emotion, a phenomenon well known to many massage therapists and mental health care professionals. Even more exotic examples come up occasionally, but the experience is stranger than the explanation.

Even after many years of scientific data (and new age propaganda), most people still tend to believe that thoughts and feelings are abstract and have little or nothing to do with the physical body. The only widely accepted example of emotions affect the body is that stress aggravates or even causes a variety of conditions, especially heart disease. But the mind-body connection it goes much deeper than that.

When you feel an emotion, you feel it all over: every cell in your body is involved

Emotions are a physical as well as a mental experience. An emotion is a set of physiological changes of all kinds, within a specific mental context. For instance, guilt is characterized by constriction of peripheral blood vessels and cooling, and increased blood pressure and muscle tone. A set of neurological and hormonal events also takes place, releasing a cocktail of molecules into the bloodstream that change the behaviour of every cell in your body. When you feel guilty, you feel guilty all over: your toe cells are affected just as much as your brain cells.

Muscle tissue in particular is involved in emotional experience. It constitutes a large and complex sensory organ (see The Sixth Sense), as well as an organ of action. A strong emotion can permanently alter the constitution of muscle tissue. Later on, stressing those tissues, or placing them in a position that physically recalls the circumstances of the original emotion, essentially recreates the sensation. In this way, emotions can become “carved in flesh,” a kind of memory — much the way a smell can evoke strong memories, a physical position can evoke them too, and strong emotions along with them.

You can think of body memory as “long term memory.” If you have a fierce, passing craving for a chocolate bar or a wave of sadness as you’re watching the news, it probably doesn’t get stored in your muscles. The stuff that gets stored tends to be either chronic or intense. In other words, the important stuff: major themes and the crises.

Emotion stored in muscles is ancient history

My client was demonstrating a very immediate recovery of emotional experience from her tissues. Whatever it was, it was ancient history. If the original emotion was felt during a crisis, she would have remembered it. The alternative is that it had to be accumulating for a long time.

We all have emotional experiences, usually sadness and anger, stored like memories in our tissues, and it is usually not so obvious. In fact, most people are not aware of it at all: it all just blends into aches and pains, and feels like weariness or anxiety.

Fortunately, it’s a fairly simple matter to create a safe opportunity to dissipate body memory, and getting rid of it can literally feel like a weight off your back. Just one more reason why people love massage therapy for reasons they can’t explain to their doctor.

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Next meeting: January 12, 2009

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


The January meeting is scheduled for Monday, the 12th, from 6:30 – 8:00 PM (directions below).

Matt Kramer will present information on Voice Mapping and Sound Healing, a type of biofeedback therapy.

Matt Kramer is a professional mediator, facilitator and trainer. Since 1994, he's performed over 500 mediations including workplace conflicts, business, family, divorce and custody disputes, small claims and litigated civil disputes and victim/offender restitution. Currently, Matt is also a practitioner of Voice Mapping and will be speaking about this therapy at our meeting. Please visit his website at http://www.mkvoicemap.com/ and bring any questions you have.

To give you an idea about what Matt will be talking about, here's a brief excerpt from his website:

"In a Voice Mapping session, you will record short "voice maps" on family, relatives and significant people in your life, about circumstances (such as car accidents and traumatic childhood events), and about health and other chronic conditions that are limiting your capacity to live a full, emotionally healthy life. Words are not recorded, only a combination of the present and missing frequencies in your voice. The missing frequencies are a consequence of the buried memories connected to the subject of your recording."

"The frequencies derived from your recording are then broadcast back to you. These frequencies stimulate and balance the relevant memory/muscle connection. During the balancing, you may experience a powerful emotional release or realize a significant insights into stress your experienced. If that connection is storing a memory connected to stress and trauma, that memory is causing an imbalance or distortion in the body’s energy field. That imbalance is contributing to the challenges you may be facing. In the biofeedback process, you may recall forgotten memories, strong emotional feelings, and/or critical insights that can help you break free of rigid thinking, unresolved grief and anger and other buried emotions that keep you stuck in repetitive behavior patterns."

More information may be found at http://www.mkvoicemap.com/


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.