Sept 2009 E-letter

[MI Family Caregivers]

A message from the National Family Caregivers Association

Encouraging Family Caregivers to Speak Up

September 2009 E-LETTER

TO NFCA ONLINE MEMBERS AND FRIENDS

This month find information on:

Make This the Month You Speak Up for Coordinated Chronic Illness Care

Celebrate NFC Month 2009: Learn How to Prevent Medication Mishaps

National Pain Foundation Raises Awareness of After-Shingles Pain

Protect Your Loved One and Yourself With the Proper Legal Documents

U.S. Family Caregiver Postage Stamp Petition Needs Your Signature


Volunteers Needed for Clinical Trials and Research Programs

Make This the Month You Speak Up for Coordinated Chronic Illness Care
Discussions about healthcare reform are heating up across the country.
It’s vitally important that you take this opportunity to contact your
representative and senators and tell them your caregiving story. NFCA
offers the following talking points to help guide your conversation:


Family caregivers provide 80 percent of the care for our nation’s
chronically ill and disabled population. We know from personal
experience how poorly our loved ones are cared for in our present
system, which focuses on acute care and paying for procedures rather
than on holistic care that is carefully coordinated between personnel
and across care settings.


System delivery reform that pays doctors and other healthcare
providers to provide good chronic illness care will make a huge
difference in the health and well-being of our loved ones. It will
also improve the health and well-being of the nation’s family
caregivers.


Urge your members of Congress to pass legislation that authorizes
pilot projects across the country that focus on providing
comprehensive chronic illness care. Urge them to pass legislation that
is focused on the whole person, not the procedure. Tell them that this
approach saves money. To get contact information for your senators and
representative, go to http://www.house.gov and http://www.senate.gov/
.


Celebrate NFC Month 2009: Learn How to Prevent Medication Mishaps
In celebration of NFC Month 2009, NFCA is once again offering a FREE
teleclass/webinar to family caregivers across the country. “Safe &
Sound: How to Prevent Medication Mishaps” will be offered on Thursday,
November 12, at 2 p.m. EST.

This FREE teleclass/webinar will help you understand when medication
problems are most likely to occur and what you can do to prevent them.
There are approximately 100,000 deaths each year due to adverse drug
reactions. This teleclass/webinar will give you the tools you need to
minimize the possibility that you or your loved one will experience an
adverse medication event.

To sign up for “Safe and Sound: How to Prevent Medication Mishaps,”
send an e-mail to

tele...@thefamilycaregiver.org. The registration platform will open
September 9. NFCA will contact you then with further instructions.

National Pain Foundation Raises Awareness of After-Shingles Pain
Each year approximately one million Americans will develop shingles,
and one in five of those may go on to develop postherpetic neuralgia
(PHN), also known as after-shingles pain. PHN is an often debilitating
condition that can greatly impact your quality of life. PHN affects
mostly older Americans and those who suffer from PHN often suffer in
silence.


September is National Pain Awareness Month. To raise awareness of
shingles and postherpetic neuralgia (PHN), the National Pain
Foundation (NPF) has declared September 15 PHN Awareness Day. In honor
of PHN Awareness Day, the Patchwork of Hope Network will broadcast a
free, one-hour event on September 16 at 10 a.m. EST. Those tuning in
will hear presentations about the risks, symptoms and impact of these
debilitating conditions. Visit http://www.aftershingles.com/ on
September 16 at 10 a.m. EST to tune in to this free, one-hour event.


Protect Your Loved One and Yourself With the Proper Legal Documents
As part of the healthcare reform debate, there’s been quite a bit of
talk lately about end-of-life planning. As a family caregiver, you
know how important it is to have the proper legal documents in place
to protect your loved one and yourself. Every state requires its own
advance directives. The Caring Connections Web site of the National
Hospice and Palliative Care Organization has all 50 state forms and
you can download yours for free. Go to www.caringinfo.org/stateaddownload.


U.S. Family Caregiver Postage Stamp Petition Needs Your Signature
Thanks to the hard work of NFCA’s Caregiver Community Action Network
(CCAN) state volunteers, a U.S. family caregiver postage stamp is now
officially “under consideration” by the Citizens’ Stamp Advisory
Committee of the U.S. Postal Service. This remarkable effort was
undertaken to honor this country’s approximately 50 million family
caregivers.

If you haven’t already signed a letter of support, there’s no better
time. We are in need of 2,000 more signatures and you can be one of
them! Visit NFCA’s Web site at http://www.thefamilycaregiver.org/ and
click on the U.S. Postage Stamp button on our home page to submit a
letter to the Citizens’ Stamp Advisory Committee. And please pass this
message along by posting it to your Facebook pages, Twitter, or other
networking sites. Every signature helps!


Upcoming Clinical Trials and Research Program
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.


Parkinson’s Disease Study Under Way
A clinical research study is now enrolling people with mental and
behavioral symptoms of Parkinson’s disease. To qualify, participants
must: be at least 40 years of age; have been diagnosed with
Parkinson’s disease for at least one year; be experiencing behavioral
symptoms of Parkinson’s disease; seeing, feeling, or hearing things
not really there; and paranoid or distrustful of others. These
symptoms must have started after the diagnosis of Parkinson's disease.


All participants will receive at no charge: Health monitoring as it
relates to the clinical study; ongoing study-related medical care by
dedicated Parkinson’s disease medical staff; study medication or
placebo (inactive substance); and the opportunity to talk to a medical
research team that understands what you are going through.
Transportation to and from clinics may be provided and compensation
for time and travel may be provided.


For more information, visit http://www.parkinsonsbodymind.com/ or call
866/565-0262.


Do You Want to Tell Your Healthcare Story?
The University of Michigan Center for Managing Chronic Disease and
Advocacy for Patients with Chronic Illness, Inc. have been awarded a
grant by the National Institutes of Health (NIH) to study the
obstacles facing the chronically ill and their family caregivers;
interventions that do and do not work to surmount those obstacles; and
ways in which the work done by the NIH, including research and
clinical trials, may be helpful to patients with chronic illnesses and
their caregivers. With the help of 12 patients and family caregivers,
a survey has been developed that can be taken online at
http://chronicdisease.survey.sgizmo.com.


If you are a family caregiver of a person with a chronic illness such
as Crohn's disease, epilepsy, rheumatoid arthritis, fibromyalgia,
multiple sclerosis, immune deficiency, or another chronic illness and
you are at least 18 years old, you are encouraged to take the survey.
If you are unable to take the survey online, if you would prefer to be
interviewed by telephone, or if you have questions about the research,
contact Shelley Stoll at 734/764-7136. She will answer your questions,
provide more details about the study, and arrange for an interviewer
to call you to schedule a telephone interview at a time that’s
convenient for you.


Attention Female Family Caregivers of Stroke Survivors
The Loyola University Chicago School of Nursing is seeking female
family caregivers to participate in a study investigating stress and
coping related to caregiving. If you are a female over the age of 18
with the ability to speak, read, and write English and caring for a
family member who has experienced a stroke within the past three to 12
months, you may be eligible to participate in this study. The study
entails completion of written questionnaires and collection of saliva
samples to measure a stress hormone. Interested participants will be
mailed study materials and will return materials in a provided postage-
paid packet. Participants will be compensated for their time. For more
information, please contact Dr. Karen Saban at 708/216-1244.


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: http//
www.thefamilycaregiver.org


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