Helpful Articles - NBIA Disorders Association

Messages from the President: 2003-2014

These are select articles originally published in the NBIA Disorders Association newsletter, written by Patricia Wood, president and founder of the organization. She shares her experiences in living with NBIA over the years, in the hopes that it will help other families in dealing with the often difficult and devastating impact NBIA has on their lives. It also chronicles the growth of our organization since its inception in 1996.

The articles are in chronological order from 2003 - 2014. Update: In June 2014 her daughter, Kimbi, turned 28 years old. In 2010, Kimbi got an intrathecal baclofen pump and since then, has been stable with very few bouts of hard dystonia.

Know how to tap the media to spread NBIA awareness

Most of you, if not all of you, have an interesting story to tell about NBIA. But how do you pitch a story to the media and get results?

Kristine Tanzillo, a public relations specialist in San Antonio, Kristina De Leon, a reporter with WOAI-TV in San Antonio, and Mary Ann Roser, an NBIA board member and journalist, discussed ideas for stories, and how to share them, at the Seventh International NBIA Disorders Association Family Conference in the AlamoCity in April.

Tanzillo, whose late sister had NBIA, provided a handout of helpful tips.

Coping with Disability

To cope with disability, be active, reach out to others, learn to relax

As the father of a disabled son, clinical psychologist Don McGeary knows how stressful life can be for the person who is disabled—and for their families.

That’s why learning to manage stress is so important, said McGeary, an assistant professor and residency director at the University of Texas Health Science Center at San Antonio. He was among the speakers at the Seventh International NBIA Family Conference in the AlamoCity in April.

Unfortunately, he said, there is no research on coping with NBIA. So, what can be done?

What you need to know about home health care

Most of us know that people with a long-term illness or disability enjoy the control and flexibility of receiving health care in their homes--and family caregivers benefit as well. But choosing a home health agency and knowing which questions to ask can be daunting.

langley1 Representatives of two nationally known home care agencies provided tips at the Seventh International Family Conference in San Antonio: Jennifer Lopez , regional director of quality assurance at ResCare Home Care, and Dr. John Langley, chief medical and quality officer for Maxim Healthcare Services. Patricia Wood, NBIA president and a user of home health services, provided a consumer’s perspective.

Recreation for All - Ideas for Everyone

Click on the image below to view this article as a slideshow of images.

View the embedded image gallery online at:
http://nbiadisorders.org/family-support/helpful-articles#sigProId39f6026c90

Now is a good time to do the family’s estate planning

We are all used to planning every day whether it’s to take care of our children, our families, our homes or issues at work. We make plans so that when we are not at home or at work, someone responsible will carry out our instructions.

The same concept applies to estate planning. What’s that? Fundamentally, estate planning is good stewardship of your financial and personal resources so that you have a plan in place to care for your family. It may involve a will or revocable trust, appropriate insurance, planning with retirement assets, or some other kind of financial plan.