• Family Conference 2023
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In our drive to find a cure for NBIA,
we provide support to families, educate the public and accelerate research with collaborators from around the world.


 

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Dr. Don McGeary

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?

 

McGeary emphasized that it’s important for people who are disabled to focus on what they can do, even if it means pushing themselves to do a little more than they think they can. They should safely test their limits.

“When you default from active to passive, you do worse,” McGeary said. “Don’t underestimate your abilities.”

If, for example, you think you can take 10 steps across the room, try adding one or two more steps.

Individuals and families should avoid looking at everyday problems as catastrophic; look on them realistically, McGeary said. Focus on quality of life and making it as good as it can possibly be. “Quality of life tends to suffer (when you are) avoiding activity for fear of making things worse,” he said.

Affected individuals and their caregivers need to tap into social support structures: friends, family and services. Isolation is not healthy and can lead to more depression.

Recognize when you need help and know what resources are available, he said. Keep a list of those resources handy and the circumstances for which you will want to use them. Clear signs of needing help are feeling overwhelmed or burned out. Past experience is often a good measure of what a person can handle, he said.

If you recognize someone needs support but isn’t reaching out, don’t force them but try pointing out: What you’re doing isn’t working; maybe it’s time to try something new, McGeary said.

Social workers can be very helpful at finding resources. Network with others. Reach out, he said.

McGeary advised planning for when things get worse, learning new things when you’re feeling down and being active even when you don’t feel like it.

“If you don’t feel like doing anything, do something anyway,” he said. “When someone does something, they feel better.”

Disabled people and caregivers can benefit from exercise and learning relaxation techniques, such as diaphragmatic breathing. Some people call it ‘belly breathing,’ which means air enters the lungs and the belly expands while breathing. Try it for one minute, four times a day, he suggested.

Be mentally engaged. Solve a puzzle. Change your thoughts. There is a difference between thinking “I have to do this” and “I want to do this,” McGeary said. “Ask yourself: ‘Is this thought helpful or valid?’”

Recognize if your thinking is irrational. Is it overly rigid, assumptive, catastrophic or overly positive? Try to change the irrational thought with a rational one. It takes practice because negative thinking can become ingrained in us, McGeary said. But we can change. “Practice, practice, practice,” he said.

 

 

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