The PHA Support Group “Scoop”

Spring 2012

What do planting herbs, guided relaxation and identity theft have in common? All were recent topics of PH support group meetings! Many believe support groups are “doom and gloom,” but it’s not true — they provide outlets to relax, useful tips for living better and more.

  • Little-known fact: yoga can be done on a chair. It’s true! The Dallas PH Support Group received a demonstration of “chair yoga.” Members learned breathing and stretching techniques to help them improve their health. Central Florida Support Group members learned a little bit of yoga as well. The Inland Empire PH Support Group which meets in Riverside, Calif., experienced “Guided Relaxation” and learned other ways to reduce stress.
     
  • Put your feet up and let us help you with your chores — your local support group might just be able to help you find help around the house! The Southwest Florida PH Support Group and the group in Mercer, Pa., brought special relationship managers and administrators to teach members how to make their homes safer and make housework easier to manage. You never know what you’ll learn at a PH support group!
     
  • Do you know where your driver’s license is? The Midlands/Palmetto, S.C., PH Support Group featured a speaker from the local government’s Department of Consumer Affairs to talk about identity theft!
     
  • Put your coffee mug down and read this: members of the Brevard County, Fla., PH Support Group received tips from a sleep disorder specialist about how they can eat their way to a good night’s sleep. The Kentuckiana/ Louisville and Portland, Ore., PH Support Groups featured speakers discussing ways to maintain an antiinflammatory, heart-healthy diet. Patients in Newark, N.J., dished about “food makeovers” — or how they can make their favorite foods tasty with less salt and fat. Long Island — Nassau, N.Y., PH Support Group members met at Whole Foods and had a cooking demonstration and tour of healthy food options.
     
  • Imagine if a storm cut off your electricity or running water; for a PH patient, advance preparation can make a world of difference in managing health in an emergency. Fortunately for patients in Port Charlotte, Fla., the local EMS came to a meeting and spoke on hurricane preparedness.
     
  • Ever heard of art for the heart? Crafting, drawing and painting can be a good way to relax and de-stress. The Cleveland, Ohio, PH Support Group hosted a special meeting about bonding and self-expression through art.
     
  • The Philadelphia, University of PA Health System PH Support Group is digging in the dirt! Members learned about gardening during a recent meeting.
     
  • The Valley of the Sun (Phoenix, Ariz.) and Dallas PHriends PH Support Groups brought medical experts to discuss pain management.
     
  • I’ll take “Pulmonary Hypertension Trivia” for 500, Alex! PH support groups took “Jeopardy” to a personal level: several group leaders used game show-style trivia with PH facts to educate and spice up their meetings. Patients tested their PH knowledge at recent meetings in Mid-Hudson Valley, N.Y., North Central Florida, Jacksonville and Santa Barbara.
     
  • PHA welcomes first meetings of new groups: South Jersey; Shreveport, La.; Springdale, Ark.; Binghamton, N.Y.; Corpus Christi, Texas, and Flint/Saginaw, Mich.
     
  • PH groups in South Dakota have the distinction of operating in one of the few states to have no PH clinics. Their April meeting was the largest in their history; 30 came together, including five who were new to the group. This turnout represents three times their regular attendance. Cindy Schulz, the new support group coleader, attributes it to the interest in guest speaker Dr. Kevin Vaska.
     
  • Dr. Deborah Levine spoke at the Eastern Panhandle, W.Va., PH Support Group on improving patient and medical professional relationships for better healthcare.
     
  • Ft. Myers, Fla., PH Support Group Leader Bob Hertz worked hard to set up his largest meeting to date, bringing an international PH leader: Gerald Fischer, PHAEurope President. Patients around the region traveled to this meeting, including the South Florida Latino PH Support Group, which rented a shuttle to bring patients to the meeting.
     
  • The Ft. Wayne, Ind., PH Support Group, was very pleased to host Dr. Vallerie McLaughlin as its special guest speaker. According to one patient, “Dr. McLaughlin is the most awesome woman ever! If not for her, I’d have died. She saved my life twice! She is always at the forefront of new technology, medicines and techniques for keeping us healthier longer.

 

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NORD

The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.