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Mid-South Area PH Support Group: September 2013
Wednesday, September 18, 2013

 

The Mid-South Pulmonary Hypertension Support Group met on Thursday, September 5, 2013 at Logan’s Restaurant located on North Germantown Parkway under the leadership of Chuck Thompson.  He began the meeting by welcoming all and informed the group of Barbara’s illness that prevented her attending.  Chuck shared information about two surveys being conducted that pay participants.  One is looking for patients who are currently receiving treatment for Pulmonary Arterial Hypertension (PAH) to participate in a 60-minute telephone interview to discuss new treatment for the management of PAH.  The interview will pay $125 for your time, opinions, and feedback if you qualify. 

(Call 312-268-2413 to see if you qualify to participate.)   The other study is to better understand and have insights into the experience of people living with PAH and their caregivers.  This is strictly a research study; no sales of any kind and all responses will be held in strict confidence.  Those who qualify will participate in a 60 minute webcam web assisted telephone interview online discussion.  If you do not have a webcam, they will ship one to you.  Participants will receive a $100 prepaid Visa as a thank you. 

(Call 615-732-7756 to complete a screening questionnaire or go online for a short pre-screener at www.surveygizmo.com/x3/1352693/ to see if you qualify.)  For more information, visit www.20/20research.com.

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The first speaker was Debbie Hicks, Marketing Director for Right at Home, a company offering care options tailored to meet individual needs.  Examples were given of the services offered and included safety supervision, transportation, light housekeeping, ambulation and dressing assistance, bathing and other personal care services, medication reminders, meal planning and preparation.  Ms. Hicks presented information on how to maximize visits with your physician.  Her presentation included the following information:  Keep a diary to track symptoms and concerns.  Be prepared to discuss when symptoms began and how you treated them.  Know your medical history and your family’s history.  Have a list of specific questions.  Have a list of all medications, supplements and vitamins that you take.  Take paper and pen with you for appointments and when possible, take a friend or relative.  Ask for clarification when you don’t understand.  Inform your doctor of how much or little you want to participate in the decision-making process.  Know how to get in touch between visits and when your next appointment is scheduled.  Ms. Hicks gave pocket size composition books to all attendees.

 

The next speaker was Timothy Ballard, APN, MSN, ACNP from East Tennessee Heart Consultants. His stated goal was to empower PHers to achieve better quality of life by understanding the disease.  He emphasized that each person is different depending on diagnosis, treatment, etc.  Mr. Ballard explained how the heart and lungs work together and the very complex process of blood flow and getting needed oxygen.  He suggested these thoughts to consider when deciding “How much should I exercise?”  Talk to your doctor.  Avoid hot weather exposure.  Start slowly.  Be consistent/regular.  Avoid high altitude.  Find someone to accompany you.  Mr. Ballard answered many questions from the group during his presentation and while people were eating.

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Gilead Sciences, Inc. sponsored the dinner and meeting and were represented by Kevin Hansford.  Mr. Hansford gave attendees copies of Insights Cookbook (healthy recipes designed exclusively for individuals living with PAH).  Gilead has more PAH resources available at www.InsightsOnPAH.comAlso in attendance were Joe Whitman and Lela Scott of Accredo.

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The next support group meeting is planned for November 7, 2013 at 6:00 with the location to be announced at a later date. We seem to have outgrown Logan’s Roadhouse. Barbara Thompson can be contacted at 901-463-8688 or BarbaraInMemphis@aol.com.

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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.