Meeting in a Minute PHA’s Growing Meeting Topic Guide

No Speaker? No Problem! Planning Fun and Informative Meetings without a Speaker

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Table of ContentsTable of ContentsTable of ContentsTable of Contents

Introduction ......................................................................................... 5

Is a Speaker Always Needed? ............................................................................... 7

Social vs. Educational meetings ........................................................................... 7

Activities and Discussion Questions ...................................................... 9

Sharing Your PH Stories ..................................................................................... 10

Educate with a Recorded Webinar ..................................................................... 11

PH Movies and Discussion ................................................................................. 11

Comedy or Game Night ...................................................................................... 12

PH Trivia ............................................................................................................. 13

Speaker Suggestions ........................................................................... 15

Long Term Survivor as Speaker .......................................................................... 16

Leader as Speaker .............................................................................................. 17

Sample Agendas ................................................................................. 19

Additional Resources/Information ...................................................... 22

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I took my mom and husband to a support

meeting for first time, I kind of hide things

about PH and was in protection mode. Well,

half way thru it mom broke down totally

which caused me for first time to really cry

about all this! The leader and social worker

[speaker] were amazing! I feel so good

getting my fears off my chest and being able

to really let them know how I feel physically

versus pretending all the time! To those who To those who To those who To those who

support, lead or are friends of mine… thank support, lead or are friends of mine… thank support, lead or are friends of mine… thank support, lead or are friends of mine… thank

you! I don’t think i could do this without you you! I don’t think i could do this without you you! I don’t think i could do this without you you! I don’t think i could do this without you

all! all! all! all!

-A PH Patient, on the PHA Facebook Page

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Introduction

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Whether you are new to organizing a support group, or have been leading and planning support group

meetings for a while, it seems to be seen as a given that each of your meetings will feature a talk by a

medical professional or some other formal presentation. While excellent speakers enhance your

meetings, don’t forget what is at the core of pulmonary hypertension support groups: coming together

to meet and find comfort and support from others living with this same, rare disease. Your meeting is a

success even if only one other patient attends and the two of you share your stories, since, by coming

together, the two of you are ending the isolation that comes with a frightening diagnosis. In this

publication, we discuss some ways you can make your group a success and provide benefit to your local

community with or without a speaker.

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Is a Speaker Always Needed?

Sometimes plans fall through. You never know

when that perfect speaker unexpectedly cancels

because bad weather affects his or her ability to

travel to your meeting. Maybe the doctor you

had scheduled months in advance will call right

before the meeting to let you know he or she

has a scheduling conflict. There are all sorts of

reasons why you may have a support group

meeting without a speaker. Even when you

organize and plan for speakers and sponsors

months in advance, things can change and you

can end up in the position of having to hold a

meeting without a speaker or educational topic.

No need to stress or cancel your meeting;

there’s plenty you can do to run a successful

meeting without a speaker. You’d be surprised

how many different options you have. You can

take advantage of this opportunity for members

to get to know one another and for your group

to set goals and plan for the future. Most

importantly, by having a meeting when your

original plans fall through, you show your group

that the group is consistent and active.

In this publication we’ll cover some options for

fun, productive and creative ways to run

meetings when you don’t have a speaker.

Social vs. Educational Meetings

Even if you have your year of meetings planned

and don’t plan on setting aside an entire

meeting for any of the suggestions below, think

about finding a way to include some of these

ideas in your upcoming meetings. Adding some

fun and games to your support group meetings

allows the mind to relax for a while and can

bring members of your support group closer

together.

Meetings can be simultaneously educational

and social, and there’s no need to limit your

meeting to being just one or the other. PH

patients and their caregivers enjoy going to

meetings with medical professionals as

speakers. These presentations provide expert

insight into relevant health topics like managing

medications and healthy eating. For this reason,

support group meetings with medical speakers

attract the many people who want more time

with and advice from medical professionals. At

the same time, support groups also draw many

people who simply want to connect with others

who live with this disease. Having a balance

between educational and social meetings is

essential for making sure that everyone gets

what they want from coming to your meetings.

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We had a new member show up. I think we really helped her to understand more about PH and treatment options which she had no idea about… she came up to talk to me at one point and said that she sometimes feels so alone because she doesn't know anyone with PH, in which I replied, "You’re not alone You’re not alone You’re not alone You’re not alone anymoreanymoreanymoreanymore."

-Mary Sisk, Savannah, Georgia PH Support Group Leader

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Activities and

Discussion Questions

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Sharing your PH StoriesSharing your PH StoriesSharing your PH StoriesSharing your PH Stories

There are so many different ways to share stories at your meeting, depending on the size of the support

group and whether members are talkative or shy. Pick a style of sharing that works best for the

members of your support group.

For small support groups, there’s plenty of time for everyone to share their stories; have members take

turns telling their diagnosis stories and how their lives have changed. For groups with larger

attendance, you might need to limit the amount of time each person gets to speak, giving each member

(who wants to speak) 5-10 minutes to share. It might be fun to have interview sessions: When a

member is taking their turn, others can ask them questions. We’ve included some questions that might

aid your group’s conversation.

Questions can also help if your group has a lot of shy members who might need prompting.

Storytelling and listening to personal stories has proven health benefits and can bring a group of people

closer together. If members of your group seem to enjoy sharing their stories, think of some ways you

can build off of this type of meeting. Maybe you’d like to make a booklet

of willing participants’ stories that you can share with newly diagnosed

patients. Some of you might be inspired to get a personal story about PH in

the local newspaper. Your story can help others and bring more attention

to PH!

Here at PHA, we have a large collection of stories written by PH patients

and family members. You can find these stories under Our Journeys on the

PHA website. www.PHAssociation.org/OurJourneys Print out a story that

you find particularly interesting and read it aloud at your meeting to give

your members an example.

• When were you diagnosed with PH?

• What‘s the best advice you’ve been given in the past year?

• What advice do you have for someone living with multiple

conditions?

• How do you explain PH to those who know nothing about the

disease?

• What do you do to unwind?

• What’s a typical day with PH like for you?

Ask Some QuestionsAsk Some QuestionsAsk Some QuestionsAsk Some Questions

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“[PHA] made a file out of the

[PIM-1] webinar that I

downloaded to my Macbook.

This gives me the freedom to

show this without worries. You

might consider downloading it

for a meeting that either you

plan or use it as a backup.”

-Stu Berwick, SGL Dallas, Texas

Leader Leader Leader Leader WordsWordsWordsWords

Educate Educate Educate Educate with a Recorded Webinarwith a Recorded Webinarwith a Recorded Webinarwith a Recorded Webinar

PHA regularly hosts educational events featuring medical professionals as

speakers and archives them in PHA Classroom. Think about showing one

of these at an upcoming meeting like Dallas, Texas Support Group leader

Stu Berwick (see Leader Words on right); there are dozens of

presentations to choose from:

• Consider showing your group one of these like “PIM-1: A New

Hope for the Diagnosis and Treatment of PH,” which introduces

groundbreaking new research. Take a look at PHA’s offerings on

the PHA Classroom page of the website:

www.PHAssociation.org/Classroom/Recordings

• The webinars focus on a range of topics from medical

information, to coping with PH in your daily life, to ways to get

involved with PHA.

• Ask members of your support group the topics they are interested

in learning about so you can choose the best webinar to watch.

• Consider having a nurse present to answer any questions that

come up after watching the presentation.

PHA PHA PHA PHA MMMMovies and ovies and ovies and ovies and DDDDiscussioniscussioniscussioniscussion

PHA has produced a number of educational and PH-related videos, which can serve as an excellent

starting point for a PH “Discussion Night.” We offer these DVDs on our website; take a look at the list on

the “PHA Store” online (www.PHAssociation.org/Store) and feel free to request any titles that interest

you. Remember, mailing materials can take time, so make sure to make your request at least 10 days

prior to the meeting. Consider requesting a movie now, just in case plans for an upcoming meeting

change. Email us if you can’t afford the $10 cost of the DVDs: SupportGroups@PHAssociation.org

Screening these videos at meetings can also give your group a central discussion point. Come prepared

with some questions to prompt discussion, and see where it goes from there. Remember to use open-

ended questions that invite varied responses. Consider questions like:

• What parts of the film came as a surprise to you?

• What made you the most hopeful when watching the film?

We suggest showing one of the free inspirational videos that PHA has to offer. You can ask for

copies of:

• “Path to a Cure,” which documents several PH medical professionals’ climb of Mount

Kilimanjaro to raise PH awareness.

• “Determination in the Delta: Meeting the Challenge of Pulmonary Hypertension,”

about a PH patient’s swim across the Mississippi river. These are both very upbeat videos and

provide inspiration if members of your group are interested in awareness efforts. Request

copies by emailing SupportGroups@PHAssociation.org .

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“When we had our ‘Laughter is

the Best Medicine’ meeting I

asked everyone to either bring

a funny story and/or a good

joke to share during our ‘Check

In’ portion of our

meeting. Then, instead of a

speaker, we watched two short

"Three Stooges" movies that I

had rented from Netflix.”

-Charlotte McCabe, SGL

Puyallup, Washington

Leader Leader Leader Leader WordsWordsWordsWords

• Apples to Apples

• Taboo

• Pictionary

• Scattergories

• Charades

Fun GamesFun GamesFun GamesFun Games

• Little Rascals

• Patch Adams

• Cheaper by the Dozen

• The Princess Bride

• Toy Story

FunFunFunFun MoviesMoviesMoviesMovies

Comedy or Comedy or Comedy or Comedy or GGGGame ame ame ame NNNNightightightight

Have you had a lot of medical speakers doing presentations lately?

Sometimes the pace of medically oriented support group meetings

makes it difficult for members to interact and get to know one

another.

Have a fun movie or game night so everyone can socialize! It’s

always easier to go to a meeting when you know you have friends

there, so maybe it’s time to take a break in your busy meeting

schedule to have fun as a group. It’s especially good for new

patients to have the social bonding that comes with fun, non-

medically themed meetings.

Depending on the size of your group, you might want to bring

several different options for games. Board games can be fun, as

well as games that can accommodate any number of players, like

charades. Ask members to bring a favorite game to share, or

discuss possible games at an earlier meeting. Take a look at our list

of fun games that accommodate many players; ask members if

they have them and would like to explain the rules!

Don’t forget the power of laughter! Laughing is healthy, it lightens the

atmosphere, and it brings people together. For a “Comedy Night,” like the

Puyallup, Wash., group enjoyed, consider watching some lighthearted (and

G or PG rated) movies at a meeting. If you don’t want to spend the whole

meeting watching a movie, consider watching some short films or comedy

sketches.

• Apples to Apples

• Apples to Apples

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PH TriviaPH TriviaPH TriviaPH Trivia

Just because a meeting is fun, doesn’t mean it can’t be educational too! Use your Survival Guide to come

up with PH-related trivia questions. These questions can be used for a fun and informative game. If you

have a small group, dust off your Trivial Pursuit board and use PH questions instead of the ones that are

provided with the game. If you have a bigger group, you can make a special board like the one below for

the questions, and play PH Jeopardy! Here’s a free website that helps you create your own Jeopardy

board: www.jeopardylabs.com. We’ve included some sample questions in the “Additional Resources”

section on page 22.

This game board was created by South Riverside County, CA Support Group Leader, Alex Flipse, for one

of her recent meetings. Mack McCarthy, leader of the Valley of the Sun, Ariz., group didn’t make this a

focus, but integrated PH Jeopardy as a fun activity during a meeting with much success!

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Here is a tip... make the Here is a tip... make the Here is a tip... make the Here is a tip... make the group as litgroup as litgroup as litgroup as little as you can tle as you can tle as you can tle as you can about yourself, and as about yourself, and as about yourself, and as about yourself, and as much as you can about much as you can about much as you can about much as you can about everyone else.everyone else.everyone else.everyone else.

-Doug Taylor

Midlands, South Carolina

PH Support Group Leader

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Speaker Suggestions

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LongLongLongLong----term term term term SSSSurvivors as urvivors as urvivors as urvivors as SSSSpeakerspeakerspeakerspeakers

Although most of these suggestions are for meetings in which you do not have a speaker, having a long-

term survivor speak can work well with little notice. This is a good meeting idea to prepare in advance in

case other meeting plans fall through. You can have someone in your group who has had PH for 8+ years

tell their story, answer questions and give tips to your group.

Many people who come to support group meetings are newly diagnosed patients who do not know

what their life will be like. Having a patient who was diagnosed at least eight years ago, when there

were fewer treatment options available, can be inspirational and comforting to those who are dealing

with fear and uncertainty. These long-term survivors were often told that they had only months to live

but have beat the odds and found ways to adjust and thrive. If this is a meeting idea that interests you

but you don’t know of a long-term patient, contact the PHA Volunteer Services team and we can help

put you in touch with someone: SupportGroups@PHAssociation.org

Dorothy Olson was diagnosed with PH in

the 1980s. You and your group can gain so

much from the inspiring story of those who

have beaten the odds and thrived, even

with this disease.

Twenty years ago I was

told I had six months to

live, but now there are

new things being

developed all the time.

The people who are being

diagnosed now have a

future to look forward

to.”

-Dorothy Olson

PHA Co-Founder

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“We liked having another leader at our

meeting. She knows so much and having a

new face made the meeting more special.”

-Linda Milo, SGL Port Charlotte, Florida

Leader Leader Leader Leader WordsWordsWordsWords

Leader as speakerLeader as speakerLeader as speakerLeader as speaker

As the support group leader, you could be the perfect speaker for your meeting! There is so much going

on in the PH community at any given time, and you might be just the person to point members toward

more ways they can become involved. Use this as an opportunity to show members what they can do

outside of attending regular support group meetings. Remember how you were feeling when you first

got your diagnosis, and understand that many of your members may still be in that place. You can tell

them some of the things that get you through the day as someone with PH, and report back on what

others are doing. Some ideas:

Being the speaker at your support meeting doesn’t mean that the meeting needs to be all about you. In

fact, it’s wise to make sure that you don’t only focus the entirety of your meeting on telling your own

story. If you are going to do most of the speaking at an upcoming meeting, select a topic such “Updates

from PHA” or “Ways to Get Involved.” You can also share your story, but be sure to allow time for others

to share and interact.

Another way to have a leader as speaker is

to invite a nearby leader of a different

support group to your meeting as a guest.

They can speak about their PH story, talk

about some of the achievements of their

own group, or even discuss projects that

your groups may want to work on

together.

National Updates from PHA:

Every month we send out an email

newsletter to all support group

leaders with updates from PHA’s

national office. We count on support

group leaders to get these messages

out. Mention important updates at

your meetings, and even think about

using these updates to give a larger

talk on the campaigns members can

get involved with, such as special

events or advocacy.

Stories in the News:

Individuals living with PH have

secured some great stories in local

and national news outlets. Print

out some of these stories and bring

them to your meeting for members

to discuss. Remind members to

keep their eyes out for mentions of

PH in the news. Who knows, this

may inspire someone in your group

to get another story written about

living with PH!

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This was one of our best meetings, indicated by the fact that people stayed to chat long after the formal part was over.

-Joan Stevenson Lehigh Poconos, Pennsylvania Support Group Leader

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Sample Agendas

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1. Welcome!

2. Housekeeping

3. Confidentiality Statement

4. Announcements

5. Introductions

6. Break into groups of 6 to share

your stories

7. Come back together as a group to

share highlights of the experience

8. Wrap up

9. Reminder of next meeting

Sharing Your StoriesSharing Your StoriesSharing Your StoriesSharing Your Stories

1. Welcome!

2. Housekeeping

3. Confidentiality Statement

4. Announcements

5. Introductions

6. Long-term patient speaker (make

sure to introduce them)

7. Q&A

8. Wrap up

9. Reminder of next meeting

LongLongLongLong----term PH Patientterm PH Patientterm PH Patientterm PH Patient

1. Welcome!

2. Housekeeping

3. Introductions

4. Voting on which movie to watch

5. Watch movie

6. Discussion time, share thoughts

after watching the movie

7. Wrap up

8. Reminder of next meeting

Movie NightMovie NightMovie NightMovie Night

1. Welcome!

2. Introductions

3. Housekeeping

4. Voting on which game or activity to

begin with

5. Explanation of game rules

6. Time for fun and games

7. Wrap up

8. Reminder of next meeting.

Trivia/GamTrivia/GamTrivia/GamTrivia/Game Nighte Nighte Nighte Night

Sample AgendasSample AgendasSample AgendasSample Agendas

It’s always smart to run an organized meeting. Here are some sample agendas you can use.

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It was good to see all the new patients

and old talking with each other about

their journey... All of the attendees

were very excited that they made it to

the support group meeting to get

answers and to see other patients

dealing with PH. Everyone had a great

time and they are looking forward to

our next meeting.

-Kevin Deeb, Burlington, Vermont

PH Support Group Leader

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Resources and

Further Research

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AdditionalAdditionalAdditionalAdditional ResourcesResourcesResourcesResources

1. For our Second Tuesday training in 2011, we discussed fun meetings without a speaker. Watch

our recording and hear suggestions from PHA and support group leaders about simple and easy

meeting ideas. http://bit.ly/SecondTuesFunMeetings

2. We have many useful PH-related DVDs that you can play for your meeting, just make sure that

you have a television or projector to use to play them. Here’s the link to the PHA Store. Take a

look! www.PHAssociation.org/Store

3. Looking for more ideas? Your fellow support group leaders are full of them, and willing to share.

• If you’re on Facebook you can join the Pulmonary Hypertension Support Group Leaders

group and join in on the conversations leaders are having with one another. Email us to

request to be a member: SupportGroups@PHAssociation.org

• Feel free to share ideas or pose questions on our Support Group Leader Yahoo

Group. Contact us to be added to this list.

4. Interested in playing PH Trivia at an upcoming meeting? Here are some sample questions to get

you started. Look through your Survival Guide for even more ideas.

• In 2010, where did PHA hold their International Conference? (A: California)

• True or False? COPD is a condition associated to PH. (A: True)

• A cardiologist is the doctor who specializes in your heart, what is the name of a doctor who

specializes in your lungs? (A: Pulmonologist)

• True or False? Right heart catheterization is the only test that can confirm a definite

diagnosis of PH? (A: True)

• Name one of the main symptoms of PH. (A: Shortness of breath, feeling tired, dizziness,

fainting, swollen ankles and legs, chest pain)

• How many minutes is the walking test that most healthcare providers use to assess the

exercise ability of patients? (A: 6 minutes)

• The right side of the heart pumps blood through the pulmonary artery to which part of the

body? (A: Lungs)

• Before a drug goes on the market it has to be researched and studied. What is the name of

the Government office that approves or denies new treatments? (A: Food and Drug

Administration)

• Which of the following is a word for breathlessness? A. dyspnea B. Eczema C. Vertigo D.

Psoriasis (A: A. dyspnea)

• True or False? In PAH, the right side of the heart tends to become smaller than normal. (A:

False)

Trivia!Trivia!Trivia!Trivia! QuestionsQuestionsQuestionsQuestions

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801 Roeder Road, Suite 1000 Silver Spring, MD 20910

Phone: 301-565-3004 • Fax: 301-565-3994 Patient-to-Patient Support Line:

800-748-7274 www.PHAssociation.org

SupportGroups@PHAssociation.org