Meeting in a Minute: No Speaker? No Problem!

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 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 support, lead or are friends of mine‌ thank you! I don’t think i could do this without you 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?

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.

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.

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.

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.

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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 You’re not alone anymore." anymore -Mary Sisk, Savannah, Georgia PH Support Group Leader

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●●● Activities and Discussion Questions ●●● 9

Sharing 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.

Ask Some Questions • 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?

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Educate with 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.

Leader Words “[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

PHA Movies and Discussion 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 openended 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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Comedy or Game Night

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, nonmedically 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!

Leader Words “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

Fun Games • • • • •

Apples to Apples Taboo Pictionary Scattergories Charades

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.

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Apples to Apples

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Apples to Apples

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Fun Movies • • • • •

Little Rascals Patch Adams Cheaper by the Dozen The Princess Bride Toy Story

PH 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 group as little little as you can about yourself, and as much as you can about everyone else.

-Doug Taylor Midlands, South Carolina PH Support Group Leader

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●●● Speaker Suggestions ●●● 15

LongLong-term Survivors as Speakers Although most of these suggestions are for meetings in which you do not have a speaker, having a longterm 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

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

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.

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Leader 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: National Updates from PHA:

Stories in the News:

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.

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!

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.

Leader Words “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

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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 ●●● 19

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

Sharing Your Stories

LongLong-term PH Patient

1.

2.

3.

4.

5.

6.

Welcome!

Housekeeping Confidentiality Statement Announcements Introductions 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

1.

2.

3.

4.

5.

6.

Welcome!

Housekeeping Confidentiality Statement Announcements Introductions Long-term patient speaker (make sure to introduce them) 7. Q&A 8. Wrap up 9. Reminder of next meeting

Trivia/Game Trivia/Game Night 1.

2.

3.

4.

5.

6.

7.

8.

Movie Night

Welcome!

Introductions Housekeeping Voting on which game or activity to begin with Explanation of game rules Time for fun and games Wrap up Reminder of next meeting.

1.

2.

3.

4.

5.

6.

Welcome!

Housekeeping Introductions Voting on which movie to watch Watch movie Discussion time, share thoughts after watching the movie 7. Wrap up 8. Reminder of next meeting

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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 ●●● 22

Additional Resources 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.

Trivia! Questions • • • • • • • • • •

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) 23

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

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