Stroke Support Group: Strategies and Lessons

Aug 26, 2023

Stroke Support Group: Strategies and Lessons

Support groups can help survivors and caregivers have meaningful lives after a stroke. This webinar aims to highlight ways to start a new support group, keep a group engaged and growing and highlight best practices. We will also share helpful resources for group leaders from the American Stroke Association®.

Content

7.98 -> - Happy Thursday, everyone, and welcome to today's webinar,

10.807 -> "Stroke Support Groups: Strategies and Lessons."

13.65 -> My name's Gino Mollica, and I'm program manager

15.6 -> for Get With The Guidelines' AFib and Stroke registries.

18.48 -> Additionally, I work with our team

20.16 -> on Mission: Lifeline EMS.

22.35 -> Before we get started,

23.34 -> I'd like to go over a few items

24.9 -> so you know how to participate in today's event.

27.87 -> This webinar is being recorded

29.55 -> and will be sent via email within 24 hours.

33.12 -> There are no continuing educations

35.07 -> associated with this webinar,

36.81 -> but you may access a certificate of completion

39.51 -> in your follow-up email at the conclusion of today's event.

43.86 -> You will have the opportunity to submit text questions

46.77 -> by typing them into your questions pane

48.84 -> of your control panel.

50.37 -> You may send in your questions

51.72 -> at any time during the presentation.

53.82 -> We'll collect these and address them

55.26 -> during the panel sessions throughout today's presentation.

59.01 -> If you experience any technical issues

61.2 -> during the presentation,

62.49 -> most can be resolved by refreshing your browser.

65.43 -> If your issue is not resolved by refreshing the browser,

68.94 -> please refer to your GoToWebinar customer service team email

73.2 -> located in your confirmation email.

78.18 -> If you're looking for the slide deck,

80.1 -> that can be found in your handout section

82.2 -> of today's presentation.

87.21 -> Before we get started,

88.043 -> we just wanted to highlight that we are celebrating 20 years

91.08 -> of Get With The Guidelines Stroke,

92.94 -> and we're proud that this program has been working

94.98 -> to continue hospitals

96.45 -> to improve outcomes for patients.

98.82 -> Our research teams are examining programs' influence

101.46 -> on stroke patient practices

103.8 -> and will be debuting that later next year.

108.6 -> We have three panelists for our webinar today,

110.67 -> and I'd like to introduce them now.

112.5 -> We're so excited to have Jeanie Luciano here

114.9 -> from the American Heart Association.

116.94 -> Jeanie's our senior manager for quality

118.77 -> for stroke and atrial fibrillation,

120.72 -> and she's been here since May of 2019.

123.66 -> Previously, she was the co-director

125.61 -> of the Comprehensive Stroke Center

127.26 -> and certified registered nurse practitioner

129.48 -> at the Hospital of University of Pennsylvania,

131.85 -> where she worked in various roles

133.8 -> in the neurology and neurosurgery departments.

137.46 -> She joined the stroke team in 1995

138.773 -> and was a coordinator on approximately

141.27 -> 100 acute stroke and stroke prevention studies.

144.66 -> She's been a certified neuroscience registered nurse

147.09 -> since 1990

148.35 -> and certified registered stroke nurse since 2013,

151.59 -> both by the American Board of Neuroscience Nurses.

155.25 -> Jeanie's received numerous local and national awards,

157.83 -> including the American Heart Association

159.78 -> Distinguished Achievement Award,

161.82 -> the AHA Lifetime Achievement Award,

164.01 -> and the AANN Advanced Practice Nurse of the Year Award

168.03 -> at the University Hospital of Pennsylvania.

171.51 -> She's lectured locally and nationally

173.49 -> on acute stroke management and stroke teams,

176.07 -> including stroke center development.

177.96 -> Jeanie was appointed

178.8 -> as a fellow of the American Heart Association since 2003.

182.94 -> In 2012, she was selected

184.47 -> by the American Board of Neuroscience Nurses

186.69 -> to the inaugural development committee

188.37 -> for the Stroke Nurse Certification Examination

191.4 -> and is currently the chair of their committee.

194.4 -> Next, I'd like to introduce Anna Taylor.

196.77 -> Anna currently serves as our national senior program lead

199.65 -> for the American Stroke Association,

201.81 -> a division of the American Heart Association.

204.36 -> The American Stroke Association

205.65 -> is devoted to saving people from stroke,

207.72 -> the number two cause of death in the world

210.06 -> and leading cause of serious disability.

212.97 -> We team with millions of volunteers

214.74 -> to fund innovative research,

216.27 -> fight for stronger public health policies,

218.4 -> and provide lifesaving tools and informations

220.26 -> to prevent stroke.

221.55 -> The Dallas-based association was created in 1998

224.73 -> and is a division of the Heart Association.

227.52 -> Anna joined AHA and ASA in August of 2018.

232.05 -> Prior to joining the organization,

233.64 -> Anna worked at the National Stroke Association

235.95 -> for over six years,

237.27 -> and prior to that, nearly 12 years in public health.

240.87 -> Anna holds her Bachelor of Science degree in microbiology

243.3 -> and a Master of Science degree

244.44 -> in community health education.

247.05 -> Last but not least, I'd like to introduce Wanda Jackson.

250.02 -> Wanda is the outpatient care coordinator

252.06 -> at Sarasota Memorial Healthcare System.

254.67 -> She's been there since 2008,

256.44 -> when she was hired as a supervisor of patient information

259.11 -> for the emergency care center.

260.94 -> She then went on to supervise

262.44 -> the newly-established patient assistance program,

265.35 -> where uninsured patients were helped

267.51 -> by either finding a payer source

269.94 -> or completion application for financial assistance.

275.13 -> Sarasota Memorial Health Center

276.45 -> then created a much-needed position

278.43 -> of outpatient care coordinator, where,

280.98 -> which would not only help patients navigate

283.02 -> the ever-growing outpatient services

285.06 -> provided by the hospital,

286.44 -> but also helped them connect the dots

288 -> from inpatient to outpatient.

290.19 -> Currently, she is the clinic coordinator,

293.46 -> facilitates a stroke wellness club, a stroke support group,

297.54 -> cooking class for stroke survivors,

299.79 -> Parkinson's wellness club and support groups,

302.94 -> mobility challenged group,

304.71 -> outpatient cardiac and pulmonary rehabilitation navigator,

308.37 -> as well as speaking at numerous events

309.99 -> and other services as needed.

312.21 -> Wanda move to Sarasota in 1988

314.49 -> and calls the beautiful west coast of Florida home.

317.04 -> She's been married to her husband for 43 years,

319.437 -> and they have three beautiful, married,

321.12 -> and self-sufficient children.

322.89 -> More importantly,

323.723 -> she is happy to show you photos

325.35 -> of her six sweet, smart, and amazing grandchildren.

329.37 -> Thank you all for being here today.

333.63 -> Our objectives for today

334.59 -> are to develop an understanding

335.79 -> of what stroke support groups are,

338.16 -> identify the best practices within them,

340.59 -> and be able to highlight new ways

342.45 -> in which stroke support groups

344.25 -> and retention of keeping groups engaged.

347.64 -> Additionally, Anna's gonna share, at the very end,

349.38 -> some very, very helpful resources

351.15 -> from the American Stroke Association

353.25 -> and ways to navigate for group leaders.

356.94 -> I'd now like to kick it over to Jeanie Luciano

359.28 -> to begin our presentation.

362.19 -> - [Jeanie] Thank you, Gino.

363.727 -> We'll go to the next slide.

366.72 -> So, I have no disclosures,

368.25 -> except for the fact that this is a topic

370.26 -> I'm really passionate about,

371.88 -> and I will disclose that, I think,

374.73 -> as a person who helped to run and coordinate

378.24 -> stroke support groups,

379.65 -> you get so much more out of it than your patients even do.

383.04 -> So, I wanna start off with that thought.

386.4 -> So, happy Nurses Week, folks.

388.29 -> And I love this, because, as a nurse,

390.63 -> you know that every day

391.68 -> you will touch a life or a life will touch yours.

394.11 -> So, I think this is really key,

396.39 -> and what other professions can we get to say that in?

401.4 -> So, I'm gonna talk to you about getting started,

403.89 -> and hopefully the trajectory of this whole talk

406.8 -> will help you get to the point

408.45 -> where you can either start a support group

410.94 -> or to really enhance the programs that you have.

417.18 -> So, you wanna get organized.

418.8 -> So, you have to identify your key person or two.

421.53 -> If you're one of our many stroke coordinators out there,

424.86 -> you can probably just raise your hand now,

426.63 -> because that will likely be you,

428.97 -> but it doesn't have to be.

430.44 -> You can have a leader of a stroke support group

433.2 -> who could be a social worker, a discharge planner,

436.56 -> a therapist of any sort.

438.57 -> Even some centers have a really, you know,

442.65 -> engaged stroke survivor lead their support group.

446.97 -> You should have some advisors or group facilitators,

450.6 -> and this can vary depending upon your topic.

453.27 -> It could be a therapist or a social worker,

455.19 -> somebody really familiar

456.72 -> with the impact of stroke on families.

460.02 -> A sponsoring agency,

461.58 -> and I kind of use this, oh, I guess a little loosely,

465.21 -> because it really doesn't have to cost you a lot of money

468.39 -> to have a stroke support group.

470.25 -> A sponsorship can be as simple as

472.02 -> providing space once a month,

474.63 -> or as involved as producing a newsletter

476.94 -> or providing transportation.

479.43 -> So, you know,

481.01 -> it doesn't cost a lot to buy cookies and beverages, but.

486.54 -> And a planning committee.

488.13 -> Support and input from others are really crucial.

490.71 -> It really helps you to look at the big picture

492.78 -> and come up with some new and inventive ideas.

495.96 -> Your planning committee should represent

498.21 -> a spectrum of survivors, caregivers,

500.61 -> different types of therapists.

502.29 -> I like to engage stroke fellows and residents

506.19 -> in this process,

507.023 -> because I think they learn so much

510 -> from our support group members.

514.08 -> Next slide, Gino.

515.07 -> Thank you.

515.903 -> So, specialized groups.

517.53 -> This first specialized group is the younger survivors,

520.44 -> and this is the one near and dear to my heart.

522.81 -> We had a young adult stroke support group

525.69 -> when I was working at Penn,

527.31 -> was actually started by a 19-year-old Penn student

530.25 -> who is still, to this day, a friend of mine.

533.28 -> She was 19 years old when she had an acute stroke

536.37 -> and wasn't finding the support in community support groups

540.24 -> that she felt that she needed.

542.73 -> Interestingly enough,

543.96 -> I once got a call from a gentleman who was 83, and he said,

547.567 -> "Well, how young's young?"

549.81 -> And I said, "Well, nobody's too old is the answer to that."

552.807 -> And he really brought, he said,

554.317 -> "I think I can really bring a lot to the group,"

556.44 -> and he really did.

558.27 -> People with aphasia.

559.65 -> So, people with aphasia,

562.41 -> with special communication challenges,

564.66 -> some of them even using communication devices,

567.72 -> might be challenged in a regular support group.

570.63 -> I often think it's difficult

573.99 -> for patients who are dealing with aphasia

576.51 -> to be able to get that opportunity to speak up in a group.

581.04 -> But you can either incorporate them into your regular group

584.82 -> and be aware of the challenges that they are dealing with

588.42 -> or have a separate aphasia support group.

592.11 -> So, caregivers.

593.61 -> The support group that I participated with,

598.53 -> we used to include the caregivers with our stroke survivors,

603.54 -> and, but many sites have seen the benefit

606.87 -> across all disease processes, not just stroke,

609.78 -> to give a separate forum to caregivers

613.05 -> who may not have a comfort level

615.15 -> with talking about their person they're caring for

621.09 -> in front of them.

622.26 -> So, you know, it was interesting,

625.89 -> we had caregivers who would show up without the other,

629.16 -> the person that they were taking care of.

631.86 -> One gentleman came for an entire two years.

634.89 -> He came every month,

637.17 -> talked about his daughter, who was a stroke survivor, and,

640.5 -> but she never felt comfortable coming,

642.42 -> and then she finally came

643.62 -> and was this vibrant, wonderful addition to our group.

647.79 -> And then the virtual option,

649.17 -> and I'd love to get through one webinar

651.24 -> where we don't have to mention Covid,

652.86 -> but Covid, I think, really brought this

656.466 -> to most of our attention.

658.77 -> And additionally, a lot of our stroke survivors in it

661.98 -> had transportation and mobility issues.

664.41 -> They can depend upon the kind of facility you work at.

667.41 -> You can have a wide geographic disbursement

671.25 -> of where your patients are coming from.

673.74 -> So, virtual options are also a very good option.

678.51 -> I love that Wanda, who you're gonna be hearing from later,

681.54 -> told us that she had to develop a one-pager

684.96 -> on how to use Zoom

686.22 -> for her virtual people.

691.59 -> So, stroke support group development.

695.28 -> So, who?

696.113 -> Who's gonna run it?

697.35 -> So, we already talked about that.

699.18 -> So, who are you gonna invite to it,

700.68 -> and how are you gonna get that information to them?

703.17 -> So, and a lot of what you hear me say

706.08 -> comes from my own experiences,

709.71 -> but we used to give the information

711.51 -> about our stroke support groups

712.92 -> to our patients who were inpatients,

715.89 -> but we also used to give it to patients

718.17 -> in our outpatient clinic.

721.02 -> I find that so many patients are inundated with information

724.68 -> in the inpatient setting

726.57 -> that they don't really absorb it very well.

733.98 -> And we also,

736.17 -> I'm sorry, Gino, there,

737.73 -> you can keep that there.

739.8 -> We also were, because we had a specialty group,

743.46 -> we attracted people from a wide geographic area,

747.06 -> and a lot of patients

747.96 -> who weren't even treated at our facility

750.06 -> would hear about our group

751.68 -> and come because they had special needs.

753.45 -> They thought it would meet their needs.

757.68 -> When should you have it?

759.93 -> With our support group,

761.37 -> we used to have it at 6:30 PM, in the evening.

765.87 -> We tried doing it earlier in the day,

768.36 -> and I have to honestly say,

769.44 -> that was probably for the benefit of the staff,

771.45 -> not the patients as much,

773.19 -> but we were also concerned about people traveling at night

776.58 -> and things like that,

777.78 -> and it just didn't work out,

779.31 -> 'cause a lot of people needed transportation

781.59 -> or somebody to drop them off

783.63 -> who might be at work during the day.

785.4 -> So, we kind of hung with that 6:30 PM timeframe.

790.41 -> Where should you have it?

792.45 -> You know, space is a commodity in hospitals, right?

795.63 -> We, at one point in time,

796.62 -> used to have it in the hotel across from the hospital,

799.98 -> and then we decided that,

801.54 -> we had an inpatient rehab center,

803.76 -> that we would use the conference room in the rehab center

806.73 -> and we would get a list beforehand,

808.71 -> even though a lot of people would be coming from outside,

812.22 -> we would get a list of the inpatients at that time,

816.87 -> and go to their room,

818.97 -> and wheel them down, if they needed to,

820.98 -> to the conference room.

822.36 -> So, just make sure that wherever you have it,

824.7 -> that you have handicap accessibility there.

828.09 -> And how are you gonna communicate it?

830.34 -> Some of the support groups have Facebook pages,

832.86 -> some of them, you know, use email,

835.56 -> some of them use good old snail mail,

838.17 -> but communication's really important.

840.63 -> You might run into issues where you have snow

843.24 -> and you don't want people coming out with snow.

844.86 -> That was always our challenge.

846.06 -> Oh my gosh, it's supposed to be icy tonight.

848.4 -> We don't want these people traveling.

850.38 -> So, you know, really,

852 -> communication is really a key, isn't it?

854.28 -> The key to basically everything.

856.29 -> And then have some mutually agreed upon rules.

859.32 -> This is something that was kind of important to our group.

862.89 -> We want to, you know,

863.91 -> make sure that everybody would have an opportunity to speak,

868.5 -> and sometimes, that would take some policing.

871.02 -> You would have people who could speak

873.06 -> for the entire two hours of the support group,

875.64 -> and, you know, other people

876.96 -> who never felt comfortable speaking up.

881.22 -> Our early support group people decided

885.21 -> that they were not gonna consider themselves stroke victims,

889.47 -> they were survivors.

890.55 -> So, that was sort of their mantra.

893.047 -> "We are stroke survivors."

894.6 -> So, a new person would come to the group,

896.97 -> and they'd say,

898.867 -> "Oh, I'm a stroke victim.

900.72 -> I had my stroke at age 25, this many years ago."

904.29 -> And they'd say,

905.123 -> "You're not a victim, you're a survivor.

906.84 -> You're here."

907.77 -> So, it was really putting that positive spin on it.

911.1 -> The other thing that I think is a good rule overall

913.8 -> is we tried not to talk about any,

918.39 -> though we would talk about medical topics,

920.55 -> we would not talk about specifics

922.56 -> of the stroke survivor's own case.

926.76 -> We were not there to be their medical consult.

929.16 -> We didn't have the right information in front of us

931.32 -> to make any kind of decision.

933.51 -> So, we would not talk about their specific medical issues.

938.61 -> Next slide, please.

941.19 -> So, successful support group meetings.

944.49 -> You can have education,

946.38 -> expert practitioners can provide pertinent information.

949.98 -> We used to have a occupational therapist,

953.07 -> that we'd have her come in once a year

954.72 -> and do, like, a show and tell of, you know, devices.

960 -> What's the newest, you know, grabber that they could use,

963.42 -> and that kind of thing.

965.88 -> Sorry, I just, my screen just got a little messed up here.

970.26 -> We would have,

973.53 -> we had pet therapy come in,

975.75 -> we had Sex After Stroke

977.49 -> with our young adult stroke support group.

979.68 -> That was like a really,

981.51 -> an identified issue for them.

985.29 -> That was one of our biggest-attended things.

989.07 -> And that's the other thing you need to understand,

991.17 -> that sometimes you'd have a support group

994.71 -> and you didn't always know who was coming.

995.94 -> Sometimes you would show up

997.56 -> and you'd have two or three people there.

1000.77 -> But you know what?

1001.79 -> If those two or three people needed that time,

1004.49 -> that was just as important as if you had 50 people there.

1007.94 -> Our Sex After Stroke talk,

1009.35 -> we had over 40 people show up for that event,

1013.31 -> and we had people that were coming repeatedly

1016.58 -> long after their stroke,

1019.04 -> many, many years.

1020.96 -> Recognition, you wanna really acknowledge members

1024.02 -> and their incremental victories.

1026.45 -> Anniversaries, achievements,

1029.03 -> any changes in health status.

1032.15 -> We had weddings, we had people who got married,

1034.46 -> we had babies that were born to our stroke support group.

1037.46 -> And then, on the flip side, we had deaths.

1039.53 -> We had recurrent strokes.

1043.19 -> We lost a very active member of our group

1045.92 -> who was a young guy who survived four strokes

1048.98 -> by the time he was 20 years old

1051.2 -> and then ended up being killed as a pedestrian

1054.14 -> who was hit by a drunk driver.

1055.91 -> So, his parents, who had never met us,

1060.53 -> because he used to come independently

1062.24 -> and sometimes with his sister,

1063.26 -> but his parents, who never met us,

1065.6 -> came to the support group

1067.85 -> to meet everybody and talk to them,

1069.647 -> and it was sort of some grief counseling there, for us.

1073.79 -> Social, you wanna make time for members to mingle,

1076.73 -> and this is really important.

1078.98 -> It's interesting that,

1081.5 -> we always wanted to try to have topics,

1084.35 -> but honestly, they're,

1086.12 -> these people got so much from each other during the time.

1090.92 -> Like, just knowing that there was somebody else

1093.11 -> in the same boat as them.

1095.45 -> So, food is always important, you know.

1097.58 -> If you feed them, they will come, but, you know,

1100.76 -> I'm not talking, you know, dinners,

1102.86 -> although we did used to have a holiday celebration,

1105.2 -> where we'd have a bigger celebration.

1107.81 -> But we'd get cookies, and, you know,

1109.91 -> we had one guy we knew, one girl's father,

1112.46 -> he was a oatmeal raisin cookie guy, and he,

1114.89 -> so, that was always a joke,

1117.44 -> internal joke.

1119.54 -> You wanna have leadership development, and make sure,

1122.33 -> this is almost like a succession plan,

1124.16 -> as somebody who has left an institution.

1126.44 -> So, you wanna make sure that you have a plan for, like,

1130.1 -> if you're not gonna be there,

1131.78 -> that who is gonna run the support group?

1135.32 -> You want emotional supports.

1137.45 -> Groups that foster emotional support through a buddy system,

1141.2 -> welcoming committee, or peer visitor programs,

1144.08 -> have greater impact on their members.

1146.66 -> You want information swapping.

1148.58 -> Nobody knows everything there is to know about stroke,

1150.95 -> but boy, do these people learn how to share

1153.05 -> their tricks of the trade.

1154.79 -> My favorite story is this one lady Julie,

1157.4 -> and we had a young girl,

1159.62 -> it was her first time at our support group.

1161.3 -> She was only in her early 30s

1163.67 -> and she had pretty significant aphasia

1166.16 -> and pseudobulbar affect disorder,

1168.86 -> and she was struggling with crying,

1171.14 -> and she was struggling with getting words out,

1173.45 -> and Julie said to her,

1174.327 -> "Hey, you wanna know a trick?

1176.63 -> If you feel like you're gonna cry and you don't wanna cry,

1180.02 -> think about somebody you hate

1182.15 -> and you won't be able to cry."

1184.37 -> So, this girl said,

1185.547 -> "Well, I don't really hate anybody."

1187.43 -> And she said, "Well I'll give you my person to hate."

1189.35 -> So, Julie shared her person she hated

1191.57 -> with our other new person.

1194.36 -> And then resource networking.

1197.12 -> It's really, they're really a valuable group.

1199.97 -> Once again, they changed my practice.

1202.22 -> They changed information

1203.72 -> I would bring back to our team and say,

1205.767 -> "Hey, you know, this came up at our support group.

1208.49 -> We are not doing this well.

1210.02 -> We need to do this better."

1212.6 -> But they also became really active in the community.

1217.25 -> They would show up at our screenings that we would do,

1221.84 -> and people would walk by and say,

1223.167 -> "Oh, I don't need to know anything about stroke.

1225.17 -> I'm only 30 years old."

1227 -> And they'd say, "Yeah?

1227.833 -> Well, you know, I was 24 when I had my stroke."

1230.39 -> So, kind of changes the spin.

1232.46 -> They were active at lobby days

1234.17 -> and even met with some of the local senators with us.

1237.95 -> Next slide please, Gino.

1240.98 -> You have to remember your why.

1244.76 -> So, my screen's here.

1247.91 -> So, this is something we use

1251.39 -> at the American Heart Association.

1253.52 -> So, this is,

1255.47 -> one of our support groups, and sometimes, you know,

1258.02 -> the day would be coming up

1259.16 -> and we wouldn't have a speaker,

1261.11 -> and I would, you know, say, you know,

1265.557 -> "What are we gonna do for our support group?"

1267.29 -> Well, one time we decided

1269.09 -> that we were going to have everybody bring something

1272.42 -> that they were proud about,

1274.79 -> which, it ended up being such a wonderful topic.

1278.15 -> So, this is Fran.

1279.38 -> Fran was only in her 30s when she had her first stroke.

1283.01 -> She was the mother of four children.

1284.96 -> Once, we had a family counselor come speak to us,

1289.13 -> and Fran, it was touching to me that she said,

1291.717 -> "When I had my stroke, I lost all my titles.

1296 -> I used to be somebody's mother, and caregiver,

1298.64 -> and lover, and best friend,

1300.74 -> and I feel like I've lost all my titles,"

1302.66 -> which is really, really something to hear.

1305.66 -> But when we asked for the why,

1307.94 -> we found out that Fran had had another stroke,

1310.67 -> and she sent us this message.

1314.18 -> She said, "I cannot join the group this week,

1316.01 -> but wanted to share why I am proud.

1318.56 -> I am proud of the little wins,

1320.15 -> like being able to keep my lips closed

1322.46 -> while I swallow a spoonful pudding,

1324.691 -> (clears throat) excuse me,

1327.29 -> and being able to successfully get my ideas

1329.87 -> from my brain to others' ears.

1333.02 -> I am proud of my resilience.

1334.7 -> I am proud of us,

1335.9 -> of all of you who work to make things better for ourselves,

1338.96 -> yourselves and others.

1340.61 -> Love to the group.

1341.48 -> See you next month, Fran."

1343.64 -> So, you know, there's a woman of resilience, right there.

1349.19 -> The next slide.

1350.48 -> So, I love this,

1351.89 -> and this is just one more thing I want to share with you.

1356.15 -> So this is,

1356.983 -> and this is not sharing any protected information.

1361.79 -> This is a physician who has been very public

1364.64 -> about his stroke,

1365.75 -> and I know this physician,

1367.67 -> and on an interview,

1368.87 -> they said to him,

1370.107 -> "You have had so much loss on many levels.

1372.29 -> Physically, you might not operate again.

1374.57 -> You have said you're going to have to reinvent yourself."

1377.66 -> And he brought up this concept.

1379.37 -> He said, "There's a Japanese concept

1381.5 -> that if you're broken and you get put back together,

1383.72 -> you get put back together stronger and better.

1386.6 -> And there's an artist who interpreted that

1388.61 -> by taking her pottery pieces that are very beautiful

1391.19 -> and she breaks them purposely

1392.51 -> and puts them back together using gold leaf

1395.12 -> and creates a much more beautiful piece

1397.01 -> of pottery and artwork.

1398.69 -> This has broken me, and I'm dealing with loss,

1401.03 -> but I'm actually like, 'You know what?

1403.16 -> I'm going to be better than I was.

1405.59 -> Maybe I won't be a better surgeon,

1408.08 -> but I will be better in some ways.'

1411.56 -> And that's really what gives me the strength to push on."

1414.53 -> So, continue,

1417.35 -> you can go to the next slide, Gino.

1419.27 -> You can continue to be inspired by your patients, as I am,

1422.75 -> and I am inspired by all of you,

1424.46 -> who have taken the time to be here today, with us today,

1427.64 -> for American Stroke Month.

1429.77 -> I am going to hand off to my colleague, Wanda Jackson.

1436.55 -> - [Wanda] Hey.

1439.49 -> I am very thrilled to be with you today.

1441.62 -> I have no disclosures.

1443.54 -> This has all come from many years of experience,

1446.87 -> and groups change and grow,

1448.88 -> and so we are going to just share

1450.38 -> some of what we've learned with you.

1452.72 -> I am from Sarasota Memorial Healthcare

1454.82 -> in Sarasota, Florida,

1455.93 -> where it is hot and sticky here today.

1459.32 -> And I host many different types of support group,

1462.47 -> and I think one of the things

1464.12 -> is keeping that online calendar.

1466.04 -> In any area like ours,

1467.6 -> it's very important

1469.22 -> that you have that one person who keeps it up to date.

1472.73 -> So, I work with a lot of our neuro,

1474.5 -> with people with Parkinson's, stroke,

1477.11 -> muscular dystrophy, ALS.

1478.76 -> We work with our caregivers.

1480.68 -> In the stroke side of things,

1482.24 -> we do a six-week free cooking class for stroke survivors.

1486.35 -> We allow a plus one to join us.

1489.71 -> We all chop, cook, stir, and eat together,

1492.86 -> and we do that class twice yearly.

1495.77 -> We do offer it, as well, in Spanish.

1498.5 -> We, besides our support groups

1500.48 -> for, like, Parkinson's and stroke,

1502.46 -> we do co-groups that are called wellness club.

1505.787 -> So, our stroke wellness club,

1508.07 -> this is where we put the biggest effort

1510.2 -> for our speakers and our education times,

1513.59 -> but I'll share that we also do some education at support.

1518.66 -> I'm also on the advisory group for our HealthFit gym.

1521.51 -> It's a medically-integrated gym that's owned,

1524 -> we call it powered by Sarasota Memorial.

1526.85 -> And we have one class,

1528.35 -> well, we have a 12 to 1 class

1531.05 -> and a 1 to 2:00 class

1532.88 -> on every Monday, Wednesday, Friday

1534.5 -> called Fitness Forward,

1536.51 -> which is for our stroke survivors.

1538.61 -> We also do specific classes for other issues

1541.37 -> like Parkinson's, cardiac, osteoporosis, cancer, and more.

1547.4 -> I love speaking to our groups,

1548.93 -> I love sharing some of the information and meeting people,

1552.35 -> and a lot of what we do,

1554.06 -> whether it's promoting stroke,

1556.22 -> or if it's promoting rehab therapies,

1558.89 -> like vision rehab, driver's evaluation and rehabilitation,

1563.87 -> or hand therapy, or golf therapy,

1566.21 -> a lot of this marketing is done

1569.78 -> at the speaking events

1571.4 -> and our wellness clubs, as well.

1573.5 -> So, we love working with our community and educating them,

1577.61 -> as well as offering the support that they need.

1582.65 -> Next slide.

1586.16 -> So, examples of a successful group is what they asked me,

1589.43 -> and I said,

1594.627 -> "Well, one where people attend."

1596.6 -> It's not a really great group

1597.82 -> if you don't have anybody there,

1599.21 -> but they're gonna come when they feel comfortable

1601.46 -> to share openly and honestly.

1604.73 -> We talked about the fact of some of 'em crying,

1606.98 -> there's a lot of emotions,

1608.24 -> especially those where this is all very new to them.

1611.45 -> Our solution for our criers is I keep an Altoids box,

1615.11 -> those strong mints,

1616.58 -> and if you really can't control it,

1618.32 -> we pass the Altoids around

1619.73 -> and then we laugh about who took the Altoids.

1622.16 -> So, we want these people to be able to do these things

1625.61 -> that they're needing to say, the questions they need to ask.

1629.39 -> And I think Jeanie made a great point,

1631.49 -> and we don't talk about the clinical side,

1632.837 -> and the medication.

1633.86 -> There's just a lot to each person,

1635.21 -> and they're very different.

1636.62 -> But we do answer questions about bathrooms,

1638.96 -> and how do I get in and out of the boat,

1640.85 -> and what kind of golf cart are you using

1643.07 -> now that your left side is weak?

1644.72 -> And we have a adaptive golf group, even.

1648.2 -> So we talk, let 'em talk about anything.

1653.3 -> A successful group is one that's facilitated in such a way

1656.9 -> that everyone who wants to gets a chance to share.

1660.53 -> They're all able to say pass,

1662.3 -> and then we come back to 'em,

1663.41 -> see if they wanna pass again

1665.27 -> or if they're ready to share that second time 'round.

1668.21 -> It does take some skill and practice,

1671.18 -> because sometimes you feel like

1672.83 -> you're cutting someone off,

1675.26 -> or not allowing them to go on and on,

1678.98 -> but everyone needs to feel

1681.38 -> that they're going to get their chance to talk.

1684.74 -> And timing is everything.

1686.12 -> For us, I know Jeanie mentioned that 6:00,

1688.73 -> with transportation and evening hours.

1692.87 -> Our people, we got a lot of retired community,

1695.69 -> and our golden hour that everyone wants is 10:00 AM.

1699.35 -> It's not too early.

1700.34 -> They've had a chance to get up and get moving.

1702.53 -> It's not too late, before lunch, and naps,

1704.75 -> and other activities.

1706.28 -> Everyone likes that time.

1708.32 -> However, there are groups with different dynamics and needs,

1711.59 -> and so,

1712.76 -> and as the group changes,

1714.05 -> that time, location, can change as well.

1717.65 -> Know your audience.

1719.36 -> But I will say,

1720.23 -> if you've advertised your group from 10 to 11:30,

1723.38 -> or 12 to 1, or 12 to 1:30,

1726.08 -> you need to stick to the time.

1728.21 -> Even if you have the time to stay,

1730.55 -> you need to make a break and say,

1732.72 -> "Okay, it's 1:30.

1733.97 -> I know that's the time we advertised to,

1736.73 -> so feel free to grab your stuff and get going

1739.28 -> if you need to move, get going."

1741.17 -> So we wanna stick to that timeframe.

1743.12 -> We don't wanna feel like they've gotten locked in

1745.31 -> and can't get out.

1749.63 -> We do set some ground rules,

1751.61 -> and I don't just do this when we have new people,

1755.99 -> I kind of go over the basics real quick every group,

1759.32 -> because sometimes, the more you get to know each other,

1763.28 -> and the more like family you start to chat,

1767.51 -> the ground rules can really get broken quickly.

1770.427 -> "It doesn't mean me, you don't mean that for me."

1772.7 -> And yes, I do mean that for you.

1774.95 -> So, what's shared here stays here.

1777.65 -> We don't go out

1778.483 -> and tell everything that we've learned about everybody

1780.83 -> to everybody who wasn't in the group.

1783.83 -> I do ask them to briefly state their first name,

1787.7 -> tell us when your stroke occurred,

1790.01 -> what is your current struggle?

1792.95 -> And if they have a couple of them, just give me one,

1795.83 -> if we can, we'll come back to you,

1798.71 -> because if you don't control the one talker,

1801.02 -> you're gonna lose the rest of the group.

1803.48 -> Tell us, I always like to end with

1805.43 -> tell us where you've seen improvement,

1807.5 -> be it ever so small.

1809.24 -> Because you like to see that.

1810.8 -> And if you don't stop,

1812.03 -> especially if a stroke's been a year ago,

1815.03 -> and acknowledge that improvement, ever so small,

1819.29 -> sometimes they forget to even notice

1821.72 -> and see that they're making improvement,

1823.7 -> and we want to encourage that.

1825.59 -> I always tell them, you know,

1826.587 -> "We can teach old dogs new tricks.

1829.19 -> Sometimes it just takes us a little longer to learn that."

1832.7 -> We do open up that discussion to any topic

1835.31 -> as it relates to your stroke and your life.

1837.74 -> And again, the people walking this walk and struggling

1841.76 -> are the ones that can really give you some good insight,

1845.12 -> perspective, and even ideas on how to handle something.

1849.17 -> I do provide a topic handout.

1852.47 -> I will say, I get a lot of these

1854.57 -> off of the American Stroke Association websites,

1857.96 -> and I'll put it on a Word document

1859.67 -> and print out some copies.

1861.89 -> Every once in a while,

1863.15 -> we have a group that's not big into talking,

1866.42 -> and maybe we'll just get the ice broken

1868.91 -> by going over a couple of points on that handout

1871.49 -> or asking a question.

1873.14 -> More often than not, it's just a great educational handout,

1877.28 -> so they feel like they went home

1879.44 -> with some sort of new information.

1887.63 -> Strategies and tactics.

1889.31 -> So, here we go.

1891.2 -> Don't be afraid to mix it up,

1894.23 -> because we've been doing our groups for a long, long time,

1897.77 -> and if a support group meets every month,

1900.11 -> year after year,

1901.37 -> I hate to say it,

1902.51 -> but sometimes it can get boring

1904.34 -> or you can get on that slide where it's all depressing.

1907.4 -> So, I do try to mix it up, you know,

1910.07 -> for the holidays, to bring in special food,

1913.16 -> even something as a table decoration.

1916.25 -> They come in and they just feel like they're important

1919.01 -> and you made extra effort.

1921.26 -> We used to do coffee and cookies all the time.

1925.28 -> Now, it's hit or miss, but we do it occasionally.

1928.82 -> We try to celebrate all the birthdays

1930.53 -> the first of the month,

1931.49 -> and so we'll bring in

1932.323 -> a plate of cookies or coffee that time,

1934.55 -> but it does not have to be every single support group.

1938.81 -> Sometimes I bring in prizes, or gifts,

1941.03 -> or appreciation for something.

1943.31 -> Sometimes after a session,

1944.81 -> and I'll tell them in their email,

1946.76 -> that we're gonna have a sponsor,

1948.29 -> like the mobility vans that are in the parking lot,

1951.59 -> or we have the SCAT Plus bus system.

1955.64 -> Sometimes, they bring it

1956.69 -> so people can see what one of those vans look like

1959.9 -> if they need help.

1961.04 -> So, we'll bring those in just as extra education,

1965.63 -> mixing it up.

1967.58 -> I think it's really important to show them how much you care

1971.66 -> and that you're always excited to see them.

1973.73 -> And I call it the "Cheers" moment,

1976.25 -> where you greet them by name.

1979.28 -> Use name tags,

1980.66 -> because it's sometimes, as you get going,

1982.82 -> names just slip past you.

1985.61 -> Remember what they've told you before,

1987.83 -> and I have a sign-in sheet,

1989.63 -> and when I pick up my sign-in sheet

1991.61 -> at the end of a support group,

1993.95 -> that's only for me at that point,

1995.78 -> and I will cheat and write down

1997.55 -> little tidbits of their life,

1999.74 -> so next month, when they come in,

2001.93 -> I can say something to 'em, like,

2004.067 -> "Hey, I saw your Yankees won last night,"

2006.94 -> or "How did your granddaughter do in softball tournament?"

2010.18 -> They love that "Cheers" moment,

2012.04 -> and remember the old "Cheers" TV show?

2014.89 -> And when Norm comes in, everyone says, "Norm!"

2018.1 -> It's that moment where they feel seen,

2020.65 -> and that they're welcome, and that you want them there.

2024.55 -> Occasionally, when I'm mixing it up,

2026.29 -> I do bring someone in to share their story.

2029.17 -> Jeanie had a number of really fascinating stories there,

2032.98 -> ones that should be shared

2034.51 -> because they're very inspirational.

2037.42 -> And I love those kind of stories,

2039.97 -> and it really does,

2041.89 -> especially when it's something with a big impact,

2045.82 -> it brings that support group to a deeper level.

2049.93 -> When they see the vulnerability

2051.67 -> of someone else sharing their story that I bring in,

2054.52 -> they will then be more vulnerable and open

2057.64 -> as we move forward.

2064.72 -> We do have to refresh the group with new members.

2067.3 -> This is an important part,

2068.5 -> especially with our stroke groups.

2071.95 -> We keep a Smartsheet,

2073.48 -> and we like Smartsheets

2074.95 -> because different people can be on 'em at the same time

2077.65 -> throughout the organization.

2079.57 -> So, this is our stroke Smartsheet.

2082.06 -> The nurses, as they're on the floors

2084.91 -> visiting patients and updating information,

2087.91 -> they get their emails,

2089.17 -> they ask them,

2090.287 -> "Do you want to share your emails

2091.96 -> for stroke events in our system?"

2094.87 -> And if they agree to put it on that Smartsheet,

2099.19 -> that, I have access to that.

2101.65 -> And so, I put them on my email list,

2105.04 -> and I send out a monthly email with all things stroke,

2109 -> and I'm gonna show you that in a minute.

2110.74 -> You know, our support groups, our wellness clubs,

2113.26 -> our cooking, our exercise class.

2115.66 -> I always attach an American Stroke Association article

2118.69 -> at the bottom.

2120.46 -> I assure them that I do not give their information out

2124.21 -> to anyone else.

2125.043 -> This is in my computer, on my list,

2127.93 -> and I only send them one email a month

2130.54 -> no matter what's going on or happening.

2132.19 -> I try to limit that to one email a month,

2135.19 -> 'cause I know I've signed up for different organizations,

2138.22 -> and then I start to wish I hadn't

2140.05 -> because I keep getting emails from them.

2142.93 -> And always blind copy emails,

2145.69 -> so if they reply, they reply only to me,

2149.41 -> and that way, I'm not sharing the group members' emails

2152.8 -> with a whole bunch of people they might not know.

2155.95 -> It is really important to involve your system.

2159.22 -> So, my healthcare system,

2161.29 -> we have a secondary stroke and TIA clinic,

2164.56 -> and we have a coordinator who's an ARPN.

2167.65 -> And so she goes over not only their test results,

2170.71 -> and the doctors, and their medication follow-ups,

2173.68 -> but she gives them all the literature on our support groups,

2176.59 -> our educational, our cooking, our exercise.

2179.71 -> And again, she gives them my information

2182.08 -> if it's not already on that Smartsheet.

2185.47 -> We have, in all of our hospitals,

2188.89 -> we have the Venice Hospital and the Sarasota,

2190.66 -> we have a area called Health Connections.

2193.51 -> We do talks there, but we have all kinds of literature.

2196.84 -> We have that pet therapy,

2198.88 -> we have educational talks,

2200.71 -> from hurricane preparedness to immunizations.

2204.76 -> So, we make sure that our health connections

2208.66 -> have these flyers,

2210.49 -> and that we have opportunities to speak, as well.

2214.33 -> If you have a stroke committee

2215.68 -> like we do at our hospital,

2218.32 -> it's a great place.

2219.4 -> I am on the agenda every single meeting,

2222.55 -> and I explain to 'em who's coming to speak,

2225.49 -> you know, what our numbers are.

2227.68 -> This is where I also get speakers from.

2230.92 -> So, it's really great to be part of that inside team

2235.03 -> that really knows they're going on.

2236.5 -> This way, when a stroke patient is coming

2239.23 -> and the doctor says,

2240.347 -> "You really need to see, get to the support group."

2243.7 -> You know, a wife or husband can tell them,

2245.627 -> "You need to go to a support group,"

2247.03 -> but when a doctor says it, or their nurse,

2249.55 -> it just carries a bigger impact, somehow.

2252.4 -> So, it's really nice to have your system on board with it.

2256.63 -> We do, I mentioned, keep that online calendar up to date.

2260.59 -> I don't know who's gonna come,

2263.05 -> so we can't cancel at the last minute

2267.46 -> because it's going out to the community.

2269.47 -> It's in advertisements, it's on signs.

2272.44 -> So, we try to train them to go to the calendar

2277.24 -> to see if there's a cancellation

2278.98 -> if there's inclement weather or something,

2281.65 -> because we don't reach out to them at that point.

2284.35 -> And there's a lot of work that goes into every single one.

2288.31 -> So, you can get a Wanda, an outpatient care coordinator,

2291.88 -> someone who you have a final contact,

2294.85 -> so within our system, and outside in the community,

2297.4 -> they know who to call.

2299.08 -> And again, make sure the switchboard knows

2300.85 -> who to send them through to, as well.

2306.79 -> This is just an example of one of our flyers,

2309.76 -> Lifelong Stroke Education and Support.

2313.36 -> This is the one that we developed during Covid,

2317.14 -> right after Covid,

2317.973 -> because we had combined our support and our education times

2321.25 -> because members all were on Zoom,

2323.68 -> and then coming back, they just kind of trickled in,

2325.93 -> so we combined it for a little bit

2327.58 -> instead of having two monthly meetings.

2329.86 -> But having, the reason I put this on here,

2332.17 -> is having that flyer and a consistent date and time

2336.25 -> is really important.

2338.2 -> Having a flyer that every nurse, every doctor,

2341.47 -> every marketing agency in your system has

2344.05 -> is really important for renewing those memberships.

2349.48 -> Next.

2351.13 -> This is just a quick example of how I do monthly emails.

2356.29 -> You know, making sure we give the date, the time,

2359.71 -> and the locations, and parking,

2361.48 -> and all that information is important.

2363.7 -> I will tell you, I've gone back and forth.

2366.19 -> For a while, we tried to tell people

2367.75 -> that you make stroke wellness and support

2369.67 -> a part of your ongoing recovery,

2374.71 -> and so, we would just want them to come

2376.33 -> regardless of what the topic was.

2377.98 -> So, sometimes we don't tell them the topic.

2380.5 -> Other times, we've gone with telling them

2383.08 -> the topics and the speakers.

2384.94 -> So again, mixing it up, trying this and trying that.

2388.373 -> 1:00 is where we now landed with that.

2390.94 -> It's not the golden hour that they all wanted,

2393.37 -> but we've kept it consistent with our education

2396.07 -> and our exercise classes that meet at the same time

2399.64 -> on different days,

2401.17 -> and that's just, you know,

2402.25 -> a phone number that they can reach out, as well.

2404.95 -> The next screen.

2409.81 -> This is the continuation of that monthly email.

2412.3 -> I always highlight

2413.83 -> some of our facilities

2417.34 -> and the things that we are doing,

2418.45 -> like our HealthFit gym that has that class.

2421.3 -> I always put the BE FAST on all of the emails,

2425.14 -> 'cause we wanna make sure they recognize signs of stroke.

2428.26 -> I always have an article

2431.02 -> from the American Stroke Association

2432.97 -> if they wanna go to that.

2434.2 -> And then again, names and phone numbers

2436.45 -> so that they can reach us.

2441.07 -> This is just the flyer

2442.27 -> for our HealthFit Fitness Forward program.

2444.52 -> It tells them a little about what they can expect,

2447.1 -> that we're gonna, you know,

2448.36 -> regain, retrain, and retain what we have maybe lost,

2453.22 -> what the program includes, and some highlights.

2456.49 -> And we do have scholarships available.

2459.31 -> Next.

2461.92 -> Adapting to the group's needs,

2464.59 -> different dynamics,

2465.67 -> we have aphasia groups, as well.

2469.27 -> And as these groups change and new members come in,

2473.95 -> sometimes you really do need to adapt for more wheelchairs,

2477.67 -> or the date, or the time, or rooms, or locations.

2480.58 -> Things happen.

2481.54 -> You no longer can use the room that you had last year.

2486.04 -> Listen to suggestions,

2487.48 -> but you cannot please everyone all the time.

2491.29 -> So, you can't change everything to please one member,

2495.1 -> but you have to continue to do what's good for the majority.

2503.86 -> It is a constant evolution in a group, or a support group.

2507.4 -> There's new people, new needs, people come and go.

2510.04 -> You can't take it personally.

2511.81 -> Some get better,

2513.4 -> some have secondary strokes and actually get worse.

2517.45 -> I've had people that have been with me

2519.46 -> and they're now aging, they have other comorbidities,

2522.34 -> they have cardiac issues, and diabetes, and, you know,

2525.52 -> and some lose their means of transportation.

2528.85 -> So, there's a couple of sayings

2531.01 -> that you hear military men use,

2533.02 -> like stay fluid, stay frosty,

2536.65 -> keep your head on a swivel.

2538.78 -> Those are really good advice,

2541.09 -> because you don't have a crystal ball,

2544.03 -> and we just have to stay frosty,

2546.28 -> even in Florida,

2547.66 -> constantly listening and looking for

2549.46 -> that new, innovative things that you can do with your group

2553.06 -> to keep them coming back, keep them interested,

2556.21 -> keep them bonding with each other.

2558.43 -> We do like the social time before and after,

2562.54 -> but a support group is very much like a Florida garden.

2565.87 -> If you don't water it, if you don't put something into it,

2568.78 -> it's gonna shrivel up and disappear.

2570.97 -> So, you have to continue to monitor, change,

2575.65 -> and inspire those people.

2580.78 -> Thank you so much for having me today,

2583.39 -> letting me share some of this.

2587.62 -> - [Anna] Thank you so much, Wanda.

2589.33 -> It is great to be here today.

2592.75 -> Next slide, please.

2596.71 -> The American Stroke Association, as already been mentioned,

2600.85 -> is a division of American Heart Association,

2603.7 -> and we were created in 1998,

2606.1 -> so we're actually celebrating

2608.47 -> 25th anniversary this year.

2611.86 -> I also, this being May,

2614.23 -> wanted to wish you all a happy American Stroke Month,

2617.44 -> time when we can come together

2619.45 -> to defeat stroke by learning

2621.64 -> and knowing stroke warning signs.

2624.13 -> Our success lies in teaming up with millions of volunteers

2628.24 -> to prevent, treat, and beat stroke

2630.94 -> by funding innovative research,

2633.28 -> fighting for stronger public health policies,

2636.1 -> and providing lifesaving tools and information.

2639.25 -> And why do we do it?

2640.54 -> Because stroke is the number two cause of death worldwide

2644.38 -> and a leading cause of disability.

2649.45 -> Our mission is to be a relentless force

2651.91 -> for a world of longer, healthier lives,

2655.21 -> and, I would add, with improved brain health,

2658.18 -> fewer strokes, and reduced disability.

2664.33 -> The pillars of our work

2666.07 -> represent how we're working to prevent stroke

2669.43 -> and disability from stroke

2671.38 -> by leading breakthroughs in stroke science and technology,

2675.16 -> by funding millions of dollars in stroke research,

2678.34 -> by publishing top research in our journal, "Stroke,"

2681.52 -> and by developing evidence-based stroke guidelines.

2684.46 -> We work in Washington, DC and across states

2687.31 -> to advocate for effective stroke policy.

2689.95 -> We work to improve stroke systems of care

2692.62 -> by developing resources to support hospitals

2695.71 -> and healthcare providers.

2697.51 -> Through our suite of quality improvement programs,

2701.62 -> such as Get With The Guidelines Stroke and Target Stroke,

2705.25 -> we work to transform healthcare.

2707.98 -> And we work to transform communities

2710.14 -> through public education campaigns

2712.06 -> and partnering with schools and local organizations

2715.57 -> to meet the needs of patients and their families.

2721.9 -> For today, I would like to focus on our work

2724.6 -> in transforming communities

2726.49 -> and how we do that

2727.54 -> through our Together to End Stroke initiative.

2730.3 -> Preventing stroke is by empowering Americans

2733.36 -> to live healthier lives and protect, you know,

2736.87 -> and protecting their brains,

2738.64 -> treating stroke by raising awareness

2740.59 -> about stroke warning signs,

2742.9 -> beating stroke by enhancing support of stroke survivors,

2746.8 -> loved ones, and caregivers

2748.78 -> through some of our campaigns,

2750.37 -> like American Stroke Month or World Stroke Day.

2754.72 -> We also have the Stroke Resource Library,

2758.35 -> where we can find patient and healthcare professional

2761.59 -> tools, brochures, fact sheets, and more,

2764.92 -> all in one place on our website, which is stroke.org.

2769.78 -> Supporting stroke survivors and caregivers

2771.97 -> with practical and emotional support

2774.28 -> available in a variety of different ways,

2777.46 -> online through the support network community,

2780.31 -> by phone through our toll-free stroke warmline,

2783.85 -> and in person by finding a local stroke support group

2787.51 -> using our finder tool.

2790.21 -> We also offer the CycleNation event,

2792.97 -> where we use cycling

2794.11 -> to improve cardiovascular and brain health

2796.51 -> and support our mission to prevent, treat, and beat stroke.

2803.53 -> Starting a support group requires a lot of work,

2806.71 -> but the payoff is helping stroke families

2809.47 -> rebuild their lives.

2811.03 -> On our website, you can find tips and best practices

2814.45 -> for either starting or strengthening an existing group,

2818.02 -> including our guide to successful stroke support groups.

2821.98 -> On our website,

2822.813 -> we also host a national stroke support group registry.

2826.78 -> Whether you are a brand new support group

2829.03 -> or need to update the information

2830.92 -> for a already-existing group,

2832.93 -> don't wait and make sure your group is registered

2836.14 -> and your information is current.

2838.72 -> Your registration assures inclusion

2841.45 -> of your group's information

2842.98 -> when stroke survivors and caregivers

2845.38 -> are searching for a group

2846.91 -> using our stroke group finder tool.

2854.29 -> If you're looking for a topic idea

2856.66 -> for your next stroke support group,

2858.85 -> I invite you to check out our lesson modules.

2861.85 -> Each was developed to help inform you, the leader,

2865.72 -> on a range of topics

2867.55 -> relevant to stroke survivors, caregivers,

2870.64 -> and the post-stroke journey.

2872.26 -> Currently, we offer eight topics.

2874.6 -> Each includes a presentation and a discussion guide,

2878.23 -> handouts, and a short video.

2880.51 -> Each topic is based on science and best practices.

2884.44 -> We are currently developing three additional topics,

2888.76 -> so do check back regularly,

2892.36 -> as we do keep adding them.

2894.61 -> In November of 2021,

2896.95 -> we also launched quarterly e-newsletters

2899.41 -> specifically for group leaders like you.

2902.08 -> We're working on developing a signup form,

2904.75 -> but in case you're interested

2906.07 -> in getting your name on the list right now,

2908.77 -> please email us at [email protected]

2911.707 -> and I will make sure you are added to the list.

2918.37 -> Lastly, I wanted to highlight a few additional resources.

2922.54 -> Recovering from stroke can be a long journey.

2925.63 -> No matter where in the recovery, there is hope,

2929.05 -> and we offer a wide variety of resources

2931.72 -> to support stroke survivors, caregivers,

2934.72 -> and their family members.

2936.46 -> These include fact sheets, guides, cookbooks, and videos,

2941.32 -> ranging from exercises demonstrated by physical therapists

2945.46 -> to tips for stroke survivors

2947.2 -> and our step-by-step videos

2949.33 -> on topics such as meal preparation,

2951.97 -> grocery shopping, home safety, and more.

2958.54 -> We invite you to stay connected

2960.25 -> through Facebook, Twitter,

2962.29 -> and our website, stroke.org.

2965.02 -> We also have a couple of monthly e-newsletters

2967.75 -> that I invite you to subscribe to

2969.97 -> if you're not already doing so.

2972.22 -> Both provide helpful and most up-to-date information.

2977.65 -> And each kind of varies a little bit

2980.44 -> in the audience that it's intended for,

2984.91 -> but again, both provide, you know, great information

2989.53 -> and always highlight any of our new resources and such.

2996.67 -> And I think that concludes my presentation.

2999.55 -> So, Gino, I'll turn things back over to you.

3004.994 -> - Thank you, Anna,

3006.129 -> thank you, Jeanie, and thank you, Wanda.

3007.59 -> I think we're going to get to our question section here,

3010.26 -> and between Jeanie and I,

3011.67 -> we've been watching the chat a little bit

3013.89 -> and just give us one second here,

3015.57 -> we'll pull up some questions

3017.13 -> and we'll get started.

3025.53 -> Wanda, I think this question's for you.

3027.3 -> Somebody was wondering about your experience

3029.88 -> transitioning your stroke groups from in-person,

3032.91 -> or from virtual, rather, to in-person,

3035.01 -> and do you use a blended format now?

3037.29 -> How's that working for you?

3040.23 -> - We did use both for a while,

3044.22 -> because we, being in Florida, we have a lot of snowbirds.

3049.23 -> So, we have people that are part of our group

3051.99 -> October, November, December, January, February,

3053.91 -> and then they head back up north,

3055.8 -> and they didn't wanna lose out.

3058.35 -> It is difficult, in the support group aspect,

3061.8 -> to have Zoom and in person.

3064.08 -> So then, for a while, I split the groups

3066.99 -> and I just worked with our online

3069.75 -> and we had a separate time for our in person.

3073.11 -> The Zoom seems to work better

3074.52 -> when they're just coming in for the educational ones.

3078.24 -> So, again, it's the stay fluid thing.

3080.46 -> We have tried all of 'em, and we've done all of that,

3083.46 -> and it's just what your group needs.

3088.847 -> - Thank you. - I will say,

3089.68 -> if they're gonna leave, and you're gonna have a Zoom,

3091.71 -> train 'em before they go.

3092.97 -> It's easier to do it in person.

3095.137 -> (Gino and Wanda laugh)

3096.27 -> - That's very-- - Being a northeasterner,

3098.04 -> I wanna thank you for taking care of our snowbirds

3100.5 -> when they head your way.

3102.39 -> - We love our snowbirds.

3104.07 -> That is not a derogatory, negative comment whatsoever.

3107.82 -> And we are so good in Florida

3109.95 -> with medical records going back and forth

3112.2 -> because we do so much of it,

3114.15 -> so we look forward to them rejoining us every fall,

3118.74 -> and we do love our snowbirds.

3122.07 -> Well, except for when you're on the road

3123.39 -> and the traffic is bad. (laughs)

3126.72 -> - Anna, I think this question might be for you.

3129.27 -> I know there's a lot of resources available

3131.67 -> on the stroke website,

3133.05 -> and somebody had asked,

3134.34 -> what are the best resources,

3136.98 -> or maybe opportunities available,

3138.9 -> to become a facilitator?

3141.18 -> Whether that be some resources that you know of

3143.97 -> or potentially, then we'll transition it to Wanda

3147.33 -> to see how you can then take those and implement them.

3151.38 -> - So, I would say that, I think our

3155.43 -> successful support group guide

3158.4 -> does, I believe, include some tips in there, as well.

3163.47 -> There might also be some information available

3166.56 -> on that webpage, as well,

3167.91 -> so, stroke.org.

3170.37 -> You can also, you know,

3171.96 -> if you're looking for something specific,

3174.21 -> please feel free to, you know,

3176.01 -> email us at [email protected],

3178.38 -> and I'll be able to, you know,

3179.88 -> point you in the right direction.

3182.893 -> I don't believe we have any tips or, like,

3184.77 -> fact sheets on facilitating itself,

3186.69 -> but like I said,

3187.68 -> the guide does have some helpful information,

3190.56 -> especially if you've never facilitated a group before,

3193.68 -> as well.

3197.13 -> - I think that-- - I'd also add

3197.963 -> that reaching out to a colleague, too,

3199.86 -> if you know somebody who's run a support group,

3202.02 -> they can give you,

3203.13 -> I see, they come across AANN's listserv all the time.

3207.097 -> "I wanna start a support group.

3208.47 -> Where do I start?"

3209.94 -> Reach out to your colleagues.

3212.85 -> - And I think the good word is facilitator,

3215.43 -> because you're not there to be the one talking.

3218.1 -> You're there to keep it in the parameters

3220.29 -> of a support group.

3221.64 -> Takes a little bit of the pressure off in facilitating.

3224.64 -> As long as you're dedicated, and put the time in,

3226.8 -> and do the communication,

3228.63 -> it's gonna work.

3233.01 -> - Thank you.

3233.85 -> Jeanie, I think that,

3235.2 -> I know you addressed it in the chat,

3236.37 -> but I wanted to maybe just see if you wanna elaborate

3238.2 -> on the hemorrhagic stroke population

3240.99 -> and how they can be incorporated in the stroke,

3243.3 -> in the group.

3244.133 -> Oftentimes they sometimes don't think

3246 -> that they're a part of this group,

3248.217 -> and so, how you can do that, in your experience.

3251.79 -> - Yeah, absolutely.

3252.75 -> So, honestly, and it's funny,

3255.03 -> another question came through about head injury patients.

3257.52 -> Do you include them in there?

3259.17 -> So, the aneurysmal subarachnoid hemorrhage patients,

3262.29 -> your intracranial hemorrhage patients,

3264.75 -> you know, all stroke patients.

3267.27 -> I think because we, they,

3270.15 -> I think they have more similarities than differences.

3273.66 -> So, I think they do benefit from the support group.

3279.18 -> You know,

3281.61 -> every once in a while, we would cover, like, a risk factor,

3285.18 -> we'd have a nutritionist,

3286.41 -> but not bad information for your aneurysmal patients

3289.98 -> or for a head injury patient, either.

3292.74 -> But we tended not to make it very medical.

3296.91 -> You know, every once in a while, I,

3298.26 -> and I think I alluded to this earlier,

3300.03 -> we did have our doctors come.

3302.25 -> I used to make it mandatory

3303.45 -> that they attend our Christmas party, and, you know,

3307.95 -> but, like, we would not keep it medical.

3310.11 -> I think the doctors learned more at the thing.

3312.24 -> One came back to me

3313.62 -> the day after one of the meetings and said,

3315.967 -> "Oh my god, it was my patient who was saying that,

3319.11 -> you know, her three year old was helping her

3321.09 -> put her underwear on."

3322.59 -> And I'm like, "Yeah, that's reality.

3325.23 -> That's what happens."

3327.36 -> But no, I think we can, you know,

3330.69 -> I think they have more similarities than differences

3333.09 -> when you think about deficit,

3335.13 -> and we're not really as much addressing

3338.7 -> specific mechanisms of stroke.

3343.59 -> - Thank you.

3345.21 -> I think we have time for one more question,

3347.76 -> and I'll pass it to Wanda.

3349.98 -> What would you say is maybe the top,

3352.2 -> or maybe top two barriers to starting a group,

3355.65 -> and how would you overcome that

3357.18 -> if you're gonna start one at your facility?

3361.26 -> - I think the biggest barrier

3363.81 -> is the communication with your own staff.

3366.117 -> The ones that are, you know, right there, bedside,

3369.57 -> the ones in the clinics,

3370.83 -> if they're not putting in the input,

3373.17 -> if you don't have the marketing with the flyer,

3375.36 -> if you don't have the staff input,

3377.88 -> just an advertisement in the paper's not gonna do it.

3380.76 -> So, by going to the stroke committee meetings,

3383.16 -> by talking to the nurses,

3385.05 -> by going to the TIA clinics,

3387.09 -> you know, putting in the effort at that front end

3388.95 -> to be with the patients,

3391.5 -> that's the best thing to do,

3393.54 -> but that's also the barrier when you can't get there.

3396.78 -> And what was the second part?

3399.27 -> - Just how you would overcome it.

3401.637 -> - Yeah, you just gotta put the time in.

3402.57 -> You gotta be right there in the trenches

3404.73 -> where they are coming in.

3409.2 -> - Jeanie, did I miss any question that you can think of

3412.411 -> that came up?

3414.21 -> - No, I think we covered basically everything.

3418.41 -> I just wanna say thank you to everyone who has participated.

3421.2 -> Thank you to Anna and Wanda,

3423.36 -> Wanda and Gino, especially, for organizing this whole event.

3427.62 -> We appreciate everything that you do in your communities.

3430.65 -> We appreciate your commitment to, you know,

3433.02 -> I said it's always kind of weird

3434.61 -> to say happy American Stroke Month.

3436.53 -> It's not necessarily a happy topic,

3438.9 -> but at this time, we do honor your commitment

3442.41 -> to your patients and to your communities

3444.81 -> to really optimize stroke care.

3446.88 -> So, thank you for attending.

3450.06 -> - Thank you.

3452.13 -> - Thank you, everyone.

3452.963 -> Have a great day.

Source: https://www.youtube.com/watch?v=v1XaJdgKzeI