www.apdaparkinson.org/greaterstlouis 1Volume 34, Issue 2

JULY 2020

Thursday, August 13 and Friday, August 14, 202010:00 AM – 1:00 PM

Midwest Parkinson Congress

V I R T U A L

There is no cost for this event, but registration is required. For more information or to RSVPvisit our website at www.apdaparkinson.org/greaterstlouis or call 636.778.3377 or 630.933.4392

RSVP TODAY to reserve your spot!

10:10 AM Jennifer Goldman, MD Cognitive and Other Non-Motor Behaviors and How to Cope with Their Manifestations1 1:05 AM Tao Xie, MD DBS in PD: Optimal Patient Selection, Limitations and New Developments

12:00 PM Rebecca Gilbert, MD Medical Marijuana and Parkinson Disease

FRIDAY SPEAKER SCHEDULE

THURSDAY SPEAKER SCHEDULE

10:10 AM Joel Perlmutter, MD What’s New in Research11:05 AM Aasef Shaikh, MD Parkinson’s Disease: A Balancing Act

12:00 PM Rebecca Gilbert, MD Sleep and Fatigue

Physical Therapy

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Questions About Sleep? Johanna Hartlein, APRNWashington University School of MedicineDepartment of Neurology, Movement Disorders Section

Answers Your Most Pressing Questions!

Q: What are some common types of sleep problems in Parkinson Disease (PD)? PD can cause several different kinds of sleep problems including REM sleep behavior disorder (thrashing, kicking, screaming, falling out of bed while sleeping called RBD), Periodic Limb Movements of Sleep (PLMS), vivid dreaming, insomnia (either not being able to get to sleep at night or trouble staying asleep all night), Restless Legs Syndrome, excessive daytime sleepiness, and/or nighttime confusion or hallucinations. Many people with

PD also have sleep apnea or urinary frequency/urgency/incontinence which can interrupt sleep and wreak havoc on them (and their bed partner). If you have trouble sleeping or staying awake, please discuss it with your doctor as there may be treatment options available.

Q: What are some non-medicine recommendations for getting a better night sleep? Sleep hygiene is important for all of us. That means several things:

1. Use your bed only for sleep and sex, not for eating, playing on your phone, watching TV or reading.

2. Try to go to bed and arise from bed at the same time each day. This teaches your brain that bed/night means sleep and out of bed/day means awake.

3. Limit napping to no more than an hour or two per day and not napping within 4 hours of bedtime. This also means to try not to doze off

SLEEP PROBLEMS AND PARKINSON’S DISEASE

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in the chair in the evening while watching TV. 4. No caffeine after about 1pm. 5. No exercise within 4 hours of bedtime. 6. Try a sleep mantra like counting sheep or

count backwards or even a phrase like “It’s ok” (inhale), “Peace” (exhale). Try to clear your mind and push out unwanted thoughts.

7. Limit ambient lighting (except for nightlights to get to the restroom).

8. If you awaken and have trouble getting back to sleep, try to get up and sit in a chair for 15 minutes then try going back into bed.

9. If nighttime urination is a problem, limit fluids within 3 hours of bedtime—but make up for those lost fluids during the rest of the day.

10. If you think you/your loved one may have restless legs, sleep apnea or hallucinations, this should be discussed with a doctor.

11. If daytime sleepiness is an issue, it may be okay to have 1-2 cups of coffee at breakfast and lunch or ½ to 1 200 mg caffeine pill for daytime wakefulness, assuming that you have no heart issues that would prevent this.

Q: Are natural supplements or over the counter sleep medications recommended? We usually ask patients to avoid over the counter sleeping meds as most contain diphenhydramine (the active ingredient in Benadryl) and this can worsen mental fogginess, balance and can cause hallucinations. We do recommend melatonin, usually 1-5 mg taken 2 hours before bedtime but if you have RBD, higher doses are frequently used. Other supplements may not be as helpful. There are prescription medicines that may help with sleep and these can be discussed with your doctor.

Q: Does my PD medication timing impact my sleep?

It depends. Some people find that overall, medicines like levodopa or ropinirole or pramipexole cause them to feel sleepy any time they take it, whether day or night. Amantadine, on the other hand, if taken too close to bed can cause insomnia. Some people find that their motor symptoms would be intensely uncomfortable if they did not take a bedtime

or middle of the night dose of PD meds. Other people find that they do not require bedtime doses at all. Occasionally, patients may feel PD meds cause insomnia. There is no question that PD meds at bedtime can worsen RBD and vivid dreams. So, it is overall a mixed bag and I would suggest discussing your specific PD meds sleep issue with your neurologist.

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TRIBUTES AND DONATIONS01.01.2020 to 05.31.2020

IN CELEBRATION OF

Cameron Gregory & Mark Cross’ New HouseGail & Larry Glenn

Barbara Maille’s BirthdayRobert Maille

Alana Fae SpecterGail & Larry Glenn

Mick SullivanKevin Huvane

IN HONOR OF

Ed AlpertMarilyn & Arnold Goldman

Richard AlportMarilyn & Arnold Goldman

Ann & Herb BreedenCynthia Cummins

Mary Ellen DavisRoger Davis

Karen FrankBallwin Tire & Auto Center

Dennis FreyDeborah Guyer

Debbie GuyerCitizens National BankKimberly PerryJack StrosniderLaurie & Alan Yaillen

Howard HurwitzContinuum, LLC

Michael IssermanTerri & Bill Taylor

Nancy KleinBill Black

Gloria LashJeff Lash

Neil LazaroffGail & Larry Glenn

Christy RatliffChristy Beckmann

Phyllis RossDoris & Robert Ebersole

Jack StrosniderDebbie & Karl Guyer

IN APPRECIATION OF

Johanna HartleinBeta & Donald Wende

Judi NassifJohn Nassif

Lynda WiensMary Sue Davis

IN MEMORY OF

Kay AnstineSally & James AllenDennis AnstineCarol & Max BellJack BolozkySue & Dave BrattonBetsy & RandyCrossDemars Distributing Rentals, The Enterprise BlockWalt DensmoreLori DeubnerRose Mary DieckhausJo & Jim DonahoeSandra DouglasShirley ElfbrandtPatricia & Roger HarrisNancy & Gill HartliepMarmette HegwoodMary & Ervin HeydeRuth & Maurice IltenKay JohnsonDonna Johnson GrothenMr. & Mrs. Peter LeVanCharles MeadowsHeather MurphyTiffany & William NorcrossLondi & Jim NovellyJack O’BrienCarole & Dale PasheaBonnie & Robert SchaeferS.K. & T.T. SmithMr. & Mrs. SwansonMr. & Mrs. Philip TaxmanNancy & Larry Young

Tom BelcherBeth FasslerJoe KauffmannPatricia & Joseph PelchJoseph PrzybylskiRaymond Schulte

Walter BentrupCathy & Earl AdkisonNorma & Dale Plank

Mary Lou BerkbiglerShirley & David Schrumpf

Joyce BrandtBarbara CohnMr. & Mrs. Thomas J. HillmanCary & Dee Mogerman

Jay BroddenPam & Jerry Brown

Alan BroddonRita Eiseman

Edie BrownRita EisemanSheila Siegel

Zoe Ann BuckleyBarry Roufa

Ann BuckmanJill BurkemperJames WalshKimberly Walsh

James BurkeCarol CoveyChristine HarlowRebecca HarlowNorma & Dale Plank

B. Gordon ByronJean Byron

Maida CannonMary Jill Stein

Don CarlsonMarilyn FriesLynda Wiens

Eugene CaudleGeorge CaudleMary & Jim CaudleSandra & Karl DyeJanet & Paul JenkinsPatricia O’Rourke

Jim ChaperloEugene Hanneke

Joseph CohenCarolyn Cohen

Roger CurrieDiana Topjian

Charles DanielsFMC TransportSusan & Richard KoerberCarolyn Plume

Donald DavisMary Sue Davis

Maryellen DavisRoger Davis

Robert DealeyMarie Dealey

Michelle DenbowBonnie & Daniel Johnson

Dorothy Delores DoreyRenee & David DayMary McCreightDorinda Wright

Lana DowdyGloria & Bob Schwarz

Jeff Drew’s MotherGail & Larry Glenn

John DumontCuivre River Electric Cooperative

Larry DwyerF.S. Sperry Company, Inc.Sally LandyCarrie & Bradley TaylorKathryn Thal

Sharon EasterdayCarolyn & John BraggJudy CopelandColleen EasterdayGlen EasterdayDebra EckhartDuane HallBeverly HamiltonLaura HopsonBrenton KarhoffKnox County Historical SocietyJanet & Jeffrey LanzarottaCarol MuenchAnn & Jon SchmidDiane Walter

Bill ErdmanChristy Ratliff

Rod EsterMr. & Mrs. Scott Saracco

Damiano FalconeAlison & Joe Falcone

Sonny FischerBetty FischerLinda McNairPilgrims Rest Baptist ChurchRuth & Cameron Timm

Joseph FitchBrenda Chatham

Edward FogartyDr. & Mrs. William Fogarty, Jr.Nancy RobbGladys Stannard

David FoxDonna Fox

Ed FoxCarole & Tom Anderson

Elaine GernerPatricia Anghilante

Bettie GershmanRita Eiseman

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We w

ill be known forever by the tracks w

e leave...Jane GoldbergSusan & Philip Schreiber

Georgia GreenMarjorie Demorast

Howard GrunewaldTricia Thompson

Robert GuilliamsKeith RingkampJudy & Bruce Rubin

Virginia GuitteauJanice & Michael Effinger

Arthur Harter, Jr.Mary Harms-Franey

Jack HeadMary AshleyEllen LembeckJune Payeur

James HeadleyGinny & Bob CrowleyLinda & Bill LymanMr. & Mrs. Richard RobinsonMary TeeterBrian TiburziWetz Charitable FundMartin Wice

Ronald HeierJay BenderMarilyn CoxonDorothy & John DwyerDavid GerthMeg HagerRita LungJoAnn LusserVerna TanzolaMary Lou & Robert Wilson

Christine HendersonLinda BoehmerConstance & Mary GeggJuliann & Darryl HerculesJan HessMary & Lowell PfenningDawn & Dan PlackmeierDiane RoehrsMary Beth SmithTheresa ThroGeri & William Willbrand

Marvin HeymanRita Eiseman

Ray HittConcord Church

Kenneth HoffmanJean & Robert FoxLeo GuenzburgerLaura & Jeff HoffmanSusan & Cory KnappRosie & Jim NehrtRita & Gene Schuette

Butch HoeckelmannAnn Schulte

Pat HughesGail & Larry Glenn

Alvin HymanSandy & Marvin Muchnick

Joe IraciShirley Heiman

Alex JamisonPeggy & Alan Schaffer

Kevin KentDebbie & Dave RussoPat & Verne Swerczek

Theresa KniepmannDeborah & Fred BohnenkemperKaren BohnenkemperJanet BoneClinton County Oil Company, Inc.Marlene & Michael FieldsLisa & Robert GernerCynthia & Roger GreeneDiana & Stephen HallRose HerbertFrank & Keith HuelsAdele JonesDolores, Michael D. & Michael J. KapillaLynne & Steven LudensDaewn & Michael MacmillanConnie & Timothy McCammonMary MolitorJulie & Dale NetemeyerMarianette RobbenBarbara & Erich StrohBarbara & Danny TallyJoan TheisingKathy ToberCatherine & Steven Weiss

Gertrude KollerLisa Graves

Horst KorneffelPat Merz

Joanne KuhnCathy & Steve Barnett

Jim LabitskaBarbara Labitska

Walter LeonardNancy & Richard ArnoldyLisa & John BearGeorgetta ComoAllene EvansMargery GableJean KautzmanKim & Joe KoenigCynthia & John LeFortRonald LipovskyDenise PisciottaJoan & Robert QuinnSue RappMaureen ReileyJohn SheahanLinda & Steve TaylorJane WebsterWestborough Country ClubElizabeth & William Widdoes

James LeyerleJudith BudrovichMr. & Mrs. Milorad Dudukovic

Roland LindhorstGayle BroukBarb Lindhorst

Nick LudwigDiane Ludwig

Mary Alice LynchMichele GnauRosemary Monrotus

Hank MackowiakPatrick & Margaret Farrell

Mike MaddenSally & Stan Zimmerman

Tom MahoneRoberta & Gordon Goldman

Raymond MarkhamPam BarleyRuth Ann FliegJudy KoehrRandall MillerMargaret PauleyVirginia PuhlHelen RepkeMary Jane & William ScottPaul StedmanPatricia & Gary Turner

Joseph MarshallDonna Marshall

Jesse MastersonSherry & Phil DothagerJudith & Richard LammMary Kay & Sid MastersonDebby McCoy

Wilfred MehnerMartha EngleDiana GrassGeorge MeyerJean & Jerry Sadler

Jim MeridithGloria & Bob Schwarz

Lewie MilesGala Lockwood

Anthony MonterussoHelena & Raymond FauszSusan & Dennis JonesMr. & Mrs. John PatrickMary Kay ReinholdSamantha, Alex & Ashlynn ReinholdMr. & Mrs. Charlie Webb

Monroe MorgansternVirginia Weiss

Karen Myers’ MotherGail & Larry Glenn

Charles NashSue & Ron Showalter

Mildred Louise OffermanMr. & Mrs. Earl Grothman

Edwin OlschanskyFran AxelbaumRita Eiseman

Robert OverkampLinda & Larry BornemannMargaret MatyeSue & Gary McLeanSharon & Jim Wiseman

Don PavlacicJudith CaseyTerri FeeneyChristine GarciaCynthia GrayBetty & Fred KolkhorstSteven MattliTerry & Greg Stocker

Albert PerryGoldtimers of John Calvin Presbyterian Church

Jim PetersonJean Peterson

Emil PhilipakLynn & Bill BallantyneBrugere & Company, CPA, PCJanis & Chris DecarliElizabeth & Martin EckelkampGatewood Wealth SolutionsSusan LaschoberPatricia & Robert LukingMary McFaddenCynthia & John MittruckerCarol PhilipakCheryl PhilipakRadialJudy & Frank WardPatti WattsSusan WilliamsSue Wissman

Brad PogerPam & Jerry Brown

Paul Anthony PtashnickBrewster Home Fashions, LLC

Jacqueline PultmanGail & Larry Glenn

Dr. RawlsGail & Larry Glenn

Alan RoufaDebbie GuyerCathy KraneBrent Shulman

John RyanPeggie Hudson

Cherry SandersPaul McAlister

Michael SchallomMarcia BalkCee Kay Supply, Inc.Maura ConnersAllison Dymnicki

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Gladiator ConsultingKarissa KellerJoey KneerBeth KrummGary NicholsLyndsey ReichardtClaire SchallomMarilyn & Roger SchallomDanielle StewartSarah Willey

A.J. SchoppLilyann & Jim Baldanza

Louis SchroppBeverly Framm

Fred SchweppeMarchie & Andrew BramAngie DietrichColleen DohleMr. & Mrs. William HunterCarol SchweppeThe Schweppe Family

Patrick ScottCathy & Earl AdkisonThomas ConleyDiane & Don DonlonHolly & Greg LanzaSheila LetzMichael OrlandoNorma & Dale PlankLinda RaridonLinda RitterKathryn & Jim SchweigertElizabeth TuckerSharon Wein

Vincent ScozzariVickie & Ted FujarskiMary GaalMarion LiebermannEllen & Anthony RibaudoMartin RibaudsJoan & Paul Vanderhoven

Susan SheilsPamela & Donald Smalley

Marty ShraderJudith Ugalde

Remy SilverblattPeggy GhertnerBarbara Montrose

Lee SimmonsRobin & Robert MottKaren & William Shoemaker

Graciano Sison, Jr.Gabriel Sison

James SketoeEva Sketoe

William StaffordAndrea & Richard AlsterBonhomme Presbyterian Church

Kenneth StammeShannon HeadleyStanley KardaszMonica & Zhan Lu Stamme

Kay SullivanNancy AgnewLorene AhnerJenifer & Michael BedeskyPatrick & Kerry CavanaughLucie & Mike ConvyBarbara CostiganGladys CramerElizabeth DauberPatricia & Donovan DehnerBarbara Erker-BaumstarkCynthia & Nelson GrumneyKathryn Connolly HartichCharlotte & Tom HillmeyerPatrice HornNancy & Greg LaVigneEthan LewisBryan LourdMargaret MansfieldMark McAleveyMr. & Mrs. John McGrathSusie MoloneyJoanna & Jon MoneElizabeth MurrayMr. & Mrs. David RothJean SchneiderScullin ManagementJane SimmonsMargaret & Bill StudeBrian ToedebushPhilip TomberJunnko TozakiAli TrustmanRita TuethDavid VogesPauline & John WalshMr. & Mrs. Gordon Weigand

Carl SussmanBeverly Silverman

Charles TaberHenry Taber

Marian Ruth ThomanElaine & Jim BethmannLisa & Russell CayseMaryann FreiseBonnie & Ron HakenewerthKristie & Michael HannaSheila & Fred HesterBob KaimanCarlotta & Ron RottgerCynthia & Matthew SchellertJennifer SmithBonnie & Ron HakenewerthPhyllis & Wayne WehdeKris Westhoff

Raymond ThorneJeffrey Goldone

Mary TobbenAnnette DurcholzSusan & James FriederichMarsha HellmannCarol & Robert Weber

Charles WielandDarlene FellhauerSandra HughesAnn & Robert KaiserGlenda & Phyllis Smith

Robert WiensDebbie & Karl GuyerLynda Wiens

Alice YoungermannDiane Gross

GENERAL GIFTS

Up to $99Brenda & David Andrews Lewis BillingsleyKathy & Lawrence BillyPatricia Brinkhorst Arnold Brody Barbara & Al Buck Sheila & Dale Buechler Carrie & Chuck BurggrafSusan & Tom ButlerCharlotte & Ronald CalhounJudy CampbellSister Marta CeballosRethel & Eddie ChappelleKathy & Garry ChaputLinda & Clifford Childs Nancy & Dick Chin Edie Cornell-Smith Annabelle & Cris Cosas Jim Drew Bertha Drewing Gaylen EadesErnestine Edelmann George Farrill Lucy FeltmannGarth FortKaren FrankTom Frazier Nora FreinCarol FriesBarbara & David Furman Larry Gassei Walt Guller Jayleen Hague Charles HarrisSandra HarrisCarol & Arnold HenkeKenneth HollenbeckSusan Holthaus Stephen JohnsonEdith KapfensteinerMarjorie KellyCarol & Frank Kerner Mary KlattPenny & Jack KrielDiane Lange Gloria Lash Roberta LewisJoann & Mike LoftusBarbara & Thomas Marshall Mary McVoy Charles O’Connell Mark Overby Pam & Jim Pendleton Carol Price Sandy & John Rocco

Debra & Jim RothDiana Roy Heidi SandersRaDonna Schroeder Shirley & David SchrumpfRob SmithBeverly Spindler Carol & Rod Stecher Mike Svoboda Carmella Swann Cathy & John TaurinsJanice & Cecil ThomasJohn TobinRobert Trottmann Ann & John Unruh Rebecca & Gary VosburghJudy & Neil WeintraubKathy Wilson Karl Yeager Vivian Zvibleman

$100-$499Nancy & Richard Bivens Linda & Michael BouchardSusan Brandom Pam & Jerry Brown Barbara & Al Buck Jean Burkemper Peggy & Pat CallahanLinda & Michael CeruttiLynne & Terry Conner Cecile & Gerald DavisRichard DistlerCathy & Dennis FreyTerry Friedman Robert GoldstickerMary GriesedieckRandy HendersonRobert HorschJerie & William IlchLinda & Steve Kilgore Nancy & Mike KleinRod KniepmannBruce KreycikEva LandgrafPam & Neil LazaroffNancy McCarley Linda & Thomas MullerNancy O’BrienMarilyn & Ron OsterNorma & Dale PlankSteven Ploeger Joseph PriceDorothy Reimers Karl Schoenfeld Rebecca & Paul Shaw Cindy & David SmalleyKindra Smith Robert SteeleAnn & Bill Sullins Janet Tarka Tyler WadsworthJeri & Ken WagnerMadeline & Dan WalkenbachHoyt Wallace Kathy WilsonLinda & Richard Wizeman

$500-$1,999Jean Cody

TRIB

UTE

S A

ND

DO

NA

TIO

NS

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James Holsinger Catherine Krane Jeanne & Phil McDermottDr. Kevin PostolShari & Bill Reller Bethany SleckmanMr. & Mrs. Kirk Verseman Delphine & Paul Williams

$2,000-$4,999Sandy & Rob GorenSally & Allen Serfas

$5,000-$9,999The Buck FamilyPatricia & Mark Burkhart Dowd BennettKPMGScott G. Lentin FundLuxco, Inc.

$10,000James and Alison Bates FoundationCarol House Furniture

ANNUAL GIVINGUp to $99Patricia BrinkhorstMarie & Mark CarlieJulie DubmanKen HarbaughLinda HarrisEarl KordickDiane LangeElizabeth & Jerome LesterMargie & Dewain ReimerTwila& Cohen WaltersKathy WilsonBarb & Karl Yeager

$100-$499Nancy & Richard BivensDennis BoudriaPam & Jerry BrownCitizens National BankDelta DentalJoann & Brian ElliottJayleen HagueChristel Maassen Christine & Dennis PuricelliDorothy ReimersSusan & John RothenheberCarol & Larry ShapiroJoan & Warren SolomonTyler WadsworthLaurie & Alan Yaillen

$500-$1,999Bill CorraySandy & Richard EllisonPhil EstepJoanie & Mark GoldsteinMarty & Alan LemleyLeAnn & Dayton MuddCheri & Al Rotskoff

$2,000-$4,999Sarah & David ButlerJean ByronLouAnn & Bob Nolan

We w

ill be known forever by the tracks w

e leave...Donor Spotlight:

Lindsey Carlie and Nancy Rapp

Lindsey Carlie and her mother, Nancy Rapp, have been loyal supporters of APDA-Greater St. Louis Chapter since 2011. Their gifts through the James and Alison Bates Foundation, a family foundation established by Lindsey’s great uncle, help to support programs, services, and research throughout Missouri and Illinois. Lindsey was only 24 years old when her entire life changed. In February 2007, her father unexpectedly passed away. And that August, her mom, Nancy, was diagnosed

with Parkinson disease (PD). That year was a blur for Lindsey. She didn’t know much about PD and didn’t realize how much it would end up affecting her life in the long run. Nancy was immediately proactive in securing the best care and learning as much as she could about her disease. Nancy learned about the APDA-Greater St. Louis Chapter through her school PTO connections and got involved within a year of her diagnosis. She joined a support group and was attending a variety of activities including Tai Chi. Lindsey credits APDA for how well her mom has been able to manage her PD. “I think for a long time, and even to this day, the knowledge my mom gained from APDA has kept the Parkinson’s at bay. She has had a very slow progression of PD. Mom really benefited from support group. She didn’t know anyone else with PD, so that really helped to have others going through the same thing.”APDA helped with finding the right support for Nancy on her Parkinson’s journey. “Without the APDA resources, I don’t know that she would have received the care that she has been receiving,” Lindsey shares. “APDA helped her be proactive about her disease. It gave her the knowledge of the importance of movement and medication management, which still helps her to this day. She knows the disease really well and how it affects her and that comes from her involvement with APDA.” As for Lindsey, APDA has been helpful in understanding what it means to have a loved one with PD and with knowing what resources are available. She wants to continue supporting the programs and services APDA provides to help others impacted by this disease and to help future generations. “PD has impacted my family in a very close way. Not only has it affected me through my mother’s diagnosis, but my great uncle had it as well. Through our family foundation, I am really trying to make sure I am honoring my great uncle and mother with our support of APDA-Greater St. Louis Chapter. We want to make sure we are supporting APDA not only for the programs and services they provide, but also for the research they support. We want to make sure this disease doesn’t carry on.”

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1415 Elbridge Payne Road, Suite 150Chesterfield, Missouri 63017Address Service Requested

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Join Us for the 2020Greater St. Louis

VIRTUALOptimism Walk!

Please join us on Saturday, October 17 at this year’s APDA Greater St. Louis Virtual Optimism Walk. COVID-19 may be keeping us from gathering in person, but we’re walking anyway!

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