global down syndrome foundation’s webinar series...global down syndrome foundation a unique...

WelcometoGetMoving,BeAwesome!–PhysicalTherapy&FitnessforAdolescents&AdultswithDown

Syndrome!

GlobalDownSyndromeFoundation’sWebinarSeries

Presenters:MichelleSieWhitten,President&CEO&Dr.SarahMann,PT,DPT,MBA,NSCA-CPT

Tuesday,December5th,2017

GlobalDownSyndromeFoundationAUniqueAffiliateModel!

2

v Global:wasestablishedasa501(c)3in2009andis“DedicatedtosignificantlyimprovingthelivesofpeoplewithDownsyndromethroughResearch,MedicalCare,Education,andAdvocacy”

v Affiliatesare:

Ø EstablishedwithaleadgiftfromAnna&JohnJ.SieFoundation

Ø MustworkcloselytogethertobenefitpeoplewithDownsyndrome

Ø Mustbeself-sustainingfinancially

Global&Affiliates

TheGlobalDownSyndromeFoundationispartofanetworkofaffiliateorganizationsthatworkcloselytogetheronadailybasistodeliveronourmission,vision,values,andgoals:

GetMoving,BeAwesome!!!PhysicalTherapyforAdolescentsand

AdultswithDownSyndromeDr.SarahMann,PT,DPT,MBA,NSCA-CPT

PhysicalTherapist

ProfessionalBackground

MannMethodPTandFitnessPLLC2017

BA1999

MBA2002

DPT(DoctorofPhysicalTherapy)2012

Education ProfessionalExperience

•  WorkingwithadolescentsandadultswithDSasfitnesstrainersince2004

•  DirectlymentoredbyPatWindersattheSieCenter

•  AdolescentSportsMedicinePTatSieCenter2013-2015

•  Workeddirectlywithover300uniqueindividualswithDStodevelopthesePT-basedexerciserecommendations


ObjectivesForToday:Ø  WHYDOESPTMATTERFORTHISAGEGROUP?

Ø  UNIQUEPHYSIOLOGY

Ø  PHYSICALTHERAPY

Ø  RESEARCH

Ø  WHATCANIDOTODAYTOGETSTARTED?

Ø  FOOTWEARANDFOOTSUPPORT

Ø  EXERCISEPROGRAM


PracticalTake-Aways

Establishapredictableroutine


Useavisualchartorschedule

Assessfootsupportregularly

KeepMoving!!!

WhyIsPTImportantforMyTeenorAdultwithDS?

UNIQUEPHYSIOLOGY


PatWinders’PrinciplesofPT

•  Longtermfunctionaloutcome

•  UnderstandandminimizecompensatorymovementpatternsofpeoplewithDS

•  Strategicallybuildstrengthinkeymusclegroups

•  Focusongait,posture,andexercise

“Physicaltherapyisacriticalservice,notbecauseitwillaccelerateachild’srateofdevelopment,butbecauseitwillimproveachild’slong-termfunctionaloutcome”-PW

Photo–Winders2014GrossMotorSkillsforChildrenwithDownSyndromeMannMethodPTandFitnessPLLC2017

CommonMedicalIssues

MEDICALFOLLOW-UPANDMILESTONES:1.  Yearlyphysicals/well-check-ups(every1-2years)2.  Keypointstoforfollow-upcare:

•  Attentiontogrowthanddevelopment•  Obesitycanbecontributingfactortoobstructivesleepapnea•  Annualhearingtesting•  Annualeyeexamination•  Annualthyroidscreening•  Celiactesting•  Attentiontoskinissues(dry,folliculitis,eczema,alopecia)•  SleephistorywithattentiontoOSAsymptoms•  History of sexual development, menarche and management of

fertility/contraception•  Guardianshipdiscussionandtransitionplanningbeginsage14-15


SystemsReview–AgingwithDS

Cardiovascular•  Cardiachistory

Neuromuscular•  Joints•  Muscletone•  Seizures

Endocrine•  Thyroid

function

Sleep•  Obstructive

sleepapnea–  50-75%(Bull

2011)

Alzheimer’s•  Higher

incidenceofADinourpopulation

•  StudiesonexercisehelpingpeoplewithAD

Mourato2014,King2011,Smith2001,Roizen2003,Bennet1982,Bull2011,Barnhart2007,Bittles2007,Lancet2014,NDSS2015


SystemsReview–Musculoskeletal •  Posture

–  Scoliosis(upto50%inpopulationwithDS),anteriorpelvictilt

•  Foot–  Flat,orthoticsupports

•  Hypotonia–  Muscletone

•  LigamentousLaxity–  Increasedflexibility

•  Obesity–  Exercise,diet

•  Arthritis


Wheeless2015,Mendez1988,Hresko1993,Mahy2010,Barnhart2007

SystemReview–StrengthsinLearningStyle

PeoplewithDS:•  Greatvisuallearners•  Greatimitators•  Greatadherencetoroutine

•  Supervision,support,accountability,motivation,anddirection

•  Hard-workingphysicaltherapypatients,lifelongfitnessparticipants

Dr.LinaPatel,PsyDDr.DennisMcGuire,PhD



PHYSICALTHERAPY


RoleofPhysicalTherapyforAdolescents/AdultswithDownSyndrome

Brown2001,NDSS2015 MannMethodPTandFitnessPLLC2017

PhysicalTherapyforAdolescentsandAdultswithDS:WhyDoesItMatterforPeoplewithDownsyndrome?

•  MetabolicRate?•  Obesity?•  Sedentarylifestyle?•  Recommendedamountofphysicalactivity?

•  Jointwearandtear?

Allison1995,Barnhart2007,RealdeAsua2014,Izquierdo-Gomez2014,Andriolo2010,Luke1994,Wilmore1999,Pitetti1995,Mahy2010,Draheim2002


WhenyouimplementPT-basedphysicalactivityrecommendationsfor

peoplewithDS,liveschange•  ImproveMuscleStrength

•  Decreasebodyweight

•  Improvefunctionalability

Shields2010,Shields2008,Rimmer2004,Tsimaras2004,Kliegman2011,NCPAD2011MannMethodPTandFitnessPLLC2017


RESEARCH


CurrentExerciseResearch


CardiovascularandStrength

CurrentExerciseResearch–Cissik2012

•  StrengthtrainingforpeoplewithDS?•  CardiovasculartrainingforpeoplewithDS?•  Whatisbest?


CurrentExerciseResearch


HelpPeopleMoveBetter

WhatcanIdotogetstartedtoday?

The3Fs:

FOOTWEAR

FOOTSUPPORT

FITNESS


SystemsReview–Musculoskeletal •  Posture

–  Scoliosis(upto50%inpopulationwithDS),anteriorpelvictilt

•  Foot–  Flat,orthoticsupports

•  Hypotonia–  Muscletone

•  LigamentousLaxity–  Increasedflexibility

•  Obesity–  Exercise,diet

•  Arthritis


Wheeless2015,Mendez1988,Hresko1993,Mahy2010,Barnhart2007

TheFlatFootTheFlatFoot

– Orthoticsupportoptions–fulllengtharchsupport

–  Superfeet–  SoleInsoles–  Custominsoles–Medicaidcoversthis!

–  Vasyliinserts–  Cascadedafoinserts


GetGoodShoes–TODAY!•  BrooksAdrenaline(adultsize5.5

ladiesandup)•  SauconyExcursion(kidssize10.5-3)•  SauconyTriumph(adult,widerfoot)•  BrooksBeast(adultwiderfoot,

heavierpronator)•  Benefitsofgoodshoes

–  Improvesfootposition–  Decreasespropensityforhalluxvalgus,greattoeabduction

–  Improvesfoot,knee,hipposition–  Improvesfootcomfort

– Improvesparticipationinactivity


StartanActiveRoutine–TODAY!•  Greatvisuallearners

– Excellentwithvisualchartsandschedules

•  Greatadherencetoroutine– Allowsforexperienceandmasteryofexercises

•  Startwithonesmallchange!

1234


IsthisexercisedangerousforadolescentsandadultswithDS?

•  Whatabouttheneck,hips,kneesandheart?– Atlantoaxialinstability– Hipinstability– Kneeinstability– Heartissues

•  Exerciseshouldbesupervisedtostart

Bull2011,Bennet1982,Newman2006MannMethodPTandFitnessPLLC2017

Necks,Hips,Knees,andHearts


PrimaryConcern PeoplewithDS GeneralPopulation

Atlantoaxialinstability 15%ofpopulation,1-2%symptomatic

Rare–idiopathicorinjury11%inpopulationwithRA

Hipinstability 5-8% 1-3%ofbabies

Knee(Patellar)Instability 5-9% Lessthan1%,usuallyassociatedwithsportsortrauma

CongenitalHeartissues ~50% 2-3%

Bull2011,Bennet1982,http://www.hipdysplasia.org/,Fithian2004

ExerciseRecommendations•  Keytosuccess:Establishinga

predictableroutine•  Manyathletesenjoyleading/

teaching/coachingtheexercises

•  Keytosuccess:Establishingapredictableroutine-sameorder,sameplace,sametime

•  Adolescentsover12canbeginweighttrainingwithsupervision(ConsistentwithACSMrecommendationsforstrengthtraining)


BeginningExerciseRecommendations15Squats 15repetitionsupand

down–easiesttobeginwithhandsupport,15inchballtotapto

10push-ups(kneesortoes)

10repetitionsHandsbychestKneesbentKneestogetherPush-upControldown

20secondplank(elbowsorhands)

10-20secondsFeettogetherToespointingdownEyesup

10Bridges 10timeswith5secondholdatthetop,slowandcontrolled


QUESTIONS?


CommunityResourcesCommunityprogramsforindividualswithDownsyndrome:

•  GlobalDownSyndromeFoundationHealthandWellnessPrograms–  www.globaldownsyndrome.org–  ChelseaHedrick:[email protected]

•  MannMethodPhysicalTherapyandFitnessPLLC–  www.mannmethodpt.com–  ContactSarahMann:[email protected]–  Call:720-524-4659

•  SieCenterforDownSyndrome–  Contact:720-777-6750

•  WheatridgeRecreationCenterTherapeuticRecreation–  http://www.ci.wheatridge.co.us/567/Therapeutic-Recreation–  Call303-231-1300

•  HighlandsRanchTherapeuticRecreation–  http://hrcaonline.org/Recreation/TherapeuticRecreation–  SummerAden:[email protected]

•  DenverRecreationCenters–  FreeRecCentermembershipforchildrenage5-18–  https://www.denvergov.org/adaptiverecreation


References1.  Winders,P.C.(2014).GrossmotorskillsforchildrenwithDownsyndrome:aguidefor

parentsandprofessionals.Bethesda,Maryland,WoodbineHouse.2.  Brown,R.,etal.(2001)."Qualityoflife--ageingandDownsyndrome."DownsSyndrRes

Pract6(3):111-116.3.  http://www.downsyndromensw.org.au/pages/growing-older-with-down-syndrome.html4.  http://www.ndss.org/PageFiles/2594/

Aging%20and%20Down%20Syndrome%20A%20Health%20and%20Well-Being%20Guidebook.pdf

5.  LancetNeurol.2013Oct;12(10):931.doi:10.1016/S1474-4422(13)70228-X.StrengtheningconnectionsbetweenDownsyndromeandAD.

6.  Allison,D.B.,etal.(1995)."DecreasedrestingmetabolicrateamongpersonswithDownSyndrome."IntJObesRelatMetabDisord19(12):858-861.

7.  RealdeAsua,D.,etal.(2014)."Across-sectionalstudyofthephenotypesofobesityandinsulinresistanceinadultswithdownsyndrome."DiabetesMetabJ38(6):464-471.

8.  BarnhartRC,ConnollyB.AgingandDownsyndrome:implicationsforphysicaltherapy.PhysTher.Oct2007;87(10):1399-1406.

9.  Izquierdo-Gomez,R.,etal.(2014)."ObjectiveassessmentofsedentarytimeandphysicalactivitythroughouttheweekinadolescentswithDownsyndrome.TheUP&DOWNstudy."ResDevDisabil35(2):482-489.

10.  DraheimCC,WilliamsDP,McCubbinJA.Prevalenceofphysicalinactivityandrecommendedphysicalactivityincommunity-basedadultswithmentalretardation.MentRetard.Dec2002;40(6):436-444.


References11.  AndrioloRB,ElDibRP,RamosL,AtallahAN,daSilvaEM.Aerobicexercisetraining

programmesforimprovingphysicalandpsychosocialhealthinadultswithDownsyndrome.TheCochranedatabaseofsystematicreviews.2010(5):CD005176.

12.  LukeA,RoizenNJ,SuttonM,SchoellerDA.EnergyexpenditureinchildrenwithDownsyndrome:correctingmetabolicrateformovement.TheJournalofpediatrics.1994;125(5Pt1):829-838.

13.  WilmoreJH,CostillDL,KenneyWL.Physiologyofsportandexercise.4thed.Champaign,IL:HumanKinetics;2008.

14.  PitettiKH,BonehS.Cardiovascularfitnessasrelatedtolegstrengthinadultswithmentalretardation.MedSciSportsExerc.1995;27(3):423-428.

15.  MahyJ,ShieldsN,TaylorNF,DoddKJ.IdentifyingfacilitatorsandbarrierstophysicalactivityforadultswithDownsyndrome.Journalofintellectualdisabilityresearch:JIDR.2010;54(9):795-805.

16.  ShieldsN,TaylorNF.Astudent-ledprogressiveresistancetrainingprogramincreaseslowerlimbmusclestrengthinadolescentswithDownsyndrome:arandomisedcontrolledtrial.JPhysiother.2010;56(3):187-193.

17.  ShieldsN,TaylorNF,DoddKJ.Effectsofacommunity-basedprogressiveresistancetrainingprogramonmuscleperformanceandphysicalfunctioninadultswithDownsyndrome:arandomizedcontrolledtrial.ArchPhysMedRehabil.Jul2008;89(7):1215-1220.

18.  RimmerJH,HellerT,WangE,ValerioI.ImprovementsinphysicalfitnessinadultswithDownsyndrome.AmJMentRetard.Mar2004;109(2):165-174.


References19.  TsimarasVK,FotiadouEG.Effectoftrainingonthemusclestrengthanddynamicbalanceability

ofadultswithdownsyndrome.JStrengthCondRes.May2004;18(2):343-347.20.  KliegmanR,NelsonWE.Nelsontextbookofpediatrics.19thed.Philadelphia,PA:Elsevier/

Saunders;2011.21.  http://www.ndss.org/Resources/Wellness/Nutrition/Recreation-Friendship21/22.  NationalCenterforPhysicalActivityandDisability.StrengthTraining.2011;http://

www.ncpad.org/disability/fact_sheet.php?sheet=139&section=1079.AccessedDecember23,2014.

23.  Mourato,F.A.,etal.(2014)."PrevalenceandprofileofcongenitalheartdiseaseandpulmonaryhypertensioninDownsyndromeinapediatriccardiologyservice."RevPaulPediatr32(2):159-163.

24.  KingP,TullohR.ManagementofpulmonaryhypertensionandDownsyndrome.Internationaljournalofclinicalpractice.Supplement.2011(174):8-13.BittlesAH,BowerC,HussainR,GlassonEJ.ThefouragesofDownsyndrome.Europeanjournalofpublichealth.2007;17(2):221-225.

25.  SmithDS.HealthcaremanagementofadultswithDownsyndrome.AmFamPhysician.2001;64(6):1031-1038.

26.  RoizenNJ,PattersonD.Down'ssyndrome.Lancet.2003;361(9365):1281-1289.27.  BennetGC,RangM,RoyeDP,AprinH.Dislocationofthehipintrisomy21.TheJournalofbone

andjointsurgery.Britishvolume.1982;64(3):289-294.28.  BullMJ,CommitteeonG.HealthsupervisionforchildrenwithDownsyndrome.Pediatrics.

2011;128(2):393-406.29.  BittlesAH,BowerC,HussainR,GlassonEJ.ThefouragesofDownsyndrome.Europeanjournalof

publichealth.2007;17(2):221-225.30.  PunjabiNM.Theepidemiologyofadultobstructivesleepapnea.ProcAmThoracSoc.2008;5(2):

136-143.31.  DellingFN,VasanRS.Epidemiologyandpathophysiologyofmitralvalveprolapse:newinsights

intodiseaseprogression,genetics,andmolecularbasis.Circulation.2014;129(21):2158-2170. MannMethodPTandFitnessPLLC2017

References32.  FinesilverC.Anewageforchildhooddiseases.Downsyndrome.RN.2002;65(11):43-48;quiz

49.33.  GoldenSH,RobinsonKA,SaldanhaI,AntonB,LadensonPW.Clinicalreview:Prevalenceand

incidenceofendocrineandmetabolicdisordersintheUnitedStates:acomprehensivereview.JClinEndocrinolMetab.2009;94(6):1853-1878.

34.  http://www.wheelessonline.com/ortho/downs_syndrome_orthopaedic_considerations35.  MendezAA,KeretD,MacEwenGD.TreatmentofpatellofemoralinstabilityinDown's

syndrome.Clinicalorthopaedicsandrelatedresearch.1988(234):148-158.36.  HreskoMT,McCarthyJC,GoldbergMJ.HipdiseaseinadultswithDownsyndrome.The

Journalofboneandjointsurgery.Britishvolume.1993;75(4):604-607.37.  CissikJ.DownSyndrome:AnIntroductionfortheStrengthandConditioningProfessional.

StrengthandConditioningJournal.2012;34(1).38.  MendoncaGV,PereiraFD,FernhallB.Effectsofcombinedaerobicandresistanceexercise

traininginadultswithandwithoutDownsyndrome.Archivesofphysicalmedicineandrehabilitation.2011;92(1):37-45.

39.  CarmeliE,KesselS,ColemanR,AyalonM.EffectsofatreadmillwalkingprogramonmusclestrengthandbalanceinelderlypeoplewithDownsyndrome.Thejournalsofgerontology.SeriesA,Biologicalsciencesandmedicalsciences.2002;57(2):M106-110.

40.  NewmanJH,RobbinsIM.Exercisetraininginpulmonaryhypertension:implicationsfortheevaluationofdrugtrials.Circulation.2006;114(14):1448-1449.


References41.CarrJH,ShepherdRB.Movementscience:foundationsforphysicaltherapyinrehabilitation.2nded.Gaithersburg,Md.:AspenPublishers;2000.42.HedmanLDRM,HankeTA..Neurologicprofessionaleducation:liningthefoundationscienceofmotorcontrolwithphysicaltherapyinterventionsformovementdysfunction.JournalofNeurologicPhysicalTherapy..1996;20:9-13.43.SchenkmanM,DeutschJE,Gill-BodyKM.Anintegratedframeworkfordecisionmakinginneurologicphysicaltherapistpractice.PhysTher.Dec2006;86(12):1681-1702.


global down syndrome foundation’s webinar series...global down syndrome foundation a unique...

Documents