POST POLIO SYNDROME – a challenge of today

EUROPEAN POLIO CONFERENCE //

PROGRAMMECOPENHAGEN DENMARK AUGUST 31 – SEPTEMBER 2, 2011

European Polio Union- An umbrella organization for polio organizations in Europe

60 percent of all people who have had Polio will develop Post Polio Syndrome. This con-cerns approximately 700,000 Europeans. EPU strives for all Europeans with Post Polio Syndrome to have the best possibilities to lead full active, independent and integrated lives.

Our objectives are:• Encourage coordinated research about Post Polio Syndrome• Create an international web site for data in relation to polio and Post Polio Syndrome• Produce a validated information bank of positive help to arrest the deterioration of people with Post Polio Syndrom• Campaign to ensure the need for continued polio-vaccination programs

For further information about EPU or to make a donation, please visit our website: www.europeanpolio.eu

3

CONTENT:WELCOME

INVITED SPEAKERS

PROGRAMME

PROGRAMME AT A GLANCE

PROGRAMME WEDNESDAY AUGUST 31st

PROGRAMME THURSDAY SEPTEMBER 1st

PROGRAMME FRIDAY SEPTEMBER 2nd

FILM: THE EPIDEMIC

POSTERPRESENTATIONS

SOCIAL EVENTS

HOW TO REACH THE CONFERENCE VENUE

4

7

8

9

11

12

14

15

16

18

19

4

WELCOMEThe European Polio Union (EPU) welcomes you to the European Post Polio conference in Copenha-gen. EPU wishes with this conference to bring focus on the challenges polio survivors all over the world meet, when they later in life experience pain and a decrease in muscle strength and functio-nal capacity. This conference invites the leading researchers and experts in the field of post polio syndrome, and the conference will give health care professionals a possibility to exchange new re-search results and to debate relevant topics on a professional level and hopefully spread the know-ledge about the problems of polio survivors to the health sector in their countries. We also wish to give polio survivors a possibility to achieve and exchange new knowledge on assessment, treatment and coping and to increase the awareness of post polio syndrome in the political systems.

TARGET GROUP• Health care professionals: Researchers, specialists in rehabilitation medicine, neurologists and other doctors, physical therapists, occupational therapists, nurses, psychologists, social advi- sors, orthotists or other professionals, who are involved with or treat polio survivors• Polio survivors and their relatives

CONFERENCE SITEHotel Crowne Plaza Copenhagen TowersØrestads Boulevard 114 - 118DK 2300 Copenhagen S, Denmark

CONFERENCE OFFICEMerete Bertelsenmbe@ptu.dkTel: +45 36 73 90 44Hotline August 29 - September 2: +45 23 88 57 14

CONFERENCE ORGANIZER FOR HOTEL ACOMMODATIONInternational Conference Servicesreservations@ics.dk

SCIENTIFIC COMMITTEE//Frans Nollet, MD, The Netherlands (Chairman)Kristian Borg, MD, SwedenJan Lexell, MD, SwedenLise Kay, MD, DenmarkMarianne de Visser, MD, The NetherlandsAntonio Toniolo, MD, ItalyLaura Bertolasi, MD, Italy

Arzu On, MD, TurkeyAlain Yelnik, MD, FranceMerete Bertelsen, PT, Denmark And 2 EPU representatives:Els Symons, The NetherlandsJohn McFarlane, Ireland

5

ACKNOWLEDGEMENTSThe European Polio Union (EPU) and The Danish Society of Polio and Accident Victims (PTU) thank the scientific committee for planning the scientific content of this conference.

EPU and PTU thank all the researchers, who have contributed to the scientific content by giving speeches or by submitting abstracts and presenting posters.

EPU and PTU thank the funds who have supported the conference financially:Den Georg Bruunske Fond, I.F.Lemvig Müllers Fond, Jascha Fonden, and the firms who have supported the conference in different ways: Grifols, PHI, Otto Bock, Jan Nielsen, Sahva, Fior & Gentz, Camp Scandinavia, Pfizer, Bus company Harbirk and Formuepleje.

DISCLAIMERThe organizing committee and ICS accept no liability for any injuries/losses incurred by participants and/or accompanying persons, nor loss of, or damage to, any luggage and/or personal belongings.

When applying on white background, no black fillet is needed, just keep the security area free of any other information or drawing.

4234 anunci corporatiu.indd 1 28/07/11 16:07

7

INVITED SPEAKERSAlain Yelnik MD, FranceAlice Bickerstaffe MD, The NetherlandsAnders Stenström MD, SwedenAnita Beelen PhD, The NetherlandsAnna-Lene Hartvigsen PT, DenmarkAnna Lisa Thoren Jönsson OT, SwedenAntonio Toniolo MD, ItalyArzu On MD, TurkeyBarbara Bocker MD, GermanyCarin Willén PT, SwedenClaus Vinther Nielsen MD, DenmarkDeidre Murray PT, IrelandElisabeth Farbu MD, NorwayEric Voorn MSc, The NetherlandsEsther Boserup PTU, DenmarkFieke Koopmann MD, The NetherlandsFrans Nollet MD, The NetherlandsGunilla Östlund Psych, SwedenHolger Kallehauge PTU, DenmarkIrene Tersteeg MD, The NetherlandsJan Lexell MD, Sweden

Joan Headley Director PHI, USAJohn McFarlane, Chair PPSG, IrelandJulide Oncu MD, TurkeyKaren Schipper Psychologist, The NetherlandsKatharina Sunnerhagen MD, SwedenKees Noppe Orthotist, The NetherlandsKirsten Avlund OT, DenmarkKjeld Møller Pedersen health economist, Den-mark Kristian Borg MD, SwedenLaura Bertolasi MD, ItalyLise Kay MD, DenmarkMarianne de Visser MD, The NetherlandsMerel Brehm PhD, The NetherlandsMichael Laub MD, DenmarkPeter Bundgaard Rotary, DenmarkRebecca Martin, WHOSelma Calmes MD, USASylvi Salomonsen RTP, SwedenSvend Prytz MD, DenmarkTroels Staehelin Jensen MD, Denmark

MD: Medical doctorPT: Physical therapistOT: Occupational therapistMsc: Master of SciencePTU: Danish Society of Polio and Accident VictimsRTP: The Swedish Assosiation for Survivors of Accident and InjuryPPSG: Post Polio Support GroupWHO: World Health Organization

PRO

GR

AM

ME

DIV

IDED

SES

SIO

NS

FOR

PO

LIO

SU

RV

IVO

RS

AN

D P

RO

FESS

ION

ALS

Som

e of

the

ses

sion

s at

the

con

fere

nce

will

be

prim

arily

for

polio

sur

vivo

rs

or p

rimar

ily f

or h

ealth

car

e pr

ofes

sion

als.

It w

ill m

ainl

y be

the

sam

e to

pics

in

the

tra

ck f

or p

olio

sur

vivo

rs a

nd f

or t

he h

ealth

car

e pr

ofes

sion

als.

The

pu

rpos

e of

the

div

isio

n is

, tha

t w

e w

ant

the

info

rmat

ion

for

polio

sur

vivo

rs

to b

e he

ld i

n an

und

erst

anda

ble

lang

uage

for

non

pro

fess

iona

ls.

Thes

e se

ssio

ns w

ill b

e tr

ansl

ated

in t

o D

anis

h, F

renc

h an

d G

erm

an. T

he s

essi

ons

for

heal

th c

are

prof

essi

onal

s w

ill b

e in

a m

edic

al la

ngua

ge a

nd t

he s

essi

ons

will

giv

e th

e pr

ofes

sion

als

an o

ppor

tuni

ty t

o di

scus

s an

d ex

chan

ge k

now

-le

dge

on a

pro

fess

iona

l lev

el. T

he s

essi

ons

for h

ealth

car

e pr

ofes

sion

als

will

be

hel

d in

Eng

lish

only

.

The

prog

ram

me

may

cha

nge

beca

use

of u

nfor

esee

n in

cide

nts.

VID

EOS

Vide

os f

rom

spe

eche

s in

the

tra

ck p

rimar

ily fo

r po

lio s

urvi

vors

will

be

avai

-la

ble

on w

ww

.info

rmed

-sci

entis

t.or

g an

d th

roug

h a

link

on t

he c

onfe

renc

e w

ebsi

te (

ww

w.p

olio

conf

eren

ce.c

om)

and

from

EPU

s w

ebsi

te (

ww

w.e

uro-

pean

polio

.eu)

tw

o w

eeks

aft

er t

he c

onfe

renc

e.

REG

ISTR

ATI

ON

& IN

FOR

MA

TIO

NR

egis

trat

ion

and

info

rmat

ion

take

pla

ce in

the

hot

el r

ecep

tion.

Ope

ning

hou

rs:

Wed

nesd

ay

0

8.30

- 1

6.4

5Th

ursd

ay

08.

30 -

9.0

0 a

nd in

bre

aks

Frid

ay

08.

30 -

9.0

0 a

nd in

bre

aks

REA

DIN

G T

HE

PRO

GR

AM

ME

Sess

ion

for

all p

arti

cipa

nts

Tran

slat

ion

into

Dan

ish,

Ger

man

and

Fre

nch

COLO

UR

CO

DES

TOPI

C N

UM

BER

SN

umbe

rs in

fro

nt o

f to

pics

ref

er t

o su

mm

ary

num

bers

in S

uppl

emen

t of

Jo

urna

l of

Reh

abili

tatio

n M

edic

ine

2011

; Sup

pl. 4

9.

LOCA

TIO

NS:

Bas

emen

t fl

oor:

Ever

est

1 &

Eve

rest

2

2nd

floo

r: Lo

ch N

ess

& L

ake

Gen

eva

Sess

ion

prim

arily

for

pol

io s

urvi

vors

Tran

slat

ion

into

Dan

ish,

Ger

man

and

Fre

nch

Sess

ion

prim

arily

for

hea

lth

care

pro

fess

iona

lsN

o tr

ansl

atio

n

Soci

al e

vent

s

Reg

istr

atio

n, b

reak

s, e

xhib

itio

n an

d po

ster

vie

win

g

8

PRO

GR

AM

ME

AT

A G

LAN

CE

9.0

0 -

10

.00

Reg

istr

atio

n fr

om 8

.30

/ Co

ffee

Ope

ning

cer

emon

y Lo

catio

n: E

vere

st 1

& 2

Gen

eral

per

spec

tives

on

polio

Loca

tion:

Eve

rest

1 &

2

Lunc

hEx

hibi

tion

/ po

ster

vie

win

gLu

nch

Exhi

bitio

n /

post

er v

iew

ing

Lunc

hEx

hibi

tion

/ po

ster

vie

win

g

Aw

aren

ess

of p

ost

polio

in t

he p

oliti

cal a

nd

soci

al s

yste

m /

Loc

atio

n: E

vere

st 1

& 2

15.3

0: S

ight

seei

ng in

Cop

enha

gen

by b

us (

2,5

hour

s)

Reh

abili

tatio

nLo

catio

n: E

vere

st 1

& 2

Coff

eeEx

hibi

tion

/ po

ster

vie

win

gCo

ffee

Exhi

bitio

n /

post

er v

iew

ing

Coff

eeEx

hibi

tion

/ po

ster

vie

win

g

18.0

0: R

ecep

tion

at C

ity H

all o

f Co

penh

agen

19.3

0: D

inne

r at

Hot

el C

row

ne P

laza

Coff

eeEx

hibi

tion

/ po

ster

vie

win

gCo

ffee

Exhi

bitio

n /

post

er v

iew

ing

Loch

Nes

sN

etw

orki

ng f

or h

ealth

car

e pr

ofes

sion

als

Late

st n

ews

in

orth

otic

sR

ecen

t re

sear

ch

Agi

ng

Mob

ility

Exer

cisi

ng

Lake

Gen

eva

Film

:Th

e Ep

idem

ic

Rec

ent

rese

arch

and

in

itiat

ives

Sym

ptom

s an

d m

anag

e-m

ent

1

Sym

ptom

s an

d m

anag

e-m

ent

1

Sym

ptom

s an

d m

anag

e-m

ent

2

Sym

ptom

s an

d m

anag

e-m

ent

2

Sym

ptom

s an

d m

anag

e-m

ent

3

Out

com

e m

esur

es

Impr

ovin

g w

orld

wid

e ne

twor

k

Patie

nt

asse

ssm

ent

Path

ophy

siol

ogy,

Ph

arm

acol

ogic

al r

e-se

arch

and

tre

atm

ent

Path

ophy

siol

ogy,

Ph

arm

acol

ogic

al r

e-se

arch

and

tre

atm

ent

Rec

ent

rese

arch

Rec

ent

rese

arch

10.0

0 -

10

.30

10.3

0 -

12.

00

12.0

0 -

13

.00

13.0

0 -

14

.30

14.3

0 -

15.

00

15.0

0 -

16

.30

16.4

0

18.0

0

WED

NES

DA

Y /

AU

GU

ST 3

1st

THU

RSD

AY

/ S

EPTE

MB

ER 1

stFR

IDA

Y /

SEP

TEM

BER

2nd

9

Loca

tion:

Eve

rest

1Lo

catio

n: E

vere

st 1

Loca

tion:

Eve

rest

2Lo

catio

n: E

vere

st 2

Loca

tion:

Loc

h N

ess

Loca

tion:

Eve

rest

1Lo

catio

n: E

vere

st 2

10

3 w

eek

s re

hab

ilit

atio

nin

Cop

enh

agen

PTU

Reh

abili

tati

on C

ente

r of

fers

spe

cial

ized

mul

tidi

scip

linar

y re

habi

li-ta

tion

tre

atm

ent

for

pers

ons

wit

h po

lio a

nd o

ther

phy

sica

l di

sabi

litie

s

The

3 w

eek

prog

ram

co

mpr

ises

:

• A

sses

smen

t an

d tr

eatm

ent

by

neu

rolo

gist

, phy

siot

hera

pist

, occ

upa-

tio

nal t

hera

pist

, psy

chol

ogis

t•

Indi

vidu

aliz

ed e

xerc

isin

g pr

ogra

mm

e•

Gro

up e

xerc

ises

ses

sion

s•

Tech

inal

aid

s co

unse

ling

• Ex

erci

se a

nd r

elax

atio

n in

war

m p

ool

• Fr

ee a

cces

s to

the

tra

inin

g fa

cilit

ies

• Fr

ee u

se o

f te

chni

cal a

ids

• Fr

ee u

se o

f m

assa

ge c

hair

• A

ccom

mod

atio

n an

d al

l mea

ls

For

mor

e in

form

atio

nvi

sit

our

web

site

: w

ww

.ptu

.dk/

engl

ish

or c

onta

ct P

TU:

mai

l: pt

u@pt

u.dk

/

phon

e: +

45

3673

90

00

PTU

The

Dan

ish

Soci

ety

of P

olio

and

Acc

iden

t Vi

ctim

s F

jeld

ham

mer

vej 8

, 261

0 R

ødov

re, C

open

hage

n, D

enm

ark

E-M

AG

Act

ive

- orto

slede

n m

ed n

ya m

öjlig

hete

r Läs

mer

om

knä

lede

n på

: ww

w.ot

tobo

ck.s

e

A

ctiv

e

E-M

AG

Act

ive

er e

t led

syst

em ti

l indi

vidue

lt pr

oduc

ered

e or

tose

r. De

t har

en

selvj

uste

rend

e so

ftwar

e og

fung

erer

uaf

hæng

igt a

f ank

elle

ddet

.

Står

sta

bilt

og m

ed fr

i be

væge

lse

ved

gang

Otto

Boc

k Sc

andi

navi

a A

B •

ww

w.o

ttobo

ck.d

k

WED

NES

DA

Y A

UG

UST

31s

t 20

110

8.3

0 -

10

.00

REG

ISTR

ATI

ON

/ C

OFF

EE

OPE

NIN

G C

EREM

ON

Y IN

PLE

NA

RY

/ L

ocat

ion:

Eve

rest

1 &

2W

elco

min

g by

Pre

side

nt o

f PT

U, H

OLG

ER K

ALLE

HAU

GE;

Pre

side

nt o

f EP

U, J

OH

AN B

IJTTE

BIE

R &

the

Dan

ish

heal

th m

inis

ter

BER

TEL

HAA

RDER

GEN

ERA

L PE

RSP

ECTI

VES

ON

PO

LIO

/ L

ocat

ion:

Eve

rest

1 &

2M

oder

ator

s: K

RIST

IAN

BO

RG &

HO

LGER

KAL

LEH

AUG

E1:

Pro

gres

s of

the

era

dica

tion

of

polio

fro

m W

HO

s pe

rspe

ctiv

e /

REB

ECCA

MAR

TIN

, WH

O2:

The

sto

ry b

ehin

d th

e po

lio e

radi

cati

on c

ampa

ign

/ PE

TER

BU

ND

GAA

RD, R

OTA

RY3

: Pos

t po

lio s

yndr

ome,

ove

rvie

w o

f cu

rren

t kn

owle

dge

/ FR

ANS

NO

LLET

, MD

LUN

CH &

EX

HIB

ITIO

N /

PO

STER

VIE

WIN

G

INTE

RN

ATI

ON

AL

NET

WO

RK

ING

Mod

erat

ors:

ELS

SYM

ON

S &

AAD

JE D

E G

ROO

T4

: Im

prov

ing

wor

ldw

ide

netw

orki

ng t

o im

prov

e th

e liv

es o

f al

l sur

vivo

rs /

JO

HAN

BIJT

TEB

IER,

PRE

SID

ENT

OF

EPU

& JO

AN H

EAD

LEY,

DIR

ECTO

R O

F PH

I

PATH

OPH

YSI

OLO

GY

, PH

AR

MA

LOG

ICA

L R

ESEA

RCH

& T

REA

TMEN

TTh

is s

essi

on is

spo

nsor

ed b

y G

RIF

OLS

Mod

erat

ors:

MAR

IAN

NE

DE

VISS

ER &

KAT

HAR

INA

SUN

NER

HAG

EN9

: P

atho

gene

sis

of P

PS a

nd p

ersi

sten

ce o

f po

liovi

rus

geno

mes

/

AN

TON

IO T

ON

IOLO

, MD

10: I

mm

une

mod

ulat

ion

and

a po

tent

ial b

iom

arke

r /

KRI

STIA

N B

ORG

, MD

11: T

reat

men

t fo

r PP

S: R

esul

ts f

rom

a C

ochr

ane

revi

ew /

FI

EKE

KOO

PMAN

N, M

D

12: R

evis

ed E

FNS

guid

elin

es f

or d

iagn

osis

and

man

agem

ent

of P

PS /

EL

ISAB

ETH

FAR

BU

, MD

Que

stio

ns a

nd d

iscu

ssio

n

TRAC

K 1:

FO

R P

OLI

O S

UR

VIV

OR

S /

Loca

tion:

Eve

rest

1TR

ACK

2: F

OR

HEA

LTH

CA

RE

PRO

FESS

ION

ALS

/ L

ocat

ion:

Eve

rest

2

10.0

0 -

10

.40

10.4

0 -

12.

00

12.0

0 -

13

.00

13.0

0 -

14

.30

COFF

EE &

EX

HIB

ITIO

N /

PO

STER

VIE

WIN

G

REC

EPTI

ON

AT

CITY

HA

LL O

F CO

PEN

HA

GEN

PATH

OPH

YSI

OLO

GY

, PH

AR

MA

LOG

ICA

L R

ESEA

RCH

& T

REA

TMEN

TM

oder

ator

s: E

LS S

YMO

NS

& L

ISE

KAY

5: P

atho

gene

sis

of P

PS a

nd p

ersi

sten

ce o

f po

liovi

rus

geno

mes

/

ANTO

NIO

TO

NIO

LO, M

D6

: Res

earc

h m

etho

dolo

gy /

FIE

KE K

OO

PMAN

N, M

D

7: P

harm

acol

ogic

al t

reat

men

t &

med

ical

pre

caut

ions

/ K

RIST

IAN

BO

RG, M

D

8: P

erso

nal e

xper

ienc

e w

ith

IVIG

tre

atm

ent

/ ES

THER

BO

SERU

PQ

uest

ions

and

dis

cuss

ion

PATI

ENT

ASS

ESSM

ENT

Mod

erat

ors:

FRA

NS

NO

LLET

& E

LISA

BET

H F

ARB

U13

: Dia

gnos

tic

tool

s /

LAU

RA B

ERTO

LASI

, MD

14: E

lect

rodi

agno

stic

stu

dies

: Wha

t, W

hen,

Why

, Why

not

? /

ARZU

ON

, MD

15: D

iffe

rent

ial d

iagn

osis

/ M

ARIA

NN

E D

E VI

SSER

, MD

16: R

ehab

ilita

tion

ass

essm

ent

/ FR

ANS

NO

LLET

, MD

Que

stio

ns a

nd d

iscu

ssio

n

14.3

0 -

15.

00

18.0

0 -

19

.00

15.0

0 -

16

.30

11

THU

RSD

AY

SEP

TEM

BER

1st

20

11

09

.00

- 1

0.0

0

10.3

0 -

12.

00

REC

ENT

RES

EAR

CH &

INIT

IATI

VES

Mod

erat

ors:

AAD

JE D

E G

ROO

T &

KRI

STIA

N B

ORG

20: C

ycle

to

wal

k po

lio e

radi

cati

on /

RA

MES

H F

ERRI

S17

: Aus

tral

ia’s

pol

io h

ealt

h an

d w

elln

ess

retr

eat

/ M

ARY-

ANN

LIE

THO

F18

: The

war

m e

mbr

ace

of p

eer

supp

ort

/ AN

NE

SHAN

AHAN

19

: Dis

use

oste

opor

osis

in t

he p

atie

nts

wit

h po

st p

olio

syn

drom

e /

JÜLI

DE

ÖN

CÜ, M

D

SYM

PTO

MS

& M

AN

AG

EMEN

T 1

Mod

erat

ors:

LIS

E KA

Y &

HO

LGER

KAL

LEH

AUG

E21

: Ort

hope

dic

surg

ery

in p

olio

sur

vivo

rs /

AN

DER

S ST

ENST

RÖM

, MD

22

: Ane

sthe

sia

issu

es f

or p

olio

sur

vivo

rs /

SE

LMA

CALM

ES, M

D

23: R

espi

rati

on a

nd s

leep

/ M

ICH

AEL

LAU

B, M

D24

: Spe

ech

and

swal

low

ing

/ SV

END

PRY

TZ, M

D

Que

stio

ns a

nd d

iscu

ssio

n

REC

ENT

RES

EAR

CHM

oder

ator

s: JO

HN

McF

ARLA

NE

& JU

DIT

H G

LASE

R3

3: A

nee

ds b

ased

Ras

ch s

tand

ard

qual

ity

of

life

scal

e /

ALLA

N T

ENN

ANT,

MD

34

: An

expl

orat

ion

of d

iffe

rent

cop

ing

stra

tegi

es /

CA

ROLY

N Y

OU

NG

, PSY

CHO

LOG

IST

35:

Nev

er s

econ

d be

st?

Shap

ing

and

reco

n-st

ruct

ion

of id

enti

ty /

A.

K. S

CAN

KE, P

SYCH

OLO

GIS

T

36:F

actorsin

flue

ncethequ

alityoflifeof

polio

mye

litis

/ A

NIT

A AT

WAL

, OT

OU

TCO

ME

MEA

SUR

ESM

oder

ator

s: M

ARIA

NN

E D

E VI

SSER

& A

RZU

ON

37:In

ternationa

lclass

ifica

tion

offunc

tion

ing,

disa

bilit

y an

d he

alth

/ F

RAN

S N

OLL

ET, M

D

38

: Mus

cle

stre

ngth

mea

sure

men

t /

ANIT

A B

EELE

N, P

hD

39

: Out

com

e m

easu

res

for

fati

gue

/G

UN

ILLA

ÖST

LUN

D, P

SYCO

LOG

IST

40

: Out

com

e m

easu

res

for

pain

/

TRO

ELS

STAE

HEL

IN JE

NSE

N, M

D4

1: O

utco

me

mea

sure

s fo

r phy

sica

l fun

ctio

ning

/M

EREL

BRE

HM

, OT

42:

Out

com

e m

easu

res

for

part

icip

atio

n an

d qu

alit

y of

life

/

KATH

ARIN

A SU

NN

ERH

AGEN

, MD

Que

stio

ns a

nd d

iscu

ssio

n

REC

ENT

RES

EAR

CHM

oder

ator

s: A

NTO

NIO

TO

NIO

LO &

FIE

KE K

OO

PMAN

44

: Res

ista

nce

trai

ning

in c

ombi

nati

on w

ith

IVIG

tre

atm

ent

/ KA

TARI

NA

SKO

UG

H, P

T4

5: In

trav

enou

s im

mun

oglo

bulin

for

pos

t po

lio s

yndr

ome

/ LA

URA

BER

TOLA

SI, M

D

46

: Phy

siot

hera

py a

s pa

rt o

f a

mul

ti-

disc

iplin

ary

reh

abili

tati

on /

SU

SSE

BRO

BER

G, P

T4

7 H

ome

vent

ilato

r us

er s

urve

y /

BAR

BAR

A RO

GER

S

AG

ING

Mod

erat

ors:

JÜLI

DE

ÖN

CÜ &

LAU

RA B

ERTO

LASI

48

: Gen

eral

per

spec

tive

s of

agi

ng /

KIRS

TEN

AVL

UN

D, O

T3

2: P

arti

cipa

tion

in s

ocie

ty /

JAN

LEX

ELL,

MD

27

: Im

pact

of

com

orbi

dity

, agi

ng a

nd li

fest

yle-

rela

ted

fact

ors

in p

olio

sur

vivo

rs /

IR

ENE

TERS

TEEG

, MD

31:

Ps

ycho

logi

cal

aspe

cts

of

polio

su

rviv

ors

thro

ugh

thei

r lif

e ex

peri

ence

/

ALAI

N Y

ELN

IK, M

D

Que

stio

ns a

nd d

iscu

ssio

n

TRAC

K 1:

FO

R P

OLI

O S

UR

VIV

OR

S /

Loca

tion:

Eve

rest

1 /

with

tra

nsla

tion

TRAC

K 2:

FO

R H

EALT

H C

AR

E PR

OFE

SSIO

NA

LS /

Lo

catio

n: E

vere

st 2

TR

ACK

3: F

OR

HEA

LTH

CA

RE

PRO

FESS

ION

ALS

/

Loca

tion:

Loc

h N

ess

/ 2n

d fl

oor

10.0

0 -

10

.30

12.0

0 -

13

.00

COFF

EE &

EX

HIB

ITIO

N /

PO

STER

VIE

WIN

G

LUN

CH &

EX

HIB

ITIO

N /

PO

STER

VIE

WIN

G

12

13.0

0 -

14

.30

15.0

0 -

16

.30

16.4

0

SYM

PTO

MS

& M

AN

AG

EMEN

T 2

Mod

erat

ors:

KRI

STIA

N B

ORG

& JO

HN

McF

ARLA

NE

25: F

atig

ue -

Sym

ptom

s an

d m

anag

emen

t /

GU

NIL

LA Ö

STLU

ND

, MD

26: P

ain

in p

olio

sur

vivo

rs /

KA

THAR

INA

SUN

NER

HAG

EN, M

D

27: I

mpa

ct o

f co

mor

bidi

ty, a

ging

and

life

styl

e-re

late

d fa

ctor

s in

pol

io s

urvi

vors

/

IREN

E TE

RSTE

EG, M

D

28: V

oidi

ng a

nd b

owel

pro

blem

s /

LISE

KAY

, MD

Que

stio

ns a

nd d

iscu

ssio

n

SYM

PTO

MS

& M

AN

AG

EMEN

T 3

Mod

erat

ors:

ARZ

U O

N &

ELS

SYM

ON

S29

: Fal

ls a

mon

g po

lio s

urvi

vors

/

ALIC

E B

ICKE

RSTA

FFE,

MD

30

: Exe

rcis

ing

for

polio

sur

vivo

rs /

D

EID

RE M

URR

AY, P

T3

1: P

sych

olog

ical

asp

ects

of

polio

sur

vivo

rs

thro

ugh

thei

r lif

e ex

peri

ence

/

ALAI

N Y

ELN

IK, M

D3

2: P

arti

cipa

tion

in s

ocie

ty /

JAN

LEX

ELL,

MD

Que

stio

ns a

nd d

iscu

ssio

n

SYM

PTO

MS

& M

AN

AG

EMEN

T 1

Mod

erat

ors:

ALA

IN Y

ELN

IK &

AN

TON

IO T

ON

IOLO

21: O

rtho

pedi

c su

rger

y in

pol

io s

urvi

vors

/AN

DER

S ST

ENST

RÖM

, MD

22: A

nest

hesi

a is

sues

for

pol

io s

urvi

vors

/SE

LMA

CALM

ES, M

D

23: R

espi

rati

on a

nd s

leep

/ M

ICH

AEL

LAU

B, M

D24

: Spe

ech

and

swal

low

ing

/ SV

END

PRY

TZ, M

D

Que

stio

ns a

nd d

iscu

ssio

n

SYM

PTO

MS

& M

AN

AG

EMEN

T 2

Mod

erat

ors:

KRI

STIA

N B

ORG

& L

AURA

BER

TOLA

SI28

: Voi

ding

and

bow

el p

robl

ems

/ LI

SE K

AY, M

D25

: Fat

igue

- S

ympt

oms

and

man

agem

ent

/G

UN

ILLA

ÖST

LUN

D, M

D26

: Pai

n in

pol

io s

urvi

vors

/

KATH

ARIN

A SU

NN

ERH

AGEN

, MD

43

: Man

agin

g th

e co

mpl

exit

y in

dai

ly

occu

pati

ons

/ AN

NA

LISA

TH

ORE

N JÖ

NSS

ON

, OT

Que

stio

ns a

nd d

iscu

ssio

n

MO

BIL

ITY

Mod

erat

ors:

D

EID

RE M

URR

AY &

CH

RIST

INA

BRO

GÅR

DH

29: F

alls

am

ong

polio

sur

vivo

rs /

AL

ICE

BIC

KERS

TAFF

E, M

D4

9: L

eg o

rtho

ses

for

polio

sur

vivo

rs: N

umer

ous

inno

vati

ons,

lim

ited

evi

denc

e /

MER

EL B

REH

M, P

hD

50: A

sys

tem

atic

sea

ting

ass

essm

ent

/AN

NA-

LEN

E H

ARTV

IGSE

N, P

T

Que

stio

ns a

nd d

iscu

ssio

n

EXER

CISI

NG

Mod

erat

ors:

AN

ITA

BEE

LEN

& G

UN

NAR

GRI

MB

Y51

: Rol

e of

exe

rcis

e /

CARI

N W

ILLÉ

N, P

T52

: Rol

e of

aer

obic

exe

rcis

es /

JÜLI

DE

ÖN

CÜ, M

D53

: How

to

targ

et a

erob

ic e

xerc

ise

trai

ning

in

polio

sur

vivo

rs /

ERI

C VO

ORN

, MSC

Que

stio

ns a

nd d

iscu

ssio

n

NET

WO

RK

ING

FO

R H

EALT

H C

AR

E PR

OFE

SSIO

NA

LS /

16

.40

- 1

8.0

0 /

Loc

atio

n: L

och

Nes

s, 2

nd fl

oor

Mod

erat

or: F

RAN

S N

OLL

ET

How

can

we

crea

te a

net

wor

k in

Eur

ope

for

heal

th c

are

prof

essi

onal

s?

How

can

we

spre

ad t

he k

now

ledg

e ab

out

polio

and

pos

t po

lio s

yndr

ome

to o

ther

hea

lth

care

pro

-fe

ssio

nals

?

Com

e an

d co

ntri

bute

wit

h yo

ur id

eas.

14.3

0 -

15.

00

COFF

EE &

EX

HIB

ITIO

N /

PO

STER

VIE

WIN

G

FILM

: TH

E EP

IDEM

IC -

I do

n’t

rem

embe

r an

ytni

ng, b

ut I’

ll ne

ver

forg

et /

Lo

catio

n: L

ake

Gen

eva,

2nd

floo

r /

16.4

0 -

17

.40

The

film

dire

ctor

NIE

LS F

RAN

DSE

N w

ill p

rese

nt

the

film

, and

he

will

be

read

y fo

r qu

estio

ns a

nd

deba

te a

fter

the

scr

eeni

ng.

Seepa

ge14forades

cription

ofthefilm

19.3

0D

INN

ER A

T H

OTE

L CR

OW

NE

PLA

ZA /

PR

ICE:

70

EU

RO

/ L

ocat

ion:

Eve

rest

1 &

2

13

FRID

AY

SEP

TEM

BER

2nd

20

11O

RTH

OTI

CS /

with

tra

nsla

tion

/ lo

catio

n: E

vere

st 1

Mod

erat

ors:

FRA

NS

NO

LLET

& M

ORT

EN F

ENG

ER54

: Ort

hosi

s m

anag

emen

t /

Dr.

BAR

BAR

A B

OCK

ER, M

D55

: Lig

ht w

eigh

t fu

ll co

ntac

t ca

rbon

leg

orth

oses

/

KEES

NO

PPE,

ORT

HO

TIST

REC

ENT

RES

EAR

CH /

loca

tion:

Eve

rest

2M

oder

ator

s: JA

N L

EXEL

L &

SU

SSE

BRO

BER

G56

:Eva

luationofthe

fun

ctionofpelvicfloo

rmus

cles

/

MIR

CA O

CAN

HAS

, PT

57: N

atur

al h

isto

ry t

he p

olio

mye

litis

and

pos

t po

lio s

yndr

ome

in B

razi

l /AB

RAH

AO Q

UAD

ROS,

PT

58: F

atig

ue in

pat

ient

s w

ith

post

pol

io s

yndr

ome

/ AN

ITA

BEE

LEN

, PhD

59: E

xper

ienc

es in

dai

ly o

ccup

atio

ns o

f im

mig

rant

s w

ith

late

eff

ects

of

post

pol

io /

IOLA

ND

A TA

VARE

S, O

T

09

.00

- 1

0.0

0

COFF

EE &

EX

HIB

ITIO

N /

PO

STER

VIE

WIN

G

LUN

CH &

EX

HIB

ITIO

N /

PO

STER

VIE

WIN

G

REH

AB

ILIT

ATI

ON

/ P

lena

ry s

essi

on /

loca

tion:

Eve

rest

1 &

2M

oder

ator

s: G

UN

NAR

GRI

MB

Y &

ALA

IN Y

EKN

IK6

0: R

ehab

ilita

tion

in a

pub

lic h

ealt

h pe

rspe

ctiv

e /

CLAU

S VI

NTH

ER N

IELS

EN, M

D6

1: In

terd

isci

plin

ary

team

wor

k /

JAN

LEX

ELL,

MD

6

2: T

he v

alue

of

inve

stig

atin

g pa

tien

t pe

rspe

ctiv

es /

KAR

EN S

CHIP

PER,

PSY

CHO

LOG

IST

63

: Pat

ient

jour

ney

- M

y lif

e w

ith

polio

/ S

YLVI

SAL

OM

ON

SEN

, PO

LIO

SU

RVIV

OR

Que

stio

ns a

nd d

iscu

ssio

n

AW

AR

ENES

S O

F PO

ST P

OLI

O S

YN

DR

OM

E IN

TH

E PO

LITI

CAL

AN

D S

OCI

AL

SYST

EM /

Ple

nary

ses

sion

/ lo

catio

n: E

vere

st 1

& 2

Mod

erat

ors:

RO

S SI

NCL

AIR

& P

HIL

IP R

END

TORF

F6

4: P

ost

polio

syn

drom

e po

licy

in t

he E

U /

HO

LGER

KAL

LEH

AUG

E, P

RESI

DEN

T O

F PT

U

65:

Dis

abili

ty in

the

pol

itic

al a

rena

/ JO

HN

McF

ARLA

NE

66

: Cos

t ef

fect

iven

ess

/ KJ

ELD

MØ

LLER

PED

ERSE

N, H

EALT

H E

CON

OM

IST

Que

stio

ns a

nd d

iscu

ssio

n

Sum

mar

y of

the

con

fere

nce

/ FR

ANS

NO

LLET

, MD

Clos

ure

/ JO

HAN

BIJT

TEB

IER,

PRE

SID

ENT

OF

EPU

10.0

0 -

10

.30

12.0

0 -

13

.00

10.3

0 -

12.

00

13.0

0 -

15.

00

14

FILM

: Th

e EP

IDEM

IC -

I do

n’t

rem

embe

r an

ythi

ng, b

ut I’

ll ne

ver

forg

etTH

UR

SDA

Y S

EPTE

MB

ER 1

st 2

011

/ 1

6.4

0 -

17.

40

/

Loca

tion:

Lak

e G

enev

a, 2

nd fl

oor

In 1

952

Den

mar

k w

as in

the

thr

oes

of a

pol

io e

pide

mic

. Mor

e th

an 6

,00

0

peop

le c

augh

t th

e di

seas

e, m

ost

of t

hem

chi

ldre

n. N

iels

Fra

ndse

n, n

ow

a fi

lm d

irect

or, w

as o

ne y

ear

old

whe

n hi

s hi

ps a

nd le

gs w

ere

affe

cted

. In

this

poe

tic fi

lm e

ssay

he

retu

rns

to t

he f

atef

ul p

erio

d th

at h

e ca

nnot

re-

mem

ber,

but

will

nev

er f

orge

t. H

is p

aren

ts, h

is s

iste

r, a

nd a

rchi

ve f

oota

ge

help

him

to

furn

ish

wor

ds a

nd im

ages

for

a p

erso

nal a

ccou

nt t

hat

is a

lso

a hi

stor

ical

rec

ord.

Tod

ay p

olio

has

bee

n er

adic

ated

fro

m D

enm

ark,

but

se

vera

l tho

usan

d pe

ople

stil

l liv

e w

ith t

he r

avag

es it

cau

sed.

The

film

has

w

on s

ever

al p

rizes

all

over

the

wor

ld.

The

film

dire

ctor

Nie

ls F

rand

sen

will

pre

sent

the

film

and

he

will

be

read

y fo

r qu

estio

ns a

nd d

ebat

e af

ter

the

scre

enin

g.

LAN

GU

AG

ETh

e fi

lm is

in D

anis

h w

ith E

nglis

h su

btitl

es. T

he fi

lm c

an b

e sh

own

with

ot

her

lang

uage

sub

title

s af

ter

the

Engl

ish

vers

ion,

dep

endi

ng o

n w

hich

na

tiona

litie

s ar

e pr

esen

t.

15

POSTER PRESENTATIONS

SUMMARY 67: Analyses of sleep characteri-stics in Post-Polio Syndrome PatientsTatiana Mesquita e Silva, PT

SUMMARY 68: Comparison of self-reported fatigue in Post-Polio Syndrome patients and age matched controlsCharlotte Lucy Taylor, Honorary Research As-sistant

SUMMARY 69: New muscle weakness in the subclinically involved limbs in patients with poliomyelitisArzu Yagiz On, MD, Professor

SUMMARY 70: Relationship between lower limb muscle strength and gait performance in per-sons with post-polio syndrome Ulla-Britt Flansbjer, PhD, RPT; Christina Bro-gårdh, PhD, RPT; Jan Lexell, PhD, MD

SUMMARY 71: Relationships between objectively and subjectively assessed gait performance in persons with post-polio syndromeChristina Brogårdh, PhD, PT, RPT

SUMMARY 72: The WHOQOL-BREF provides a valid measure of Quality of Life in Post Polio Syndrome (PPS)Dr. Ian Pomeroy, Neurologist

SUMMARY 73: Post-polio syndrome and amyo-trophic lateral sclerosis - similarities, differences and diagnostic dilemmas.Ewa Matyja, PhD, MD; Milena Laure-Kamionowska, MD

SUMMARY 74: Validity and reliability of the Tur-kish version of Fatigue Severity Scale and Fati-gue Impact Scale for Post Polio SyndromeJulide Oncu, MD, Specialist on PM&R

SUMMARY 75: Concept of an interdisciplinary polio modul programme and therapy for polio Ruetz Axel, MD

SUMMARY 76: Benefits and Techniques of Aquatic Therapy Cynthia Henley, PT; Kathryn Wollam, PT

SUMMARY 77: Disabilities and working situation of immigrant with post-polio syndromeLinda Hou, PhD, MD

SUMMARY 78: Experience with Younger Patients in a Post-Polio Clinic: A Case SeriesJudith Glaser, DO, Physician

SUMMARY 79: Prescription of and satisfaction with the use of lower limb orthotic devices in persons with post-polio syndromeChristina Espelund, RPT, MSc

SUMMARY 80: A guideline for the orthotic ma-nagement in patients with severe weakness or paralysis of the lower extremitiesMerel Brehm, PhD, Senior investigator

SUMMARY 81: Energy cost of Walking in Prior-polio PatientsDeirdre Murray, Clinical Specialist, PT

SUMMARY 82: Exercise therapy and cognitive behavioural therapy in Postpoliomyelitis Syn-drome: The FACTS-2-PPS studyFieke Koopman, MSc SUMMARY 83: Voiding problems in a Danish population of polio survivorsLise Kay, MD; Merete Bertelsen, PT

Numbers refers to summaries in supplement of Journal of Rehabilitation Medicine 2011; Suppl. 49: 1 - 64

16

SUMMARY 84: Reported problems in relation to operation and anesthesia in a Danish population of polio survivorsLise Kay, MD; Merete Bertelsen, PT

SUMMARY 85: Ventilatory threshold in PPS pa-tientsAnita Beelen, PhD, Manager Research

SUMMARY 86: Results of 5-years of Lamotri-gine treatment in patients with Post Polio Syn-dromeArzu Yagiz On, MD, Professor of PM&R

SUMMARY 87: Fractures in an aging population poliomyelitis survivors- Experience of the Post-Polio clinic In Israel Alex Shapira, MD

SUMMARY 88: An exploration of fatigue from the perspective of people with Post Polio Syn-drome Samantha M Wong, Assistant Psychologist

SUMMARY 89: An exploration of the impact of Post Polio Syndrome on needs based quality of lifeAnne-Marie C. Quincey, Assistant Psychologist

SUMMARY 90: A positive turning point in life. Experiences of a comprehensive interdisciplinary rehabilitation programme in persons with post-polio syndromeJan Lexell, PhD, MD, Physician

SUMMARY 91: Self-perceived impairments in persons with post-polio syndromeJan Lexell, PhD, MD, Physician

SUMMARY 92: Self-perceived participation restrictions in persons with post-polio syndrome before and after interdisciplinary rehabilitationJan Lexell, PhD, MD, Physician

SUMMARY 93: Occupations that persons with post-polio syndrome perceive difficult to per-form in their daily lifeKatja Appelin, Occupational Therapist, MSc

SUMMARY 94: A Brief History of Post-Polio in The United StatesLauro S. Halstead, MD

SUMMARY 95: Post Polio Syndrome in British Columbia, CanadaJoan Toone, President PPASS, BC

SUMMARY 96: Polio Services Victoria: An Australian Approach to Effective Care for Polio Survivors through a ”Hub and Satellite” Model.Blaise Doran, BSc (Hons), PT

SUMMARY 97: A Sociological Study: Failure of Polio Eradication Programme in India.Ehtesham Akthar, MD, research scholar

SUMMARY 98: Post-Polio Syndrome: Situation in Spain and proposals for actionJose M. Amate, PhD *; Carmen Bouza, PhD *; Zuleika Saz-Parkinson, PhD *; Maayken Van Den Berg, PhD #; Juan M. Castellote, PhD

17

18

SOCIAL EVENTSCITY HALL RECEPTIONWednesday August 31st at 18.00The free City Welcome Reception takes place at Copen-hagen City Hall and is arranged by the municipality of Copenhagen. They will serve the famous City Hall pan-cakes. Please register to this reception in the registrati-on of the conference. Kindly bring your ticket received in the conference bag. Participants who have registered for shuttle bus will be transported to the City Hall at 17.00 from Hotel Crowne Plaza. Non disabled participants can take the train to Copenhagen Central Station and walk 5 minutes to the City Hall.

Please note that there is no shuttle bus back to the hotels.

Return to hotels:• Hotel Crowne Plaza: Take the train from Copenhagen Central Station to Ørestad Station (Direction: Malmø). The train is wheel chair accesible.• Hotel Clarion: Take bus number 30 from the Central Station • Hotel Wake UP: Walk to Tietgensgade at the end of Tivoli Gardens and take bus number 11 A. Or you can walk - it is a 16 minutes walk• Hotel DGI Byen: It is 12 minutes walk

Taxi for electric wheel chairs: Daniels Taxi, Tel: +45 40 82 45 06 (390 Danish kr. for the first 15 km + 60 kr. for each additional wheel chair user).Regular taxi: Tel: +45 35 35 35 35

CONFERENCE DINNERThursday September 1st at 19.30 in Everest at Hotel Crowne Plaza Copenhagen TowersA memorable highlight of the congress will be the Congress Dinner, that provides an ideal opportu-nity to mingle and meet other colleagues and polio survivors. The dinner includes 2 courses, coffee and either 2 glasses of wine, 2 beers or 2 soft drinks. More beverages can be bought in the cash bar. Tickets for the dinner can be bought when registering for the conference or at service desk, if tickets still are available. PRICE: 70 EURO

SIGHTSEEING IN COPENHAGEN BY BUS Friday September 2nd at 15.30 to 18.00Departure from congress venue and drop off at the 4 hotels mentioned at the registration site.Tickets can be bought when you register. PRICE: 35 EURO

HOW TO REACH THE CONFERENCE VENUEVENUE:Hotel Crowne Plaza Copenhagen TowersØrestads Boulevard 114 - 118DK 2300 Copenhagen S, Denmark, Tel: +45 88 77 66 55 www.cpcopenhagentowers.dk

The main entrance is on the back on Ove Arups vej. Parking is under the hotel. 50 % discount for conference participants. For high cars con-tact the reception. Hotel Crowne Plaza Copenha-gen Towers is located 150 meters from Ørestad Station.

FROM COPENHAGEN AIRPORT:Take the train at the end of terminal 3 from platform 2 to Ørestad Station. (It is 2 stops and the destination of the train is Helsingør). The train is wheelchair accessible. There is a free airport shuttle bus between the terminals / see www.cph.dk.

If you are staying at the Hotel Crowne Plaza, there is a free shuttle bus to the hotel between 06.00 and 23.00. Contact the ”Sixt Car Rental” in terminal 3, where you can order the transportation. Alternatively take a taxi, which takes 5 minutes. Taxi which can take an electrical wheel chair can be ordered at Daniels Taxi, Tel: +45 4082 4506 (390 kr. for the first 15 km + 60 kr. for each additional wheel chair user).

FROM COPENHAGEN CENTRAL STATION: Take the train to Ørestad Station. It is the first stop and the destination of the train is Malmø. The train is wheelchair accessible.

PUBLIC TRANSPORTATION You can buy tickets in ticket machines at all stations. If you will be travelling by train, bus or metro more than 5 times, you should buy a 10 trip ticket (”blåt klippekort”) / 140 kr, which is valid for 2 zones for one hour. Remember to validate your ticket in the yellow machine on the platform/ in the bus. There is a map on the machine, where you can count how many zones your trip will pass (for 4 zones validate your ticket two times etc). There are 2 zones from the venue to Copenhagen city. The 10 trip ticket can be used by several people.

19

EUROPEAN POLIO CONFERENCE //COPENHAGEN DENMARK AUGUST 31 – SEPTEMBER 2, 2011

HELD BY THE EUROPEAN POLIO UNION // EPUAND THE DANISH SOCIETY OF POLIO AND ACCIDENT VICTIMS // PTU