Priscilla Sutton and the Spare Parts Exhibition

THE OFFICIAL MAGAZINE OF LIMBS 4 LIFE
VOLUME 15 / SUMMER 2011
IN THIS EDITION:
PRISCILLA SUTTON
and the Spare Parts exhibition
Bruce Jacques
In Motion Project
Body Image and much more.....
A Promise Kept –
Michelle Alves Todhunter
THE OFFICIAL MAGAZINE OF LIMBS 4 LIFE
TABLE OF CONTENTS
PAGE
04
BRUCE JACQUES
FEATURE STORIES:
04. Bruce Jacques
06. Priscilla Sutton - Spare Parts
10. In Motion Project
12. The Good, The Bad &
The Challenging
14. Cosmetic Options
16. Trading Up Prostheic Foot Technology
22. Peer Support
COLUMNS:
02. From the Editor
03. Message from Melissa Noonan Executive Director
18. Ask the AMPUTEE Coach
Readers Column
REGULARS:
19. Limbs 4 Life News
PAGE
06
PRISCILLA SUTTON
SPARE PARTS EXHIBITION
THE EDITOR - JACINTA DYSON:
Welcome back to Amplified.
In this edition, meet the vibrant
and inspiring Priscilla Sutton.
Priscilla recently curated the Spare
Parts Exhibition at the Brisbane
Powerhouse Museum bringing
together an array of artists using
prosthetic limbs as their canvases.
We also feature amputee Bruce
Jacques who is a regular member
of AMP-Link Limbs 4 Life’s online
community forum.
Dorothy Maciaga presents some
thoughtful responses on issues
surrounding body image in her
article ‘The Good The Bad and
The Challenging’. Contributing
Prosthetist Geoff Hill discusses
the options available for cosmetic
covers.
living life as an amputee.
Matt Henderson discusses the topic of
prosthetic choices, the impact funding
arrangements have and some options
you may wish to consider.
The Amputees In Motion awareness
project was developed to better
understand the needs of the amputee
community. We reveal some interesting
findings from the first phase of the
projects national amputee survey.
A special thanks to Gene Swinstead
for his editing support for this edition.
Gene has an extensive background in
writing and editing and we welcome his
expertise to the team.
Our new column Ask the Amputee
Coach makes its debut with
physiotherapist Cathy Howells
advising readers about any
concerns or questions regarding
20. Your Community
21. Sport & Activities
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02
MESSAGE FROM EXECUTIVE DIRECTOR – MELISSA NOONAN
‘Problems can become opportunities when the
right people come together’ - Robert South
Learning to live with limb loss is an
incredible change to all of our lives;
how we manage to deal with that
change is something entirely different
for each of us. Like most changes to
our lives we accept some easier than
others, adapt differently and do our
best to move forward.
In many ways, this year is about
change; like many other disability
organisations we eagerly await the
initial draft from the Productivity
Commission’s Inquiry into Disability
Care and Support. I’d like to thank
everyone who took the time to write a
submission and to highlight the issues
affecting amputees in Australia. It’s
important that as a group, amputees
are included within the disability
framework and that we draw attention
to our needs.
In support of change, Limbs 4 Life
conducted the largest survey of
amputees in Australia in 2010. The
‘Amputees in Motion’ project will be
rolled out this year and results from
our survey will be used to develop
education and awareness strategies
for our community. As most of you
know, funding for amputees under the
public system has not increased for
a long time and it does not reflect the
advancements in technology. Together
we can work on changing current
funding structures and promote
systemic change.
Limbs 4 Life Board of
Management is currently
undergoing a transitional change.
Our founding Chair Fiona Waugh
has stepped down from the role
which she passionately filled
for five years. Fiona has been
instrumental in the growth and
development of the organisation.
Her dedication and support to
‘Limbs’ and me personally has
been unprecedented. Fiona will
remain with Limbs 4 Life as a
general board member.
With that change we welcome
Carmen as our new Chair,
together with seven additional
Board Members who will help to
take the organisation forward into
the future.
So in the midst of the floods and
fires and as we try to embrace all
of the challenges and changes
that 2011 has in store for each
of us, I wish each and every one
of you a safe and happy New
Year. I am grateful to our devoted
volunteers, acknowledge their
efforts and would like to thank
our sponsors and supporters and
those of you who have contributed
to making Volume 15 of Amplified
magazine
available to all of
our readers.
AMPLIFIED
Volume 15 / Summer 2011
Limbs 4 Life Inc. A0046472T
ABN: 25 116 424 461
P.O. Box 282, Tunstall Square,
East Doncaster, Melbourne,
Victoria 3109
Phone: 1300 782 231
Fax: 1300 782 231
Email: [email protected]
Web: www.limbs4life.com
Managing Editor: Jacinta Dyson
Copy Editors: Zanni Waldstein,
Gene Swinstead
Design: Jenny Gore, Troy Laws-Herd,
Jacinta Dyson
Photography: Troy Laws-Herd
LIMBS 4 LIFE MISSION
To empower amputees with
information, and support, and to
promote an inclusive community.
FOR ADVERTISING ENQUIRIES PHONE:
Jacinta Dyson 1300 782 231
Information and articles contained in Amplified are
intended to present useful and accurate information
of a general nature but is not intended to be a
substitute for legal or medical advice. Limbs 4 Life
endeavours to ensure
all articles contained in Amplified are accurate and
correct.
Advertising policy: Limbs 4 Life does not
endorse any specific technology, company or
device. Consumers are advised to consult with their
healthcare providers before making any decisions
involving their care.
Privacy Policy: Go to www.limbs4life.com to
view our complete privacy policy document
Limbs 4 Life Board of Management 2011
© Limbs 4 Life Inc.
03
BRUCE JACQUES
Although it was 20 years ago last February, I remember the way my life changed then as
vividly as though it happened yesterday.
Aged 26 and a keen musician and
motorcyclist, I had just finished a
morning practice and thought it would
be a nice day for a quiet, safe ride out
of town. I had settled down and had
my new sensible and slower cruising
bike. Half an hour later in a quiet
town near the airport I was happy to
see a car stop at the give way sign,
as I was about to pass. I was right
in front of the car as it pulled out
and collected me. I left the bike, flew
through the air, slid down the road
and stopped inches from a tree in
front of a Vet, which proved handy
for bandages. In short the lower right
leg took the impact, and I still recall
almost looking down on myself and
thinking get back and get on with it
as I went into shock.
I was enjoying a fast growing career
in the Maritime Industry as a Deck
Officer and had recently joined a
prominent multinational company
operating offshore oil & gas vessels
and all was good.The ambulance
04
took me to the Royal Melbourne
Hospital. I awoke in the orthopaedic
ward and begun to summon up the
courage to look down. I had the full
range of emotions, but for whatever
reason I decided at least I was alive.
I remember thinking I’d never be
Captain of a ship which was my
life’s goal. Help and encouragement
from my brother and company was
incredible. My parents were shattered
I think and perhaps not quite sure
what to do, equally devastated about
my career as much as anything.
I got fresh fruit delivered, ate well
(challenging in hospital sometimes)
and thought about all the little things
that would contribute physically or
mentally to recovery.
part of the day I looked forward to,
something to do other than sitting
around. I would have liked more
contact just from people who had
been down the same path and more
information generally about all the
issues of caring for my leg in those
early healing days. Nonetheless rehab
was generally good. The sleeping
and pain issue grew and the doctors
suggested a higher dosage of drugs. I
suggested stopping it altogether, they
resisted but agreed. It got no worse
and one night a nightshift nurse of
Chinese background suggested
meditation. We went through the
ideas and I went to sleep! I felt that I
now had a new level of control over
dealing with things internally.
Moving to a rehab facility after 11
days I found myself in a ward of
people with all sorts of ailments.
Among strokes and head injuries,
I felt strangely fortunate. I suffered
badly from phantom pain, which kept
me awake a lot. Physio became a
My company suggested I could help
out in the office a couple of days a
week, but being at work was difficult
from a mobility aspect although
healthy in many ways. I went on
crutches and vividly remember being
so very self-conscious on Collins
Street with the trouser leg of my suit
pinned up on one side. I was sure
everyone was looking. Interim legs
came with regular adjustments and
difficulties initially. With no help at
home during the day, I had some very
ordinary days of course.
Later that year I went to Tasmania’s
Cradle Mountain with a new girlfriend
and began a short period of “look
what I can do on this leg!” Having a
new partner was a great support also.
I worked in many operational roles in
shipping and took some senior roles
over the next five or six years. I had a
brief few weeks back at sea but found
it a little difficult. Simultaneously,
I vigorously pursued my music
technology interest and ended up
teaching audio production part time
and started a small recording studio.
One evening I decided to follow the
dream, quit the corporate life and
went for music and my passion full
time. By this stage my leg functioned
so well I rarely thought about it. I was
married and happily battling on in the
music business. My wife and children
have never known anything other than
the prosthesis and so support is fairly
pragmatic in that it’s just the ways
things are.
On New Year’s Eve 2004 I resolved to
revisit the Maritime industry, returning
to an exciting project in oil & gas.I
then moved onwards to my present
position as Chief Officer on a modern
vessel that carries out all sorts of
offshore construction and subsea
intervention in oilfields. In August
2010 I obtained a Masters Certificate
enabling command on vessels of
unlimited size worldwide, so 2011
may present some interesting new
challenges by the looks of things.
Colleagues are amused to have an
actual pirate on board with the “ol’
wooden leg”. This role is very active,
mobility is vital and the subject of
various medicals required for the job.
These days if my leg doesn’t work
well, I don’t. On a previous project
I estimated covering around 2500
stairs plus all the walking around.
that concern me and hopefully have
made some useful postings. Whilst
I am reasonably low maintenance
mobility wise, it has been great to
hear of all the issues many experience
and often identify with them. I now
value my health and I do my best to
look after myself. The leg is a big part
of this plus I have a wife and three
gorgeous children who are better off
with a happy healthy dad, a fabulous
incentive.
Working four weeks on/four weeks
off I have plenty of time at home for
them and my many hobbies. I use a
C- Walk foot and Delta twist ankle
insert which provides some shock
absorption and torsional movement.
I also have a water leg, which is
good for the beach, pool, and sea
survival courses I’m required to do. I
encourage people to take advantage
of the entire resources Limbs 4 Life
offer through their website.
Limbs 4 Life has refocussed my
attention and through the online
forum I’ve learnt a lot about issues
“Limbs 4 Life has refocussed my
attention and through the online
forum I’ve learnt a lot about issues
that concern me”
“
h
y
05
PRISCILLA SUTTON
Spare Parts Exhibition
I’m sitting here in my lounge room, looking at a bunch of prosthetics all covered in bubble
wrap, wondering about what part of this adventure and my life as an amputee that I should
write onto paper and share with you.
Between the bubble wrap and the
limbs is the outcome of a small idea
of mine that turned into one of the
most rewarding experiences of my
life. I call it Spare Parts.
At the beginning of 2010 I wanted to
take on a creative project, something
to supplement my day job at
Queensland Health. Just what that
project was going to be was anyone’s
guess. Then one day I was cleaning
out a cupboard at home, and pulled
out a few of my old legs, and thought
how fun it might be to get one of
my creative friends to do something
with them to hang on my wall. But
I couldn’t decide what friends to
ask! And then I thought if I have two
06
old legs in just four years, I wonder
how many there are lurking in other
cupboards and sheds just collecting
dust?
I asked around and told a few people
about this ‘crazy idea’ I had – an
exhibition that uses old prosthetic
limbs as the canvas. I was quite
surprised at just how well everyone
received and loved the idea. I rang
my favourite art space, the Brisbane
Powerhouse, and by chance they had
a gallery space free later in the year.
The curator loved the idea and I was
given the green light! I went along
to an advisory committee meeting
held by the Queensland Amputee
Limb Service (QALS) to talk about
the exhibition and the limb drive I
was about to start. The presentation
before me was by a charity collecting
old limbs for Uganda. It was a
heart wrenching presentation, with
photos of locals – mostly amputee
kids – projected on the wall. I felt a
little uncomfortable to be the next
presenter. I wasn’t prepared like
they were, there were no slides – it
was just me, and my words. I made
a comment to Deb from QALS that
maybe Spare Parts was silly – and
she assured me that it was a great
idea and just as important. It meant a
lot for me to have the support of Deb,
and for her to believe in what I was
trying to do.
After this the limbs started coming in.
I also put up flyers in clinics, and on
pretty much any website that I could.
I started a blog to share the photos of
the donations and stories of original
owners where possible. I drove
from coast to coast to collect bits
and pieces, and met some amazing
characters.
I loved the calls too… “err hello, I’m
an amputee and I read a sign that
you want some legs?” was the usual
start to some of the best phone
conversations I’ve ever had, and I will
never forget.
I also convinced some friends to help
collect limbs. One great story was a
friend, Mark, who happened to be
going to Sydney at the same time
I came across a few legs
on offer down there. It
was fate really, as Mark
was flying down to pick
up a new car and drive
it back. The limbs were not
far from the car pick up point
and he was happy to help.
On the day however the guy
who sourced the limbs wasn’t
going to be home, so he said
he’d leave them at the local
servo for Mark to collect! It was
all very funny, and Mark went
to the servo and said to the girl
behind the counter “Apparently a
guy left some legs for me?”
So here Mark is, in a car not yet
registered in his name, with a boot
full of legs, on the highway back to
Brisbane. I am sure if he got pulled
up it would have been a great story
line for Dexter.
My shed filled up pretty quickly
with donations, the Facebook
page was starting to get lots of
followers, and the momentum
was already building. In the
end I had 65 pre loved prosthetics
donated, and they came from all
over Queensland, New South Wales,
Victoria, Tasmania, and also America
and Laos. Adam Hills, the host of
ABC TV’s Spicks and Specks even
gave me one, which was pretty
exciting! I had below knee legs,
above knee legs, a hip, hands, arms,
and even a prosthetic eye.
I think that donating prosthetics
for an exhibition was a therapeutic
experience for many people. Lots
of amputees were excited to have
something fun to do with their old
leg. And others were simply happy
to get rid of a dust collector. A few
prosthetics came from families of
amputees that had passed away,
and it was a beautiful way for them to
not chuck something out but instead
see a piece of their loved one live
on. More often than not I think that
amputees consider their prosthetic to
be a part of their body, and many of
us can’t bare the thought of putting
an old
arm or leg in the bin.
Each prosthetic
was a
permanent
donation,
which turned
some people
off – they
wanted their
limb back
at the end
which was an
impossible
promise I
couldn’t make.
Who knew
what some of
these artists
were going to
do? I had tattoo
artists, painters,
sculptors,
comic artists,
a milliner,
a fashion
designer,
stencil
artists,
street
artists,
graffiti
artists… such a diverse mix! The only
creative consideration was that no
one was to re-create or emulate a
traumatic scenario. But beyond that,
they could do whatever they wanted.
The blog was not only a place for
me to share the adventure of Spare
Parts, but it also acted as a shopping
cart for the artists to choose their
prosthetic canvas.
The media attention was growing
– newspapers and radio were all
keen to help me find some limbs.
The journalists were asking lots
of in-depth questions – they were
fascinated with the idea and it was as
if for the first time they were ‘allowed’
to ask the things their Mum told them
not to as a child. It made me realise
that I should get more kids involved. I
already had 12 year old artist, Bunya
Curran, on the list because I knew
his parents and often admired his
artwork at a gallery they used to
own. So I decided to put together
a school competition to kick-start
the conversation with the younger
members of the community. I sent
out posters and entry forms to every
high school in Brisbane. The students
had to show or explain what they
wanted to achieve, and I provided an
outline of a basic prosthetic on plain
paper. The entries were AMAZING
and each time I opened an envelope I
was in awe.
The winner was Breanna Stewart,
a year 11 student from Redeemer
Lutheran College in Rochedale. She
created a rose out of a leg, and it
was so very beautiful. I am so proud
of Breanna, not only for the amazing
artwork but also for her maturity with
the media attention that her winning
entry got. She was a cover girl for
the local paper, appeared on 4ZZZ
radio with me and was such a great
ambassador for the exhibition. It was
the first time she had ever met an
amputee and
Donated by Adam Hills - Artwork by Patience
07
Spare Parts Exhibition
Henry Hansen and his arm, artwork by Anthony Lister
Athol Heynatz, Michael Heynatz & Pricilla Sutton
08
Horsfall Family and their Mum’s eye, artwork by Briellen Baker
Spare parts was the most amazing celebration of prosthetics
I could have ever dreamed of. To me, a prosthetic leg is a
normal part of life, and I feel so proud to have bought them
into the lives of so many others for the first time.
ever really looked at a prosthetic. It
makes me so happy to help build
awareness, and experiences like this
– especially for young people.
Spare Parts came together quite
naturally. The artists were all so
excited about the new challenge,
the venue were thrilled with the line
up, and everything was paid for by
a generous amount of funding and
sponsorship.
The opening night attracted an
endless stream of people, it was so
busy and at some points you couldn’t
even get to the limbs hanging on the
wall! There was so much excitement
in the room, people were looking
at each piece with such intense
interest. It was the amputee party of
the year, with so many people from
the community coming together to
celebrate.
very difficult moments learning how
to walk, it took me much longer than
I had anticipated. But now I can run,
I box, I travel and most importantly
– live a life free of pain and full of
possibilities.
www.spareparts2010.com
My latest prosthetic is red with white
polka dots. I was at my clinic for a
fitting one day and was asked what
colour I’d like my new leg to be. I had
already decided to skip the cosmetics
and go for plain and lightweight to
see if it would help with my running.
Originally I was thinking about black,
that it would be something different
and fun. There was a little girl who
was about five years old also getting
a new leg and she was pretty excited
to tell everyone she wanted a Dora
The Explorer leg! I was so inspired
by this little girl that I decided to halt
the black, and I got some polka dot
fabric instead.
Spare Parts was the most amazing
celebration of prosthetics I could ever
have dreamed of. To me, a prosthetic
leg is a normal part of life, and I feel
so proud to have bought them into
the lives of so many others for the
first time.
Having a polka dot leg is so much
fun, I love the look on kid’s faces,
especially little girls who look at their
own polka dot dress, then my leg –
and are lost for words. They aren’t
thinking “that lady has a fake leg”
they are thinking “oh my god that lady
has a polka dot leg!”
During the exhibition I celebrated
my fifth year of being an amputee.
Each year my friends and I go out
to dinner in memory of my old leg. I
was born without a fibula bone and
had my ankle fused when I was a
quite young. My right leg was very
thin, and my foot was tiny and tilted
forward. I was 24 and living in pain in
Tokyo when I decided it was time. My
orthopaedic surgeon had wanted to
amputate since I was a little girl but
my Mum always said that it would
be my decision if and when I ever
wanted to. I was 26 when I finally had
surgery, and it was the best decision
I have ever made. There were some
I have always been a believer in
stump pride, looking after yourself
and treating your stump with lots of
TLC. After having a polka dot leg I
have added prosthetic pride to the
list as well. Sure I love my other leg
that has skinergy and I can wear it
and blend in completely. But there
is something very refreshing about
putting on my leg and a matching
scarf and walking out the door
feeling great!
Donated by PBO - Artwork by Lincoln Austin
09
IN MOTION
AN AMPUTEE PUBLIC
EDUCATION
AND AWARENESS PROJECT
A national survey carried out by
Limbs 4 Life in July has revealed
that amputees face a wide range
of issues – and despite being
a diverse group, have more in
common than they may think.
Amputees reported that access
to information and support,
lack of choice, inadequacies
in the public system and pain
management were some of
the issues that were commonly
faced by Australian amputees.
“Government funding for
prosthetics is totally inadequate,”
said one respondent. “It
only provides funds for the
most basic limbs.” ” When I
changed over to a differently run
prosthetic service I got much
better information, service and
options.” “In many ways that
positive experience changed my
life for the better.”
Returning home was also cited
as a major issue, with only forty
percent of people requiring home
modifications receiving funding.
The ‘Amputees in Motion’ survey,
which gave a snapshot of the
amputee population across
Australia, asked amputees
about their experience of the
10
health system: rehabilitation;
discharge and post rehabilitation;
prosthetics; pain; returning
home; employment and
community participation.
The findings of the survey will
be used as part of an ongoing
awareness and education
project.
“The ‘Amputees in Motion’
project was developed to
research and analyse the needs
of the amputee community and
provide educational information
and awareness building tools.
“The findings will be used to
educate, raise awareness
and identify issues faced by
amputees, their families and
primary care givers.”
Amputee Snapshot
The survey was taken by
amputees ranging from 18 –
84 years of age with 68% of
respondents being male. 62%
lived with a partner or spouse,
while a further 38.5% are
employed full time.
Provision of information and
support
Participants reported that
•they didn’t receive information
during key time lines,
•only 30% of respondents
received information prior to
amputation
“Conversations with fellow
amputees and discussions
about what I could expect were
extremely beneficial.”
“I would have liked to be able
to speak to other amputees - it
would have made life a lot easier
during the first 6 months.”
It was also noted that it is
important for carers and family to
receive information and support.
An overwhelming majority 90%
of participants would like to
know more about advances in
prosthetics, for example, shower/
wet legs and new technology.
However, 60% said they were
not aware of new products as
they become available. For
those keeping up to date, they
nominated their prosthesist as
the main source, followed by the
internet, then Amplified magazine
and website.
Cost and ongoing satisfaction
with prostheses
64.7% reported they were not
able to choose a prostheses
that matched their needs due
to funding restrictions. Many
participants report not being
offered a choice, for example;
‘In my case there was no
alternative’ and I was given a
‘standard leg’.
There were mixed experiences
with prosthetists, for example,
a participant had ‘great faith in
what the prosthetics team told
me and recommended for my
situation’ while another didn’t
get a prostheses that suited their
needs ‘until I went to another
provider’ while another did their
own research and advocacy.
Impact of ongoing pain
The response to ongoing pain
was varied, however generally
it was reported that pain can
impact on one’s ability to
undertake daily activities and if
left untreated leads to further
long term disability.
Almost two thirds of the
participants experienced
phantom limb pain ‘every now
and then’ or ‘always’. Only
16% had ‘never experienced’
phantom limb pain. On a scale
of one to ten with one being
extremely mild and 10 being
extremely intense pain, 46%
described experiencing this pain
as between seven and ten.
Residual limb pain or phantom
sensation was felt by 60% of
participants ‘always’ or ‘every
now and then’. This pain seemed
to be less severe than the
phantom limb pain as only 21%
recorded the pain intensity being
between seven and ten on the
scale.
Challenge of regaining
independence
A majority of participants
required modifications to their
home following rehabilitation.
These modifications most often
involved the bathroom and wet
areas. In addition, entrances
needed to be modified including
‘Ramps to replace steps and
installed hand rails and grab rails
to shower and toilet’.
90% were able to continue
driving a car, motor bike, truck
etc post amputation.
11
THE GOOD, THE BAD...
& THE CHALLENGING
Dorothy Maciaga
I consider myself pretty lucky. I
was born with a limb difference.
I didn’t lose my limb in an
unexpected accident, or due to
illness. I was just born “different”
and didn’t know any better from
the start.
I didn’t “become different”
overnight, not even when I had
the amputation which led me to
a better prosthesis, and better
walking (ironically enough!). I
thought I had myself all sorted
out, together with any issues that
I might have had with my body,
while growing up. I thought I
was pretty tough, physically and
mentally, and I was not feeling
12
particularly distinctive from
any other two-legged humans.
Others might disagree, but in
hindsight, I would even go as
far as to refer to myself as being
rather cocky (not towards others
by any means, more towards my
own limitations) or maybe just
in self denial? That was until I
met Melissa from Limbs 4 Life!
That was when my own most
truthful, honest and clear image
of myself and my own body
started to surface. Needless
to say this revelation has hit me
like a ton of bricks. It dawned
on me that all these years I had
fooled myself into thinking that
I was okay with the way my
body was, or was not. Whilst I
am quite happy to take my leg
off when I go swimming, I am
not okay with wearing shorts,
skirts or any other clothing which
highlights my imperfection in
public. All these years I had been
doing such a good job hiding my
affliction and focusing on fitting
into the two-legged masses, that
I actually thought of myself as
not having any physical disability.
I would consider it a mini triumph
when someone did NOT mention
my limp, nor asked me what I
did to my leg. If I had a dollar
for every time I was asked what
happened to my leg, by absolute
strangers mind you, I’d be a
millionaire! I’m sure I’m not the
only one who has experienced
it. I certainly used to, and still do
to a certain degree, get shocked
when people know or notice I
have an artificial leg, but don’t
think much of it, and don’t ask
me about it up front. How very
refreshing such interactions are!
What I think it might all come
down to is the fact that
amputees and people with other
physical disabilities tend to be
stereotyped and stigmatised by
society. The moment physical
disability or any other physical
aspect of a person becomes
apparent and deviates from
what’s defined as “normal” by
society, it is the disability and not
the actual person that becomes
the focal point of attention and
curiosity, and a starting point to
almost every single conversation
with a stranger.
The frustrating fact is that a
lot of people with disabilities
are treated by others as if the
disability defines them and who
they are as a person. Ironically
enough, I think that deep down
I have in fact allowed myself to
be defined by my own disability,
certainly not by others, but by
myself, by simply putting so
much focus on trying to cover it
up. How a society views physical
disability really does impact our
own body image, particularly
as these days there is so much
pressure for people’s bodies to
be perfect.
to wear sandals without caring
what other people see, think or
say. However, I am yet to go
commando. That’s in reference
to the prosthesis of course! I
really admire amputees who
are brave enough to go out in
public proudly displaying their
new limbs, without the cosmetic
covers.
Hopefully one day I will be OK
with my own body to the point
that I will also not care whether
I look part-Terminator, and
whether people will see the real,
vulnerable me.
Well, my stump is far from being
perfect, but it’s there, it’s part of
me whether I like it or not, and
I guess it does tell at least part
of my story, but most certainly
not the whole story! It was only
very recently I got brave enough
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Cosmetic Options
Wearing a prosthesis can present
enough day to day irritations and
niggles that the last thing needed
is to attract other peoples
attention to the damn thing. So
what can be done to make it less
noticeable? This article looks
at the available options for the
appearance, often called the
cosmesis, of leg prostheses.
The most commonly used is
the soft cover with stockings.
These are the standard method
in Australia, and are fitted to
prostheses provided through
the state ALS’s. It consists of a
lightweight foam block which is
shaped to match the profile of
the anatomical limb. This is then
covered with a stocking. It is a
cheap and effective method of
providing an appearance which
will at least not attract attention,
but won’t stand up to much
more than a passing glance.
They have a uniform colour and
no attempt to match skin surface
definition or texture. They also
leave the top of the prosthesis
exposed and make no attempt
to disguise the transition from
prosthesis to body.
For everyday use they are quite
durable and as the stockings
14
are cheap and easy to change
they can be maintained easily.
However they do not stand
up to rough use and will tear if
snagged, for example if walking
through scrub wearing shorts.
The next option is the pre-made
cover, usually silicon or vinyl.
These are a mid-range option,
which are fitted over the same
type of foam as described
before. They are available in a
wider range of colours which are
chosen from swatches and have
differing levels of surface detail.
They can also be brought right
to the edge of the prosthesis
so make the prosthesis-limb
transition a bit less noticeable.
Together with the range of
colours they do improve the
cosmesis but at a cost. They are
not likely to be funded by ALS’s
though insurance companies
may pay for them.
Their disadvantage is that they
are not particularly durable and
not practical to repair, so one
snag and your dough is blown!
A secondary advantage is that
they offer some waterproofing
effect. Some people opt to use
them for this reason rather than
for their appearance.
The top of the cosmetic range is
the custom-made silicon cover,
possibly most famously seen on
Heather Mills. These are made to
match each individual’s skin. The
amount of detailing depends on
how much you want to spend,
but the results can be incredible.
They are time consuming and
expensive though, with the most
elaborate costing the same as
a half-decent car. They are only
available privately and mainly
overseas. They still don’t change
colour when you do, so watch
out for the holiday tan.
The final option is to go
commando! Increasingly,
many people are having no
covers on their prosthesis. This
practice started among young
men happy to show off their
advanced componentry, but
is now common right across
the amputee community. The
motivation varies but it certainly
indicates that fewer and fewer
people see any stigma in being
an amputee.
Geoff Hill
Plié
2.0
MPC KNEE
The Plié 2.0 integrates high-performance processing capabilities and a
cutting-edge hydraulic system, making it the most responsive MPC knee
ever developed. A finely tuned control system enables the Plié 2.0 to
respond to ambulatory stimuli within 10 milliseconds. Consequently, users
can stay in stance phase longer, take smaller steps and change walking
speeds more fluidly. A proprietary position sensor and patent-pending load
cell built into the frame of the Plié 2.0 provide input to advanced algorithms
utilized by the microprocessor to control stance and swing, and stumble
recovery parameters.
With its electronic components securely sealed against moisture, Plié2.0is
the only MPC knee guaranteed to be water resistant and protected from
occasional contact with water. Two rechargeable batteries that are simple
to swap out, plus a car charger, are included for convenience. An intuitive
and easy-to-use Plié 2.0 Setup Wizard assesses each user’s unique gait
dynamics to ensure optimum performance. Typically requiring less than 20
minutes for a complete setup, the Wizard guides the process and automates
the settings, making the fitting process highly efficient.
CONTACT YOUR PROSTHETIST FOR PRESCRIPTION SUITABILITY
Orthopaedic Techniques Pty Ltd
T: 03 9416 3001 F: 03 9419 9682
15
TRADING UP
A CLOSE UP LOOK AT
PROTHETIC FOOT
TECHNOLOGY
Often, when an amputee walks into
a prosthetic office to be fitted for an
artificial leg, they don’t get offered a
choice of what kind of foot is used.
Why? One reason is that if you are
funded on the public ALS (Artificial
Limb Scheme) system for your
state, the funding is restrictive and
therefore there aren’t many options
available (other than very basic
ones) to you on the limb scheme.
Rather than disappoint you with
options that would not be covered,
clinicians don’t always discuss
better componentry.
Another reason, whether you are a
public or privately funded patient,
is that we simply don’t ask the
questions. It surprises me that I
don’t see that many amputees
involved in their own healthcare.
Look at it this way – would you
ever shop for a car like that? Would
you meet a car salesman, have a
10 minute chat and then ask him
to pick out a car for you and then
simply drive off? Of course not. You
would want to see some options
and make an informed decision. You
spend more time and effort picking
out a car than a leg and I bet
most of you spend a lot more time
walking on your leg than driving in
a car!
With that in mind, we should take it
upon ourselves to learn more about
the options that are available to
us. Technology changes at a rapid
16
pace (like most things these days)
and it can be tough to keep up. As
an exercise, I will take a look at two
feet for comparison. They are the
Flex-Foot® Assure and the FlexFoot® Variflex. (Please forgive me
for using Ossur products here, but
it wouldn’t be appropriate for me
to discuss another manufacturer’s
products and risk getting the details
wrong.)
Both the Flex-Foot® Assure and the
Flex-Foot® Variflex are carbon fibre
feet. This material is used because it
is lightweight, flexible and provides
great energy return. They both are
designed with a “J” shape that
helps the foot to open and close
when it is loaded and unloaded
which makes the foot act like a
spring to absorb shock and propel
you while you walk.
Flex Foot® Assure
The Flex-Foot® Assure is the
more basic design of the two. It is
mostly designed for stability and
comfort and indicated for amputees
that perform activities that are
relatively low impact. While you
can be quite active on the Assure,
it is really designed for tasks such
as moderate walking and basic
ambulation.
does touch on the sensitive topic of
finances and obviously upgrading
components might require
additional funds, but I would rather
let that be my choice rather than
one that is made by a prosthetist
or funding group for me.) Most of
the manufacturers offer a 60-day
trial on feet. So, inquire at your
local prosthetic clinic about trialing
different products. In this article
I talked about a couple of Ossur
products, but there are several
other manufacturers out there who
have comparable products to check
out.
Flex Foot® Variflex
The Flex-Foot® Variflex picks up
where the Assure leaves off and is
a higher quality product. While the
shape is similar, the grade of carbon
fibre is much better and is therefore
more dynamic and durable. This
means that the Variflex is better
suited for all walking speeds and
capable of higher energy return and
impact levels. It is appropriate for all
levels of activity from basic walking
to sports and situations that require
a range of loading such as carrying
weight, running and jumping. The
Flex-Foot® Variflex is also much
more adjustable for customizing how
it walks to your preference and it has
a “split toe” design which helps the
foot adjust to uneven terrain.
.
Of course these advantages come
at a cost, and that is why the FlexFoot® Assure is covered by the
ALS in most states in Australia,
but the Flex-Foot® Variflex is not.
For this reason, you are much less
likely to hear about the better grade
equivalent unless you ask about it.
The internet is a good place to
start and most manufacturers have
pretty detailed information on their
websites that tell you all about their
prosthetic products. Of course, they
will tell you about the features and
benefits, but not always whether
or not they are appropriate for you.
Fellow amputees are often another
excellent resource if they are using a
product you are interested in trying.
First hand opinions are helpful, but
again, their requirements might be
different to yours. To determine if
a product is suitable, you should
always consult with your prosthetist
in a certified clinic.
So, what does this mean to you?
Essentially, there are a few small
features that can mean a big impact
on your quality of life. Features like
the ones described here may or
may not matter to what you need
from a prosthesis. If they don’t,
then the basic stuff will suit just fine.
If some of the other features will
benefit you though, you might want
to consider giving it a look. (This
My purpose here is not to sell
you on a foot. It is to sell you on
awareness. As an amputee, I ask
questions about my care. Heaps
of them. (That is probably why I do
what I do for work). I encourage you
to do the same. This is merely an
example of how to learn about your
options and potentially “trade up” to
a higher standard of care. But don’t
take my word for it – ask.
Matt Henderson is a right, below knee amputee. He formerly served as a certified peer
visitor with the Amputee Coalition of America (ACA) and team member of the USA
Paralympic Development Team for Triathlon. Matt currently works for Ossur Asia-Pacific
as a Technical and Marketing manager and is based in Sydney.
17
PUTEE
Coach
READERS COLUMN
Ask the Amputee Coach
Empowering
YOU to Walk
Well, Be Fit
& Enjoy Life!
Limbs 4 Life have teamed up with Physiotherapists
Cathy Howells and Sandra McFaul to develop a new
reader’s column for Amplified - Ask The Amputee
Coach. This exciting column will provide you with an
opportunity to ask specific questions regarding living
life as an amputee.
To send in your questions for the next instalment
“I am genuinely ex
cited
about this book”
Adam Hills
Foreword by Adam
(Comedian, Spicks
Hills
& Specks - ABC)
Cathy Howells
Please write to:
ASK THE AMPUTEE COACH
P.O. Box 282 Tunstall Square,
East Doncaster 3109
email: [email protected]
Phone: 1300 782 231
with
Sandra McFaul
PICKING THE RIGHT SHOE FOR YOU.
Good fit, comfort and function in a pair of shoes are as important as the fit, comfort and function of your prosthesis. Many amputees are unaware
of the qualities to look for in a “good” pair of shoes, let alone where to get them. The wrong shoes can seriously compromise the health of your
remaining foot and in some cases interfere with the functioning of your prosthesis.
Since the last edition of Amplified, I received an email from Robyn on this topic:
“I know this is a trivial question but is there a list of bootmakers or retailers (between Sydney/Newcastle) that provide/make shoes that will fit a
prosthesis (foot). I am finding it very distressing trying to find nice shoes that can be both comfortable on my left foot and worn safely on the
prosthesis. I am about to have my second leg cast and have just sadly parted with all my pre-amputation shoes/boots.”
Pointers for selecting the best type of shoe for you are outlined in Chapter 6 of The Amputee Coach; but briefly, a well-fitting shoe must support
the foot without causing any rubbing or blisters and the sole should be made of a material that assists in shock absorption and is nonslip.
When I worked at the Royal Prince Alfred Hospital Amputee Unit, we would often recommend that patients with foot fitting difficulties try a
company called Comfort and Fit. They still exist today and have expanded their branches.
Their website is www.comfortandfit.com.au
The other point to note from Robyn’s email is that it is a good time to review your shoes before your new prosthesis is made. This is because
the alignment of the new prosthesis is dependent on the heel height of your footwear. Changing heel heights without making the necessary
adjustments to your prosthesis can cause instability when walking. Always check with your prosthetist if you feel there has been a change in your
walking pattern after changing shoes.
AMPUTATION AFFECTS MORE THAN THE PHYSICAL BODY.
Sadly this is a fact that many amputees discover because they may be physically progressing with their rehabilitation and yet still feel something
is missing from their care.
Jan wrote in with some very insightful comments on this matter:
“I became an amputee in February last year and started walking in January this year. My problem is vascular and diabetes. I read your book and
was so impressed. The thing that got me was the beginning where you started with the emotional, not the physical.
I had to ask for counselling after my operation. As I was a nurse I knew it was important. Peer Counselling is important and not enough emphasis
is given to the emotional side of things.
I will be doing the peer support training at ...... in a few weeks so I hope to help any way I can. Sometimes you just need someone to show you
that there is a light at the end of the tunnel and that you will get your life back.”
If you feel like your emotional and social issues relating to your amputation have not been adequately addressed then make sure you seek out
counselling with your clinic team, doctor or peer support person.
I’d like to thank Robyn and Jan for their input to this issue’s column. Because it’s the first one they will both receive a prize of an Amputee Coach
Book, which has been generously supplied by Limbs 4 Life.
We are thrilled that this column is to be a regular feature in Amplified, so keep sending your questions, comments and feedback to us at
[email protected] and join us on facebook. It’s only through communication that we can support each other to
“Walk Well, Be Fit and Enjoy Life.”
Until the next edition of Amplified
Cheers
Cathy Howells
On behalf of The Amputee Coach Team.
18
Warwick’s Giant Ride for Limbs 4 Life
A NEAR tragedy inspired young cyclist Warwick McGhee to undertake the ride of his life – two years after the accident which
changed his life forever.
On Boxing Day, 2008, Warwick took his sister Rebecca for a ride on his motorcycle. The pair were involved in a serious accident
which resulted in the amputation of Rebecca’s right leg.
“The ride was my ode to amputees, as it symbolised the qualities of perseverance and strength of people like my sister,” he said.
“This journey is dedicated to Rebecca and all of those in a similar situation to her.” Warwick’s ride created awareness for amputees
and raised funds for Limbs 4 Life.
On January 3 Warwick set out from Bendigo to ride 3,336kms across the Nullarbor to Perth. Supported by his brother Chris and
girlfriend Kira, Warwick rode in to Kings Park Perth on February 5, right on schedule. Warwick was joined by Western Australian
cyclists, amputees and supporters to celebrate his arrival.
Limbs 4 Life EO Melissa Noonan said that Warwick’s achievement was remarkable, especially given his age. “For a young person
to undertake such an epic journey, it’s an amazing achievement,” she said. “But to plan and carry out this ride to raise funds and
awareness for amputees across Australia - that’s something that is truly remarkable. We’ve had enquiries from areas across
Western Australia in the past few days from amputees who have become aware of us through Warwick’s ride - he’s an amazing
young man.”
Congratulations to Warwick and the team on an outstanding achievement. To read about the event and Warwick’s entertaining
blog, visit www.warwicksgiantride.com.au
Thank you Samantha and the WA contingent for all your effort and hard work supporting this event, and for making Warwick’s
arrival into your state a memorable one.
Sale to Sea
This year’s Sale to Sea event has attracted over 50 paddlers with representatives from Victoria Police, Ambulance Victoria, local
councillors and a local MP, not to mention the disabled kayakers who will paddle the 120kms from Sale to Lakes Entrance.
Andrew Bedggood, founder of Sale to Sea, is marvelling at the support and interest in the event. “The youngest entrant is six years
old and our oldest will turn sixty five while paddling” said Andrew. The purpose of the event is to show people living with a disability
that anything is possible. Funds raised will be donated to Limbs 4 Life.
Sale to Sea March 16 -19. For more information contact Andrew Bedggood on 0407 471539 or follow Sale to Sea on
Facebook.
19
PREVENTING SKIN CANCER
give more, give smarter, give better,
GIVE NOW!
We all want to give, but sometimes it’s hard to
know how to get started.
GiveNow.com.au is Australia’s most user-friendly
giving portal – a place where you can put your
dollars to work to start building the kind of world
you want to live in.
No money? No worries! Through GiveNow.com.
au you can also find out how to give time, blood,
clothes, blankets, computers, mobile phones,
bikes, even corks!
The GiveNow.com.au Manifesto
GIVE MORE
You can give more – more of your time, your skills,
your resources, your connections, your money.
What did you give last year? What will you give
this year?
GIVE SMARTER
Before you dip into your pocket or sign up as a
volunteer, think about it – is this the best possible
use of your money and time? Will this action help
to create the sort of world you want to see? If not,
what is?
GIVE BETTER
You already know the causes you believe in – the
ones that align with your values, the ones you
want to contribute to. But what’s the best way of
converting your good intentions into solid action
for change
GIVE NOW!
You have the power to make a difference, to
build a better community, to shape our country,
our world. GiveNow.com.au is the place to go to
find the tools, ideas, inspiring stories and practical
tips you need to convert your good intentions into
action.
Limbs 4 Life are a registered charity on the
GiveNow website to contribute go to:
www.GiveNow.com.au
SunSmart UV alert
The SunSmart UV Alert is reported in the weather section of daily
newspapers and on the Bureau of Meteorology website. www.bom.gov.au/uv
Issued by the Bureau when they forecast a UV Index for the day of three or
above, the SunSmart UV Alert identifies the times during the day when sun
protection will be needed.
Protect your skin
For best protection, we recommend a combination of sun protection
measures:
1. Slip on some sun-protective clothing – that covers as much skin as possible
2. Slop on broad spectrum, water resistant SPF30+ sunscreen. Put it on 20 minutes before you go outdoors and every two hours afterwards. Sunscreen should never be used to extend the time you spend in the sun.
3. Slap on a hat – that protects your face, head, neck and ears
4. Seek shade
5. Slide on some sunglasses – make sure they meet Australian Standards
Extra care should be taken between 10am and 3pm when UV levels reach
their peak.
www.cancer.org.au
Cancer Council Helpline 13 11 20
Extra care should be taken between 10am and 3pm when UV levels reach
their peak.
www.cancer.org.au
Australian
Senior Publications
website
Cancer Council
Helpline 13 11
20
Ritchies
stores
operate
throughout
Victoria,
NSW andthe
Queensland.
We are Australia’s premier newspaper group targeting
over 50’s
For more information on the program go to
demographic. Our six publications present inspirational, insightful and
http://www.ritchies.com.au/benefits.html
informative articles across a broad range of topics and issues related to older
Australians. Every month our full colour Senior Traveller supplement is full of
holiday destinations and travel ideas aimed at the mature traveller.
To access any of our state based newspapers or the Senior Traveller
go to ww.thesenior.com.au
20
SAILABILITY
Sailability encourages and facilitates sailing and boating
throughout Australia for people with disabilities in social,
recreational and competitive activities. Welcoming people of all
ages and abilities to the joys of sailing in a straightforward, fun,
inexpensive way in a supportive environment. Community based
Sailability Branches are continually being established around
Australia with some located at existing yacht clubs and others
operating independently.
Most of our sailors just enjoy the freedom and
fun of recreational sailing and the supportive
social atmosphere, but there are also plenty
of opportunities for the more competitive to
develop their racing skills.
To find a club near you visit the website
www.sailability.org
AMPUTEE
GOLF CLINICS
Limbs 4 Life the PGA Learning Centre & Sandhurst Club invite you to take part in our
Amputee Golf Clinics.
In collaboration with the PGA Learning Centre, Limbs 4 Life is excited to announce the
commencement of ‘Come & Try Golf Clinics’. The PGA Learning centre will work to create
specific teaching methods to suit the different levels of amputation. The clinics will cover
technique, etiquette, rules and different game formats.
So if you are a regular golfer, new golfer or have never tried golf before but would like to, this
is the perfect opportunity to come and have a go with other amputees. Golf is a wonderful
sport for amputees as it assists with balance, flexibility, core stability and it’s a great social
outlet.
Clinics will be held at;
Sandhurst Club (practice range directly in-front of the clubhouse)
680 Thompson Road Sandhurst (easy access via Eastlink)
Clinics are held on the first Saturday of every month. For further information please contact us
PH:1300 782 231 or [email protected]
21
Peer Support
Becoming an amputee is a
challenging experience for each
individual. Losing a limb can be a
time of fear and uncertainty. One
of the most important sources of
emotional support can come from
family and friends, however they
may not always know the right thing
to do or say. Like you, they are
also trying to make adjustments
and gain a better understanding of
what lies ahead. A peer support visit
can sometimes fill this gap. Limbs
4 Life peer support volunteers are
all amputees who have lived with
limb loss for a number of years and
regained their independence.
The Limbs 4 Life Peer Support
program was established to provide
new amputees and their families with
access to trained volunteers. The
program matches new amputees or those about to lose a limb - with
a volunteer who has experienced
a similar amputation. Speaking
with a peer support volunteer can
play an important part in a new
amputee’s recovery and rehabilitation.
Peer support volunteers can offer
encouragement, information and
guidance. They can help to alleviate
feelings of isolation, depression and
most importantly, provide an ear to
listen. Whether the cause of your
limb loss was diabetes, vascular
disease, cancer, trauma or infection,
it can be comforting to discuss your
concerns with someone who has
been in a similar situation.
Our program is based on a model of
mentoring that has been used for a
number of years for many different
health and wellbeing issues. It
compliments the services provided
by medical professionals, who in
turn have praised the program for
its effectiveness in assisting patients
and their families with adjusting to
their new lives. Many amputees
have reported that receiving a visit
from a peer support volunteer was a
rewarding experience, one that gave
them the chance to speak openly
about how they felt, to address their
issues and concerns, and to alleviate
the fear of the unknown.
Limbs 4 Life peer support volunteers
participate in a comprehensive
training program. The program
For further information contact Limbs 4 Life 1300 782 231
AMP-Link forum
www.limbs4life.com/Amp_Link
22
includes presentations, discussions
and workshops dealing with effective
communication, empathetic listening
skills, organisational policies and
the resources available to assist
amputees and their families.
The Limbs 4 Life one-on-one
peer support program currently
operates in Victoria, South Australia
and Tasmania. For anyone living
outside of these areas Limbs 4 Life
can arrange phone support. Peer
support volunteers are able to either
visit new amputees in hospital and
rehabilitation centres, or to conduct
discussions over the phone. Online
support is also available and
especially affective for those living in
remote or regional communities via
the AMP-Link amputee forum on the
Limbs 4 Life website.
Limbs 4 Life can assist with:
• ONE-ON-ONE PEER SUPPORT VISITS
• INFORMATION AND RESOURCES
• SOCIAL ACTIVITIES AND CONNECTIONS
• RESEARCH AND PUBLICATIONS
Limbs 4 Life supporting amputees
1300 782 231
THE MAIN CAUSES OF
AMPUTATION ARE
Diabetes
Vascular Disease
Cancer
Trauma
Infection
Congenital differences
Help support Limbs 4 Life make your donation today