tim matthews unleashed!

THE OFFICIAL MAGAZINE OF LIMBS 4 LIFE
VOLUME 9 / SPRING 2007
LIMBS 4 LIFE CO PATRON:
TIM MATTHEWS
UNLEASHED!
ISSUE FOCUS:
CANCER &
LIMB LOSS
Support services,
research & profiles
THE OFFICIAL MAGAZINE OF LIMBS 4 LIFE
TABLE OF CONTENTS
PAGE
04
PAGE
THE SARCOMA SERVICE
& ONTRAC@PETERMAC
Kate Thompson
08
LIMBS 4 LIFE
VOLUNTEER
Annie Pateman
FEATURE STORIES:
MESSAGE FROM EXECUTIVE DIRECTOR - MELISSA NOONAN
05.‘A Helping Hand’ - A new
resource to support cancer
patients and their families
06.Helping people with concerns
about cancer - Edwina Beddoes,
The Cancer Council Victoria
Well what a difference a
little colour can make!
to the amputee community, and
together as a team we would.
Welcome to the new look
Amplified. I know that each
one of you will join me in
congratulating the team on
the fantastic effort they have
made to take our publication
to the next level.
Limbs 4 Life will continue to work
to ensure that no amputee need
go through the process of limb
loss alone. We will also bring you,
the reader, enlightening articles,
current information and
personalised stories which
many of us can relate to,
reflect on and be inspired by.
10.Australian Amputee Golf
Champion - Shane Luke
13.Working with amputees - Chris
Shannon, Prosthetics Technician
14.Limbs 4 Life Co-patron
Tim Matthews Unleashed
16.Amputation in the case
of cancer: A case study,
Monash University
COLUMNS:
03.From the Editor
18.The Amplifier - Be heard!
Readers’ Column
From the day I made the
decision to commit myself
to the vision of Limbs 4 Life,
my own life had changed
enormously both mentally
and physically.
Knowing that I am a part of
a dedicated and passionate
group of people is a humbling
experience.
Jacinta and I never doubted
that the organisation would
become what it is today. In
our heart of hearts, we always
wanted to make a difference
REGULARS:
12.A Closer Look at Componentry
- Hip Joints, Stuart Crampton
19.Limbs 4 Life News
20.Your Community
21.Sport & Activities
22.Book Review – One Unknown
02
SUBSCRIBE TO AMPLIFIED
Amplified is distributed nationally by mail and
e-mail. To receive your copy of Amplified please
register your details by calling: 1300 782 231
Alternatively visit www.limbs4life.com
and click on the Contact Us page.
THE EDITOR - JACINTA DYSON
If somebody had told me five
years ago that I would co-found
Limbs 4 Life, become the Projects
Manager and compile and edit
Amplified, there is no way I would
have believed it! Then again,
knowing myself (as thankfully only
I do) I just might have.
My connection with amputees
began when I was working at the
Royal Talbot Rehabilitation Centre
four years ago. It was during
my time there ( in the amputee
physiotherapy gym to be precise),
that I met Melissa, co-founder
and Executive Officer of Limbs 4
Life. When I first met Mel, I can
honestly say that there was a knot
in my stomach. It was so obvious
just how difficult her journey from
the trauma ward to rehabilitation
had been. I worked with Mel over
the following six months in physio.
It was a profound experience to
witness her sheer determination
to overcome pain, build up her
strength and walk independently.
Despite the severity of her physical
injuries, Mel’s positive outlook
had a lasting impact on all those
around her, patients and staff
alike. Mel certainly had a profound
effect on me, and if it wasn’t for
our meeting, I am almost certain
I wouldn’t be sitting here writing
this column now!
During our daily sessions, Mel and
I had many conversations about
the need for greater information
and support for amputees in
our community. Twelve months
later, we pooled our resources
and created Limbs 4 Life, not to
mention an enduring friendship.
On reflection, the journey
over the last three years has
been incredible. This amazing
organisation started as a
conversation, and has now
surpassed many of the goals
and expectations that we set
during those foot massages
and gym sessions! There
are so many people who
have helped Limbs 4 Life to
develop and succeed, and
as the organisation expands,
so too has the support from
much of the community.
I have immensely enjoyed
bringing Amplified to life over
the last nine issues. With
each edition I learn something
new, and it brings with it the
opportunity to meet so many
inspirational readers and
contributors.
Countless individuals and
organisations have played
a part in the success of
Amplified. I’d like to offer my
sincere gratitude to Niagara
for enabling us to publish in
full colour and for funding
Amplified over the next twelve
months. I would also like to
thank Marc Mundy, Jenny
Gore (our amputee artists!)
and Troy Laws-Herd for their
ongoing creative involvement
in the design and layout of
Amplified. Thanks also to
Tully Machtynger and Tarone
Van Niekerk for their editing
support.
Finally, I would like to thank
all the contributors who
share their experiences and
knowledge, making Amplified
the unique and specialised
publication that it is.
I hope you enjoy Volume
9 of Amplified as much as
I have enjoyed putting it
together.
AMPLIFIED
Volume 9 / Spring 07
Issued quarterly
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: (03) 9886 8269
E-mail: [email protected]
Web: www.limbs4life.com
Editor: Jacinta Dyson
Design: Marc Mundy, Jenny Gore,
Troy Laws-Herd
Photography: Troy Laws-Herd,
Shannon Reddaway
Printing: Dynamite Cards™
Design and Print
LIMBS 4 LIFE MISSION
Limbs 4 Life aims to empower
every amputee with information,
knowledge and support and
ensure that no amputee has
to “go it alone”
FOR ADVERTISING ENQUIRIES PHONE:
Jacinta Dyson 1300 782 231
Next Issue: Summer 2007
Submission deadline: 19th October
Distribution: 7th December
Information and articles contained in Amplified
are intended to present useful and accurate
information of a general nature but are 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 health care 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 Inc.
03
The Sarcoma Service
Kate Thompson
Cancer is the leading cause of death in Australia, directly affecting one in three
men and one in four women before the age of 75. However, an explosion in cancer
knowledge and discovery has occurred in recent times, fuelling an exciting and
unequalled era of cancer survivorship and an even more promising future.
complex. With a rare and complex
disease such as sarcoma,
development of expertise can
sometimes be difficult. Better
outcomes and improved survival
rates may be found with
management in specialised
centres.
Our understanding of the biology
of cancer is growing exponentially,
and new medical technologies and
techniques continue to improve.
Although recent advances have
generally led to less invasive
treatments, some people still
unfortunately require limb
amputation. As a result, cancer
remains one of the more common
reasons for limb amputation,
especially for upper limbs.
Sarcomas are the leading cause of
cancer-related limb amputations.
Sarcomas are cancers of
connective tissue such as bone,
cartilage, muscle, fat, nerve,
blood vessel and deep skin
tissue. These cancers are rare,
occurring in approximately 4 per
100,000 of the population and
accounting for only 1% of all
cancers. As connective tissue
is present throughout the body,
sarcomas can occur in any
location, although two-thirds are
located in the extremities (arms or
legs). As sarcomas are rare and
can take multiple forms in multiple
locations, they are often difficult
to diagnose and treatment can be
04
The Peter MacCallum Cancer
Centre is unique within the
Australian public health system.
It is the only Australian hospital
solely dedicated to cancer, and
one of just a few outside of
the US that has its own cancer
research division. Home to over
400 scientists, it is the largest
dedicated cancer research group
in the southern hemisphere. Over
the last 50 years, Peter Mac has
built an international reputation
for excellence and innovation in
cancer research, treatment and
care and continues to dedicate
itself to helping more people
survive cancer.
The Sarcoma Service at Peter
Mac comprises a multi-disciplinary
team skilled in the care and
management of this group of
patients. It is closely linked to
the Orthopaedic Service at St
Vincent’s Hospital, Melbourne.
The team includes a pathologist
who examines cells from the
“biopsy” or tissue sample under
a microscope, an oncologist
who prescribes and monitors
chemotherapy if required, a
surgeon to remove the tumour,
and a radiation oncologist who
oversees any radiation treatment.
Other health professionals
providing support include
physiotherapists, social workers,
occupational therapists,
dieticians, psychologists
and specialist nurses.
Patients with soft-tissue sarcomas
are treated with radiotherapy
followed by surgery. Patients with
bone sarcomas are treated with
chemotherapy followed by surgery
followed by further chemotherapy.
Modern treatment of these
cancers and advances in surgery
mean that many people with
sarcomas are now able to have
limb-sparing surgery instead of
amputation. For some people,
however, amputation of a limb
may be necessary to treat their
cancer. For individuals requiring
an amputation, a careful plan
of care focusing on the best
quality of life is discussed. It is
likely that there will be a period
of emotional adjustment, and it is
acknowledged that losing an arm
or a leg can feel like bereavement.
The option of pre-operative
counselling is included in the
management of these individuals
in addition to the physiotherapy
and occupational therapy input, as
overseen by the surgeon.
There are many supports and
services available to individuals
following a cancer diagnosis.
Oncology social workers are
available at all treatment centres,
and can assist individuals
following a cancer diagnosis.
The Cancer Council Help line
can be contacted on 131120 for
information and support.
Kate Thompson
Kate Thompson,
Senior Social Worker, Sarcoma Service,
Peter MacCallum Cancer Centre
Dr Ken Khamly,
Medical Oncologist, Sarcoma Service,
Peter MacCallum Cancer Centre
OnTrac@
Petermac
Australia’s leading multidisciplinary service for
adolescents and young
adults living with cancer.
The physical, emotional and
social challenges facing young
people with a diagnosis of cancer
remain among the most difficult
faced by patients, families and
health care providers. Young
people with a cancer diagnosis
face a completely different set of
challenges from those of older
adults and children. onTrac@
PeterMac is a multi-disciplinary team including medical staff,
social workers, psychologists,
specialist nurses, education
advisors and researchers. All
team members are experienced in
working with young people, and
understand issues that are unique
to this age group.
The onTrac@PeterMac Team
works with other hospitals to
provide additional support and
services to any young person
undergoing cancer treatment in
Victoria. Some of the services
provided by the program include:
•Clinical assessments
•Patient supportive therapy
•Adjustment, depression,
and anxiety support
and management
•Family therapy
•Relationship counselling
•Grief and bereavement
counselling
•Fertility and sexual
health management
•Education support
•School tutoring
•Employment support
•Legal assistance
•Financial assistance
•Peer support
•Support groups
•Written information on
relevant treatment topics
To learn more about onTrac@
PeterMac program:
Call 9656 1744, or
Visit www.petermac.org/ontrac, or
E-mail [email protected]
A helping hand
A new valuable resource for cancer patients, families and care givers
The period directly after diagnosis
can be particularly confusing
for cancer patients. Some feel
numb and are not ready to
discuss the situation until they feel
ready. Others look for immediate
answers, researching everything
they can. With an enormous
amount of information available as
printed material, word of mouth,
or on the Internet, this process
can be a little daunting.
A Helping Hand is a DVD resource
designed to help you get the right
information, when and where
you want it and in your own time.
Disc 1 offers a comprehensive
interactive journey that allows
you to click on the segment most
relevant to you. Disc 2 contains
unedited personal stories shared
by the many cancer patients who
were kind enough to open their
hearts.
awareness and educating people
about cancer.
All content has been developed
under the guidance of the
Cancer Council Victoria. It gives
an accurate picture of what to
expect, where to go for help and
ways for you and your immediate
family, friends and spouse to best
deal with the situation.
After all, you are not alone.
With cancer survival rates at an
all time high, and with Australian
clinical, diagnostics, healthcare
and research teams that rank
among the best in the world, there
are an awful lot of people ready to
offer you A HELPING HAND.
To order a copy of A Helping
Hand, call the Cancer Helpline on
131120 or visit the website:
www.helpingonline.com
Limbs 4 Life peer support
volunteers will provide A Helping
Hand in patient information packs
for those who have experienced
limb loss due to cancer.
The DVD was produced with
funds generously donated by
the Picchi Brothers Foundation
in Melbourne, a not for profit
organisation dedicated to raising
05
Helping people with concerns about cancer
The Cancer Council Victoria is committed to helping people affected by cancer.
Cancer nurse, Edwina Beddoes talks about providing information and emotional
support to callers to the Cancer Council Helpline.
As a cancer nurse with more than
twenty years oncology experience,
Edwina Beddoes knows the
importance of providing relevant
information and emotional support
to people affected by cancer. She
began working on the Cancer
Council Helpline five years ago,
and describes the Helpline as a
critical service that helps people
deal with concerns about cancer.
“The Helpline is accessable to
anyone worried about cancer”,
explains Ms Beddoes. “Callers
can ask questions ranging
from prevention, diagnosis and
treatment, through to living
with the side effects of cancer
treatments and coping
with advanced disease. We
address issues with evidencebased information and give
callers an opportunity to
express their concerns.”
“As calls are caller-focused, some
people ring with specific questions
that need to be addressed. Other
times callers will say, ‘I don’t
know what I need to know’, so it’s
helpful to ask how they got here.”
06
With Helpline hours extended
to 8.00pm Monday to Friday,
Edwina said more people are
able to access the service. “Many
of the issues callers have are
of a sensitive nature, and in the
past they have found it difficult
to ring with queries because of
discomfort ringing due to work
commitments and privacy issues.
We also receive many calls from
carers who, due to the constraints
of their caring role, are unable to
call until later in the day.”
Edwina says after-hours calls
tend to be longer, and many
people talk of feeling alone and
isolated. “Often callers express the
value of feeling heard and being
able to say how they feel at that
moment. Because the service is
anonymous, many callers open up
and express feelings, fears and
thoughts that they may never have
talked about before. By telling
their story, callers can often clarify
issues and share their journey.”
The Cancer Council Helpline
is a free, confidential service.
Telephone 13 11 20
Monday-Friday 8.30am-8.00pm
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Meet Limbs 4 Life Volunteer:
Annie Pateman
My name is Annie Pateman. I am married to Dave and we have two adult children,
Luke 29 years old and Jessica 26 years old. I am a left leg above knee amputee
and have been since 1980.
It was October 1978. I recall
playing squash and stretching for
a shot of the ball, falling to the
floor and crashing into the metal
on the wall. Bang. My knee had
smashed into it.
the ache became a lump the size
of a tennis ball on the inside of my
left knee. The pain was intense
and I could hardly walk.
Fool’s Day), I was diagnosed with
Ewing’s sarcoma (bone cancer)
– a condition commonly found in
children.
From that day onwards my
knee was never the same.
It started with an annoying,
incessant, aching.
12 months after the squash
incident, we moved to the country
near Traralgon. I became pregnant
with my second child and during
the pregnancy my symptoms
accelerated.
Over the next 18 months, I had
been treated for a number of
conditions including a strained
knee, bursitis, and arthritis until
26 years old and 26 weeks into
my pregnancy, I was checked
into hospital and, after a biopsy
on the 1st April 1980 (yes, April
Because I was pregnant, I could
not take any medication for pain
relief and I found myself wishing
for my leg to be “chopped off”.
My thoughts were that the pain
will go, the baby will be born and
I could then move on with my life,
learn to walk, continue looking
after my husband, young son
and new baby.
08
“The support and encouragement from my family has enabled me to achieve all that I have wanted to achieve and more.”
As it turned out, my leg was
amputated on Good Friday – 4th
April 1980. I was told that there
was a strong possibility I would
miscarry due to the trauma of the
surgery.
Well, the bonus we received was
that our unborn baby survived the
surgery. This posed a dilemma
for the medical team (surgeon,
paediatrician and gynaecologist).
They wanted to start the rest of
my treatment (chemotherapy and
rehabilitation) immediately after
the amputation, but they were
concerned for the safety of the
pregnancy.
After much consultation, it was
agreed that the baby would be
induced at 32 weeks. Fortunately
at that time, I was ignorant of the
risks and health problems endured
by premature babies.
Prior to going to the Royal
Women’s Hospital for the birth,
the surgeon arranged for a young
lady to visit me. She was 19 years
old, and an above knee amputee.
Meeting her was a turning point.
This young lady inspired me no
end. She played netball and iceskated. I was determined to walk
again. I thought, “if she can do
that, the possibilities are endless
for me”. I was back on the squash
court eight months after losing
my leg.
Four weeks later, it was time to
have the baby. Dave took me
to the Royal Women’s Hospital
where, on the 8th May 1980,
Jessica was born (a healthy 3½
lb and 11” long – and less than
the length of a ruler). She was
determined to make her way into
this world.
Both Jessica and I required blood
transfusions. Some time after
it was announced that a new
disease had been discovered
called HIV, and all blood products
needed to be screened. Infected
blood was around at the time of
our transfusions. Again, Jessica
and I survived that throw of
the dice.
mainly through ten-pin bowling
in the National Disabled Ten-pin
Bowling Championships and State
tournaments. I have had success
in winning a number of medals in
team and individual events, and
meeting people with all forms of
disabilities.
Jessica stayed at the Royal
Women’s Hospital for eight weeks,
and I started my 12 months of
treatment and rehabilitation at
Hampton Rehabilitation Centre.
This was the most difficult part to
deal with, leaving Jessica behind
in the hospital alone, as well as
being separated from Luke.
I have also played at Dandenong
Bowls in a team with able-bodied
bowlers. I enjoy swimming, have
attempted golf and even climbed
Mt Kosciusko.
During rehab, I learned to walk
with my new leg, which was
made from spare parts. A trolley
was developed for me out of
pine, which would assist me to
transport Jessica around the
house. Being a new amputee,
I didn’t have the skills or the
confidence to hold a brand new
baby whilst walking, so she was
wheeled around from room
to room.
I also learnt domestics such as
cooking standing on two legs. I
have never forgotten practising
carrying two cups of tea up and
down the gym during rehab.
I remember swimming successfully
for the first time as an amputee.
When I called my husband to tell
him about this major achievement,
instead of getting the words
of encouragement that I was
expecting, he asked me if
I went round in circles.
We both laughed.
Fast-forward 26 years. I work
full-time for a pharmaceutical
company and drive to work every
day. I have been involved with the
Amputees Association of Victoria,
I have just joined a gym for ladies
called Curves, which I attend
three times a week. This particular
gym really suits my disability. My
stamina, flexibility and strength
have already improved in the eight
weeks since joining.
My latest venture is travel. Dave
and I recently travelled to England
and Europe for six weeks, and I
travel to the NSW Central Coast
where Jessica now lives with
her partner. The advantage of
travelling with a disability is being
treated as a first class passenger
and not having to wait in queues.
The support and encouragement
from my family has enabled me to
achieve all that I have wanted to
achieve and more. My sister was
there for me at the drop of a hat.
I now look forward to becoming
a valued volunteer team member
joining Mel, Jacinta and the rest
of the team at Limbs4Life. I hope
to assist and inspire new patients
to meet their challenges and
demonstrate that you can live a
much fulfilled life, as the young 19
year old lass (who would now be
45), inspired me.
Cheers,
Annie
09
Shane Luke
Australian Amputee
Golf Champion
At just 15, Shane Luke lost his right
leg above the knee due to bone
cancer. Shane’s limb loss, however,
has not impinged upon his dream
of becoming an internationallyacclaimed golfer.
Throughout his youth, Shane
always held a passion for sports.
He started playing golf with his
father when he was 12, initially on
a handicap of 25. By the time he
was 15, Shane was playing off a
handicap of 10, but his sport was
to come to an unexpected halt
after being diagnosed with bone
cancer.
Championship, where he defeated
Geoff Nicholas. “Being the first to
defeat Geoff in amputee golf was
a personal highlight considering
Geoff’s talent and many
championship titles worldwide.
Geoff has shown us the way. To
become a professional and play
on the tour is something I dream
about.”
After the loss of his right leg and
while still receiving chemotherapy,
Shane’s father took him to the
local driving range. His father teed
the ball up and Shane hit it while
balancing on his left leg, not falling
over once. His father was amazed.
Since that moment he has never
looked back, and his passion for
golf continues.
Shane won his third consecutive
Australian Amputee Golf
Championship in Port Stephens
last March. He was challenged by
33 participants from New Zealand,
the United Kingdom and Australia.
He was thrilled that Open
Champion Brett Ogle from the Golf
Show on Fox Sports watched the
last few holes at the Australian
Championship, and included a
segment on the Golf show.
The Milperra Sports Complex is
home to Shane’s busy training
schedule, and also where he
hopes to run golf clinics for
other amputees in the near
future. Having recently qualified
as an instructor with the AGTF
(Australian Golf Teachers
Federation), he will also be
available at Milperra Driving Range
for private after-hours lessons.
Shane is eager to attract more
competitors to the Australian
Championship, stating that the
event is open to all levels of
golfers (beginners included). “It
was great to play with Ben Tullipan
at the 2007 Championships.
Ben lost both legs in the Bali
bombings, and had only been
playing for 10 weeks prior to the
tournament”.
His sponsors, Otto Bock,
Taylormade-adidas and Milperra
Sports Complex have been an
essential element in his sporting
achievements. When he is not on
the driving range, his greatest love
is spending time with his family.
Shane is indebted to his wife
Helen and children Jason and
Scartett for their ongoing love
and support.
Now 35, Shane can strike a tee
shot 260 meters. Incredibly, he
has attained a handicap as low
as 1 and is currently playing
off a 4. His early technique has
continued as he chooses to take
his prosthetic limb off when he
plays each shot, balancing skillfully
on his left leg.
Achievements in his sporting
career include winning the
2002 World Amputee Golf
10
Shane was previously employed
by the Torch newspaper in NSW
where he worked for 17 years
as a Graphic Designer. He is
now working with the German
componentry company Otto
Bock as a service technician
for prosthetic knee joints. He is
looking forward to travelling to
Germany later this year for MYO
(electronic) hand repair training.
2007 Chrysler Australia
Victorian Amputee
Golf Championship
limbs life
22-23 November 2007
Tirhatuan Lakes Golf Course
Rowville
for more info call 1300 782 231 or email [email protected]
A Closer Look at Componentry
Prosthetic Hip joints
Prosthetic management of the hip, trans-pelvic and lumbar regions is a rare opportunity for
the treating prosthetist, and a significant challenge for the amputee. The physical loss, often
complex co-morbidities and the amount of energy required to walk with these prostheses
(~ 200% more than normal walking) can often mean that prosthetic management is overlooked.
The Amputation levels that would
require the use of a prosthetic hip
joint are any level where the femur
has been removed or is too short
to provide functional movement
and control over prosthesis. These
include:
• Very short Trans-femoral
amputation
• Hip disarticulation
• Trans-pelvic
• Hemi-pelvectomy or hind Quarter
• Hemi-corporectomy
• Trans-lumbar
The most common cause for this level
of amputation is the management
of aggressive bone and soft tissue
tumors. Traumatic loss at this level
is not unheard of, but quite rare due
to factors such as blood loss and the
multiple traumas associated with high
impact injuries.
What functions does a hip need?
The prosthetic hip needs to transfer
the weight of the body safely from the
socket to the ground via the knee,
ankle and foot. Just as importantly,
the hip must allow at least 90 degrees
hip flexion for sitting, whilst not overly
affecting the height or level of the
pelvis.
To achieve this, most modern hip
joints have an L-shaped anchor plate
that is attached to the front socket.
FIG 1
12
Prosthetic hip with internal spring
extension assist
This design enables hip flexion without that locked joints were unnecessary
in hip disarticulation/transpelvic
greatly impeding sitting balance.
prostheses (Van der Waarde &
(Fig.1)
Michael, Atlas of Limb Prosthetics
When compared to the functional
Chapter 21B, 1992).
variability of the prosthetic knee
joints (described in issue 7) the
Once the socket and hip design has
currently available hip joints are much been selected by the prosthetist,
simpler by design. The differences in the selection of the knee and ankle
available hip joints across prosthetic
components are similar to that of
suppliers are essentially quite small. above knee amputees (transfemoral).
Most hips have an extension assist
However, toe clearance when walking
of some design, be it an externally
is more difficult to achieve due to the
placed elastic band or an internal
passive nature of the prosthesis. This
spring mechanism as illustrated in
means that, generally, the hip or transFig. 1 and 2. In addition, some hips
pelvic prostheses are deliberately
have a simple locking mechanism
shorter than the sound side.
that prevents any movement whilst
The success of this often
standing and walking. (Fig.2)
cumbersome prosthetic management
Carbon Composite strut systems have relies on the comfort of the prosthetic
also been added to offer dynamic
socket, the alignment of the carefully
motion and some shock absorption
selected (patient-specific) prosthetic
during stance. These systems have
components and, most of all, the
also been reported to increase the
balance and motivation of the
speed with which the knee flexes for
amputee.
the swing phase. (Fig 3)
The design of the socket, foot and
knee used by the prosthetist will
have as great or a greater affect
over ultimate function than the hip
joint design alone. In the 1950’s,
Radcliffe’s biomechanical analysis of
the forces necessary for ambulation
led to the development of the
“Canadian” design (now the most
commonly-used), which demonstrated
FIG 2
Prosthetic hip with lock
FIG 3
Prosthetic Hip with carbon
composite strut
Working with Amputees
Industry Profile
Chris Shannon
Prosthetic technician
How did your involvement in
prosthetics begin?
Funny story, actually. I was a panel
beater in sunny England when I saw an
advert in the paper for a sheet metal
worker at Chas A Blatchford, which
I applied for and successfully got in
1970. Little did I know that the job was
for a prosthetic technician!
What does your job involve?
Manufacturing limbs (both upper and
lower) extremities. This includes:
• Draping plastic
• Laminating
• Leather work
• Shaping cosmetic covers
Basically, all the technical aspects
associated with fabricating prostheses.
I also adhere to the high demands of
the prosthetic clinicians!
Where have you worked?
1970 – 1990
Chas A Blatchford’s, England
1990 – 2003 Orthopaedic Techniques (OT), Fitzroy
2003 – 2005
Otto Bock 2005 - Ongoing
Caulfield General Medical Centre
people, and in particular, I enjoy seeing
patients walk out of the facility after
arriving in a wheel chair, knowing that I
have contributed to the making of their
prosthesis and helped improve their
quality of life.
Are there any special events that
have happened in your career?
I have many special memories that
have happened in my 37-year career,
What is it about this career path that including a Queen’s award for new
you enjoy?
technology with Endolite (Blatchfords).
When I first moved to Melbourne, I was
I like the hands-on aspect of my job. I
also enjoy watching the progression of travelling the country with Orthopaedic
prosthetic technology as it develops. Techniques, doing workshops and
meeting prosthetists which I thoroughly
In the old days, I made limbs by hand
out of aluminum, which I would planish enjoyed. Another highlight was being
selected to attend the Amputee
(smooth) to shape. Now prosthetic
Association golf week at Tweed Heads
technology includes carbon fibre
as the prosthetic technician.
plastics, etc. I also enjoy meeting
13
Unleashed!
Limbs 4 Life Co-Patron Tim Matthews
I was born without my left arm 32
years ago in the East Gippsland town
of Orbost. I had a condition known as
Exompholas, where the abdomen fails
to close around the umbilical cord. In
my case, the Exompholas exposed a
number of organs, including my liver.
The membrane protecting my exposed
organs ruptured when I was only a
couple of days old, causing many
complications. As a result, I spent
much of my early life at the Royal
Children’s Hospital in Melbourne.
In about 30% of cases, Exompholas
occurs in conjunction with other birth
abnormalities. In my case, I was born
with some webbed fingers and without
my left arm.
Following a number of operations and
skin grafts, my parents relocated to
Bairnsdale. From a young age, I loved
sport and was fortunate to attend a
small primary school where sport was
a celebrated part of the community. As
a youngster, I played various sports
including football, tennis, golf and
baseball. I only played football until I
was 12, as my liver was not protected
by my ribcage and any solid hit to it
was very painful. I became mindful at
an early age of the types of sports that
would suit me best.
For me, growing up with one arm
was never an issue. I think it is far
less difficult to be born with a limb
difference than it is to lose a limb later
in life. Aside from playing full contact
sports, having one arm didn’t stop me
from doing anything that my mates
could do. Not knowing anyone else with a similar
disability made it necessary for me to
think outside the square. Whether it
was learning how to tie my shoelaces, The Paralympic Head Coach for
athletics suggested that the 1996
putting on a watch, serving in tennis
Paralympic Games in Atlanta were a
or playing baseball with a glove, I was
possibility for me. Ten months later, I
always independently determined.
got myself a coach, started training
Being born with only my right arm
and transferred my studies to part
and always using the right hand side
time. I qualified for Atlanta in the 100m,
of my body resulted in a scoliosis of
200m and 4x100m relay events for
my spine. When I was in grade 6, I
amputees on the track. Although
Standing on the medal dais with the national anthem playing and the
flag being raised in our honour was a moment I will never forget.
received my first back brace. I hated
wearing it. I was supposed to wear it
for 23 hours a day, but I despised it. I
couldn’t play sport wearing it, couldn’t
ride a bike with it on and had trouble
sleeping in it. By the time I was 16, I
had scarcely worn my brace and
the specialists decided that enough
was enough. I had a spinal fusion to
partially correct my scoliosis. If I had
my time over again, I definitely would
have worn my brace. Having a spinal
fusion at 16 was tough. I spent the
following two years off the sporting
field.
Following high school, I studied
Outdoor Education at Bendigo
University. My core subjects included
rock climbing, bushwalking and skiing.
They challenged me and I learned a lot
about myself. During my third year of study, I was
invited to play in an amputee tennis
tournament in Melbourne. I had never
played sport against athletes with
disabilities. This was for a couple of
reasons. Firstly, I was able to play
sport at a reasonable level against
able-bodied participants. Secondly,
as I was born without my arm I didn’t
think that I was eligible for disability
sport. I hadn’t considered myself an
“amputee”, but for the purposes of
disability sport, I soon realised that I
was eligible to compete against other
14
people with disabilities. The tennis
tournament changed my life. It was
there that I met David Evans, another
tennis player who suggested that
I have a go at athletics. A couple
of months later, I competed in the
Australian Amputee Athletic Titles and
did reasonably well, winning my events. I missed out on winning an individual
medal, I was fortunate to be a part
of the relay team that won gold and
broke the world record. Standing
on the medal dais with the national
anthem playing and the flag being
raised in our honour was a moment I
will never forget.
Following Atlanta, I moved to
Melbourne to further pursue athletics.
Leading up to the Sydney Paralympic
Games, I was consistently running
under 11 seconds for 100m. This has
been the benchmark for upper limb
amputee sprinters around the world. The Sydney Paralympic Games in
2000 was an incredible experience.
The Games put disability and the
abilities of disabled people at the
forefront of a mainstream audience.
The crowds loved it, and we were
finally being recognised by the public
as athletes first.
Although I missed out on placing in
the 100m, I was again part of the relay
team that won the 4x100m. We also
won the 4x400m in world record time.
Australia has a great tradition in relay
events, and they are fantastic for team
morale. I feel fortunate to have been
part of the Australian athletics team
that won 32 gold medals.
Following Sydney, I set my sights on
Athens, aiming to win my key event, the 100m. Sadly, I tore my hamstring
in the heat and instantly knew that
my Games were over. Although it
was disappointing, it’s easy to keep
things in perspective at an event such
the Paralympic Games. Leaving the
stadium with athletes of all abilities,
I am reminded of the amazing
opportunities I have had. Hopefully a
fourth Games in Beijing next year will
provide a unique experience, as every
Games thus far have done. The 12 years of my sporting career
with the Victorian Institute of
Sport have enabled me to
travel to 28 counties
around the world. I
have met some
truly inspirational
people, some of
the best athletes
in the world, Prime
Ministers and even
the Queen. I feel
privileged for the
experiences I’ve
had. I have also
had the good
fortune to room
with my best
mate, best man
at my wedding
late last year
and co-patron
of Limbs4Life, Don
Elgin, at competitions
all over the world. We have loved every
minute of it. I’m now employed by
the Australian Paralympic Committee,
managing the Toyota Paralympic Talent
Search Program that aims to identify
and assist the Paralympic stars of
tomorrow. A big well done and congratulations to
both Mel and Jacinta for their work in
getting Limbs4Life off the ground and
assisting amputees in the community. I
am delighted to be on board!
Life is to be lived, so enjoy…
Tim Matthews
Life is to be lived, so enjoy...
15
Amputation in the case of cancer: A case study
Narelle Warren, Lenore Manderson & Peter Disler
Most clinical and research literature
investigating decision-making about
amputation following a cancer
diagnosis has been concerned with
doctors’ perspectives. In particular,
clinical information addresses when
amputation should occur – that is, for
what types of tumours and how, and
at what level (e.g. above knee, below
elbow). Amputation following bone
sarcoma or soft tissue sarcoma is
often performed in instances where,
for various reasons, limb salvage or
reconstruction is either not performed
or has been performed unsuccessfully
(Wafa and Grimer 2006). Ghert and
colleagues (2005), for example, found
that medical specialists consider the
location and extent of the tumour
when deciding whether to perform
an amputation, although they also
take into account the physical
functioning of the affected limb
post-surgery. International research
(Zahlten-Hinguranage et al. 2003)
has shown that people’s quality of
life and subjective wellbeing is similar
regardless of the type of treatment
(limb salvage or amputation) and thus
the clinical decision-making is based
on oncological factors (i.e., associated
with the cancer itself).
study (described in previous issues of
Amplified) exploring the social aspects
of amputation.
Charles experienced unexpected,
sudden and long-lasting pain, after
which his symptoms progressed
rapidly. As a result, he had to decide
quickly whether or not to undergo
amputation. Overall, eight weeks
elapsed between the onset of
symptoms and his amputation. In
the following quote, he described the
choice that he was given:
[My doctor] didn’t really tell me I had
to have the amputation. He gave
me a choice. They do leave it to you
because you have to agree. He gave
me three alternatives. He said, “You
can get up and walk out of here…
[or] I can try to remove the tumour
and leave a big hole in your leg. But
then you will still have a leg and I can’t
guarantee I will get all the tumour. Or
you can have an amputation, which
would probably get it all”. The first one
was eliminated because I wasn’t going
to get up and walk out [because] the
thing would take over and kill me in
a comparatively short time because
of the aggressive nature. The second
alternative [was] to have it operated on
and removed. It was rather large, eight
There is little information, however,
inches by two inches wide, but he
in research or clinical guidelines,
couldn’t guarantee success. So… he
about what the person diagnosed
recommended [that] I go away think
with cancer takes into consideration
about it and come back in a couple of
or how they feel during decisionmaking concerning amputation. In this days. So I decided that I had to have
[the amputation]… I guess in my own
short article, we offer a case study
heart, I knew that radical treatment
of decision-making for a man we call
had to be performed. I accepted it.
Charles (not his real name). Although
I didn’t like to accept it but I had to
osteosarcoma is most common in
accept the fact that this was going to
younger people (Tebbi and Gaeta
happen. There was no trying to hide
1988), Charles was diagnosed when
away from [the decision to have an
he was 75 years old. His decisionmaking therefore was based on factors amputation]. It was going to happen.
It was a bit of a shock, I suppose, but
different from those that might be
considered by younger people. Charles I had to make my mind up quickly.
So, yeah, I accepted that things were
participated in an in-depth interview
going to be a little bit life changing.
with us at the end of his inpatient
rehabilitation, as part of our larger
As he explained, Charles made
16
his decision in a similar way to his
medical professionals and, in doing
so, was concerned with what type
of treatment (i.e., what procedure)
offered the highest chance of success.
He conceptualised success around
three factors: which procedure
would remove the entire tumour,
which procedure would cause the
least trauma to his body and which
procedure would maximise his
chances of recovery. Given the size
of the tumour, amputation offered the
best opportunity for success of these
three factors. Indeed, he believed that
amputation offered the only way to
adequately treat his cancer.
Ideas about success were not the only
considerations Charles made, however.
Family support was important, and he
discussed his treatment options with
his wife and children. Pain relief was
also important:
[Over] the eight weeks. I was getting
sorer. Before the operation, the pain
level was acute, and I mean acute.
There was no sleep; there was no
relief. The only slight relief I got [was
when] I went back to the surgeon and
said the pain is absolutely driving me
mad. He could see I was in a lot of
pain and he gave me a medication. I
think it was a mild dose of morphine,
which sort of subdued it a little bit and
“Family support was important,
and he discussed his treatment
options with his wife and
children.”
then I had the operation.
Although cancer treatment often
involves chemotherapy, this was
not the case for Charles. He chose
not to have chemo because he was
extremely worried about the side
effects. His concerns about these were
partly involved in his choice to have an
amputation rather than limb salvage
surgery.
During his interview, Charles described
how he based his decision on cancerrelated factors (getting the tumour
and reducing pain), centred on what
would cause the least disruption to
his lifestyle. In this way, his decisions
resembled those of the medical
professionals and were pragmatic in
nature.
This provides a brief snapshot of
his story, however his pragmatism
was an important finding. Our other
data indicates that people who have
an amputation for other reasons
emphasise how social factors play
an important role in their decisionmaking. For example, the decision
to have an amputation is often made
after ongoing consultation with family
members or, when the amputation
occurs due to a medical crisis, is made
by the family members. This may relate
to the perceived options available.
Where multiple treatments are seen to
be available, considerable negotiation
occurs within the family and wider
social network. However, this was not
the case for people such as Charles.
At the same time, social support
and participation were important
to all recent amputees, regardless
of the reason for their amputation.
This suggests that information preamputation and social support postamputation need to take different
underlying health conditions and
reasons for amputation into account.
References:
Ghert MA, Abudu A, Driver N, Davis AM,
Griffin AM et al. (2005). The indications
for and the prognostic significance of
amputation as the primary surgical
procedure for localized soft tissue sarcoma
of the extremity.
Annals of Surgical Oncology, 12(1): 10-17.
Tebbi CK & Gaeta J (1988). Osteosarcoma.
Pediatric Annals, 17(4): 285-300.
Wafa H & Grimer RJ (2006). Surgical
options and outcomes in bone sarcoma.
Expert Review in Anticancer Therapies,
6(2): 239-248
Zahlten-Hinguranage A, Bernd L &
Sabo D (2003). Amputation or limb
salvage Assessing quality of life after
tumor operations of the lower extremity.
Orthopade, 32(11): 1020-1027.
Social support and participation were important to all recent
amputees, regardless of the reason for their amputation.
17
The Amplifier
Be Heard
THE AMPLIFIER is a new addition, and it’s your
chance to have your say! One of the most
frequent responses in the Amplified survey
was to include a ‘Reader’s
amputees in the community. So be
heard. We appreciate your opinions
and contribution.
Please write to:
The AMPLIFIER
P.O. Box 282 Tunstall Square,
East Doncaster 3109
E-mail: [email protected]
Phone: 1300 782 231
Column’. This
is your opportunity
to share any tips
that have helped you along
the way as an amputee, or
perhaps provide us with some
feedback on Amplified articles,
send in a useful website link, tell
a joke or even have a vent about
something that’s giving you the gripes!
This is your window to connect with other
Your privacy is of utmost importance to
us. We will only identify readers by their
first name and state or suburb of origin.
If you do not wish to be identified at all,
please state that clearly in the letter.
To get THE AMPLIFIER started, here
are some feedback comments and
suggestions from the recent Amplified
readers’ survey and responses about
Limbs 4 Life services and events:
Readers’ Column
“I would like to see more articles of how other amputees cope - like Angela
Snow’s article - that was fantastic.”
Robert, VIC
“I would like to see a Question and Answer column from readers, backed by
answers from therapists, prosthetists and doctors, etc. Similar columns in
commercial papers are very popular and useful.”
“I find Amplified’s stories/articles inspiring and informative. Any information that
shares knowledge and experiences assists amputees and those working with
them to achieve better outcomes.”
Fiona, VIC
“Thank you for the information and support - it was wonderful.”
Sonia, Berwick
“I really appreciated the information you sent. It made a huge difference to our
family, and thank you for responding so quickly.”
Dianne, NSW
“I love the Golf Day. In all the years I’ve been an amputee, I’ve never met
another, and this has changed my life.”
Terry, Footscray
“Hello, I’m a below knee amputee of 2 months. I live in Sydney and was unable
to find any information until I came across your website. It’s excellent. Thank you
so much.”
Kerry, NSW
18
Send in your comments for
the next AMPLIFIER and go
into the draw to win a copy
of Gill Hicks new book, One
Unknown.
Please include your full name
and postal address in case
you win!
news
In conjunction with Amputee
Awareness Day last June, Limbs 4
Life members were invited to attend
an afternoon with guest speaker
Tommy Hafey. Tommy highlighted the
importance of people remaining active
by finding a sport or activity that suits
the individual. He believes that age
is no barrier in trying new things and
achieving new goals, emphasising
that no matter the circumstance
we should all strive to be ‘the best
we can be’. He was undoubtedly
an inspiration to all. Limbs 4 Life is
most appreciative to Niagara, who
graciously organised for Tommy to
come along.
belief in supporting the outcomes of
what they see as an emerging and
essential organisation.
Other speakers included amputee
Stuart Tripp, who spoke about his
new book Travelling Hopefully. Stuart
shared his experience of limb loss and
highlighted the importance of peer
support and guidance during the time
of recovery. Anthony Ferraro from
Niagara spoke about the company’s
partnership with Limbs 4 Life, noting
that their drive comes from a deep
MC was Limbs 4 Life Co-Patron Don
Elgin who, as anticipated, entertained
the crowd with his infectious
sense of humour. Limbs 4 Life is
appreciative of Wheelchair Sports
Victoria and Matthew Fittolani from
Functional Training Perspectives for
displaying their services, and to all
of the participants for sharing such a
wonderful afternoon.
Limbs 4 Life was saddened to hear of Australian
Paralympic champion Michael Milton’s cancer diagnosis
in July. Michael said, “I’ve beaten serious cancer once
already, so I am confident I can do it again. However, it
also means I have a pretty good idea of how tough my
life will be as I go through the treatment - but I’m up for
the fight.”
Our positive thoughts and support are with
Michael and his family.
19
International Day of People with Disability
(IDPwD) is a United Nations-sanctioned day
to celebrate the achievements, contributions
and experiences of people with disability. )NTERNATIONALß$AYßOF
The day brings together people with disability,
non-government organisations, businesses,
all levels of government and the wider
community.
IDPwD is supported by the Australian
Government’s Department of Families,
Community Services and Indigenous Affairs
(FaCSIA).
In 2006, hundreds of events were held across
Australia to celebrate IDPwD.
2007
To find out more about IDPwD, view a calendar of events in your state and learn how to get
involved, visit www.idpwd.com.au. You can also check the website for regular updates on
IDPwD events and news.
Victorian
Seniors Festival
“Movember” (the month formally known as November) is an annual charity
event held during November. At the start of Movember, participating men
register with a clean-shaven face. The Movember participants (known as
“Mo Bros”) then have the remainder of the month to grow and groom their
moustache and raise as much money and awareness about male health
issues as possible. In 2006, 44,756 “Mo Bros” and “Mo Sistas” raised
$6.63 million. The net proceeds were donated equally between Beyondblue
(the national depression initiative) and the Prostate Cancer Foundation of
Australia (PCFA). Keep an eye on the Movember website for updates and
news on the 2007 campaign - www.movember.com.au.
World Diabetes Day
On 14th November 2007, the current
International Diabetes Federation’s
World Diabetes Day will be observed
for the first time as a United Nations
Day. The theme for 2007 is Diabetes
in Children and Adolescents. For
more details about the campaign,
visit the World Diabetes Day website,
www.worlddiabetesday.org.
14th
November
2007
20
For local Victorian events observing World Diabetes
Day, visit the Diabetes Australia Vic
website: www.dav.org.au. Phone: 1300 136 588
Victorian Seniors Festival
7th – 14th October
The Victorian Seniors Festival celebrates
its 25th anniversary in 2007. It begins on
Sunday 7th of October, continuing until 14th
October.
The annual festival is a week-long celebration
for seniors. It includes hundreds of free or
low-cost events, forums and activities across
Victoria, as well as free public transport for
Victorian Seniors Card holders. The festival
recognises the valuable contribution that
older people have made and continue to
make in our community.
To find out more visit:
www.seniors.vic.gov.au
7th -14th
October
2007
Call: (03) 9603 8828
www.seniors.vic.gov.au
Limbs 4 Life is proud to be hosting
the first Victorian Amputee Golf
Championship at
Tirhatuan Lakes Golf Course.
Tournament details and registration
forms are available on the website,
www.limbs4life.com
phone 1300 782 231
Registration closes
October 1st 2007
22nd & 23rd
November
2007
2007 Chrysler Australia Victorian
Amputee Golf Championship
Tirhatuan Lakes Golf Course
Cnr Stud & Police roads Rowville
Much more than Australia’s only
regional disability arts festival ...
Awakenings is a festival for everyone.
Come and share the Awakenings
Experience
p: 03 5362 4006/ 03 5362 4058
e: [email protected]
w: www.awakeningsfestival.com.au
IT’S ON AGAIN
12th – 21st The Awakenings Festival…
October 2007 Ten days in October in Horsham
Lawn Bowls
Lawn bowls is a sport in which people with disabilities can compete equally with able-bodied competitors, without any
modifications to the rules. Wheelchair Sports Victoria’s bowlers bowl regularly with their local lawn bowls club, and are
involved in a number of multi-disability events held around Victoria and Australia.
Each year a team of ten athletes with a range of physical disabilities is selected to represent Victoria at the National MultiDisability Lawn Bowls Championships.
Access to Lawn Bowls Greens
Lawn bowlers in wheelchairs have access to both grass and synthetic greens, however wide tyres are required to protect
the greens. Most bowling clubs in Victoria are wheelchair-accessible and are extremely welcoming of athletes with
disabilities.
For more information about the sport, view the Bowls Victoria website, www.bowlsvic.org.au.
For more information about Lawn Bowls opportunities with Wheelchair Sports Victoria,
contact Hilary Poole on (03) 9473 0133
SKI ABLE
Ski Able is a national organisation
promoting waterskiing for people
with physical disabilities and vision
impairments.
Skiing can be:
• Recreational with family and friends
• Competitive with local mainstream clubs or at world level
• Slalom, tricks and jumps
Contact Alison Smith (Victoria) 0417 739 331
National web: www.disabledwaterski.com.au
Web link
www.talbronstein.org
The talbronstein website is dedicated to bringing you news about amputee athletes around the world.
It also contains links to amputee websites and books
21
One Unknown
Gill Hicks
Australian-born Gill Hicks was on her way to work on a
Piccadilly line train on 7 July 2005 when a terrorist bomb
exploded in the carriage in which she was travelling.
Amazingly and against all the odds, she survived the
blast, but due to the injuries she sustained her legs had
to be amputated.
In this moving memoir Gill recounts the events of that
day, from facing the very real prospect that she might die
and her subsequent fight to live, to later coming to terms
with losing her legs and living life as a disabled person.
The book includes excerpts from the diary she wrote
during her rehabilitation, an account of her wedding
day in December 2005, and traces the journey of her
extraordinary recovery.
Having survived this life-shattering experience, Gill asks
important questions about how we set our priorities
and the way we live our lives. She motivates readers to
“seize the day” and live life to the full while striving for a
better, more tolerant world. Her powerful message has
a broader audience than most “ordinary” motivational
books because of the experience out of which it was
borne. This moving account is told with great integrity
and honesty, and Gill’s lack of self-pity and keen sense of
humour lighten the tone and make this book very special
indeed.
One Unknown is available at all good book stores
TYPE 2 DIABETES: MEASURE YOURSELF.
MEN - 90cm
WOMEN - 80cm
100cm
90cm
A waistline of over 100 cms for men and over 90 cms for women puts you in the highest risk category for type 2 diabetes. See your doctor if you’re at risk.
To lower your risk men should aim for a waistline of around 90 cms or below and women around 80 cms or below.
Reduce your waist. Reduce your risk.
22
www.diabetesaction.com.au | Diabetes Australia: 1300 136 588
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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.