there’s no room for “passive” in physiotherapy · physiotherapy in dmd: •maximise useful...
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“Lets get physical”in physiotherapy!
José Longatto and Marion Main
Neuromuscular Specialist Physiotherapists
Great Ormond Street Hospital for Children
NHS Foundation Trust
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Welcome to this physiotherapy workshop
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Physiotherapy in DMD:
• Maximise useful function• It is different for each age and stage• Reduce burden of care (physiotherapy
should make life easier not harder) • Add quality to quantity
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But before we can do any work we need to assess the problem
• To establish a baseline of physical ability and function
• Establish priorities of management
• To monitor change over time
• To evaluate intervention
• For research
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What do we assess?Objective measures
POWER
MRC grading/myometry
JOINT RANGE
FUNCTION
Using functional scales: North Star, Brook, MFM, Upper Limb
MOBILITY / GAIT/ FATIGUE
(mobility is not just about walking!)
Timed tests
6MWT
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But
Assessments only give us numbers. And numbers can be very misleading;
-this is particularly true of functional scores…where every activity no matter how hard or how “important” still scores the same 2
Is hopping really as important as getting up from the floor?
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Other things to review
Spinal posture
Pain
Falls
Home/school
Seating and wheelchairs
Manual handling
Splints and orthotics
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Physiotherapy is only a small part of the team that children, parents and other
carers will have to deal with on a regular basis
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Physio(s)
The young person
Speech therapist
Psychologist
Social worker
GP
Parents
Siblings
Community Paediatrician
Other relatives
SCHOOL: Teachers, LSA, SENCO, Careers
advisor
Sport & Leisure
Wheelchair
services
Local council
Consultant(s)
Dietician
friends
Life?
OTs
Research/treatment
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What do we need to think about?
Contractures and stretches
Weakness and exercise
Mobility and function
Spinal Posture
Pain prevention
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TREATMENT THAT IS FUN, ENGAGES THE WHOLE FAMILY AND IS PART
OF EVERYDAY LIFE – IS MORE LIKELY TO GET DONE – AND THEREFORE MORE EFFECTIVE
Physiotherapy Management
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Contractures – what are they?There are many causes but in DMD its usually
because of-Loss of muscle stretchiness
- Leads to tightness of the muscle as the bones grow
Joint tightness and loss of mobility due to lack of full range movement
- Caused by weakness and tight muscles
Deformity – caused by inability to achieve normal positions
And in some muscles, reliance on compensatory movements
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Contractures
•They can appear at any age & stage
•Hips don’t just get tight at loss of ambulation
•Long finger flexors can be tight from tiny – you have to know how to look for it
•They can occur in any joint
•They can appear on one side or both
•They can progress rapidly or slowly
And……….
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THEY DON'T GET BETTER BY THEMSELVES!
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Contractures can lead to pain!
They interfere with sleep
Cause pain with sitting
Can be painful when moved
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Methods of maintaining muscle length and joint range
•Active - assisted stretch
•Self stretch
•(Passive stretch)
•Stretching through position
•Splinting
•Serial casting
•Surgery
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Stretches
can’t really be separated from exercise (if they are “active”)
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What to stretch?
concentrate on those contractures that
cause loss of/reduction of function
TA’s = ankles, (fingers?), elbows
cause asymmetry ITBs, hips
affect mobility or ambulation TAs, HIPS, knees
affect posture or sitting: ITBs, knees, hips
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What else to stretch?
Supinators
Knees
Elbows
Neck
Spine
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What NOT to stretch
•Bendy joints
•Fixed joints
•Painful joints
•Hamstrings
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hamstrings
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ITBsilio-tibial bands
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Stretches – how much “force”
Feel the muscle – is there any stretch/giveMake sure you are stretching in the line of
muscle pullStretch SLOWLY
Think about the normal range – don’t try and get more!!
Never cause painPain causes more problems
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How to stretch!
CAREFULLY!
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Self stretches
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Serial Casting
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AFOs
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CCD (Contracture Control Devices) - to use or not to use
- The evidence - ?? studies in DMD
- The problems
sitting for 2 hours!
bend your knee to stop the stretch of gastrocnemius
- The solutions
walk around in them!!!
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Surgery
Despite all this, surgery is still necessary in
some cases particularly feet in
older boys -
but NOT for hamstrings
And there is nothing more important than
getting splints/orthoses and
positioning right after surgery!
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Stretches – ACTIVE ONESHow to do the stretches
Time to do some work…….
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Muscle weakness
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Exercise and activity,sport and play
At GOSH we believe that “exercise programmes” are boring and being able to change them as needed is
hard for parents
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Play is exercise
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The benefits:
-Heart, lungs, digestion
-Joints, muscles
-Fitness
-Self esteem
- long term effects:
Bone density
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Barriers to exercise
Factors influencing Motivation
Self esteem/body imageParental and other influence (sibs, friends)Teacher/mentor interestSuccess/resultsFeeling and looking good
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Outdoors
The weatherChild safetyBeing able to get there….keep up, and use all the equipment
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How much? How often?
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Sport and Leisure
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Disuse Atrophy
– what is it?
-what does it do?
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Is there good and bad exercise?
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The good
- Symmetrical exercise
- Concentric exercise
- Aerobic exercise
- Fun
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Good activities -
Swimming
Horse riding
Bicycle/tricycle
Boxing
Martial arts
Basketball
Preferably
……Anything that uses both sides
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ExerciseThe not so good
Asymmetrical exercise
Eccentric exercise
Exercising the wrong muscle groups
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Reduce or avoid
Asymmetrical
Weights
Rugby
Gymnastics
TRAMPOLINES
Scooters
Running
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Ideas for exercises, activity and play
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EXERCISE – ACTIVITY & PLAY
TARGETING THE CORRECT MUSCLES!
Resistance – theraband, body weight,
PNF
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Mobility
Early development – not all children crawl!
Walking, running, stairs….
Trips and falls
Struggling
The buggy and the first wheelchair
Electric wheelchairs
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ADL – Home and School
Activities of daily living
Home - Dressing, personal care,
feeding and eating
School – writing, inclusion,
Both – manual handling, risks, access
Fatigue, wellbeing, support
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Spinal posture:INCLUDES THE NECK
Scoliosis
Kyphosis
Lordosis
Pelvis
Spinal Mobility/Rigidity
Shoulder levels and scapulae
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Good posture??
•POSTURE IN SITTING
•POSTURE IN STANDING
•POSTURE IN LYING
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Promote mobility
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Losing ambulation
The options:-
- Stop!
- Stand but no rehab
- Stand and rehab in KAFOs
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Feet
Cavus feet
Flat feet
Pronated
feet
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In children and parents and carers
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What causes pain?
Contractures
Back pain
Cramps
Pressure Sores
Fractures and injuries
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Taping in DMD
Tape does not cure contractures, control or maintain range
But it is useful for acute sprains and injuries, post fracture muscle re-education and under serial casting.
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Take home messages:
- Physiotherapy is boring!
- Make it part of every day life
- Contractures don’t get better
by themselves
- Use splints and position to allow stretch for the longest possible time
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Start young
Stretches if needed – Physio will look for them
Activity, sport, play – swimming from young, tricycles, active play
- night splint - why wait until you have lost range?
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Contractures - The range gained can easily be lost again if
you don’t think about how to maintain it.
ANSWER splinting and exercises
- Pain makes contractures worse / contractures make pain worse
- Poor posture needs correcting - habits cannot be changed easily. what looks normal to us may not feel normal to the child - the “sit up straight trap”
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Make it fun
Through play, activity, games, PE……Don’t over-do it – one activity a day is
PLENTY!
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There is no such thing as a lazy child!
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No two children and families are the same
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Conflicting advice
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What we do now - is the result we will have for the future
Bone health, contractures, posture – DONT WAIT until its too late to correct them
Anticipate and prevent where possible
The better we can keep the children, the more effective treatments can and will be
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Useful web siteDLF - Disabled Living Foundation
www.dlf.org.uk
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With thanks to all the wonderful Physiotherapists I have worked with and the
amazing children and parents who have taught (and are still teaching me) all I know