Maintaining function, stability and well-being in clients with

facioscapulohumeral muscular dystrophy (FSHD)

Laura-May Baldwin 10th December 2016 Wimbledon, The Pilates clinic - 2016

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Abstract

Pilates is a well-stablished and long-standing exercise program renowned for it’s holistic

benefits.

Joseph Pilates addressed not only physical strength and mobility but also believed that

through striving for physical excellence we achieve general well-being.

The focus is not just on the physical, but also the ability to be in total control of the body

and it’s movements through a true mind-body connection.

With this in mind it is easy to see why Pilates is so complimentary for individuals where

movement is part of their career for example the dance community and professional

athletes. It is also incredibly successful in aiding recovery in injuries and assisting those with

physical imbalance and disability.

This case report covers a comprehensive programme utilising the BASI block system to assist

those with FSHD, with particular attention to scapular stabilisation and long term

maintenance of muscular balance.

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Contents

Abstract………………………………………………………………………..…………………………..P2

Contents…………………………………………………………………..……………………………….P3

Anatomical description/focus………………………………………………..………………… P4-5

Introduction…………………………………………………………………….……………………… P6

Case study……………………………………………………………………………..………………….P7-8

Programme……………………………………………………………………..……..………………..P9-12

Conclusion………………………………………………………………………….….…………..……P13

Bibliography…………………………………………………………………………….......………..P14

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Anatomical focus

This case report discusses the use of Pilates to stabilise the use of the scapula.

The scapula has no direct bony attachment; instead it relies on muscular attachment to the

axial skeleton. It lies posterior to the thorax roughly from T2-T8.

The muscles enable a large degree of mobility which in turn allows for shoulder/arm

mobility.

The primary muscles of scapula stabilisation are as follows:-

The Trapezius is a large triangular-shaped muscle divided into upper, mid and lower

sections as the fibres of this muscle run in different directions, thus these differing sections

are responsible for different scapulothoracic movements.

It originates in the occipital bone of the skull, attaching to the clavicular and scapula spinal

processes.

The upper trapezius is responsible for elevation and upward rotation of the scapula.

The mid trapezius is responsible for retraction of the scapula.

The mid and lower trapezius is responsible for depression of the scapula.

The Rhomboids (major and minor) are deep to the trapezius with diagonal running fibres

attaching the mid spinal process to the vertebral border of the scapula.

The rhomboids are responsible for retraction of the scapula and downward rotation and to

some degree scapula elevation.

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The Levator scapulae attach the cervical vertebrae C1-C4 to the upper vertebral border of

the scapula and aids elevation.

The Serratus anterior is a fan-shaped muscle attaching the medial border of the scapula to

lateral surface of the ribs 1-8. Serratus anterior is assisted by Pectoralis minor to produce

scapula protraction. Serratusus also works with the upper trapezius to create upward

rotation. The lower fibres of serratus also aid scapular depression.

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Introduction

Facioscapulohumeral muscular dystrophy (FSHD) is a genetic, neuromuscular disease. It is

marked by slowly progressing skeletal muscle weakness and death of muscle cells and

tissues.

FSHD primarily affects the back muscles that stabilise the scapula; the upper arm muscle

and shoulder girdle and often affecting the pelvic girdle and leg muscles as the disease

progresses. Muscle fatigue and pain is widely reported in patients with this condition.

Muscle groups tend to deteriorate asymmetrically with one side being affected more than

the other.

There is little research surrounding the effects of Pilates or any exercise on FSHD as it is

difficult to create a controlled test. This is because as a rare genetic disease it manifests in

different ways and people’s experiences differ.

However with a condition that is so unique to the individual, it seems appropriate to utilise

the BASI block system. Creating a programme for a client with FSHD where, alongside

focused muscle strengthening, balance is always addressed, which is a key concern for all

people especially those with FSHD.

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Case study

Laura is a 32 year old woman with excellent fitness. She partakes in daily exercise including

running, high intensity bodyweight interval training and Pilates.

She has two children aged 5 and 7, born naturally with no medical intervention.

Laura was diagnosed with late onset FSHD in November 2014. Attributed to this condition is

a reduced strength and stabilisation of the left shoulder. Winging of the left scapula is visible

and this is exacerbated by certain exercises.

Laura has had multiple incidences of severe shoulder and neck pain due to over-active

upper trapezius compensating for weaker lower/mid trapezius muscles and surrounding

stabilising muscles.

For this she has been seen regularly by a specialist (MD) physiotherapist and her osteopath

but reports improvement in her left shoulder stability since committing more time to

Pilates.

She experiences some left hip pain that may be associated with FSHD or poor biomechanics

during running.

On examination Laura has good posture but has a tendency to allow her shoulders to round

forward. She has hammer toes and is conscious of correcting her ankle alignment.

After examination and discussion the objectives for the client are to:

Continue to improve shoulder stabilisation

Improve muscular balance between left and right side back and shoulder muscles.

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Improve muscular balance between hip flexors and adductors

Feel positive about the future!

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Programme

Before writing the programme I was able to discuss with the client’s physiotherapist the

safety aspects of performing certain exercises for clients suffering with FSHD.

The main caution was for Laura to stop on sudden fatigue and to be conscious of not over

working weaker muscles. Also it was important to assess on a session by session basis what

exercises were appropriate. This would be the case for any client.

Sessions 1-10 11-20 21+

Warm up Roll down

Pelvic curl

Spine twist supine

Chest lift

Chest lift with rotation (MAT)

Roll up

Spine twist supine

Double leg stretch

Single leg stretch

Criss cross (MAT)

Roll up with roll up bar

Spine twist supine

Mini Roll-Ups

Mini Roll-Ups Oblique

Roll-Up Top Loaded (CADILLAC)

Foot work Reformer/Cadillac

Parallel heels

parallel toes

V position toes

Open V heels

Open V toes

Calf raises

Prances

prehensile (reformer only)

Single leg heels

Single leg toes

Reformer/Cadillac

Parallel heels

parallel toes

V position toes

Open V heels

Open V toes

Calf raises

Prances

prehensile (reformer only)

Single leg heels

single leg toes

Hip opener (Cadillac only)

Reformer/Cadillac/Wunda chair

Parallel heels

parallel toes

V position toes

Open V heels

Open V toes

Calf raises

Prances

prehensile (reformer only)

Single leg heels

single leg toes

Hip opener (Cadillac only)

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Abdominal work

Reformer

hundred prep

Reformer

Hundred

Coordination

Reformer

Short box series

Teaser prep Cadillac

Roll-Up Top Loaded

Breathing with Push through Bar Wunda Chair

Standing Pike reverse

Pike sitting

Hip work Reformer

Frog

Circles Down/up

Openings

Extended Frog/reverse

Reformer

Frog

Circles Down/up

Openings

Extended Frog/reverse Cadillac

Frog

Circles Down/up

Walking

Bicycles

Reformer

Frog

Circles Down/up

Openings

Extended Frog/reverse Cadillac

Frog

Circles Down/up

Walking

Bicycles Single leg work on Cadillac

Spinal articulation

Omitted

Reformer

Bottom lift Cadillac

Tower prep

Reformer

Short spine Cadillac

Monkey original

Stretches Pole

Pole series

Reformer

Kneeling lunge

Reformer

Full lunge Cadillac

Shoulder stretch

Full body integration

Omitted Reformer

Scooter

Elephant

Reformer

Flat back

Down stretch

Up stretch Cadillac

Sitting forward

Side reach

Kneeling cat stretch

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Arm work Reformer

Arms supine series

Wunda Chair

Shrugs

Reformer

Arms supine series

Reformer

Arms sitting series Cadillac

Arms standing series Wunda Chair

Shrugs

Triceps press sit

Frog back

Side kneeling Arm

Full body integration

Omitted Omitted Reformer

Long stretch

Leg work Wunda chair

Leg press standing Magic circle

Adductor squeeze

Wunda Chair

Single leg press Reformer

Single leg skating

Wunda chair

Single leg press Reformer

Single leg skating

Side splits

Lateral flexion

Mat

Side lift Wunda chair

Side stretch

Wunda chair

Side stretch

Wunda chair

Side kneeling stretch

Reformer

Mermaid

Back

extension

Mat

Back extension Wunda chair

Swan Basic

Wunda chair

Swan basic Reformer

Breast stroke prep

Wunda chair

Swan on floor Reformer

Breast stroke prep

Breast stroke

The exercises chosen for this program are those primarily involving scapular stabilisation. It

was necessary to ensure, where possible, that proprioceptive feedback was available to

focus the client’s awareness to the stabilising muscle groups. For example the “Arm Series

Prone” on the reformer aids stabilisation as well as allowing the client to appreciate the

feeling of correct shoulder mechanics against the reformer bed.

It is important to note that although Laura has had previous Pilates experience the

programme has initially been “back to basics”.

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Readdressing foundation level work enables the instructor to ensure technique is precise

and therefore the client gets the full benefits of a comprehensive programme as well

ensuring that they are safe to progress to more challenging exercises.

The programme has also been complimentary to Laura’s hobby of running, with many

exercises working to balance hip adductors/abductors and hip flexors/extensors. The aim of

the these exercises would be to alleviate the left hip pain she has experienced.

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Conclusion

The client progressed through the programme well and improvements in stabilisation have

become apparent specifically in purposeful activation of the serratus anterior which has

significantly reduced scapula winging on the left-hand side.

As FSHD is a slow progressing condition and deterioration is difficult to monitor, one can

only speculate on maintenance but it is my belief that if the client continues to build on her

mind body connection that functional movement will be longer lasting.

Most importantly Laura has expressed her enjoyment of her self-development through

Pilates. She reports to feeling stronger and that she is happy to be doing something to

counteract FSHD. This has given her a sense of control over her condition and a belief in her

body!

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Bibliography

Books

Isacowitz, Rael. Pilates second edition, 2014

Isacowitz, Rael and Clippnger Karen. Pilates Anatomy, 2011

Pilates, H Joseph. Return to life, 1945

Kapt and Elson. The Anatomy colouring in book 3rd edition 2002

Isacowitz, Rael. Study Guide Comprehensive Course, Body Arts & Science

International 200-2014

Website

“About FSHD” , fshsociety.org