• In Primary School the main considerations are around mobility and independence.
• In PE pupils should be encouraged to access as many physical activities as possible to use the full range of movements for as long as possible.
• Physiotherapists can provide help and support for PE lessons.
• Newbridge Outreach can provide alternative physical activities e.g. Olympic Challenge
• Pupils will tire easily - monitor fatigue / look for patterns in school week.
• Because of increasing weakness in the shoulder girdle muscles, the child should not be pulled up by the hands or from under the arms.
• Use of ICT early on to establish skills before they are required.
• Extra time / scribe during tests / examinations
• Pace your day - consider the effect of fatigue and how to support this.
• In Secondary School the issues increase around care needs, independence, fatigue, peer support, transition.

All students vary, even brothers within the same family can have a very different scale of progression.

A rough quide would be;

• 3-4 yrs- Parents/ Nursery/ School report a general awkwardness and clumsiness.
• 5-7 yrs- Children start to need to help getting up off the floor or they' walk up' their legs to get up. The weakness develops from the feet upwards.
• @ 10/ 12 yrs- Children rely upon a wheelchair for mobility and may need help with recording / eating / care tasks.

• Wheelchair accessible school
• Access to supportive toileting space to allow for use of hoist
• Staff to be trained in 'Moving and Handling' techniques
• Support for motor skills in practical lessons e.g. DT, art
• Access to ICT - consider access to smaller lightweight Netbooks (contact SERC)
• Measure the impact of fatigue
• Extra time in examinations / access to scribe / extra time
• Provide the students with an effective means of catching up school work missed.
• Sensitive support for care needs, consider access to male care staff if possible

• Symptoms may not be apparent when the student first starts school.
• Parents will need time and emotional support.
• Newbridge Outreach staff can visit and provide training for staff
• Physio and OT can be approached for further advice
• Consider Statutory Assessment
• Provide alternate / supportive play time activities
• Be aware that cold can have a negative impact
• The condition can be variable, pupils will have good and bad days
• Steroids can be given, this can impact upon weight, physical wellbeing, energy. It is important to know when students are on and off steriods as it can impact on their ability to access school life.
• Consider using disabled toilet - rails and greater space are often beneficial
• Monitor stamina and fatigue, observe and record patterns
• Physical wellbeing can be affected by tiredness and minor infections such as colds and coughs.
• Introduce keyboard skills as early as possible.
• Encourage students to express themselves and not become passive

• Statement in place
• A wheelchair is likely to be used in KS2
• Learning wheelchair skills
• Disability awareness with peers
• Greater input from Physio, OT and Newbridge Outreach
• Staff training - Moving and Handling
• Support for recording - using ICT, scribe, Cloze procedure
• Alternative PE challenges ( contact physio/ Newbridge)
• Support emotional needs and behaviour
• Consider and monitor fatigue and impact upon attention and focus

• Around the age of 3 - 5 parents report general awkwardness and clumsiness, waddling walk, walking on toes, poor posture and protruding abdomen.
• In Foundation Stage / Key Stage 1 students have increasing difficulty getting up from the floor and may 'walk up' his lower limbs with his hands. This is known as Gowers sign.
• Weakness generally develops from the feet upwards to the front thigh muscles.

http://www.fsh-group.org/questions.htm

This is a support group partner of the Muscular Dystrophy Campaign, they provide help to improve the quality of life for those who have Facioscapulohumeral Muscular Dystrophy (FSH-MD).

Martin Chainani is the regional care advisor in London.

Martin supports children with muscle disease at:

Dubowitz Neuromuscular Centre
Great Ormond Street Hospital
London
WC1N 3JH

Martin has worked as a regional care advisor since 2002, having come from a background in social work in both Children and Adult Disability. He facilitates the Essex schools network meetings and helps to run several of the MDC Care Events in the South-East region. He has a special interest in raising awareness about the rights of people with muscular dystrophy and other disabilities.  

Contact details:
0207 405 9200 ext 0529
ChainM@gosh.nhs.uk

With most dystrophies such as Duchenne, the condition tends to affect hip and shoulder muscles.

In Myotonic Dystrophy these areas are not affected intially and the initial muscles to be affected are face, neck, hands, feet and forearms

Steroids are often given to students who have MD, as they can slow the rate of muscle deterioration.

These can cause side effects and are often given in blocks eg two weeks on and two weeks off.