Recent Seminars
Newcastle CMT Awareness Day Seminar
Sunday 31st August, 2008
An excellent day was arranged by Gabbi Pizzingrilli with 40 people in attendance.
The summary of the day is as follows:
Speaker 1 – Dr Joshua Burns (Neurological Researcher)
- Be careful when strengthening leg muscles as the strong muscles may get stronger and the weak muscles do not get strengthened. Dr Burns emphasized that if a person with CMT has flat feet the leg muscles to be strengthened are different to those in a person with CMT who has arched feet. He also noted that shoes are made for people with flat feet so please be careful when buying shoes. Work on ankle flexibility for a flat foot result.
- Marshall Arts is an excellent way for children with CMT to improve balance and strength. Swimming and cycling is another excellent form of exercise for people with CMT.
- There are excellent proprietary brands of support for claw toes that will make walking more comfortable – podiatrists are aware of these.
- Results of the vitamin C trial should be through towards the end of the year.
Speaker 2 – Peter Adrick (District Guidance Officer, NSW Department of Education and Training)
- Assistance for children with CMT at school.
- There are codes available to determine the level of support available.
- Contact your child’s school to arrange a Learning Support Meeting.
- Each school district has a Disabilities Support Programme Officer.
- It is essential that as much “normalizing” as possible is done for children with a disability as they need to be accepted for who they are, not the condition they have.
- It is very important that children with a disability have a circle of school friends.
- Children with a disability can assist at the school carnival by being time keepers etc rather than suffering the embarrassment of competing.
Speaker 3 – Jenny & Odette (Paediatric Physiotherapists)
- Hamstring and calf muscle stretches.
- Types of casts – prefab night splints, soft cast splints.
- Encouraging children to get into suitable sport
- Physiotherapists can provide letters to sporting groups outlining the challenges a child has due to CMT.
- Theraband exercises for strength.
Speaker 4 – Rachael Brent (Occupational Therapist)
- Try to maintain function.
- Handwriting assistance – prescribed assistance devices, pen grips, slope boards, soft splints for hands, note takers.
- Light weight robust laptops, ball track mouse.
- Word predictive text software.
- Utilise Occupational Therapists to get things in place for students with CMT when transitioning from Primary to High School.
- Daily routines with fine motor skills.
Speaker 5 – Mark Faraguna
- Patient assessment – gait, centre of gravity, deformities.
- Joint range of motion, skin condition, muscle strength.
- Fixed AFOs – not flexible $300 to $400
- Articulated AFOs – more flexible, smoother gait $450
- Composites – not good for uneven surfaces, can crack and break.
- Custom composite – more complex to make, carbon fibre, cannot be heated to adjust.
- Silicone AFOs – not suitable for children as they grow too fast $2000
- Children need regular revues due to growth changes.
Speaker 6 – Feedback by Patricia Darnley-Stuart on the Children’s Workshop
- We were all greatly encouraged by the positive attitude of the children who participated in the workshop.
- To recognise that children with CMT can do different jobs at school which are just as important such as participating as helpers or timers if they cannot participate as athletes.
National Office:
(02) 9767 5105
Fax:
(02) 9767 5167
Email: