Download Length Strength Kiddy-Up Kit or Nadia Seat www.specialkidszone.com

Adaptive Exercise for Individuals Living with Spina Bifida 39th SBA National Conference Gearing Up For the Future Indianapolis, IN June 28 –July 1, 2012

Liz Kelly, PT

Penn State Hershey Children’s Hospital The Pennsylvania State University College of Medicine Hershey, Pennsylvania Mobile: 717 919 0208 EMAIL: [email protected] or [email protected]

Vital Components of a Physical/Occupational Therapy Program

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Proper positioning in sitting and sleeping Stretching (Muscle Length) Strengthening Pressure relief and joint protection Mobility for short and long distances Transfers and activities of daily living Self-care

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From Hinderer KA, Hinderer SR, Shurtleff DB, Myelodysplasia. In Campbell SK, Palisano RJ, Vander Linden DW (eds), Physical Therapy for Children, 2nd edition. Philadelphia, WB Saunders, 2000, pp 621-670.

Matt Scott appears in the Nike “No Excuses” Commercial UWWhitewater wheelchair Basketball player

EXCUSES I’m too weak, too slow, too big I ate too much for breakfast, I’ve got a headache, My dog is sick It’s raining, I can’t right now, I’m not inspired Makes me smell bad, I’m allergic to stuff, I’m fat, I’m thin, It’s too hot, I’m not right, I’ve got shin splints, I’ve got a headache, I’m exerting myself too much, Love to, but I can’t: just can’t, My favorite TV show is on, I’ve got a case of the Mondays, the Tuesdays, the Wednesdays I don’t want to do this. I want to do something else After New Years, next week, I might make a mistake, I’ve got homework, I feel bloated, I’ve got gas, I’ve got a hot date, The coach hates me, My mom won’t let me, I bruise easily, It’s too dark, too cold, my blister hurts, This is dangerous, I don’t have a bike, I didn’t get enough sleep, my tummy hurts… and my feet hurt

Learn Your Anatomy – Your healthcare team can be the teachers Motor (movement) & Sensory Loss The level is named for the spine bone or vertebra. Below this vertebra the nerve or lesion is the same number. The outgoing motor nerve system ends in the muscles of the legs and the bowel and bladder. This break/loss with the brain will cause loss of voluntary control. The ingoing sensory system that responds to the sensations of pain, temperature and touch are lost.

www.childrensmemorial.org

NATIONAL SPINA BIFIDA PATIENT REGISTRY DIAGNOSIS TYPE OF LESION FUNCTIONAL LEVEL OF LESION Thoracic (T) Flaccid LE’s High Lumbar (L2 Ilipsoas) Middle Lumbar (L3 Quadiceps) Low Lumbar (L4 Tibialis Anterior) Sacral (S1 2/5 Gastrocnemius/Soleus) (S2 3/5 Gastrocnemius/Soleus) Sacral (S2, 3 and 4 Bowel and Bladder)

Determine Myelomeningocele Level • Motor function below that level is absent or impaired • Higher levels (thoracic) less functional • Problems specific to each level Dr. Romness

• Often defined as lowest level of normal sensation Left and right sides often different Skipped Lesions

PREVENTION OF CONTRACTURES • Many muscles work in pairs to keep bones in line + balance the movement of joints • SB often causes one muscle of a pair to have full function while the other is partially or completely paralyzed. • This imbalance can lead to a variety of problems including dislocated hips, bowed legs, foot deformities and curvature of the spine. • Conditions can be present at birth, others develop over time. • Some contractures and deformities can be prevented • Contractures can limit the use of bracing or mobility aides • Contractures can complicate dressing and transfers • Poor sitting posture can compromise sitting stability, alignment of spine, the function of internal organs and general health • Children’s National Medical Center Washington D.C. Spina Bifida Program Guide

Muscle Length, Length Measurements, and Muscle Extensibility Know your baseline and your goal Human muscle length measurements are, with few exceptions, measurements of joint angles. It may not be possible to determine what degree the joint itself and its capsular structures (as well as skin, connective tissue, muscles, and neurovascular structures) contribute to extensibility limitations and passive resistance.

Learn pelvic mobility/stability maintain length/strength of low back and abdominal muscles

Lordosis

Pelvic Tilt

Keep Pelvis Stable + Low Back Stable when working on hip flexor length and strength

STABLE SPINE Flatten lower back by using lower abdominals to pull pelvis up

Keep it Simple

Encourage lower body awareness: putting on socks, shoes. Washing feet and toes in the tub. By age 2 children can put on simple clothing items. EXECUTIVE FUNCTIONING starts early, TRANSITION

Take Care of Your Bones

Diminished Bone Mineral Density • Either osteopenia or osteoporosis, is a significant medical problem that must be considered when treating patients with myelomeningocele. The measurement of bone mineral density may help identify those patients at risk for sustaining multiple pathologic fractures. Single photon absorptiometry to measure BMD is readily available, inexpensive, and has been shown to be accurate and reproducible. •

Bone Mineral Density (BMD) in Myelomeningocele Lee S. Segal, MD

Dr. Lee Segal and Nurse Cindy Hulse Know your orthopedic doc and nurse coordinator

All questions are good questions!

Orthopedic Warning Signs • Weight bearing and muscle contractions are essential to the growth of normal bones. The child with spina bifida may lack some of this stimulus. The bones are normally strong but after mobilization is lost or after prolonged time in bed, the bones lose calcium and become brittle and are quite prone to fractures. • Swelling, deformity, local heat or redness, and fever are warning signals of a fracture. An Introduction to Spina Bifida by David G. McLone, M.D., Ph.D

Sit on your ischial tuberosities, extend/straighten your back

Proper Position of Pelvis is Crucial to Proper Posture Kiddy-Up Kit or Nadia Seat www.specialkidszone.com

Comfort Stretch TM A simple to use, in-home therapeutic tool that augments physical therapy. The unique design targets muscles while they are relaxed.

Take care of your feet Pampered Toes

Gyms are more accessible

Balance Gym, Mobility Fitness, Total Access (Stage 2 IFI Inclusive Fitness Initiative)

Good Core Strength • Joseph H. Pilates (1880-1967) He worked with war casualties by adding springs to beds to provide resistance and stretching training to help develop their muscular strength and flexibility • Devised a core strengthening program (centering) • Focus on proper posture and technique • Overall muscle length and strength • Pelvic control requires the balance of back and abdominal musculature • Arms and legs are more efficient when core is strong • If you are walking poorly, you tend to overuse all of your muscles and joints.

Joseph Pilates (1880 – 1967) Pelvic Control Requires Balance of Back and Abdominal Muscles

Benefits of Pilates (and programs for length and strength) •Improve strength, flexibility and balance •Tone and build long, lean muscles •Challenge deep abdominal muscles to support the core •Engage the mind and enhance body awareness •Create efficient movement patterns making the body less prone to pain and injury •Reduce stress, relieve tension and boost energy •Restore postural alignment •Create a strong, flexible spine •Increase joint range of motion •Improve circulation •Heighten neuromuscular coordination

Shoulder Stability is critical to doing Pilates exercises safely and effectively. Beyond the studio or gym, once you train yourself to stabilize the shoulder area through well-aligned exercise, you take that knowledge into everyday movement, thereby protecting your back and neck, and increasing movement efficiency. Shoulder stability is one of the many functional fitness aspects of Pilates. When we talk about shoulder stability, the term scapular stability is often used. Your scapula are the wing-like bones on your upper back, the shoulder blades. Relax your shoulders, draw your shoulder blades down or settle your scapula on your back. By increasing your awareness of the placement of your scapula, you will stabilize movement and promote a

• Be aware of shoulder alignment (thumb up) • Brains over Brawn (sensible, proper technique)

• Be aware of position of shoulder blade

Length, Strength, Balance, Stability, Talk to your doctor Mobility… before you start.

Statue of liberty standing to lengthen trunk, strengthen gluteus medius for stepping

Work with your therapist to set your goals.

Always work both sides, left and right. Pelvis, back and hips are important for stability

Pilates

Benefits of Pilates (and many programs for length and strength) •Improve strength, flexibility and balance •Tone and build long, lean muscles •Challenge deep abdominal muscles to support the core •Engage the mind and enhance body awareness •Create efficient movement patterns making the body less prone to pain and injury •Reduce stress, relieve tension and boost energy •Restore postural alignment •Create a strong, flexible spine •Increase joint range of motion •Improve circulation •Heighten neuromuscular coordination

Hands and Knees Position is the best for learning stable/neutral spine position

Keep your chin up

Slow and steady

Wins the race

Monument Circle many views on a single subject

Enjoy the conference and Indianapolis + Stretch = Arms Up