EDS Teen Program. Donna Olivero, PT PRC

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1 EDS Teen Program Donna Olivero, PT PRC

2 Ehlers Danlos Syndrome EDS- A Multi-system Disorder Pain-Intense and Unique. Theorized to originate from various body systems Sympathetic Nervous System: fight or flight Parasympathetic System: rest and digest

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5 Effects of lack of collagen in our bodies and hits from our environment feed the sympathetic overload We can focus on ways to minimize the overload that can lead to sleep problems, more pain, and fatigue.

6 With EDS, the body has to work overtime to remain functioning and balanced Our current culture: The good: Medical research, earlier diagnosis Not so good: Lack of reciprocal movement effects respiration and alignment. Electronics: sedentary posturing, overuse of small joints, little peripheral visual input

7 Ribcage and Respiration If body is not breathing correctly, it will adjust itself to allow more airflow: Over reliance on cervical muscles to lift ribcage. Respiratory diaphragm out of position leads to spinal alignment problems: body relies on superficial, rather than deep muscles for alignment. The true core is not washboard abs! True core is diaphragm, transverse abdominus, and pelvic floor muscles

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9 Alignment and Stability Add stability wherever we can: Footwear Reference centers Mouthguards, dental devices Good postural habits Exercise

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12 Flipflops: Enemy in disguise. Comfort with no stability

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14 Footwear option: Athletic shoe with good orthotic

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16 Better footwear option: High stability athletic shoe

17 Components of a Good Shoe Heel stable: Inflexible heel counter; heel will not slide around or come up out of shoe when walking Ability to feel arch as you step through Flexibility at toe box. Should be able to feel big toe push off, and small toes should flex comfortably

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19 Dental devices/mouthguards There are multiple connections between jaw, neck, and cranium. Headaches and neck pain may improve with proper teeth and jaw alignment Adding stability with a dental device can reduce spasm and improve alignment

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22 Seated Posture Feel sitz bones Neutral pelvis with balanced spinal forces Solid chair back can help alignment Feet grounded, flat on floor. Occasional position change Ok Small towel at base of spine may help keep pelvis in position

23 Too much flexion: forward head. Overstretch of back muscles and ligaments

24 Too much extension: Overuse of back extensors to hold body up

25 Good alignment

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27 Standing Posture Good standing posture starts with good footwear Unlock knees (may have to work on this over time). Spend a little more time unlocked each day Due to our heavier visceral organs on the right, most people shift weight onto the right leg more than left. Try to keep weight evenly distributed

28 Not Good. Knees locked. Body hanging on back extensors

29 Good standing posture. Knees unlocked. Improved weight distribution

30 Bracing Bracing does not weaken muscles Bracing can align joints so muscles are lined up to contract more efficiently

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34 Taping Taping can add extra support. Type of tape may need consideration: Allergies to latex Strong adhesive not good for sensitive skin

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37 Adding Stability with Exercise Stabilizing with deep core muscles is essential with EDS Our true core: 1. Respiratory diaphragm 2. Transverse abdominus 3. Pelvic floor muscles Deep breathing exercises can be the first step in exercising when experiencing severe pain Deep breathing dampens sympathetic response, relaxes spasm. Positions respiratory diaphragm more optimally and allows good lymphatic flow Exercises can be progressed keeping the abilities of each individual in mind. COMFORT is extremely important

38 Pillows and towel rolls can add needed points of reference for isometric exercise and provide comfortable sensory input

39 Postural Restoration Institute: Modified Seated Bar Reach

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41 Postural Restoration Institute: Supine Hooklying T8 Extension. Pelvic stability, proper airflow, and shoulder stability

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43 Postural Restoration Institute: Supine Triceps Extension

44 Supine Serratus Anterior

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46 Postural Restoration Institute: 90/90 Hip Lift Pelvic positoning with beginning weightbearing and proper airflow

47 PRI: 90/90 Hip Lift with Balloon

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49 PRI Wall Squat with Balloon without Arm Reach

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51 PRI: Standing Squat with Chair

52 Weightbearing into shoulders without Stressing wrists, hands and knees

53 Safely increasing the Exercise Challenge Stationary bicycle: modify pedaling Treadmill: Walk uphill Aquatics: Many benefits of exercising in water, but water is resistance, so may need gradual progression Squatting: Good for deep stability and intestinal motility but should be done with good alignment and stability (definitely not an entry level exercise!)

54 Pull rather than push pedals

55 Walk on an incline for Improved spinal flexion and recruitment of gluteals

56 Standing squat

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60 What should I avoid? Extremes of posturing: Don t entertain friends with a show of your extreme flexibility! Avoid repetitive movements: eg.: getting out of car on the same leg each time, reaching with seatbelt with same arm, using thumb for text messages Excessive Screen Time: Static poor posturing, repetitive movements with small joints, static visual input.

61 Conclusion Even with EDS, our bodies have the capacity to heal and be well. We must try to eliminate the stressors on our bodies as much as we can. Don t stop moving even when pain tells us not to move Be encouraged and try to encourage others

62 Thanks to: The Postural Restoration Institute 5241 R St. Lincoln, NE

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