Physical Therapy Workshop End Duchenne Tour Dallas, TX October 13, 2018

Size: px

Start display at page:

Download "Physical Therapy Workshop End Duchenne Tour Dallas, TX October 13, 2018"

Katrina Fitzgerald
5 years ago
Views:

1 Physical Therapy Workshop End Duchenne Tour Dallas, TX October 13, 2018 Leslie Nelson, PT, PhD University of Texas Southwestern Medical Center Children s Health, Dallas

2 Physical Therapy Standards in Duchenne We will be covering: - What we know about Exercise - Management of the musculoskeletal system - Stretching/Splinting/Positioning - PT Management at different stages - Clinical Trial Participation

3 What we know about exercise No exercise leads to muscle atrophy Too much exercise hastens muscle breakdown Eccentric contractions are more damaging to the muscle cell Younger boys benefit more than older boys Boys with DMD are 40% less active than age matched peers (McDonald, 2000)

4 Exercise Recommendations Mild to Moderate exercise appears to be safe Balance activity with rest Don t overdo Avoid generalized fatigue Avoid muscle soreness Concentric versus eccentric activities Low load/intensity versus high load/intensity Incorporate balance and coordination skills Activities should be fun and promote self esteem Encourage social interaction through recreational activities.

5 Aquatic Activities Safest form of exercise Non weight bearing- low load activity Able to move through full range of motion Improves aerobic function Encourages walking Develops independence and confidence Fosters a life long recreational activity Freedom of movement in later years

6 Aquatic Exercise Aquatic Therapy or Just Family Fun Water is Fun!!!

7 Cycling Activities Encourages non-weight bearing exercise Avoid excessive resistance avoid hills or give assistance avoid muscle fatigue limit duration add power when needed to keep submaximal Upper Extremity Ergometer

8 Tricycles & scooters for young boys Recumbent style often easier to pedal

9 Adapted tricycles for stability and safety Rifton Fat wheels Schwinn Meridian

10 Assisted Cycling Power assist bicycles Stationary exercise bike Upper extremity ergometer Ex-n-Flex (active assist) Cyclamatic

11 Participation Robotics club Stem-works.com Boy Scouts Chess Club Dallaschess.com Theater Groups MDA Camp

12 Stretching and Positioning Why is muscle flexibility so important?

13 Maintains Symmetry Shifts weight to one leg Increase IT tightness Increased calf tightness PPMD: Helen Posselt PT

14 Prolongs walking skills DMD compensatory patterns Trunk extension & Lordosis Lateral trunk lean Steppage pattern Rise up on toes Widen base of support Decreased stride length Toeing in (hip rotation) Flexibility promotes improved balance

15 Improves posture in wheelchair Seating issues with: Scoliosis/Lordosis Iliotibial band tightness Equinovarus contractures Hamstring contractures

16 Benefits from new drugs

17 We can t prevent all contractures Can we slow the process? Splinting Stretching Positioning

18 Ankle Resting Splints Maintains prolonged stretch 6+hours/night Shown to be effective (Scott et al 1981, Hyde et al 2000) Best when forefoot is supported 6-8 hours/night 6-7 nights/week

19 Splinting: Non-ambulatory phase May be worn during the day in wheelchair or at night > 6 hours per day/night 6 to 7 days per week Limits feet from turning in Maximize comfort Initiate hand splinting

20 Gentle Stretches Parent assisted Self stretching Gentle Stretches Hold 30 seconds Repeat 2-3 times

21 Positioning Long sitting postures Standing wedges Prone Lying Yoga activities Nadachair.com Photo by Helen Posselt PT YouTube: Stretchout!

22 Which muscles are at risk? Ambulatory Phase Transitional Phase Wheelchair Phase Hamstrings Hip flexors Elbow flexors Gastroc soleus Hip abductors Shoulder muscles Posterior tibialis Forearm supinators Wrist flexors Finger flexors Neck extensors

23 Muscles at risk Ambulatory Phase Hamstrings knee flexion Gastroc soleus ankle plantarflexion

24 Muscles at risk Transitional Phase Hip flexors Hip abductors Posterior tibialis foot inversion Forearm supinators

25 Muscles at risk Wheelchair Phase Elbow flexors Shoulder muscles Wrist flexors Finger flexors Neck extensors

26 Stretching Resources for You PPMD Website Stretches for Duchenne Muscular Dystrophy (CD)-View online Instructional Photographs -View online =11703 YouTube Stretches for Duchenne Muscular Dystrophy-YouTube Video CINRG Website StretchOUT Stretch Instruction and Workout

27 Stretching Tips Start early before muscles are tight Stretch joints in isolation Keep hands soft and close to the joint Prolong the stretch (30 seconds x 3 reps) Younger child may need shorter duration Maintain appropriate alignment of joint Watch your body mechanics

28 Keys to Success Make it a part of your child s daily routine Make it FUN Engage your child & other family members Initiate an incentive program Incorporate favorite activities during positioning

29 Physical Therapy through the Lifespan Annamarieas.com

30 Stage 1: Stage 2: Stage 3: Stage 4: Stage 5: Pre Symptomatic Early Ambulatory Transitional Early Nonambulatory Late Nonambulatory

31 Presymptomatic Stage Preventative Stretching Manual stretching by parents Long sitting activities Initiating night splints Physical Therapy Maximize Gross Motor Skills Family education and home program Maximize balance and coordination express.co.uk

32 Early Ambulatory Stage Preventative Stretching Parent or Self Stretches Night splints Standing wedge Balance and Coordination Maintain postural symmetry Encourage physical activity Recommendations for PE Nytimes.com

33 Transitional Stage Preventative stretching Maintain postural symmetry Initiate mobility device for longer distances Modified PE activities Encourage aquatics Manage weight gain ocregister.com

34 Early Wheelchair Stage Continue stretching and positioning Ankle splints worn night or day Maintain neutral W/C posture Encourage aquatic activity Transfer training Equipment Management wcpo.com

35 Late Wheelchair Stage Maintain range of motion Aquatic activity as tolerated W/C positioning Equipment for transfers Increase use of technology Encourage social activities Training for caregivers

36 Clinical Trial Participation

37 Clinical Trials Vitally important to improving health and quality of life for people with DMD Study outcomes or efficacy endpoints are often tested by a physical therapist Study outcomes may depend on the mechanism of action of the drug being investigated

(rise from floor, 10 m walk/run, stairs) Performance

38 Study Outcomes 6 Minute Walk Test North Star Ambulatory Assessment (NSAA) Timed function testing (rise from floor, 10 m walk/run, stairs) Performance of Upper Limb (PUL) Pulmonary Function Testing Strength testing

39 Considerations for Testing Time of Day Age/Behavior Standardization of Procedure Manual of procedures Same environment/same evaluator Clinical study outcomes may differ from clinic outcomes Plan for 1-2 hours

40 THANK YOU! Leslie Nelson: PPMD: Thank you to Leslie Vogel, PT and others for contribution of slides

Physical Therapy throughout the Life Span. Tina Duong Stanford University Leslie Vogel, MSPT Seattle Children s Hospital

Physical Therapy throughout the Life Span Tina Duong Stanford University Leslie Vogel, MSPT Seattle Children s Hospital Lifetime Goals for Physical Therapy Maximize Participation in school, work, community