occupational therapy management of hypermobility in ehlers ...ehlers-danlos.com ›...
TRANSCRIPT
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Occupational Therapy Management of Hypermobility in Ehlers Danlos Syndrome
Michelle O’Sullivan (OTR/L) & Michele Pavlis (OT)
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About Us
EDNF Conference 2010
We re-unite EDNF 2011 & the idea of this presentation is born!
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What is Occupational Therapy?
Occupation: the roles you play in your life and the performance of tasks and activities than enable you to fulfill those roles
Therapy: enabling you to fulfill your
roles and find meaning in your activities
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Who do we work with?
Team Approach – We work WITH:
• Physical Therapists • Speech Therapists
• Psychologists • Doctors & Physicians
• Social Workers & Counselors
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What is the aim of OT?
• to promote and maintain your independence in as many aspects of your life as possible
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How do I get seen by an OT?
• Referral / Script from your Doctor • You will need to request this from your
Doctor as not all medical professionals understand OT roles and services which are helpful for people with EDS
• You need to specify to your Doctor that you require a full assessment of your activities of daily living
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What might the OT do for me?
• Initial Assessment / Evaluation • Make splints • Order assistive devices / equipment through your
insurance • If necessary, they may do a home assessment • Make recommendations for modifications or other
equipment that you may benefit from • Help with problem solving and cognitive strategies • Recommendations for exercises and activity
modification
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continued...
An OT can help you • access programs and services in your
community • build and maintain your support systems
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What can an OT do for someone with hypermobility?
Mind
Body
Spirit
Emotion
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People usually present with PHYSICAL difficulties:
after joint dislocations/ subluxations with pain fatigue gastrointestinal problems mobility issues
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Initial Assessment
Cognitive Physical Social
Emotional Spiritual
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Energy Conservation
“We need to learn to move efficiently so that we can save
our limited energy for the important things”
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Energy Conservation continued…
• keep frequently used items in a special place which is always the same place!
• write checklists • keep everyday items such as cutlery, plate & bowl and glass at waist level
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Continued…
• make use of online shopping for groceries, or do multiple small shopping trips per week OR – take a friend with you to help & save a trip!
• use a small bag to put frequently used items in
USE YOUR BRAIN to SAVE YOUR BODY
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Pain Management
Just because our thoughts impact our pain…
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It doesn't mean the pain is ‘all in our
heads’ (as we think we hear people tell us)
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It doesn't mean that we are somehow
willing the pain and making it happen
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It doesn't mean that if we have complete
control of our thoughts and always think
positively, that pain won't occur
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Continued…
HOWEVER…. Some ideas: • Keeping a thought diary • Working out our instinctual response to
pain – Do I fear pain? - Do I gain something from it? – Do I dwell on it? - Do I get fixated on it? – Do I catastrophize? - Will people believe me?
• Thought management – Is my thought helpful? - Is it a hindrance? – How true is what I’m saying to myself?
• Other strategies
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Other strategies for pain management
• Relaxation / meditation • Diversional therapy • Goal setting & rewards
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Relaxation & meditation
• Takes practice • Particularly helpful
strategy for falling asleep
• Commercially available vs. pain management specific
• The Gratefulness Alphabet
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Diversional therapy
• Watching TV/ DVDs • Listening to or
playing music • Reading • Meeting up with
friends or family and doing something/chatting
• Painting • Craft • Going to the movies • Baking/cooking
•Painting your nails (girls)
•Playing games, digital or board games •Chatting over the phone or Skype with a friend •Watching sport •Enjoying nature •DIY jobs, home projects
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Other therapies & modalities
• Heat or ice packs • Aquatic Therapy • Physical Therapy • Cranio-Sacral Therapy • Reiki and Healing Therapies • Massage therapy • Acupuncture • Pilates • Tai Chi • Dry Needling • Trigger Point Injections
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Goal Setting (an OT’s favorite thing)
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Rewards
• Intrinsic = internal reward “I did a great job & I’m proud”
• Extrinsic = external reward “I’m going to buy myself a new dress because I did that so well”
• Motivating • Appropriate
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Joint Protection Techniques
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before you start, or as soon as you remember thereafter
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Should I be doing this at all? If yes, how should I do this to minimize risk of injury? Can I do this another way? What joints am I using, which ones do I need to protect, or which stabilizing muscles do I need to switch on to do this safely? Am I going to go into my hypermobile range/hyperextension to do this? Can I cope with any consequences?
Be particularly careful if you are doing
anything involving •Weight
•Repetition •High impact
•Prolonged static positions
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Only if you have worked out the best way to do the task…
if you should be doing it at all!!
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Home Set Up & Equipment Checklist
• Kitchen • Bathroom • Bedroom • Living Room • Car • Work place / work station
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Kitchen
• Check countertop height • Easily accessible utensils and frequently used
items • Minimise the weight of appliances and other
items like pots & pans • Be careful of how heavy food/drink items are
that you purchase at the shops
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Bathroom
• Is it SAFE? • Can you reach things? • Do you need some assistive devices to help
you bathe independently?
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Bedroom
• Easy access to items used most often • A good mattress & pillow • Decrease the amount of electrical equipment &
technology in your room • Make your room as dark as possible to
promote sleep
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Living room
• Check the height of your sofa or couch • Are there any trip hazards?
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Car
• Check steering wheel and pedal height • Seat position • Handicap placard
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Work place / work station
• Check desk height • Check workstation set up • Take breaks • Check lighting and airflow
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Assistive Devices
• Meal Preparation • Eating • Cleaning • Bathing • Laundry • Work / school • Other
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Meal Preparation
JarKey
CanKey Zyliss 5 in 1 opener
Dycem jar opener Dycem Grip Mat
Cordless Kettle Tipper
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Eating
Cylindrical foam
Rocker Knife
Built-up cutlery
SHARP knives
Trolley/Cart
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Cleaning
Long handled cleaning brush
Long handled
dustpan & broom
Long handled reacher
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Cleaning…
Robot Vacuum
Long handled toilet brush
Long handled
brush
Long handled
duster
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Bathing
Long handled toe washer/dryer
Long handled
back sponge
Shower Stool
Toothbrush grip
Toothpaste dispenser
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Laundry
Machine Raiser
Easy clothes pins
Drying line
Laundry Trolley
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Work / School
Slope Board
Laptop dock
Footrest
Gel wrist support
Copy holder
Ergonomic Mouse
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Other
Key Turner
Swivel Seat
Car Handy
-bar
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Other…
Tap Turners
Meds reminder
Meds organizer
Blister pack opener
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Opportunity for change
Redefine your purpose
Acceptance
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Spiritual/Emotional Impacts
• YOU are not your ability or your dis-ability
• Your EDS does NOT define YOU • You are a person WITH EDS, not an
EDS patient
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Continued…
• There will be setbacks along the road; life might change direction completely… but WHO YOU ARE does not change
• When setbacks occur, we need to redefine our expectations and goals, and reassign our energy, skills and talents to new things
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An occupational therapist may be just the resource you need to achieve all of this and lead a life that is meaningful to you.
Visit the following for more information about OT in your country:
www.aota.org (USA) www.cot.co.uk (UK)
www.ausot.com.au (Australia) www.caot.ca (Canada)
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Children’s Book
My Bendy Body by Michelle O’Sullivan
RRP: US$20
Visit www.hypermobilot.com.au for more info on ordering