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Occupational Therapy Management of Hypermobility in Ehlers Danlos Syndrome

Michelle O’Sullivan (OTR) & Michele Pavlis (OT)

What is Occupational Therapy?

Occupation: the roles you play in your

life

Therapy: enabling you to fulfill your

roles and find meaning in your

activities

Who do we work with?

Team Approach – We work WITH:

• Physical Therapists

• Speech Therapists

• Psychologists

• Doctors & Physicians

• Social Workers & Counsellors

What can an OT do for someone with hypermobility?

Mind

Body

Spirit

Emotion

People usually present with PHYSICAL

difficulties:

Joint dislocations & subluxations

Pain

Fatigue

Gastrointestinal problems

Mobility issues

Initial Assessment - COGNITIVE

What impact does Ehlers Danlos have on

your cognitive functioning?

What are your mental coping mechanisms?

Are your pain meds impacting your thought

processing?

Is fatigue making your brain foggy?

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Initial Assessment - PHYSICAL

What are the physical impacts of your

hypermobility?

Are you dislocating, subluxing, getting

muscle spasms?

Is your pain under control?

Can we strengthen any muscles to help you function better?

Continued…

What does all of this mean for your ability

to engage with your environment?

Do we need to look at modifications to your

environment?

Or do your tasks and activities need modifying to accommodate your physical

needs?

Initial Assessment - SOCIAL

Can you still work?

Do you need employment support?

Do you need financial support?

Are you able to get out & about in the community?

Are you still able to see family & friends?

Initial Assessment - EMOTIONAL

What emotional impact is this having on

you?

Are you having difficulties with your mood,

social interaction, communication?

Are you feeling supported?

Would you benefit from counselling services?

Initial Assessment - SPIRITUAL

What impact is your chronic health condition having on your sense of who you are?

Has your condition had an negative impact on your self-image?

Do you still realise that you are inherently good, despite having a body that doesn't work the

way you would like?

Can we help you reintegrate/re-engage with a

previous spiritual belief or practice?

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, especially if you are

trying to get packed for something e.ggoing on vacation

• keep everyday items such as cutlery,

plate/bowl and glass at waist level

Continued…

• make use of online shopping for

groceries; OR do multiple small shopping trips per week ; OR take a friend with you

to help you and save you a trip!

• use a small bag to put frequently used

items

USE YOUR BRAIN to SAVE YOUR BODY

Pain Management

Just because our thoughts impact our pain…

It doesn't mean the

pain is ‘all in our

heads’

It doesn't mean that

we are somehow willing the pain and

making it happen

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?

• Thought management – Is my thought helpful? - Is it a hindrance?

– How true is what I’m saying to myself?

• Other strategies

Other strategies for pain management

• Relaxation / meditation

• Diversional therapy

• Goal setting & rewards

Relaxation & meditation

• Takes practice

• Particularly helpful strategy for falling asleep

• Commercially available vs. pain management specific

• The Gratefulness Alphabet

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

Other therapies…

• Cranio-Sacral Therapy

• Reiki and Healing Energy

• Massage Therapy

• Acupuncture

• Pilates

• Tai Chi

Goal Setting (an OT’s favorite thing)

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Rewards

• Intrinsic – “I did a great job & I’m proud”

• Extrinsic – “I’m going to buy myself a new dress because I did that so well”

• Motivating

Joint Protection Techniques

before you start,

or as soon as you remember

thereafter

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?

Be particularly careful if you are doing anything involving

•Weight•Repetition

•High impact

•Prolonged static positions

Only if you have worked out the best way to do the task…

if you should be doing it at all!!

Home Modifications Checklist

• Kitchen

• Bathroom

• Bedroom

• Living Room

• Car

• Work place / work station

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Kitchen

• Counter-top height• Frequently used items at waist level• Could you use a stool/bar stool/pub chair so

you don't have to stand?

• How heavy are your pots and pans? Could they be lighter? Could they stay out on the stove top?

• Could you buy 2 x 1 liter jugs of milk or juice instead of one 2 liter one?

• Cans with pull tops instead of ones needing a can opener, or use an electric can opener

Bathroom

• Are things within easy reach in the shower? Do you need a hanging shelf to make them reachable?

• Are you likely to slip in the shower or the bathroom floor?

• Do you get light headed when you get hot? Do you need a shower chair so you don't pass out & fall in the shower?

• Do you need long handled washers to help you with bathing?

• Do you need a walk in tub?

Bedroom

• Are frequently used items in the top draws?

• Can you open the draws easily? Do you need to build up the handles, or get someone to oil or smooth the tracks on your draws?

• Can you avoid putting things in cupboards above your head?

• Is your mattress supportive enough, or soft enough?

• Do you have a good supportive pillow?

Continued…

• Is your bed high enough that you don't

have to get down to it or up from it?

• Is it dark enough to promote sleep?

• Do you switch off your computer and

other electronics when you go to bed?

• Do you have enough fresh air?

Living room

• How high are your couches/lounge? Do

you sink into it or does it provide some support?

• Do you have to turn your head to see the TV?

• Are there things you could trip on like

rugs? Or corners that you always run into?

Car

• Do you have the steering wheel and

pedals at the correct height for you?

• Is the seat too far forward or back?

• Are your hips higher than your knees?

• Do you have a neck pillow for support &

comfort if you are a passenger?

• Do you have a handicap placard for those tough days?

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Work place / work station

• Is your desk height ok?

• Is your computer workstation set up correctly?• Monitor height

• Desk height

• Chair height and adjustments

• Foot rest

• Laptop dock and external keyboard and mouse

• Are you taking frequent breaks?

• Do you have good lighting?

• Is there enough air flow?

Assistive Devices

• Meal Preparation

• Eating

• Cleaning

• Bathing

• Laundry

• Work / school

• Other

Meal Preparation

JarKey

CanKey Zyliss 5 in

1 opener

Dycem jar openerDycem Grip Mat

Cordless Kettle

Tipper

Eating

Cylindrical

foam

Rocker

Knife

Built-up

cutlery

SHARP

knives

Trolley

Cleaning

Long handled cleaning brush

Long handled

dustpan & broom

Long handled reacher

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

Laundry

Machine

Raiser

Easy clothes

pins

Drying line

Laundry Trolley

Work / School

Slope Board

Laptop dock

Footrest

Gel wrist support

Copy holder

Ergonomic Mouse

Other

Key Turner

Swivel Seat

Car Handy

-bar

Other…

Tap

Turners

Meds reminder

Meds organizer

Blister pack opener

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

Re-define

&

Re-assign

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