Mobility with ALS: From Simple to Complex AMBER L. WARD, MS, OTR/L, BCPR, ATP/SMS ROBERT FLANAGAN, ATP/SMS RESNA 2016
Objectives
Learners will understand the mobility needs of a person with ALS throughout the disease progression.
Learners will identify 3 power chair controls which can be used for the person with ALS over time.
Learners will recognize 3 pressure relieving and positioning cushions and backs which can be used for the person with ALS initially and also have long term comfort and function.
Learners will identify the unique needs of the client with ALS for flexibility, creativity and loaner options for long term functionality.
ALS refresher
Rapid, progressive loss of voluntary muscle control
Variable in progression and life expectancy
Can affect cognition/behavior, respiratory, swallowing, emotionality
Generally sensation not affected
Unknown cause, no cure
Can begin in almost any muscle group and progress in any direction
30,000 Americans in US with ALS at any given time
Can eventually lose all muscle control and be “locked in”
Mobility guidelines
Proactive care
Avoid falls
Loaners
Power mobility early
Accessibility of home addressed early
Progression
Speech/swallowing first symptom
Bilateral arm weakness first symptom
Endurance, SOB, neck/upper back weakness affect mobility Can’t catch themselves with a stumble/fall
One sided weakness in arm/leg- ambulation often affected earlier
Can progress to other side, across sides, in any direction
Ankle weaker or hip weaker
Mild weakness
Stumble/trip frequently, catch toe, may need ankle bracing
Often try to compensate with cane- not as stable
Rollator walker works better- endurance, balance, distance, seat, carrying items
Fatigue, decreased endurance
Mild Weakness
Transport wheelchair/Manual wheelchair for long distances
Energy Conservation
Difficulty over uneven terrain, steps
Need a ramp on the home
Loaner power wheelchair, scooter, basic PWC
Loaners
MDA, ALS Association, churches, community centers, service groups, some suppliers/manufacturers, state-funded Assistive Technology Programs
Partner with a supplier to house equipment, make deliveries, fit equipment, train users
Important for proactive care, prevent falls, maintain leisure options
Moderate weakness
Tiring more easily with walker
Stumble even with walker
Some falls, especially with turns
Manual wheelchair often no longer functional for independent propulsion if using before
Think about power wheelchair when still taking steps
Begin to trial wheelchairs, start the evaluation process, use loaner if not in one already
Evaluation Process
Long term flexibility paramount!!
First chair often only chair
Complex rehab, group 3, high end
Mat eval often very routine- often normal bodies, not obese
Expandable electronics
Pressure relieving/positioning cushion- current needs vs. future
Supportive backrest- slumping, posterior pelvic tilt
Head support with adjustability
Accessories- cup holder, hooks, tray
Power positioning needed
Power positioning (x4 or more if possible)
Tilt, recline, seat elevate, elevating legs
Standing
Anterior tilt
Funding
VA
Get what they need (generally), can be longer waits, therapists at times less knowledgeable about ALS
Medicare
Pays only 80%, secondary important
No seat elevate, no gel accessories, no power invertor
Problems with replacement plans
Specific rules and restrictions
Private Insurance
Copays can vary
In-network vs. out
Deductibles
Some plans contract out equipment reviews, increased time
Choices for flexibility
Top end from each manufacturer:
Quickie
Permobil
Motion Concepts
Quantum
Invacare
Amy Systems
Factors in choice:
Local representation
Quality product
Costs/funding
Flexible electronics
Product ability to adapt
Client home/terrain/space issues
Demos to trial
Cushion thoughts
Standard
Gel
Foam
Air
Hybrid
Backrest options
Rehab back often to start
Interface after market backs
Lumbar control
Built in lateral support
Air for extra pressure relief
Custom foam layers
Adjustability components
Moderate to severe weakness
In power wheelchair full time
May sleep/nap in wheelchair
Physical and emotional strain More comfortable and mobile than bed, less transfers
May have difficulty with standard/starting drive controls, may need alternative controls
Often start with hand, weakens over time
Assess before unable to control
Determine best access points now and in future
Attendant control
Mobile arm support use
Positioning/Pressure relief
Pressure relief/pain relief paramount
Slumping in wheelchair
Alternative cushion needs when not standing
Maintain control over power features- use often for movement
Positioning needs
Laterals
Thigh/hip guides
Lateral facial pads
Dynamic Forehead Strap
Arm troughs
Gel
Chest strap
Control- Proportional
Light throw
Micro-lite
Compact- midline
Foot control
Touch pad
Adjust throw, programming, position of joystick
Joystick handles
Various shapes/sizes
Consider height
Consider on/off, positioning
Weight of item
Switch/Non-proportional
Head array
Sensor only
Sensor and force
Multi-sensor options
Combination options
Sip and puff (either drive or as switch)
Magitek
Multi switch/single switch
Switch options
Multi switches
Single switches
Force
Proximity
Fiber optic
Touch
EMG
Additional items needed
Invertor- multiple power options
Bag hooks for respiratory devices/supplies
Communication device mounting
Control over TV, phone, computer mouse, etc.
Severe weakness
Pressure relief/positioning/pain relief
May not be able to consistently control the power wheelchair
Single/double switch scanning may be needed
Attendant control used most of the time
May get to locked in state- eyes last to move
Ventilator/feeding tube
Hospice can assist- no funding for equipment changes
Wrap up - take home thoughts
Every person with ALS is very different
Proactive care
ALS/MDA clinic vs. PCP/local provider
Use resources- grants, loaners, demos, suppliers/manufacturers
Support groups, PALS
Frequent follow-up about changes
Amazing population!!
Questions?
Amber L. Ward
704-355-0787
[email protected]
Robert Flanagan
980-721-3107
[email protected]
