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Clinical Reference for Amyotrophic Lateral Sclerosis
1
ADL Adaptive Interventions
Meal Prep and Feeding
o Large or adapted handled utensils
o Rocker knives
o Universal cuffs
o Long straws
o Scoop dishes and plate guards
o Non-skid pads
o Mobile arm supports
Dressing
o Button hooks
o Zipper pulls
o Velcro fasteners
o Elastic shoelaces
o Reachers
o Dressing sticks and Sock aids
o Long handled shoe horns
Grooming and Hygiene
o Strap fitted hair brush
o Long handled comb
o Long handled sponge
o Foam cylinder handles
o Lightweight electric shavers and
toothbrushes
o Floss holders
Reading and Writing
o Page turning devices
o Large or Adapted handles
o Book easels
o Tilt top over bed tables
o Rubber thumbs
o Writing splints
o Dry erase writing boards
Exercise and Mobility
General Exercise
o 2 to 3 sets of 10 repetitions of a weight Pt.
can lift 20xs comfortably
o only exercise muscles 3 / 5 or better
o Aerobic exercise in 10 minute bouts 2 – 3
xs / wk
o Avoid high resistance and eccentric
exercise and focus on maintaining joint
range and function
Ambulation and Stair Climb
o Avoid crutches due to
trunk and UE
weakness
o AFO for foot drop
o Canes and Walkers
o Stairway lifts
o Chair glides
Transfers and Bed Mobility
o Firm / swivel cushions
o Lift chairs
o Power recliner lift chairs
o Sliding boards
o Transfer belts
o Mechanical lifts
o Step stools
o Bed canes / overhead trapezes
o Hospital beds
Wheel Chair Prescription
o In early stages may rent manual w/c,
transport w/c or scooter Save insurance for
expensive custom power chair
o Manual w/c should be light
o Important features include tilt, height
adjustable flat, recline, power elevating leg
rests, joystick control of power features, air or
gel cushion, soft headrest, gel or contoured
armrests and seatbelt
Oral and Respiratory Function Interventions
Dyspnea
o Deep breathing
o Coughing exercise
o Incentive spirometer
o Chest PT
o Elevate HOB
Dysarthria
o Speak face to face
o Good lighting
o Over articulate
o Alternative and augmentative communication devices
Dysphagia
o Head tilt and chin tuck
o Alternate solid and liquids
o Sitting upright during meals
o Soft moist foods and thicker liquids
o Elevate HOB during meal
Additional Interventions
Impaired Cognition and Emotion
o Reorganize responsibilities with family planning
o Home modification such as check lists to remind patient of hazards, removal of hazards and
supervision of potentially dangerous activities
o Modulate environmental stimuli and schedule activity to avoid irritation
o Suggest recommendations positively and guide choices
o While Pt. cognition is intact set up instructions for future decisions
Incontinence
o Accessible urinal or bed
pan
o Bowel routine
Pain management
o Stretching
o Gentle exercise
o Massage
o TENS
o ICE / Heat
o US / Iontophoresis
Helpful Resources
o ALS Association, Upstate New York Chapter: 315 – 413 – 0121 or 866 – 499 – 7257, alsaupstateny.org
o ALS Education and Awareness Group Meeting: 3
rd
Monday each month at Dent Neurologic Institute.
o Neuromuscular Disorders Center: Dent Neurologic Institute 1 – 716 – 250 – 2000.
o Muscular Dystrophy Association: Rochester MDA office; 585 – 434 – 6560.
o Buffalo General Medical Center MDA Clinic: 716 – 898 – 3239.
Clinical Reference for Amyotrophic Lateral Sclerosis
2
ALS Functional Rating Scale
o Scored from 0 least function to 4 most function. Mean score for patients with ALS is 45, MCID for improvement is 20% score
increase.
Speech
o Normal speech process
o Detectable speech disturbance
o Intelligible with repeating
o Speech combined with non-vocal communication
o Loss of useful speech
Turning in Bed
o Normal
o Somewhat slow and clumsy, but no help needed
o Can turn alone or adjust heels, but with great difficulty
o Can initiate, but not turn or adjust sheets alone
o helpless
Salivation
o Normal
o Slight but definite excess of saliva in mouth, may have
nighttime drooling
o Moderately excessive drooling, may have minimal drooling
o Marked excess of saliva with some drooling
o Marked drooling, requires constant tissue or handkerchief
Walking
o Normal
o Early ambulation difficulties
o Walks with assistance
o Non ambulatory functional movement only
o No purposeful leg movement
Swallowing
o Normal eating habits
o Early eating habits – occasional choking
o Dietary consistency changes
o Needs supplemental tube feeding
o NPO (exclusive paraenteral or enteral feeding)
Climbing Stairs
o Normal
o Slow
o Mild unsteadiness or fatigue
o Needs assistance
o Cannot do
Handwriting
o Normal
o Slow or sloppy; all words legible
o Not all words are legible
o Able to grip pen but unable to write
o Unable to grip pen
Dyspnea
o None
o Occurs when walking
o Occurs with one or more of the following; eating bathing,
dressing (ADL)
o Occurs at rest, difficulty breathing when either sitting or
lying
o Significant difficulty, considering using mechanical
respiratory support
Cutting Food
o Normal
o Somewhat slow and clumsy, but no help needed
o Can cut most foods, although clumsy and slow, some help
needed
o Food must be cut by someone, can still feed slowly
o Needs to be fed
Orthopnea
o None
o Some difficulty sleeping at night due to shortness of breath.
Does not routinely use more than two pillow
o Needs extra pillows in order to sleep (more than two)
o Can only sleep sitting up
o Unable to sleep
Dressing and Hygiene
o Normal function
o Independent and completes self care with effort or
decreased efficiency
o Intermittent assistance or substitute methods
o Needs attendant for self care
o Total dependence
Respiratory Insufficiency
o None
o Intermittent use of BiPAP
o Continuous use of BiPAP
o Continuous use of BiPAP during the night and day
o Invasive mechanical ventilation by intubation or
tracheostomy
Clinical Reference for Amyotrophic Lateral Sclerosis
3

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ALS Clinical Reference Handout

  • 1. Clinical Reference for Amyotrophic Lateral Sclerosis 1 ADL Adaptive Interventions Meal Prep and Feeding o Large or adapted handled utensils o Rocker knives o Universal cuffs o Long straws o Scoop dishes and plate guards o Non-skid pads o Mobile arm supports Dressing o Button hooks o Zipper pulls o Velcro fasteners o Elastic shoelaces o Reachers o Dressing sticks and Sock aids o Long handled shoe horns Grooming and Hygiene o Strap fitted hair brush o Long handled comb o Long handled sponge o Foam cylinder handles o Lightweight electric shavers and toothbrushes o Floss holders Reading and Writing o Page turning devices o Large or Adapted handles o Book easels o Tilt top over bed tables o Rubber thumbs o Writing splints o Dry erase writing boards Exercise and Mobility General Exercise o 2 to 3 sets of 10 repetitions of a weight Pt. can lift 20xs comfortably o only exercise muscles 3 / 5 or better o Aerobic exercise in 10 minute bouts 2 – 3 xs / wk o Avoid high resistance and eccentric exercise and focus on maintaining joint range and function Ambulation and Stair Climb o Avoid crutches due to trunk and UE weakness o AFO for foot drop o Canes and Walkers o Stairway lifts o Chair glides Transfers and Bed Mobility o Firm / swivel cushions o Lift chairs o Power recliner lift chairs o Sliding boards o Transfer belts o Mechanical lifts o Step stools o Bed canes / overhead trapezes o Hospital beds Wheel Chair Prescription o In early stages may rent manual w/c, transport w/c or scooter Save insurance for expensive custom power chair o Manual w/c should be light o Important features include tilt, height adjustable flat, recline, power elevating leg rests, joystick control of power features, air or gel cushion, soft headrest, gel or contoured armrests and seatbelt Oral and Respiratory Function Interventions Dyspnea o Deep breathing o Coughing exercise o Incentive spirometer o Chest PT o Elevate HOB Dysarthria o Speak face to face o Good lighting o Over articulate o Alternative and augmentative communication devices Dysphagia o Head tilt and chin tuck o Alternate solid and liquids o Sitting upright during meals o Soft moist foods and thicker liquids o Elevate HOB during meal Additional Interventions Impaired Cognition and Emotion o Reorganize responsibilities with family planning o Home modification such as check lists to remind patient of hazards, removal of hazards and supervision of potentially dangerous activities o Modulate environmental stimuli and schedule activity to avoid irritation o Suggest recommendations positively and guide choices o While Pt. cognition is intact set up instructions for future decisions Incontinence o Accessible urinal or bed pan o Bowel routine Pain management o Stretching o Gentle exercise o Massage o TENS o ICE / Heat o US / Iontophoresis Helpful Resources o ALS Association, Upstate New York Chapter: 315 – 413 – 0121 or 866 – 499 – 7257, alsaupstateny.org o ALS Education and Awareness Group Meeting: 3 rd Monday each month at Dent Neurologic Institute. o Neuromuscular Disorders Center: Dent Neurologic Institute 1 – 716 – 250 – 2000. o Muscular Dystrophy Association: Rochester MDA office; 585 – 434 – 6560. o Buffalo General Medical Center MDA Clinic: 716 – 898 – 3239.
  • 2. Clinical Reference for Amyotrophic Lateral Sclerosis 2 ALS Functional Rating Scale o Scored from 0 least function to 4 most function. Mean score for patients with ALS is 45, MCID for improvement is 20% score increase. Speech o Normal speech process o Detectable speech disturbance o Intelligible with repeating o Speech combined with non-vocal communication o Loss of useful speech Turning in Bed o Normal o Somewhat slow and clumsy, but no help needed o Can turn alone or adjust heels, but with great difficulty o Can initiate, but not turn or adjust sheets alone o helpless Salivation o Normal o Slight but definite excess of saliva in mouth, may have nighttime drooling o Moderately excessive drooling, may have minimal drooling o Marked excess of saliva with some drooling o Marked drooling, requires constant tissue or handkerchief Walking o Normal o Early ambulation difficulties o Walks with assistance o Non ambulatory functional movement only o No purposeful leg movement Swallowing o Normal eating habits o Early eating habits – occasional choking o Dietary consistency changes o Needs supplemental tube feeding o NPO (exclusive paraenteral or enteral feeding) Climbing Stairs o Normal o Slow o Mild unsteadiness or fatigue o Needs assistance o Cannot do Handwriting o Normal o Slow or sloppy; all words legible o Not all words are legible o Able to grip pen but unable to write o Unable to grip pen Dyspnea o None o Occurs when walking o Occurs with one or more of the following; eating bathing, dressing (ADL) o Occurs at rest, difficulty breathing when either sitting or lying o Significant difficulty, considering using mechanical respiratory support Cutting Food o Normal o Somewhat slow and clumsy, but no help needed o Can cut most foods, although clumsy and slow, some help needed o Food must be cut by someone, can still feed slowly o Needs to be fed Orthopnea o None o Some difficulty sleeping at night due to shortness of breath. Does not routinely use more than two pillow o Needs extra pillows in order to sleep (more than two) o Can only sleep sitting up o Unable to sleep Dressing and Hygiene o Normal function o Independent and completes self care with effort or decreased efficiency o Intermittent assistance or substitute methods o Needs attendant for self care o Total dependence Respiratory Insufficiency o None o Intermittent use of BiPAP o Continuous use of BiPAP o Continuous use of BiPAP during the night and day o Invasive mechanical ventilation by intubation or tracheostomy
  • 3. Clinical Reference for Amyotrophic Lateral Sclerosis 3