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					The Fragile State of Function in
Persons Aging with a Disability

     Lilli Thompson, P.T.


                 Research Associate,
    Rehabilitation Research and Training Center
             on Aging with a Disability
                                      Rehabilitation
                                      Research and
                                    Training Center on
                                       Aging with a
                                        Disability

        Rancho Los Amigos National Rehabilitation Center
                    University of California, Irvine
Funded by the National Institute on Disability and Rehabilitation Research
                                   Rehabilitation
                                   Research and
                                 Training Center on
                                 Aging with Spinal
                                    Cord Injury


     Rancho Los Amigos National Rehabilitation Center
Funded by the National Institute on Disability and Rehabilitation Research
The Interaction of Physical, Psychological, and
Social Factors Increases With Age & Disability


Physical                        Psychological




                                Function
                   Social
      Aging and Functional Capacity



  %
Capacity
            Bio
            Psycho
            Social

           20        40    60   80   100
                          AGE
      Aging and Functional Capacity


  %
                          Non- SCI
Capacity
                                1% per year


                     SCI
                     1.5%
                     per year


           20   40        60     80      100
                      AGE
 Change is inevitable . . .

except from vending machines !
Common Additional Changes in Persons with a Disability
 SYSTEM            PHYSIOLOGY          ___ IMPAIRMENT
Musculoskeletal     Sarcopenia              Strength
                    Degeneration            Joint dysfunction
                     of articular surface
                    Osteoporosis            Fracture risk
                    Spinal deformity        Pulmonary & balance
                                            Pain
Neuromuscular       Entrapement             Pain & weakness
                     neuropathies
Central NS          Syringomyelia           Weakness, pain
                    Tethered cord           & sensory loss
Cardiovascular      Max cardiac output      Tolerance for
                    Max heart rate           physical activity
Pulmonary           V02 Max                 Vital capacity
Integument          Fragility               Decubitus ulcers
                    Subcutaneous fat
FUNCTIONAL ACTIVITIES AT RISK
     • MOBILITY
     • SELF - CARE
     • TASKS / CHORES
     • WORK / SCHOOL
     • SOCIAL ACTIVITIES
     • RECREATION
     • LIFE ROLES
Percent Indicating a Decline in One or More ADLs
  or IADLs by Group Over a 10 year Duration
                               n = 497

       80
                                                                     Disability
       70                                                            Group
                                                                    Avg age = 55
       60                                                            Control
   %   50                                                            Group
                                                                    Avg age = 57
       40
       30
       20
       10
        0
                 ADLs                    IADLs
                     RRTC on Aging with a Disability,
            Natural Course of Aging with a Disability Study, 2002
Percent With At Least One ADL Decline By Age
                                                                  Impairment group
   80                                                             Control group

   70
   60
   50
% 40
  30
   20
   10
     0
             56-60              61-65               66-70                71+
                                           Age                           *** p<.001
 RRTC on Aging with a Disability Natural Course of Aging with a Disability Study, 2002
        Ambulation in Adults with Cerebral Palsy
                                   n=60


   Continue                                                     Stopped by
   Ambulating                                                   Age 30
                                                                 • fatigue
                        56%              32%
                                                                 • inefficiency



                                              12%               Stopped by
                                                                Age 50
                                                                • pain
                                                                • fatigue
Murphy K, Molar GE, Lankasky K. Medical and functional status of adults with cerebral
palsy Dev Med Child Neuro. 1995, 37, 1075-1084.
Polio
                  Employment Changes
Of 539 polio survivors, over half were having to make major
alterations in their lifestyle and even change jobs to minimize the
impact of new health and functional problems with aging (Halstead &
Rossi, 1985).

Agre et al (1989) found 46% of 79 post polio patients had difficulty
continuing to work due to new health and functional problems.

Einarsson & Grimby (1990) report 39% of forty-one polio survivors
retired early due to the functional consequences of post-polio
syndrome.

CP
Murphy et al. (2000), 53% of 101 adults with CP were gainfully
employed. Education (> HS) and resolving mobility issues were
important factors in achieving employment. Of the nonambulatory
group, 86% used a power w/c for work, but over half were
independent with manual mobility (^ efficiency & greater mobility)
Common Symptoms Associated with
      Functional Change

      • Pain

      • Weakness

      • Fatigue
          PAIN
Unpleasant, uncomfortable sensory
   experience associated with
     potential tissue damage

        • Acute Pain

        • Chronic Pain
Incidence of Pain by Impairment Group
                                    n = 337
    100
                                                                       Severity
    90
                                                                       mild
    80
                                                                       mod/severe
    70
    60
    50
%   40
    30
    20
    10
      0
             RA            Polio           CP             SCI         Control
             (9)           (120)          (23)            (60)         (125)
RRTC on Aging with a Disability Natural Course of Aging with a Disability Study, 2002
        Degree that Pain Interferes with self-care
                   by Age and Group
                                                                      Impairment Group
Score
                                                                      Control Group
  3.5
                                                                  *** p<.001
   3
  2.5
   2
  1.5
   1
  0.5
   0
            22       31       41       46         51         56         61        66       71
              -3       -4       -4       -5           -5       -6          -6        -7      +
                 0        0        5        0            5        0           5        0
                                                Age
   RRTC on Aging with a Disability Natural Course of Aging with a Disability Study, 2002
 Unresolved UE Pain



                Conditioning
Activity
                Strength
                Endurance
               Weight gain
              FATIGUE
  Overwhelming sense of tiredness or lack of
                 energy

Abnormal when:
• Fatigue levels are greater than expected based
     on activity level or
• Fatigue lasts longer than expected (ie. 2 weeks
     without a known cause)
 Incidence of Fatigue by Impairment Groups
                             n = 351
  90                                              Fatigue
  80                                              No Fatigue
  70
  60
  50

% 40
  30
  20
  10
   0
         Polio          CP            SCI       Control
   RRTC on Aging with a Disability, Natural course of aging with a
                      disability study, 2001
    Degree Fatigue Interferes With Work,
  Family, and Social Life By Age And Group
                                                                  Impairment Group
Score                                                             Control Group
    5
                                                                  *** p<.001
  4.5
    4
  3.5
    3
  2.5
    2
  1.5
    1
  0.5
    0
            22


                     31


                              41


                                       46


                                                51


                                                         56


                                                                    61


                                                                             66


                                                                                      71
                                                                                        +
              -3


                       -4


                                -4


                                        -5


                                                  -5


                                                           -6


                                                                     -6


                                                                               -7
                 0


                          0


                                   5


                                            0


                                                     5


                                                              0


                                                                         5


                                                                                  0
                                             Age
    RRTC on Aging with a Disability Natural Course of Aging with a Disability Study, 2002
  “Every decision about an activity . . . well, really
  every aspect of my life, must first filter through the
  question of whether I have enough energy to do it
  and then how much am I going to pay for doing it.”

                                          Agree/Strongly Agree

Fatigue interferes with the ability to         Polio 78%
carry-out duties or responsibilities in        CP 64%
life.                                          SCI 62%


                                               CP 93%
Fatigue prevents physical functioning.         Polio 87%
                                               SCI 65%
     FATIGUE CAUSING CONDITIONS

Disrupted Sleep
Medication Side Effects
Depression
Chronic Hypoventilation
Chronic Infection (UTI’s, decubitti, etc.)
Hypoxemia
Systemic Disease (Diabetes, Hepatitis, SLE, etc.)
Heart Failure
Thyroid Disease
Anemia
Cancer
   Weakness
Loss of muscle strength or
Loss of endurance in a muscle or
group of muscles

Usually noticed as a
new problem
when performing a
task
      New Weakness in SCI Population
                                      n = 502

                   19 % reported new weakness


   13.5 % Diagnostics confirm neurologic abnormality


 7 % Central pathology                          6% Peripheral pathology
   Syringomyelia                                    Ulnar n. entrapment
   Cervical or Lumbosacral                          Carpal tunnel syndrome
     radiculopathy

Bursell JP, et. al. Electrodiagnosis in spinal cord injured persons with new weakness: Arch
Phys Med Rehabil. 1999;80:904-909.
     Regional and Total Body Lean Tissue Comparisons

         90


         80

Lean
                                                                              Tetra
Tissue   70                                                                   Para
  %
                                                                              Control
         60


         50
                 Arm             Leg           Trunk       Total body

Bauman WA, Spungen AM. Body composition in aging: Adverse changes in able-bodied and in those
with SCI , Top Spinal Inj Rehabil. 2001; 6(3): 22-36.
Annual Fall Rates for Polio, CP, and Nondisabled Groups

      35
                                                                             Polio
      30                                                                     CP
                                                                             Control
      25

      20
%
      15

      10

        5

        0
                 1 fall          2-5             6 - 12         14 - 24          365 +

                                     Fall/year
    RRTC on Aging with a Disability Natural Course of Aging with a Disability Study, 2002
Walking Cessation by Age in CP Group
                        n = 27
    100
     90
     80                     Stopped by 30 due to:
     70                     • fatigue
%    60                     • inefficiency
     50
     40                                         Stopped by 50
     30                                        • pain
     20                                        • fatigue
     10
      0
          11 - 20   21-28             38-50         >60
                            AGE         Murphy K, et al. Dev Med Child
                                        Neuro. 1995, 37, 1075-1084.
         When Function Changes Occur
          Who Provides Assistance?
                     n = 150
                                   ADLs
    80
                                   IADLs
    70
    60
    50
%
    40
    30
    20
    10
     0
            Indep.     Family   Paid
Assistive Technology Study
             n=25

AT categories:
mobility, splint/braces, DME,
low-tech, home accommodations


  self reported problems 2
    in-home evaluation 7
 CONSUMERS LIVING
 WITH THE ISSUES OF
    AGING WITH A
DISABILITY WANT THE
      ANSWERS

      NOW!
       Patient Client Management
 Comprehensive versus problem specific examination
 Look for the key markers
   Symptoms associated with risk of functional decline may
   precede actual changes (new pain, fatigue, weakness, etc.)
 Key examinations
   Functional performance
   Musculoskeletal
   Neuromuscular
   Equipment
 ASK! WATCH! LISTEN!
    Interventions

So . . . what do we do now?
Take a good hard look at these issues:

  • How are activities performed?

  • What type of equipment is used?
    Does it optimize function?

  • What equipment changes or changes in
    movement mechanics can be made to
    optimize function?
        INTERVENTION
           Starts with
         PREVENTION


     Recognize the impact early
rehabilitation decisions and processes
       have on later life issues
Example of Typical Daily
  Functional Demands                           To bed - Sleep?
    for W/C users
                                       Household chores

                                   Exercise?
                             Outings (work, school, social,
                             community chores, recreation)
                      Propulsion (hills, rough terrain,
                       ramps, curb cuts, distance)
                Transfers (cars, chairs, toilets, bathbench,
                couches, floor, bed)
           Bathing/Toileting/Dressing/Pressure relief raises
        Rise and Shine -Up and out of bed!
   Evaluating Weakness
• Manual Muscle Testing

• Functional Performance Assessment
    - Mobility
    - Activities of Daily Living
     Management of Weakness
• Strengthen (when and what is appropriate)
 Beware of exacerbating “overuse” syndromes.
 Use muscle response as a guide:
  loss of force production or muscle belly tenderness =
  BACKOFF!
 Work to achieve appropriate strength relationships between
  muscle groups.
• Support joints around weakened muscles
• Modify activities
 Improve efficiency
 Decrease energy cost
SHOULDER EXERCISES
  Strengthening:
      Scapular Retraction
      External Rotation
      Adduction

  Stretching:
      Pectoralis Stretch
      Biceps Stretch
               Curtis KA, et al. Spinal Cord 37, 421-429 (1999)
                   Pain & Fatigue
                Management Strategies
   Identify medically-based causes and treat these appropriately
                     Lifestyle management (pacing)
                          Assistive Technology
                               Medication

             PAIN                             FATIGUE
Postural corrections                Introduce energy conservation
Modalities (heat, ice, TENs etc.)          tools
Medication                          Improve efficiency of movement
Therapeutic exercise                Prioritize activities
Pain management program
               Mobility Decisions
   Ambulation,
   Ambulation, W/c Propulsion, Powered Mobility
The primary means of mobility should not be the means for exercise.

 • Energy expenditure greatest for ambulation ,
                                     ambulation,
   followed by manual w/c propulsion, and then
   powered mobility
 •    LE paralysis =     need for UE assistance
        ambulation.
   with ambulation.
 • UE dysfunction = ability to propel w/c
 • Patients may decide to “save” UE’s for
   functional activities other than ambulation or
   propulsion
 New Work Related Problems for Persons Aging with a Disability
                                     n = 90

Workers experienced diminished functional abilities, increased pain
 and fatigue with advancing age and impairment duration. These
     changes resulted in needs for new job accommodations.

                  Typical Types of Problems
                  Use of equip/tools/furniture
                  Access (esp. parking & restrooms)
                  Task performance
                  Common Interfering Symptoms
                  Pain
                  Fatigue
McNeal DR, Somerville NJ, Wilson DJ. 1999. Work problems and accommodations
reported by persons who are postpolio or have a spinal cord injury. Asst Technol.
11:137-157.
                  Job Accommodations
                      Types of accommodations:
         •   Adapting work environment
         •   Providing special equipment
         •   Modifying the job
         •   Reassignment of duties or roles
         •   Retraining for different duties or responsibilities
         •   Co-worker assistance

                              Costs:
         • Over 50% of accommodations cost nothing
         • 30% cost < $500
         • Employers stated the benefits outweighed costs
McNeal, Somerville, Wilson, (1999). Work problems and accommodations reported by
persons who are postpolio or have a spinal cord injury. Assist Technol. 11:137-157
                   Energy Cost of Ambulation
             300

                                                                02 rate decrease
02 Rate      200                                              linearly related to
  (%                                                                the AMI
Normal)
             100
                                                              (Ambulatory Motor Index
                                                                 reflects degree of
               0                                                impairment of LEs)
                       20      40    60        80    100
                            AMI (% Normal)
                                                2


                                               1.5

  02 Cost linearly                   02 Cost
                                     ml/kg/m    1
 related to the AMI
                                               0.5


                                                0

                                                       20      40     60     80   100
                                                            AMI (% Normal)
Waters Rl, et al. Gait performance after SCI. Clin Orthop Rel Res. 1993:87-96.
Thank You !
Implications for Clinical Practice


          Lilli Thompson, PT
   Most Any Clinical Practice Setting Will Have
       Patients/clients Facing These Issues!

• Acute Care Hospitals    • Home Health
• Outpatient Clinics      • Education & Research
• Rehabilitation             Centers
  Facilities              • Schools
• Skilled Nursing         • Athletic Facilities
• Industrial &            • Fitness & Sports
  Vocational Worksites       Training Centers

                       Etc.!
        INTERVENTION
           Starts with
         PREVENTION


     Recognize the impact early
rehabilitation decisions and processes
       have on later life issues
       Initial Rehabilitation focus
• Recognize the value of education about long-term life
issues. Initial rehab may be the only teachable moment.

• Assist with finding the balance between the need for
exercise and the need for efficient movement.
The primary means of mobility should not be the means for
exercise.

• Emphasize performance skills that protect the
musculoskeletal system and provide the rational for specific
performance techniques.

• Educate clients about potential changes and how to
recognize and respond to symptoms associated with
functional change.
Long-Term Life
Perspectives In
Rehabilitation
   Strive For The
Cumulative Effect Of
   Small Changes
      RECOMMENDATIONS
• Do not overly accept change as “just normal”

• Thoroughly evaluate changes in health and
    function

• Strive for a partnership between healthcare
     provider and client

• Prioritize activities and attempt incremental
  changes

				
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