When a Post-Polio Clinic Is Not an Option

Physical Medicine & Rehabilitation University of California, Davis, Health System Sacramento, California

Presented at PHI’s 9th International Conference: Strategies for Living Well (June 2005)

• You must start with a good primary care physician

  • Keys to finding a good doctor:

    • Look for a physician you trust and can communicate with.

    • Identify the best hospitals in your area and try to find a physician on staff there. The best hospitals attract the best doctors.

    • Get recommendations from trusted sources: hospital referral service, health plan directory, another physician or nurse, friends and neighbors.

    • Find out if the doctor is Board Certified.

    • Access your state’s website for information.

    • Your insurance choice may dictate what physicians you can see.

  • You will be an “expert patient”

    • Good and bad connotations

    • Provide a brief summary of PPS

      • ) NINDS Post-Polio Syndrome Information Page

      • March of Dimes Quick Reference and Fact Sheets — Post-Polio Syndrome

      • Post-Polio Health International — Polio and Post-Polio Fact Sheet or The Late Effects of Polio-An Overview

    • Do not expect that the doctor will know much about polio

  • Do NOT overwhelm a new physician

    • Let the physician get to know you and evaluate your overall medical condition and health issues.

    • Do not go in with a shopping list of equipment needs or a stack of disability forms.

    • Be familiar with the summaries and provide the one most appropriate for your needs.

    • Give the doctor a chance to learn about you and PPS.

  • The first step to managing symptoms of Post-Polio Syndrome is optimizing health. (Any good doctor can help you with this step.)

    • Other conditions must be diagnosed and treated. “Diagnosis of exclusion”

    • Monitoring for osteoporosis (strong limb/weak limb), hypertension, anemia, sleep apnea, thyroid dysfunction

    • Aging changes should be discussed.

    • Health promotion through:

      • Nutrition — calories and weight control

      • Exercise — stretching, strengthening and aerobic conditioning (See Guidelines for polio survivors)

      • Stress management — psychosocial, emotional health

• Symptoms should dictate diagnostic testing and/or referrals. A variety of specialists may be able to identify and treat problems. You may find one of your specialists most receptive to your needs.

  • Pain may be classified into different categories:

    • Post-polio muscle pain - caused by overuse of weak muscles

      • Occurs in polio muscles

      • Similar to pain of acute polio

      • Associated with cramps, twitching, crawling sensation

      • Increased at end of day

      • Aggravated by activity, stress, cold

    • Soft tissue pain

      • Injury or inflammation of muscles, tendons, ligaments, bursae

      • Common examples: rotator cuff tendonitis, “tennis elbow", bursitis of the hip

      • Often affects the “strong" limb

      • Related to body mechanics

    • Joint pain from degenerative changes

      • Affects joints in strong limbs due to normal or excessive “wear and tear"

      • Joints in polio - affected limbs may have force changes resulting in ligament tears, joint deformity

      • Joints with mild degeneration may be symptomatic because of abnormal body mechanics.

    • Spine pain

      • May be in spine or referred into extremities

      • Increased scoliosis increases risk of spine problems

      • Spinal stenosis may mimic PPS

    • Nerve pain

      • Severe pain often associated with sensory changes or shooting/electrical symptoms

      • May result from diffuse disease or localized nerve compression (carpal tunnel syndrome)

    • Bone pain

      • Osteoporosis with small compression fractures

      • Traumatic fractures/bruising

  • Fatigue

    • Evaluation of causes/aggravating factors

      • Sleep pattern

      • Other medical illnesses: thyroid, CAD, obesity, anemia

      • Deconditioning

      • Depression

      • Overuse

      • PPS

  • New weaknesses

    • Evaluation of possible causes:

      • New superimposed neurologic condition

      • Disuse atrophy/deconditioning

      • Weight gain

      • Medical condition

      • PPS

  • Respiratory/Pulmonary problems

    • Decreased muscle strength from polio causes restrictive lung disease similar to that seen with other neuromuscular diseases.

    • Polio survivors may have obstructive disease as well, especially with h/o smoking or allergies

  • Swallowing difficulties

    • Should be assessed by a speech therapist and appropriate studies ordered as indicated

• Basic principles of treatment:

  • Identify goals:

    • Improve body mechanics

    • Correct or minimize postural and gait changes

    • Protect weak muscles

    • Adjust the workload on muscles and joints to match their capacity

    • Control inflammation (sign of poor body mechanics)

    • Control muscle spasm (sign of overstress of muscle)

    • Alleviate nerve impingements

    • Promote healthy lifestyle modifications

  • Determine appropriate treatment modalities

    • Behavior modification

    • Physical therapy (provide resources)

    • Occupational therapy

    • Bracing

    • Assistive devices

    • Weight loss

    • Joint/spine injections

    • Medications

    • Psychological counseling

  • Educate those who work with you

    • Provide resources (not stacks of printed material)

    • Let your feelings and needs be known without becoming overbearing or too demanding

    • Treatment plan should result from discussion between you and your health care provider - not one or the other giving orders!

Pain and Specialists Listing:

Bone Pain:

Specialists: Endocrinology, Orthopedics

Treatment: Treatment of osteoporosis, immobilization of fracture, bone stimulation

Joint Pain:

Specialists: Orthopedics, PM&R, Rheumatology

Treatment: Bracing, assistive devices, therapy, medications

Polio Muscle Pain:

Specialists: PM&R, Orthopedics, Neurology- YOURSELF!

Treatment: Protection of muscles, activity modification, pacing

Nerve Pain:

Specialists: Neurology, PM&R, Orthopedics

Treatment: Activity modification, splints, therapy, medications, injections, surgery

Respiratory or Pulmonary Specialists:

Specialist: Pulmonologist, referral to local muscular dystrophy clinic pulmonary specialist may be most helpful.

Soft Tissue Pain:

Specialists: Orthopedics, PM&R, Rheumatology

Treatment: Correct/adapt body mechanics; protect affected areas, rest, ice, NSAIDS, injections, therapy

Spine Pain:

Specialists: Orthopedic Spine, PM&R

Treatment: Therapy, injections, bracing, surgery

New Muscle Weakness:

Specialists: Most of the assessment can be done by the primary MD, with assistance from PM&R, neurology, and possibly psychologist, sleep specialist, physical therapist

Treatment: Treat all contributing factors, appropriate pacing, limited exercise program, protecting weak limb

If you are unable to find satisfactory treatment locally, I recommend a visit to a post-polio clinic for assessment and recommendations.

www.polioplace.org/living-with-polio/options-when-post-polio-clinic-not-option

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