Living With Polio
Options When a Post-Polio Clinic Is Not an Option
Carol Vandenakker, MD
Physical Medicine & Rehabilitation
University of California, Davis, Health System
Presented at PHI’s 9th International Conference: Strategies for Living Well (June 2005)
A. You must start with a good primary care physician.
1. Keys to finding a good doctor:
a. Look for a physician you trust and can communicate with.
b. Identify the best hospitals in your area and try to find a physician on staff there. The best hospitals attract the best doctors.
c. Get recommendations from trusted sources: hospital referral service, health plan directory, another physician or nurse, friends and neighbors.
d. Find out if the doctor is Board Certified.
e. Access your state’s website for information.
f. Your insurance choice may dictate what physicians you can see.
2. You will be an “expert patient”:
a. Good and bad connotations.
b. Provide a brief summary of PPS:
1) NINDS Post-Polio Syndrome Information Page
2) March of Dimes Quick Reference and Fact Sheets — Post-Polio Syndrome
3) Post-Polio Health International — Polio and Post-Polio Fact Sheet or The Late Effects of Polio-An Overview
c. Do not expect that the doctor will know much about polio.
3. Do NOT overwhelm a new physician.
a. Let the physician get to know you and evaluate your overall medical condition and health issues.
b. Do not go in with a shopping list of equipment needs or a stack of disability forms.
c. Be familiar with the summaries and provide the one most appropriate for your needs.
d. Give the doctor a chance to learn about you and PPS.
4. The first step to managing symptoms of Post-Polio Syndrome is optimizing health. (Any good doctor can help you with this step.)
a. Other conditions must be diagnosed and treated. “Diagnosis of exclusion”
b. Monitoring for osteoporosis (strong limb/weak limb), hypertension, anemia, sleep apnea, thyroid dysfunction
c. Aging changes should be discussed.
d. Health promotion through:
1) Nutrition — calories and weight control
2) Exercise — stretching, strengthening and aerobic conditioning (see Guidelines for polio survivors)
3) Stress management — psychosocial, emotional health
B. 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.
1. Pain may be classified into different categories:
a. Post-polio muscle pain — caused by overuse of weak muscles
1) Occurs in polio muscles
2) Similar to pain of acute polio
3) Associated with cramps, twitching, crawling sensation
4) Increased at end of day
5) Aggravated by activity, stress, cold
Specialists: PM&R, Orthopedics, Neurology- YOURSELF!
Treatment: Protection of muscles, activity modification, pacing
b. Soft tissue pain
1) Injury or inflammation of muscles, tendons, ligaments, bursae
2) Common examples: rotator cuff tendonitis, “tennis elbow”, bursitis of the hip
3) Often affects the “strong” limb
4) Related to body mechanics
Specialists: Orthopedics, PM&R, Rheumatology
Treatment: Correct/adapt body mechanics, protect affected areas, rest, ice, NSAIDS, injections, therapy
c. Joint pain from degenerative changes
1) Affects joints in strong limbs due to normal or excessive “wear and tear”
2) Joints in polio – affected limbs may have force changes resulting in ligament tears, joint deformity
3) Joints with mild degeneration may be symptomatic because of abnormal body mechanics
Specialists: Orthopedics, PM&R, Rheumatology
Treatment: Bracing, assistive devices, therapy, medications
d. Spine pain
1) May be in spine or referred into extremities
2) Increased scoliosis increases risk of spine problems
3) Spinal stenosis may mimic PPS
Specialists: Orthopedic Spine, PM&R
Treatment: Therapy, injections, bracing, surgery
e. Nerve pain
1) Severe pain o¥en associated with sensory changes or shooting/electrical symptoms
2) May result from diffuse disease or localized nerve compression (carpal tunnel syndrome)
Specialists: Neurology, PM&R, Orthopedics
Treatment: Activity modification, splints, therapy, medications, injections, surgery
f. Bone pain
1) Osteoporosis with small compression fractures
2) Traumatic fractures/bruising
Specialists: Endocrinology, Orthopedics
Treatment: Treatment of osteoporosis, immobilization of fracture, bone stimulation
a. Evaluation of causes/aggravating factors
1) Sleep pattern
2) Other medical illnesses: thyroid, CAD, obesity, anemia
3. New weakness
a. Evaluation of possible causes:
1) New superimposed neurologic condition
2) Disuse atrophy/ deconditioning
3) Weight gain
4) Medical condition
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
4. Respiratory/Pulmonary problems
a. Decreased muscle strength from polio causes restrictive lung disease similar to that seen with other neuromuscular diseases.
b. Polio survivors may have obstructive disease as well, especially with h/o smoking or allergies.
Specialist: Pulmonologist, referral to local muscular dystrophy clinic pulmonary specialist may be most helpful.
5. Swallowing difficulties
a. Should be assessed by a speech therapist and appropriate studies ordered as indicated
C. Basic principles of treatment:
1. Identify goals
a. Improve body mechanics
b. Correct or minimize postural and gait changes
c. Protect weak muscles and joints
d. Adjust the workload on muscles and joints to match their capacity
e. Control inflammation (sign of poor body mechanics)
f. Control muscle spasm (sign of overstress of muscle)
g. Alleviate nerve impingements
h. Promote healthy lifestyle modifications
2. Determine appropriate treatment modalities:
a. Behavior modification/pacing
b. Physical therapy (provide resources)
c. Occupational therapy
e. Assistive devices
f. Weight loss
g. Joint/spine injections
i. Psychological counseling
3. Educate those who work with you
a. Provide resources (not stacks of printed material)
b. Let your feelings and needs be known without becoming overbearing or too demanding
c. Treatment plan should result from discussion between you and your h health care provider – not one or the other giving orders!
If unable to find satisfactory treatment locally, I recommend a visit to a post-polio clinic for assessment and recommendations.
Post-polio Fact Sheets Available on the Internet https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Post-Polio-Syndrome-Fact-Sheet
PRINCIPLES OF BRACING FOR POLIO SURVIVORS
Complete physical assessment is essential to determine the best bracing options for an individual.
Braces should be used for specific management of a selected problem.
There should be a specific goal of treatment, i.e. decrease pain, improve stability, prevent falls, or protect joints and weak muscles.
Joint movement should be allowed whenever possible and appropriate.
The brace should be a light as possible.
The brace must be comfortable and functional- or you won’t use it!
Our goal is to continue safe, independent mobility as long as possible.
Factors that must be considered in prescription:
Strength of other extremities
Ability to use assistive devices
Ability to don/doll brace
Sensory loss (i.e. diabetic neuropathy)
Home/work environment (uneven surfaces)
The orthotist fitting and fabricating the brace should be board certified and preferably have experience with polio survivors- they are different (and more difficult) than most other types of patients. Orthotist must be receptive to the patient’s wishes and ideas, communicative, patient and willing to make adjustments.
The physician should be able to communicate with the orthotist if there are any questions or concerns about my prescription. It is easier to discuss changes before the brace is made than have to make adjustments later.
Don’t pay for the brace until it fits right and you can use it!
EXERCISE GUIDELINES FOR POLIO SURVIVORS
Exercise is defined as planned, structured, and repetitive body movement. Physical activity is movement occurring during daily activities.
A therapeutic exercise program is designed for health benefit- generally to reduce pain, increase strength, increase endurance and increase the ability to do daily activities.
Not all polio weakness is due to overuse, often lack of exercise and physical activity leads to muscle wasting and cardiovascular deconditioning.
Research supports a carefully designed therapeutic exercise program for most polio survivors to enhance optimal health and function. The program should be individualized and modified if problems arise.
Important principles to follow are:
1. Start very slowly. Often 3-5 minutes is all that can be tolerated initially if muscles have not been exercised for a period of time.
2. Interval exercise, short bouts of exercise alternating with rest periods, can be very effective.
3. Progression should be slow, especially in polio- affected muscles.
4. Intensity should be low to moderate.
5. The plan should include a rotation of different types of exercise such as stretching, cardiovascular (aerobic) conditioning, strengthening, and range of motion exercises.
6. Pacing should be incorporated into the program with at least one day of rest between strengthening exercise sessions.
7. Aquatic exercise is often ideal as the buoyancy of the water help to support weak muscles and unweight joints while providing mild resistance to muscles. Remember it is easy to overdo in the pool because it is so much easier to move!!
8. Be aware that signs of overuse can occur 24-48 hours after too strenuous exercise or an overly active day. Symptoms of overuse indicate a need to decrease the amount of exercise or decrease the frequency of activity. The symptoms to watch for are: muscle cramps and spasms, muscle twitching, muscle pain and extreme fatigue.
REMEMBER THAT YOU CAN EXERCISE SAFELY AND IMPROVE YOUR CONDITION IF YOU APPROACH IT WITH PATIENCE AND CONSISTENCY!!