POST - POLIO 101: What You NEED to Know

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1. DID YOU HAVE POLIO?

• Spinal tap?
• Unexplained fever?
• Flu like symptoms?
• Paralysis?
• Severe neck pain and/or headache?
• A disease that severely affected the nervous and muscular systems?

2.  WHAT IS POST-POLIO SYNDROME? (PPS)  (late effects of polio)

TRUTHS:

• A secondary condition to having had polio
• New symptoms approximately 10-40 years after recovery from polio
• Not everyone who had polio develops PPS
• Other conditions have been ruled out including normal aging

• It doesn’t exist
• The virus has returned
• You can’t do anything about it
• Everyone gets the same symptoms
• PPS is life threatening
• All polio survivors have atrophied limbs

3.  WHAT CAUSES POST-POLIO SYNDROME? (PPS)

• Decades of “overuse and abuse” of the body
• Polio damaged the nervous system, including the brain
• Motor neurons, that move muscles, weakened by polio are beginning to fail
• Triggered by a trauma (surgery, accident, immobilization, death of a loved one, etc.)

4.  WHAT ARE SOME OF THE SYMPTOMS?

• Unaccustomed fatigue – either rapid muscle tiring or feeling of total body exhaustion
• New weakness in muscles – both those originally affected and those unaffected by the virus
• Pain/burning sensations in muscle and/or joints
• Breathing difficulties and/or sleep problems
• Swallowing problems
• Functional decline
• Depression and/or anxiety
• Weakness and muscle atrophy
• Muscle spasms, twitching and tingling
• Nerve compression problems, (carpal tunnel, tendonitis, etc.)
• Hypoglycemia
• Hypothyroidism

5.  WHAT CAN BE DONE?

• Awareness of type “A” behavior
• Plan frequent rest periods
• Pace daily activities
• Limit exposure to cold
• Increase protein and decrease added sugars in diet.
• Gentle exercise program as prescribed by a professional familiar with PPS

• Conserve energy, “Conserve to Preserve”
• Stop overusing and abusing
• Be active, but STOP short of fatigue and pain
• Use assistive devices (braces, canes, wheelchairs etc.)
• Use quality nutritional supplements as advised by a nutritionist
• Control your weight
• Maintain a positive attitude
• Join a post-polio support group

6.  WHAT ABOUT BREATHING PROBLEMS?

• The need to sleep sitting up
• Insomnia
• Morning headaches
• Excessive daytime fatigue/sleepiness
• Night sweats and interrupted sleep
• Unproductive cough and increase in  respiratory infections      

• See your Healthcare provider and/or a pulmonologist immediately
• Be wary of oxygen therapy if your lungs are not damaged. (You cannot assume that polio damages the lungs)
• Tracheostomy tubes should be avoided
• Possible need for sleep study

7.  WHAT TO DO WHEN SURGERY IS REQUIRED.

• Talk to your healthcare provider about the planned procedure and post-polio  concerns
• Set up a consultation with the anesthesiologist during the pre-admission process about concerns with post-polio and curare types of anesthesia
• Review your previous medication reactions with surgeon
• Assess with Healthcare provider your need for in-patient vs. out-patient surgery:

• Body positioning during procedure
• Cold intolerance
• Additional post-operative recovery time may be required    
• Additional anesthesia and/or pain medicine may be required
• Assess level of fatigue to determine your ability to tolerate out-patient or in-patient procedures

8.  WHAT TO DO ABOUT PAIN?  Tips that have worked

• Use moist heat and/or ice packs to the painful area
• Get light massages
• Try warm water therapy
• Get tested for sleeping and/or breathing problems
• Use assistive and adaptive aids, as necessary to reduce stress to muscles and joints
• Check into need for anti-depressant prescription drugs
• Use pain medication (ibuprofen, Celebrex, Vicodin, Percocet, Oxycontin, etc.) as prescribed by your Healthcare provider
• Try alternative type treatments (acupuncture, yoga, myofascial release, Reiki, Watsu, etc.)

9.  WHAT ABOUT MEDICATION?

• It is your responsibility to know all your prescriptions, over-the-counter (OTC) drugs, and supplements. Inform your health care provider with:

• Name
• Purpose
• Dosage
• Interaction with other medications
• Side effects and risks
• Previous medication reactions

• Change your lifestyle before turning to pain medications
• Avoid stimulants that cause increased fatigue

10.  HOW IS PPS DIAGNOSED?

11.  HOW TO COMMUNICATE WITH  YOUR HEALTHCARE PROVIDER?

• Keep a journal of progression of symptoms, making simple entries concerning:

• Daily living
• Physical
• Emotional
• Time of day most affected
• Positive and negative changes

• Note current symptoms, (tiredness, fatigue, exhaustion, etc.)
• From journal, make a list of questions and concerns to present to your Healthcare provider

• Describe all current symptoms and when/how they   have changed over time
• Be specific about what you need, if known
• Avoid giving “Yes” and “No” answers
• Describe HOW: (i.e. much, long, in what way). (“I can climb 3 steps in 5 minutes with assistance.”)
• Clarify what you hear by asking, “Did you say…?”
• Bring written post-polio information
• Build a relationship with your Healthcare provider
• REMEMBER, some symptoms are not PPS related, (normal aging, heart disease, diabetes, etc.)

•  Request copies of all reports and test results
•  Call if you have further questions

12.  DID YOU KNOW?

• There are Post-polio Clinics and support groups all over the world
• Rotary International goals are to:
• Eradicate polio worldwide
• Develop programs to assist polio survivors 
• People still get polio
• Polio survivors are likely to develop post-polio   symptoms
• “No Pain – No Gain” DOES NOT apply to post-polio syndrome
• Many resources are available
  

13. WHERE DO YOU FIND MORE   INFORMATION?

TAKE CHARGE OF YOUR MEDICAL CARE, YOU KNOW YOUR OWN BODY BEST!