1) Listen to Yourself

Polio survivors often turned themselves off from the neck down after they got polio. The first step in
treating PPS is to listen to yourself: to what you feel,physically and emotionally, when you feel it and why.
Our most powerful tool in treating PPS is the daily logs our patients keep that relate activities to their
symptoms. However, polio survivors sometimes listen too much: to vitamin salesmen saying some herb or
spice will “cure” PPS, to other polio survivors who warn that you will eventually have every possible PPS
symptom, and to friends and family members ( and the voiced in your own head) saying you’re lazy and that
you must “ use it or lose it.” Polio survivors need to listen to their own bodies, not to busybodies.

2) Activity is Not Exercise

Polio survivors believe that if they walk around the block five times a day, spend an hour on the exer-
cise bike and take extra trips up and down stairs, their muscle weakness will go away. The opposite is true:
the more you overuse your muscles the more strength you lose. Muscles affected by polio lost at least 60%
of their motor neurons: even limbs you thought were not affected by polio lost about 40%. Most disturbing
is that polio survivors with new muscle weakness lose on average 7% of their motor neurons per year, while
survivors with severe weakness can lose up to 50% per year! You need to substitute a “conserve it to
preserve it” lifestyle for the “ use it or lose it” philosophy. Stretching may help pain and non-fatiguing
exercise for specific muscles can prevent you from losing the strength you have after you get a brace.
But polio survivors need to work smarter, not harder.

3) Brake, Don’t Break.

The follow-up study of our patients showed that taking two 15 minute rest breaks per day - that’s
doing absolutely nothing for 15 minutes - was the single most effective treatment for PPS symptoms.
Another study showed that polio survivors who paced activity - that is worked and then rested for an equal
amount of time - could do 240 percent more work than if they pushed straight through. Our patients
who took rest breaks, paced activities and conserved energy had up to 22% less pain, weakness and fatigue.
But polio survivors who quit or refused therapy had 21 percent more fatigue and 76% more weakness.
For polio survivors, slow and steady wins the race.

4) A Crutch is Not a Crutch

...and a brace is not a sign of failure or of “giving up You use three times less energy (and look better
walking) using a short leg brace on a weakened leg. Overworked muscles and joints hurt and nerves die
after decades of doing too much work with too few motor neurons.

So why not use a brace, cane, crutches (dare we say a wheelchair or a scooter) if they decrease your symp-
toms and make it possible to finally take that trip to Disney World? We know, you’ll slow down and take
care of yourself “when you’re ready.” And you’ll use a wheelchair “when there’s no choice.” Well, you
don’t drive your car until it’s out of gas. Why drive your body until it’s out of neurons?

5) Just say “No” to drugs, unless

Five studies have failed to find any drug that treats PPS. And there have been no studies showing
that herbal remedies or magnets reduce symptoms. Polio survivors shouldn’t think that they can run
themselves ragged, apply a magnet or pop a pill, and their PPS will disappear. Pain, weakness and fatigue
are not-so subtle messages from your body telling you that damage is being done! Masking symptoms - with
magnets or morphine - will not cure PPS. However, two studies have shown that polio survivors are twice
as sensitive to pain as everyone else and usually need more pain medication for a longer time after surgery
or an injury.

6) Sleep Right All Night

The majority of polio survivors have disturbed sleep due to pain, anxiety or sleep disorders, such
sleep apnoea (not breathing) or muscles twitching and jumping all over you body during the night. However,
polio survivors are usually not aware that they stop breathing or twitch! You need a sleep study if you
awaken at night with your heart pounding, anxiety,shortness of breath, choking, twitching, or awaken in
the morning with a headache or not feeling rested. “Post-polio fatigue” may be due to a treatable sleep
disorder.

7) Some Polio Survivors Like it Hot

Polio survivors have cold and purple “polio feet” because the nerves that control the size of blood
vessels were killed by the poliovirus. Actually, polio survivors’ nerves and muscles function as if it’s 20
degrees colder than the actual outside temperature! Cold is the second most commonly reported cause of
muscle weakness and is the easiest to treat. Dress in layers and wear socks made of the silk-like plastic
fibber polypropylene (sold as Gortex or Thinsulate) that holds in your body heat.

8) Breakfast Is the Most Important Meal of the Day

For once Mom was right. Many polio survivors eat a Type A diet: no breakfast, coffee for lunch and cold
pizza for dinner. A recent study shows that the less protein polio survivors have at breakfast the more
sever their fatigue and muscle weakness during the day. When our patients follow a hypoglycemia diet
(have 16 grams of low-fat protein at breakfast and small, non-carbohydrate snacks throughout the day)
they have a remarkable reduction in fatigue. Protein in the morning does stop your midday yawning.

9) Do Unto Yourself as You Have Been Doing for Others

Many polio survivors were verbally abused, slapped oreven beaten by therapists or family members when
they had polio to “motivate” them to get up and walk.So polio survivors took control, becoming Type A
super-achievers, “the best and the brightest, “doing everything for everyone except themselves. Many
polio survivors do for others and don’t ask for help because they are afraid of being abused again. Isn’t it
time that you got something back for all you’ve done for others? Accepting assistance is not the same as
being dependent. Accepting assistance can keep you independent. But appearing “disabled,” by not doing
for others, asking for help or using a scooter, will be frightening. Remember: if you don’t feel guilty or
anxious you are not taking care of yourself and managing your PPS.

10) Make Doctors Cooperate Before They Operate

Polio survivors are easily anaesthetised because the part of the brain that keeps them awake was
damaged by the poliovirus. Polio survivors also stay anaesthetised longer and can have breathing trouble
with anaesthesia. Even nerve blocks using local anaesthetics can cause problems. All polio survivors
should have lung function tests before having a general anesthetic. Your complete polio history and
any new problems with breathing, sleeping and swallowing should be brought to the attention of your
surgeon or dentist - and especially your anaesthesiologist - long before you go under the knife.
Polio survivors should Never have same-day surgery or outpatient tests (like an endoscopy) that require an
anaesthetic.