**********************************************
********************************************** MEETING NOTICE
May 17th, 2009 –
Mark Ravenscraft, Tallahassee PPSG Support Group Leader
will do a presentation with respect to the
recent Warm Springs Post-
Polio Conference.
September
20th, 2009 –
November
15th, 2009
**********************************************
CONTENTS
From Barbara
Understanding
Swine Flu or
Swine Flu 101
From Mommy To Mom
To Mother
Exercise and the
Polio Survivor – Pt 2
Good Advice to
Live By
Manage Your Food
Craving
The Book of Polio
Some Thoughts
**********************************************
FROM BARBARA
Well,
I attended the 10th International Post-Polio Conference held in
Now let me tell you a little about
Warm Springs…. Dr. Armand Zilioli, of
Orlando, an orthopedic surgeon and polio himself, drove there with me. We drove into the Warm Springs area about
10:00 am on the morning of the conference – we had about 2 hours before we had
to register, so we decided to take a tour of
When we finished our tour, we continued to the actual
There is a modern indoor heated therapeutic pool on the main campus of
the center which is now used by the residents. While there at the center, I
often had a deja vu experience reliving my own polio rehab experience and also
listening to the many former residents who, in the '40's and '50's, had spent
several lonely months getting rehab at the facility but who were away from
their families.
Everywhere we went, I found that the staff was extremely kind and helpful.
There is still an active inpatient rehab center providing services for
many other conditions, both with short and long term care.
We finally did get to the
It was nice meeting up with friends
that you only get to see at conferences like this, and with meeting new
friends. There were polio survivors
there from
My thanks to our support group for
helping me to attend the conference.
**********************************************
FECPPSG Editor’s Note:- Many of you may
remember Prof. Kossove from our January 18, 2009 seminar where he did a talk on
“Polio 101” - Well, Mike just e-mailed
this to me (and many other people) and gave reprint permission and I thought it
important enough to put into our newsletter.
Truthfully, I hope that by the time this newsletter reaches you, the
“Swine Flu” Pandemic is over and done with.
UNDERSTANDING SWINE FLU or
SWINE FLU 101
With all of the information coming out in the news and on line, I
thought I might put some of it in laymen’s language so that you might
understand it.
First it was Swine Flu Type A H1N1. Now they have taken out the
word “swine” and are just calling it A H1N1. Not since polio has there
been such a concern about a pandemic (world wide). I saw several people
in Penn Station yesterday wearing masks. So, lets talk about Swine
Flu. This will be somewhat lengthy, so sit back, relax, and learn.
The Influenza virus was named “Influenza” by the court astrologers
of yesteryear, because if you caught it, you were under the “influence of the
stars.” The virus (viruses are not alive) has a protein coat surrounded
by an envelope. The envelope has spikes containing enzymes that help it
attach to the cells in our respiratory system. These enzymes are called
Neuraminidase and Hemagglutinin, thus the H and N. There are many types
of H and N enzymes, each numbered 1, 2, 3...... That’s how you get
H1N1. There are several types of influenza virus; A, B, and C.
So, we have A H1N1. There are several types of A H1N1; 6 are swine, one
is bird; and one is human. They are respiratory viruses. There were
swine flu scares in 1919 and in 1976. Some of you remember President Ford
rolling up his sleeve on TV and being immunized. Our government was so
panic stricken, they allowed any company who had resources to make the
vaccine. That’s VERY dangerous. There was not one confirmed case of
swine flu in 1976, but people had side effects from the vaccine.
How did a virus in pigs come to infect humans? People who were suffering from influenza while working with
infected pigs, contracted both viruses. Inside the body, the viruses
exchanged genetic information. The swine flu virus picked up genes from
the human influenza virus, and were now able to infect humans, as well as pigs.
Why are there so many deaths in
You must remember that people, healthy and unhealthy will get a
cold. Some cold viruses affect the lower respiratory system as well, and
can lead to bacterial bronchitis, etc. So, if someone in your family, or
a friend, comes down with a cold (sneezing, coughing, etc.), don’t think they
have swine flu. Most of us know the symptoms of influenza, and it is
worse than a bad cold. If you come down with a bad cold and want
reassurance that you do not have swine flu, see your doctor. The antiflu
medications for swine flu must be started within 48 hours of the onset of
symptoms to be affective.
What about immunization for swine flu?
You can’t make a viral vaccine in a week, a month, or 6
months. It takes time. We have stockpiles of swine flu vaccine, but
NOT this swine flu. Not this new swine-human genetic flu?
The virus will have to be grown on living tissue like chick eggs, isolated, the
nucleic acid killed or attenuated (weakened) put into a solution, and then
tested. It may be possible to have a vaccine by December or before.
The fact that this swine flu mutated to now affect humans; it might have the
ability to further mutate (exchange genetic information, or change genetic
information within). The next outbreak could possibly be from a swine flu
virus different from this one. Therefore, the World Health Organization
and the Centers for Disease Control and Prevention have surveillance teams in
place to carefully follow this virus, so the proper vaccine can be
manufactured. Before I allowed myself to be immunized against swine flu I would
want to know that the pharmaceutical company making it had a track record with
other vaccines, and their vaccine tested safe.
Just like polio today, people can act as carriers and
bring in swine flu by air travel to
Mike
**********************************************
FECPPSG Editor’s Note:- The following was sent
to me by several friends via e-mail.
Where it came from originally – I have no idea. However, since Mother’s Day is coming within
the next few days, I thought it appropriate to put it in this newsletter.
From Mommy To Mom
To Mother
(Carefully read the last one in
bold and italicized!!!)
MOTHERS
Real Mothers don't eat quiche; they don't have time to make it.
Real Mothers know that their kitchen
utensils are probably in the sandbox.
Real Mothers often have sticky floors,
filthy ovens and happy kids.
Real Mothers know that dried play dough
doesn't come out of carpets.
Real Mothers don't want to know what the
vacuum just sucked up.
Real Mothers sometimes ask 'Why me?' and
get their answer when a little voice says, 'Because I love you best.'
Real Mothers know that a child's growth
is not measured by height or years or grade. It is marked by the progression of
Mommy to Mom to Mother....
~*~*~*~
4 YEARS OF AGE - My Mommy can do anything!
8 YEARS OF AGE - My Mom knows a lot! A
whole lot!
12 YEARS OF AGE - My Mother doesn't
really know quite everything.
14 YEARS OF AGE - Naturally, Mother
doesn't know that, either.
16 YEARS OF AGE - Mother? She's
hopelessly old fashioned.
18 YEARS OF AGE - That old woman? She's
way out of date!
25 YEARS OF AGE - Well, she might know a
little bit about it.
35 YEARS OF AGE - Before we decide,
let's get Mom's opinion.
45 YEARS OF AGE - Wonder what Mom would
have thought about it?
65 YEARS OF AGE - Wish I could talk it over with
Mom.
~*~*~*~
The beauty of a woman is not in the
clothes she wears, the figure that she carries, or the way she combs her hair.
The beauty of a woman must be seen from in her eyes, because that is the
doorway to her heart, the place where love resides. The beauty of a woman is
not in a facial mole, but true beauty in a woman is reflected in her soul. It
is the caring that she lovingly gives, the passion that she shows, and the
beauty of a woman with passing years only grows!
Please send this to 5 mothers today. If you don't, nothing bad will
happen, but if you do, something good will: you will boost a mother's spirit.
FECPPSG Editor’s Note:- I just sent it to over
200 mothers – hope I did boost your spirits.
**********************************************
Reprinted with
permission from the San Francisco Bay Polio Survivors, Volume 19 Issues 2+3,
October+November 2008 newsletter.
PART TWO
EXERCISE
AND THE POLIO SURVIVOR
Carol Vandenakker, MD
UC Davis Dept. of PM&R,
Residency Director
Sept 20, 2008 Presentation
©
Dr. Carol Vandenakker
Transcribed
and edited by Phyllis Hartke, reviewed and approved by Dr. Vandenakker.
For reprint permission,
contact phartke@aol.com
Flexibility
• Pliability or elasticity of muscles,
connective tissue, tendons and ligaments
• Ideal range of flexibility maximizes
muscles function
Flexibility is
the elasticity or pliability of muscles, connective tissues, tendons, and ligaments.
Every muscle has an ideal range of flexibility and in that range is where it
functions optimally. After polio you have muscles affected to a various
degrees. Some might be very strong and
some might be very weak in and around the same joint. That’s a problem. Your
stronger muscles tend to tighten to the point where it cannot lengthen to its
full length.
For example, my
biceps may be really strong but my triceps, the muscle that extends the elbow,
weak. Over time the biceps will start to
shorten because I don’t have the triceps to provide counterforce- pulling the
muscle all the way out to its full length.
Eventually, I can’t extend my elbow all the way because the muscle has
tightened to the point where it doesn’t lengthen fully. Then I start to lose function because certain
activities rely on extending the arm all the way.
Flexibility / Stretching Exercises
• Restoration and maintenance of functional
range of motion
• Identify any restrictions of motion that impact
function and stress other tissues
• If connective tissue is not stretched, it
will gradually shorten
• Genetics, gender, age, temperature affect
flexibility
• Excess motion is not beneficial
Many times
stretching muscles and tendons around key joints can make a huge difference in
function. Loss of ability to do certain
activities can result from a muscle or joint restriction preventing effective
function. Flexibility, restoring or
maintaining a functional range of motion, can be very important for polio
survivors.
Gender and
genetics impact flexibility. Women are
usually more flexible than men. Men
often have to work harder at this than women.
Genetics play a role. We all know people who are very flexible, can put
their foot behind their head or do the splits and others who cannot.
Temperature
affects flexibility. When you are
working on stretching, your muscles and tendons are more pliable when they are
warm. It is a good idea to do another
activity first. Get moving and get the
muscles warmed up, maybe use heat. Once the tissues are warmer they are easier
to stretch.
Now you don’t
need to stretch to the point that you can put your foot behind your head or do
the splits. Excess flexibility doesn’t
do you any good. In fact, you’re at more risk of developing arthritis if the
ligaments around the joint are laxer.
You don’t have to be super flexible.
If you are very flexible and have good range of motion, you don’t need
to stretch those areas further. What you need to focus on stretching are the
muscles that are tightening up or areas with restricted range of motion.
Stretching Exercise
• Ballistic stretching - repetitious
bouncing
– Greatest risk of injury
• Static stretching - slowly applied and
held for several seconds
– 15-20 seconds
– 4 repetitions
• PNF stretching –
– Contract- relax or agonist contract- relax
The good thing
about stretching is that it is the easiest exercise to do from an energy cost
perspective. You don’t have to sweat and pant, but many people hate it anyway
you should stretch to the point of feeling uncomfortable.
“Ballistic
stretching” or a bouncing stretch was common when I was in school. We don’t advise that anymore. It puts you at
risk of muscle strain because if your muscle reacts to perceived overstretching
and contracts, you can end up tearing the muscle in the middle of a bounce.
The preferred
method of stretching nowadays is a “static stretch”. Slow stretching, applying a little bit of
pressure and relaxing muscle. With static stretching, you take the muscle or
tendon to its full length and then apply pressure so that it is uncomfortable
but it really doesn’t hurt and then hold it for 15 or 20 seconds. You repeat
the stretch three or four times. Studies
have shown that stretching more than four times per session doesn’t add more
benefit.
“PNF
stretching” is a concept involving stretching, contracting the muscle against
the resistance, then relaxing it to get more stretch.
Guidelines for Polio Survivors
• No fear of muscle “overuse”
• Static stretching safest method
• Heat before stretching
• Muscle imbalance around a joint will lead to
loss of motion if not stretched
• Bony changes/ fusions may also contribute
to loss of motion- never force stretch
• Do not stretch an over-lax joint
With stretching
there is no risk of overusing the muscle when you are static stretching. You
can do stretches every day or more than once a day. It is important to know if you are at risk of
contractures around the joints where you have muscle imbalance.
Sometimes the joint
has lost range of motion not because of muscle contracture but because of bony
changes within the joint either from arthritis, previous surgery, or
degenerative changes. In that case you
will never be able to stretch the joint to its full range. You never want to push too hard because you
could fracture a bone, especially in a polio-afflicted limb that has low bone
density to start. So don’t ever force it.
Don’t stretch
around a joint that is unstable and moving more than it should. You don’t want to
worsen instability.
Q – Are there
stretching muscles that we can do to build our respiratory muscles?
A – There are
some. Most of them involve expanding the lungs as best as you can and then
holding it. Expand the diaphragm; expand the rib cage as much as you can.
If you have weak muscles around the rib
cage, there are some stretches you can do for rib cage and chest muscles. To stretch the rib cage, move the trunk, like
side bends and forward bending, separating the ribs and stretching the muscles
in between. Get the shoulders and arms back. When people get older, they have a
tendency to slouch forward, so keep the shoulders back so the lungs have more
room.
Coordination and Balance
• Improved proprioception – awareness of
position and movement of body parts
• May be affected by arthritis, neuropathy,
age, range of motion
• Balance exercises
• Strengthening postural muscles
• Proprioceptive feedback with external
stimulus
Improving
coordination has to do with training for a specific activity and developing
nerve pathways or shortcuts that make the nervous system more efficient
resulting in faster, more synchronized muscle contractions.
Coordination is
also dependent on proprioception, or knowing where your body is, where your
joints are, where your limbs are, an awareness of position and movement of your
different limbs or body parts. This is impaired if you have neuropathy, when
you’ve lost sensation in a limb or a joint. If you have arthritis in a joint it
can be difficult. As you get older proprioception worsens as range of motion is
lost.
I’ve noticed
that sometimes in a severely polio-affected limb that somebody hasn’t used a
lot or hasn’t used for many activities, they have a harder time telling where
that limb is. Polio differs from many other neuromuscular diseases in that
sensation is intact. The polio virus doesn’t attack sensory nerves. This makes
your ability to use a weak limb much greater than if you lose sensation in the
limb as well. Because you get sensory feedback through the limb, you feel where
it is, you feel the ground, you can use the limb. In neurological illness that affects
sensation as well as strength, it’s impossible to know where the limb is in
space. That’s part of the reason why polio survivors were able to rehab so well
after the acute polio and regain functional mobility.
Core muscles
are very important to balance. Much of balance comes from the muscles that
maintain posture. These are mostly in
the trunk, including the neck muscles that support the head, and pelvic girdle
muscles, the muscles that stabilize the hips as you are walking or moving. If they are weak, it impacts balance.
I know that
Zechariah has been working on core conditioning with the group. If you have to target one group of muscles to
improve function; that is the group to choose. Unfortunately some of you have
trunk muscle weakness from polio so you can’t strengthen those muscles significantly.
In that case, we have to find other means of stabilizing or other ways of doing
exercise.
Exercise Guidelines Based on
Polio Involvement of Muscles
• Individual muscles and limbs have
different exercise needs and tolerance
• Careful assessment important to design
appropriate exercise program
• Developed by the
I did want to
go into how to decide what muscles of yours are safe to exercise or not. I looked at a lot of research on exercise in
polio and the best technique I found was a polio muscle classification
developed by the
NRH Polio Muscle Classification
|
Class I |
No clinical polio |
|
Class II |
Subclinical polio |
|
Class III |
Clinically stable polio |
|
Class IV |
Clinically unstable polio |
|
Class V |
Severely atrophic polio |
Class I is no
polio. Class II is sub-clinical polio.
These are muscles that were affected when you first had polio but recovered and
you’ve been using them like a normal muscle. Class III is a clinically stable
polio muscle. This is a muscle that is weaker than normal but it is stable,
hasn’t changed. Class IV is the clinically unstable muscle, a muscle that has
been weak and getting weaker. They are ones that have become problems or
symptomatic. Class V muscles are really polio-involved and pretty much
non-functional. So obviously you are not going to use those for exercise.
Exercise Goals Based on NRH Classification
• Class I
Muscle: No clinical polio (Grade 4- 5)
– Increase muscle strength
– Improve cardiovascular endurance: can use
these muscles for aerobic exercise
– May exercise 3-4 times/ week for 15-30
minutes at a HR of 60-80% max
– Stretching
A Class I
muscle has no clinical evidence of any weakness. You can use them for
cardiovascular conditioning. You can work on gaining muscle strength in them.
You can do stretching. It may be
different for certain people but you can probably exercise those muscles three
to four times a week for 15 to 30 minutes as a pretty standard exercise
program.
· Class II Muscles: Subclinical Polio
No history of past or new weakness but
with EMG evidence of polio involvement
(Grade 4-5)
–
Maintain normal strength
–
May be used for aerobic
conditioning
–
3-4 times/ week for 10-20
minutes
–
Paced activity with
alternating rest intervals/ days
–
Monitor for signs of overuse
The Class II
muscles are ones that you might not be aware of polio involvement. It may be
hard to tell the difference between a Class I and a Class II muscle. The Class II may be subtlety weak. Unless you
remember the acute polio infection, and a lot of people don’t because they were
too young, you may not know if it was involved or not. We may only be able to
identify sub-clinical polio by performing an EMG and seeing evidence of chronic
nerve damage.
It is wise to
be careful with the muscles you think are Class 1 in case they are a Class
II. With a strengthening program you
have to be careful because in Class I you’ll be able to build strength, but in
Class II you want to maintain strength, not build a lot of strength. With any
strengthening program you should start with gently work. If you start to see any signs of overuse,
back off and try to maintain.
The Class II
muscles that you think are strong and normal can be used for aerobic conditioning.
You can probably exercise them two or three times a week and for 10 to 20
minutes but you may need to do some pacing with rest interval. Consider all
your muscles at least Class II and monitor for the signs of overuse.
• Class III Muscles: Clinically Stable Polio Remote history of weakness with
no new weakness (Grade 3-4)
– Maintain strength and gain strength if
deconditioned
– Active or passive range of motion
– Modified strengthening with pacing and
careful monitoring
– Non-weight bearing exercise preferred
Class III
muscles are weak but you can use them. They are functional, and not getting
weaker. Your focus here is to maintain strength. If you think they are deconditioned, if they
used to be stronger, you can gently try to strengthen them but be very careful.
Range of motion and stretching are safe. If you want to attempt to strengthen
them you should pace activity and monitor very carefully.
If you are
using these muscles for aerobic exercise, which you can do to a limited extent,
it should not be weight-bearing. Use these muscles in a pool or on a stationary
bike or another activity that does not involve bearing your body weight at the
same time.
• Class IV Muscles: Clinically Unstable Polio Developing
new weakness
– Prevent further weakness
– Decrease activity if overuse suspected
– If disuse suspected, rest does not help:
• Range of motion exercises
• Non-fatiguing exercise, gravity eliminated
• Careful monitoring
• No more than 3 times/ week
A Class IV
muscle is an unstable muscle developing new weakness, a post-polio syndrome
muscle. Your goal is to prevent further
weakness. If there is any chance that it is getting weaker because you are
overusing it, you must decrease activity and see what happens. If you eliminate activity and it continues to
get weaker, disuse weakness is a possibility.
You can start a very mild exercise and see if it starts to improve. These are the trickiest muscles for you.
Always start with rest or decreased activity to see what happens. If you have
symptoms of fatigue or cramping, your best bet is to lay
off and not try to strengthen.
• Class V
Muscles: Severely Atrophic Polio
(Grade 1- 2)
–
Passive range of motion or
–
Active range of motion in
pool, monitoring for signs of overuse
Class V are the
severely atrophic muscles. Other than doing some passive range of motion, you
are not going to be using them for exercise.
Symptoms/ Signs of Overuse
• Significant fatigue lasting more than 2-3
hours after activity
• Increased weakness after activity
• Painful muscles
• Muscle twitching, cramping, “crawling”
• Symptoms may not present until 1-2 days
after activity
It is important
to know the signs and symptoms of overuse.
This includes significant fatigue either in a particular muscle group or
generalized fatigue that lasts for more than a few hours after ending the
activity. It is not unusual to be tired
after an exercise session but you should be able to rest briefly and get up and
continue the rest of your day normally. You should not be wiped out for the
whole day. If you are weaker after the
activity or after doing it for a few weeks, you are overdoing in at least some
of the muscle groups.
Painful muscles
are another sign. Keep in mind that mild
pain is part of normal exercise. If I were to go out and run 5 miles today I
would be sore tomorrow. None of you should push so hard that you have
significant muscle soreness. You don’t have to push that hard to make gains.
You can progress slow and steady.
Because there is already so much muscle pain associated with the
post-polio, additional muscle pain should be avoided. I recommend a slow gradual
non-painful exercise program for you.
Muscle
cramping, twitching, crawling sensations at night are other signs of
overuse. Identify which muscles are
symptomatic and what you did with those muscles to determine which activities
to modify.
Remember some
of the overuse symptoms may not come on until a day or two later. They may not occur the night after you do the activity; it might
be the next day. So again, there is good reason for resting in between and
monitor what is going on.
Summary
• Exercise is not the enemy
• Exercise should not hurt but is not “easy”
• Exercise programs must be individualized
• Medical assessment before starting
• Know your body and learn it’s signals
• Exercise performed with a proper
prescription, instruction and technique
can lead to improved function and well-being
To summarize
before I answer your questions, exercise is not the enemy but you have to be careful. Exercise shouldn’t hurt
but it is also not necessarily easy, unless you are at a maintenance level. If
you are trying to improve it is going to be a little bit of work.
Your exercise
programs need to be individualized. You may need medical assessment before
starting if you have not been evaluated recently. You can talk to your general doctor about
starting an exercise program. You might
get an ok, or might need further tests first.
Know your body.
Like with everything else related to post-polio, know your body and how it
responds, and know its symptoms of overuse.
Learn to know yourself. And don’t let anybody talk you into doing
something you know you should not do.
Proper exercise
with good technique can help you. I know
that Phyllis can testify to that and probably many others of you. I think we did
the polio community a disservice initially when we told everybody “Stop doing
things” and “Cut back, cut back, cut back”.
It is a balancing act between what’s OK, what’s good to do, and what’s
too much.
Now I’ll take
questions ---
Q – I get weaker
as the day progresses, my leg. If I keep pushing it, am I essentially doing
permanent damage?
A – There is no
hard evidence that that damage is permanent but I would say that if there is
pain, there is damage. Pain is your body’s warning signal. But if there is not
pain associated with it I couldn’t tell you that you are doing damage. As the
muscle fatigues and it is not activating as quickly, your coordination is
reduced. If you are maintaining activity despite being fatigued, you’re at a
much higher risk of falling or causing an injury because you are not in as much
control.
Q –
(undecipherable) – experience muscle spasms on inside of thigh when doing
isometric exercise
A – You might
need to do it in a different position. When you have that other leg bent, your
bad leg is trying to stabilize while you are lifting this one and your abductor
is probably weak and that’s why you are cramping up. So you might want to
change the way you are exercising that other leg so you do not have to use this
one at the same time. The next time you see the therapist, tell them what is
happening. Talk to me afterwards and I’ll run through some changes you can
make.
Q –
(undecipherable)
A – Often the
pool is the easiest way to do exercise safely because you have that gravity
eliminated and it compensates for some of the imbalances. That said, often when
you get in the pool, especially the first few times, you feel like “I can do
anything” “Wow, I can move” and the tendency is to overdo the first couple of
sessions because you feel so good while you are doing it. So depending on what
activity level you are at, the first time you go into the pool you should set a
time limit as to how long you are going to be in. If you are not doing much of
anything, you may think 10 minutes the first time is hard doing anything active
in the water and then wait and see how you feel the next day and if you feel
fine, then you didn’t overdo. You can build up to that.
But if you are talking about swimming laps
like strokes, there can be a lot of problems. A lot of the strokes are
stressful on the shoulder joint if you have weakness in that area. So again,
what you specifically do in the water has to be tailored to you.
But the water is safer in general because of
the less pressure on joints; you can exercise muscles without putting weight
through the joints.
Q –
(undecipherable)
A – The main
guideline for whether or not you are overdoing are your symptoms afterwards
–pain or muscle cramping, twitching,
indicate that whatever the exercise was, it was too much for you and you
need to go to a lower level. If you are not having any symptoms, then you are
safe to continue.
Q –
(undecipherable)
A – With a
stretch, you should tell the therapist how much it is hurting. When they
stretch you it is usually more painful than when you do it yourself. There is a difference between that kind of
“it is really uncomfortable” and like “AYE, STOP!”
Q –
(undecipherable)
A – The pool is
not for everyone, either. .. Have somebody with you, for sure.
Q – Arm a
little numb at nighttime when lying down, so I move it around some. Do you know
what is causing that?
A – Usually it
is compression of the nerve somewhere or compression of the blood flow. Often
it is at the shoulder where you are compressing some vessels or it can be in
the wrist where you are compressing the nerve. There are different things that
can cause that.
Q – What do you
think about tempurpedic pillow?
A – That
depends on how bad your neck pain is. They are very good but there are cheaper
pillows that also work. With neck
problems you want a pillow that maintains your neck in a neutral position. Peoples’ needs vary depending on what
position they sleep in. If you are on your side it is different from when you
are on your back. There are lots of different options out there.
Q – I just want
you to repeat. Overuse does not cause long-term deterioration of the muscle?
A – We do not
have proof that working to fatigue causes long-term deterioration. Probably all
of you have experienced that when you overuse a muscle it can become
weaker. If you keep overusing with no
recovery periods, the muscle will keep getting weaker. What is not clear is whether an unstable
muscle, a polio muscle getting weaker losing neurons, is caused by overuse over
the years or a function of aging. We don’t know whether there is a correlation
to amount of use or overuse. When I see some of the younger polio survivors, I
don’t tell them “Oh, don’t do those activities because down the line you might
be weaker because you did them.” We don’t know that. In fact, they might be
worse off down the line. Pain is one of your best indicators and the other
muscle overuse symptoms. Most polio pain can be eliminated by changing what you
are doing.
Q – Insurance limit
on number of days for PT coverage, regardless of there being a chronic
condition
A – Now we are
talking about insurance companies and their rules. The 120 days is actually very generous for
your insurance company.
Insurances don’t cover chronic conditions
very well. They certainly won’t cover physical therapy for a chronic condition
because Medicare guidelines do not cover chronic treatments. Medicare changes
its rules every several years, but it still doesn’t cover chronic conditions.
Usually if I have a polio survivor that I
am trying to get into an exercise program we’ll identify an acute problem for
the therapist to work on to get them the therapy sessions. Most of the time
what the therapist will do, they will be treating an acute condition but can
also review a general exercise program.
But our goal with everyone, because there is
no such thing as chronic therapy or therapy for a chronic condition, is have
the therapist get you to a point you can do the exercise independently. For some people that is very difficult to be
able to do their exercise independently, and that’s where the physical trainers
really come in handy. You have to pay them of course, they have to live too,
but now we have eliminated that insurance rule because we are not going through
insurance.
Physical trainers can work with you long
term. So many times they can get results
a therapist cannot. Because a therapist is so limited by the insurance
coverage, they don’t have enough time especially with a polio survivor, to
really see those benefits, to really work with you that slowly that you can
make those gains. The therapist has to justify to the insurance company why
they are still seeing you and they have to document gain so they tend to try to
push a little harder to be able to document that so they can get paid. Often for polio survivors that doesn’t work
very well. So even when I prescribe therapy often I will prescribe it for once
a week so the therapist is able to spread it out a little longer time because
we know there is not going to be fast gains or fast changes.
Q – Does that
mean that after the 120 days of physical therapy if you still needed physical
therapy you would write a script for physical trainer?
A – I could
write a script for personal trainer because it is a medical necessity, but that
does not mean that insurance will cover it.
Physical training is not a provided benefit under most policies.
Q – I have also
myasthenia gravis. Is anything you said here today modified for that?
A – Myasthenia
is a nerve disorder with a disturbed transmission from nerve to muscle. There
are benefits from exercise that you can achieve, and the principles still
apply. The way you do the task will be a little bit modified, and you’ll have
to do a lot more rest periods and intervals because the repetition causes
weakness in myasthenia. Exercise can benefit your cardiovascular system and the
muscle tissue.
**********************************************
E-Mail is wonderful – here’s another
one sent that way from Beverly Schroll – one of our support group members. Thanks, Bev.
Good Advice to Live By…
Handbook 2009
Health:
1. Drink plenty of water.
2. Eat breakfast like a king, lunch like a prince and dinner like a beggar.
3. Eat more foods that grow on trees and plants and eat less food that is
manufactured in plants.
4. Live with the 3 E's -- Energy, Enthusiasm, and Empathy.
5. Make time to practice meditation, yoga, and prayer.
6. Play more games.
7. Read more books than you did in 2008.
8. Sit in silence for at least 10 minutes each day.
9. Sleep for 7 hours.
10. Take a 10-30 minutes walk every day. And while you walk, smile.
Personality:
11. Don't compare your life to others'. You
have no idea what their journey is all about.
12. Don't have negative thoughts or things you cannot control. Instead invest
your energy in the positive present moment.
13. Don't over do. Keep your limits.
14. Don't take yourself so seriously. No one else does.
15. Don't waste your precious energy on gossip.
16. Dream more while you are awake.
17. Envy is a waste of time. You already have all you need.
18. Forget issues of the past. Don't remind your partner with his/her mistakes
of the past. That will ruin your present happiness.
19. Life is too short to waste time hating anyone. Don't hate others.
20. Make peace with your past so it won't spoil the present.
21. No one is in charge of your happiness except you.
22. Realize that life is a school and you are here to learn. Problems are
simply part of the curriculum that appear and fade away like algebra class but
the lessons you learn will last a lifetime.
23. Smile and laugh more.
24. You don't have to win every argument.
Agree to disagree.
Society:
25. Call your family often.
26. Each day give something good to others.
27. Forgive everyone for
everything.
28. Spend time with people over the age of 70
& under the age of 6.
29. Try to make at least
three people smile each day.
30. What other people think of you is none of your
business.
31. Your job won't take care of you when you
are sick. Your friends will. Stay in touch.
Life:
32. Do the right thing!
33. Get rid of anything that isn't useful, beautiful or joyful..
34. GOD heals everything.
35. However good or bad a situation is, it will
change.
36. No matter how you feel, get up, dress up and show up.
37. The best is yet to come.
38. When you awake alive in the morning, thank GOD for it.
39. Your Inner most is always happy. So, be happy.
Last
but not the least:
40. Please Forward this to everyone you care
about.
**********************************************
Reprinted from USA Weekend’s Helpful Tips
for Your Everyday… EatSmart column by Chris Swingle.
Manage your food cravings
Researchers are still debating
why people have cravings that prompt out-of-control eating. But experts have plenty of tips on how to
manage cravings.
KEEP CONTROL
■ Identify – and minimize – factors that trigger
overeating, such as specific foods, social settings, routines or intense
hunger.
■ Choose one place at home to eat, such as at the kitchen
table, so you teach your brain to associate only that area with food.
■ Serve yourself
a small portion. Don’t eat food
straight out of the package.
■ When you finish a portion, wait 15
minutes. Allow your brain to receive the
message that your body has eaten.
■ Eat meals at regular intervals. If you skip meals, you may overeat later.
MAKE SUBSTITUTIONS
■ If you crave sweets, try
fruit, perhaps with a dollop of yogurt.
If you crave chocolate, try a high-fiber, low-sugar cookie or a granola
bar that has a bit of chocolate in it.
■ If you crave salty foods, eat microwave
popcorn, which is higher in fiber than pretzels and potato chips, or baked tortilla
chips.
■ If you are hungry for something more
substantial, eat a whole-grain-and-protein snack, like peanut butter on
whole-grain bread, because it will fill you up.
FECPPSG Editor’s Note:- Personally, I like a Fiber One granola bar to
quench my chocolate craving – and I’m a huge chocoholic…. I also enjoy opening the refrigerator and
snacking on cut-up fruit (pine-apple, strawberries, cantaloupe, etc.
**********************************************
Here’s
another one Prof Michael Kossove e-mailed and gave reprint approval to us. Thanks Prof.
THE BOOK OF
POLIO
by
Mike Kossove
I bet this title has you interested. No, this is not a book about polio. I’ve read most of them. This is the book “of” polio, you know, the rules
and regulations of living with polio. Who’s rules and regulations?
That’s the question. We all have
our own rules and regulations about living with polio which we know are the
ultimate, and some feel that we are obligated to go through life training other
survivors.
Sitting in a group recently
I happen to mention that I wear sneakers every moment I can. That I have a brace plate in my sneakers; all
three pair of them. Well, you had to see
the face on this survivor. Then she
began quoting from the “Book of Polio.”
Are you crazy, you can’t have your legbrace attached to a sneaker. “And where is this rule or law written,” I
asked? “Well, you just can’t.” I thought I might have broken the law, you
know, like cutting the tag off the mattress which told you that removing it was
punishable by law. I was waiting for her
to quote “The Book of Polio,” that I broke Article 4 - Bracing, Section 5 -
Shoes, Section 5 a - sneakers, which says that it is a criminal offense to
attach a metal legbrace to the heel of a sneaker. Now, I’m in big trouble. If she turns me in I wonder if there’s a
reward. And then will they go after the
brace plate manufacturer, the orthotist, or the shoemaker that put in the
plates. I can see it now. A knock on the door. “Who is it.?” Police.
I open the door. Put your hands
up you are under arrest. If I put my hands up, I’ll fall on my butt I told
them. “What’s the charge, I ask?’ You are in violation of The Book of Polio,
Article 4, Section 5, Subsection 5a, wearing sneakers. As they look at my feet, they got me. There’s the evidence. I’m in sneakers. I was fortunate to retain that famous polio
lawyer from
We discuss with our fellow
survivors in person, in chats, at meetings and conferences, our life
stories. We even talk about medicines we
take for every ailment other than polio, and try to blame poor eye sight, headache,
high cholesterol, heart disease, urinary problems, you name it on the effects
of polio. “I’m taking Lipitor for my
cholesterol.” “Oh you can’t take that
if you have PPS. OK, what section in the
Book of Polio do we find Lipitor, and now I guess I’m going back to court. Perhaps I can get Pfizer to pay for this
trial.
A few years ago at a
conference we were discussing bracing.
One survivor asked me “Why on earth would I get metal and leather in the
age of plastic? Not a simple why did you
choose metal over plastic, but “why on earth,” which makes it sound like I
violated another rule in the Book of Polio.
I’ll have to do some heavy brace time for this one. So here we were
sitting in the park at a conference break.
Everyone taking in everybody else’s polio disability. Hey, you know what I mean. Now here comes a female with a very bad
limp. One of the group says: “She needs
a brace and she ought to know it.”
She’ll save that leg, her hip, and the rest of her body. Now, I get volunteered. Why don’t you (one of the group says to me),
go talk with her? Why me? Well, they thought that because I was the
polio educator, that I was the person to do it. I told them that it was none of
my business, and none of us are physiatrists.
Ready for this.....now I’m told, if I don’t tell her and she falls down,
it will be on my conscience. I told them
that I didn’t know I had a “my conscience” center in the brain, and if I have,
it’s probably full by now. Now, where in
the Book of Polio is the chapter on Advice, How, When, What, and the proper
Time.
Most of us are in the mid
sixty’s and older. We have survived the
“curse” of the 20th Century with adversity, and some with greater
adversity than others. We have outlived
people we know in our age groups who did not have a disability, and we did it
quite well. Advice is wonderful to give
to other survivors who “ask for it,” and without the: this is the only way to
do it, take something else, don’t take that it’ll kill you, I have a better
natural supplement, or the best yet, you’re doctor told you that?” “What kind of a jackass is he/she.” If you feel you must give advice, give it
positively. Physicians who treat many of
us have learned a great deal about PPS from us.
You might suggest that they
ask their physician if.....rather than......because what you are taking might
have adverse effects on polio survivors.
Your advice should include choices, and never be negative. We can only
share experiences. Advice on your
medical history, your medications, and assistive devices should come from a
medical team. There is a fine line
between giving advice and sharing experiences.
I hope you have had a laugh
reading some of this. Laughter is our
best medicine. No adverse reactions, and
perhaps most important, the Book of Polio allows it. I know that many of you have similar
stories. I would like to keep this
going. Perhaps a Book of Polio for polio
survivors that they can get hysterical reading.
No one else would understand it.
It’ll be a “had to have been there, heard that kind of thing”
experience. No rules and
regulations. Send your stories to
mkossove@touro.edu. Thanks for reading.
P.S. I’m wearing my sneakers as I type this.
Mike
**********************************************
My
thanks to
Some Thoughts
I've sure
gotten old!
I've had two bypass surgeries, a hip replacement,
New knees, fought prostate cancer and diabetes I'm half blind,
Can't hear anything quieter than a jet engine,
Take 40 different medications that
Make me dizzy, winded, and subject to blackouts.
Have bouts with dementia.
Have poor
circulation;
Hardly feel my hands and feet anymore.
Can't remember if I'm 85 or 92.
Have lost all my friends.
But, thank God,
I still have my driver's license.
Know how to
prevent sagging?
Just eat till the wrinkles fill out..
My memory's
not as sharp as it used to be.
Also,
my memory's not as sharp as it used to be.
It's
scary when you start making the same noises as your coffee maker.
These
days about half the stuff
in my shopping cart says,
"For fast relief."
THE
SENILITY PRAYER:
Grant me the senility to forget the people I never liked anyway,
The good fortune to run into the ones I do, and
The eyesight to tell the difference..
Always
Remember this:
You don't
stop laughing because you grow old,
You grow
old because you stop laughing.
**********************************************
Please
try to make the meetings. We work very
hard to have interesting speakers attend the meetings and if we don’t have
members there it becomes very embarrassing.
Our speaker for this meeting is driving down from
Remember
– our next meeting will be September 20th. Wishing everyone a great summer.
Barbara
~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~
FLORIDA
EAST COAST POST-POLIO SUPPORT GROUP
12
Eclipse Trail /
386-676-2435 / e-mail
address: bgold@iag.net
DATE: Sunday, May 17th, 2009
TIME:
PLACE: Red Lobster Restaurant
Right off I-95 – Exit 261–
(head EAST for about 1/4 mile)
PROGRAM:– Mark Ravenscraft, Tallahassee PPSG Support
Group Leader
who attended the recent 10th International
Post-Polio Conference
in
Cost of the Luncheon is $13.00 all
inclusive. As usual we will have a choice of several different menu
items.
Please send in your reservation tear sheet and check
no later than May 13th, 2009
Any questions call Barbara at
386-676-2435.
=======================================================================================
R E S E R V
A T I O N F O R M
May 17, 2009 Luncheon Meeting
Name:- _______________________________ Phone No.:-
_________________
Number of People Coming:- _________ Number in Wheelchair(s):- ___________
Amount of Check Enclosed:- ________________ @ $13.00 per person
Make check payable to and mail same to:
FLORIDA EAST COAST POST-POLIO SUPPORT GROUP
12 Eclipse Trail --
05/2009
~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~
DUES FOR 2009- Please take a look at your mailing label - on
it you’ll see the month and year we received your 2008 dues, i.e., 01/2008 means
it was received in January 2008, so your 2009 dues was due in January
2009. If your mailing label has the year
first and then the month, i.e., 2008/01 it means that you indicated to us in
January 2008 that you wanted to receive the newsletter but paid no dues. That’s OK as we still believe that anyone who
wants information should receive it – but we do need you to return the tear
sheet with either the “Dues” box checked or the “Keep me on the Mailing List”
box checked.
Your
dues covers the supplies we need to send out the information packets to all
inquiring about Post-Polio Syndrome, any other correspondence we do, and
postage for publicity and for the out-of-country (25) newsletters that we send
out. We’re fortunate in that the “Free
Matter for the Blind and Physically Handicapped” status takes care of the
postage for the over 450 newsletters sent out within the United States. We network with approximately 60 other
support groups throughout the
***********
WHEN YOU MOVE PLEASE be sure to send us your new
address. Sometimes the post-office will
return the newsletter to us with a “forwarding period expired” notice on the
front with your new address but most of the time they are just returned to us
with “address unknown” on it. SO, if you
want to continue receiving the newsletter it is UP TO YOU to make sure we have
your new address.
===================================================
2009 DUES/MAILING LIST
____ Dues Enclosed ____ Keep me on mailing list
If sending dues, please make Check
($5.00) Payable to and Mail to:-
FLORIDA EAST
COAST POST-POLIO SUPPORT
GROUP
12
Eclipse Trail,
NAME:-
__________________________________________________________
ADDRESS:- _______________________________________________________
E-MAIL
ADDRESS:-__________________________ FAX #:- _______________
TELEPHONE NO:-
Home _______________________ Office ________________
Date of
Birth:-_________________ Wedding Anniversary:-
________________
Name and Date of Birth of
Spouse:-_____________________________________
Support Group I Belong To:- __________________________________________
05/2009