Jun 20 2012

Polio Perspecvtive

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Polio Perspective – August, 2018

Millie Malone Lill, Editor        Wilma Hood, Publisher

In This Issue

Of Frozen Fingers and Polio Feet

by Dr. Richard L. Bruno

THE POST-POLIO HOKEY KOKEY

by Ron Amundsen in Hawaii

reposted from poliosurvivorsnetwork.org.uk

Those Old Tapes

by Millie Malone Lill

Web Corner 

Other Polio Newsletters 

A Little Bit of Humor

******************************************************

“Of Frozen Fingers and Polio Feet” 

by Dr. Richard L. Bruno
A warming winter tale for everyone who hates the coldddddd!

Polio survivors are extremely sensitive to changes in temperature. At merely cool temperatures, most polio survivors report that their feet have always been cold to the touch, their skin a purplish color. However, as polio survivors have aged, 50% report intolerance to cold and that their limbs have become more sensitive to pain as the temperature decreases. Cold was reported to cause muscle weakness in 62% of polio survivors, muscle pain in 60%, and fatigue in 39%. (Bruno & Frick, 1987).

When polio survivors were cooled in the laboratory from 86° F to 68° F, motor nerves functioned as if they were at 50° F and polio survivors lost 75% of their hand muscle strength. (Bruno, et al., 1985a) But, although polio survivors are twice as sensitive to pain as those without polio, no increase in pain sensitivity was found at lower temperatures. (Bruno, et al., 1985b)

The reason polio survivors have such trouble with cold is that the parts of the central nervous system that should control body temperature were damaged by the poliovirus. In the brain the hypothalamus (the automatic computer that controls the inner bodily environment) was damaged by the poliovirus, including the body’s thermostat and the brain area that tells your blood vessels to constrict. (Bodian, 1949) In the spinal cord, the nerves that carry the message from the brain that tells the capillaries in the skin to contract when its cold were also killed by the poliovirus. (Bodian, 1949) Thus, polio survivors are unable to stop warm blood from flowing to the surface of the skin as the outside temperature drops. This allows loss of heat from the blood near the surface of the skin and causes the limbs to cool.

When the limbs cool, arteries carrying blood to the skin and veins that should carry blood out of the skin narrow passively as they get cold, trapping blue venous blood in the capillaries and causing the feet to look blue and to become even colder. The cold skin chills the motor nerves, causing them to conduct more slowly and to be less efficient in making muscles contract. The cold also chills tendons and ligaments (like putting a rubber band in the freezer) making movement of weak muscles more difficult. As polio survivors know, it takes hours under an electric blanket or a long, hot bath to warm cold legs and regain strength.

However, when polio survivors take a hot bath, blood vessels do exactly the opposite of what they do in the cold. Polio feet and legs become bright red as arteries and veins relax and blood rushes to the skin. Then, when polio survivors stand to get out of the tub, they can feel dizzy or even faint as blood pools in their legs and causes their blood pressure to drop (see Bruno, 1996). The pooling of blood in the feet also explains why polio survivors’ feet swell, swelling that increases as they get older. And polio survivors’ easily losing body heat explains why they have an increase in symptoms, especially cold-induced muscle pain, as the seasons change.

Polio survivors need to dress as if it were 20° F colder than the outside temperature. The trick is to stay warm from the get-go. You need to dress in layers and wear heat retaining socks or undergarments made of a woven, breathable plastic fiber called polypropylene (marketed as Gortex or Thinsulate) that should be put on immediately after showering when the skin is warm in the morning. Then put on warm socks, even electric socks with battery-powered heaters. Also, try to keep your feet elevated during the day.

If you still can’t stay warm, you can talk to your doctor about taking Niacin or the anti-hypertension drug Minipress that open your arteries and get more hot blood to your feet. However, these drugs can open arteries too much and cause you to lose heat from your uncovered skin and drop your blood pressure when you stand. These are drugs of last resort to be used very carefully!

Also, polio survivors need to remind doctors that EMGs or nerve conduction tests must be performed in a room that is at least 75o F to prevent false abnormal readings and that a heated blanket is necessary in the recovery room after polio survivors have surgery (Bruno, 1996).

 

THE POST-POLIO HOKEY KOKEY –

 from Ron Amundsen in Hawaii

jockey shorts left leg, jockey shorts right leg,
long underwear left leg, long underwear right leg,
left sock, right sock,
left knit dancer’s legging, right knit dancer’s legging,
left pantleg, right pantleg,
left shoe, right shoe,
STAND,
up shorts, up long underwear, up leggings
[this could be done sitting, but it would require another stand cycle],
up pants, tuck, button, zip, SIT, buckle,
pant pant pant pant
In other words it is possible to dress the bottom half of your body without standing up several times
in order to arrange your various layers of clothing. It takes a while to learn, and you can’t be too
groggy in the morning when you do it. But you can actually get all of your layers started on your
legs, sort of telescoped into each other, and then stand up only once and pull them all up over your
butt. How many hundreds of standups and sitdowns I’ve wasted in the past seven years I couldn’t
begin to count.
The hazard here is that it is possible to get confused and do:
jockey shorts left leg, (etc. as above), left pantleg, long underwear right leg, right sock, jockey
shorts right leg, right legging, right pantleg, STAND, up jockey shorts, tangle, fall, roll over to
telephone, phone 911 for help.
A female version is being planned with left knicker, left pantyhose, and if there are enough orders
then he is going to contact Jane Fonda about a Video……

from Ron Amundsen in Hawaii, reposted from poliosurvivorsnetwork.org.uk

 

Those Old Tapes

by Millie Malone Lill

“You can do it.  Just try a little harder.”  “You don’t need help with that.  You have to learn to do it on your own.”  “Stop crying.  You make people feel bad when you complain like that.”  “You can’t expect other people to stop doing what they want and do what you want!” “Use it lose it.  You just have to work harder, build up those muscles.”

Anyone else hear those old recordings going around in their heads?  I know I do.  Sometimes I wake up and decide I’m just lazy, I don’t have PPS!  Doesn’t take very long for my body to show me in no uncertain way that that thought was stupid.  I hear those words and forget that polio and PPS are treated in opposite ways.  Hard work after the original onset of polio made our motor neurons branch out.  It made it possible for us to walk again, to be “normal” in many ways.   After many years of overusing those branches, they are wearing out.  The treatment for PPS is Conserve to Preserve.  Lots of rest, don’t overdo.  Can’t just do nothing at all, but if it takes a long time to recover, you have done too much.

I know all these things.  I had polio at age 4, and PPS hit me in my 40s.  I am now…never mind, you don’t need to know how old I am, but trust me, I can’t even see my 40s with the Hubble telescope.  Even so, I find myself thinking I can do a lot more than I can.

I find it hard, still, to tell people that I can’t do whatever it is they need me to do because I’m too fatigued.  “Oh, I get tired, too,”  I hear that a lot.  Well, my fatigue is a little more than just being tired  My ears buzz and I can’t form a coherent sentence.  At some point, I will get chills and shake.  I try to stop before this happens.

When someone criticizes me for any reason, the old tape recorder starts up.  “You are not a good person.  You are deformed, ugly, and totally unacceptable as a human.”  Now, have I heard those exact words or has my brain just combined other words and come up with this sentence on its own?  I try to stop the dismay that floods my body and think it through.  Was I at fault?  If so, I need to apologize.  Was this a bully, trying to make me feel bad?  That has happened now and then.  In that case, I need to put my finger firmly on the controls of that tape machine and stop it.  There are always people who look down on someone who uses a power chair.  Perhaps they are scared that it could happen to them.  Or maybe they are just ignorant.  Ignorance is just lack of knowledge, so it is curable.  Stupidity is being ignorant and proud of it.

Polio has made us very independent.  However, we need to hold that independence loosely and allow others to help when we really need it.  Throw that old tape player out.  They are outmoded now.  Make your own MP3s of affirmation.  Think of all you have accomplished, most of it with fewer than half the motor neurons others have.  Stand straight and tall, if you can, but at least in your heart if not in your body.  You have done very well.  You have survived and you will continue to survive.  If you consider all you’ve done with your life, you have more than survived.  You have thrived.

Web Corner

Tai Chi helps pain from fibromyalgia (works on PPS, too, most likely)

https://www.medscape.com/viewarticle/894331

New cases of wild polio

http://www.promedmail.org/direct.php?id=20180817.5972364

Her polio stricken son died while tied to the bed

https://www.kansascity.com/news/local/article216799335.html

Protein 3x a day helpful for seniors

https://www.disabled-world.com/fitness/nutrition/daily-protein.php

Why I won’t apologize for having fun while chronically ill

https://themighty.com/2016/08/why-i-wont-apologize-for-having-fun-while-sick/?utm_source=newsletter_chronic_illness_beat&utm_medium=email&utm_campaign=newsletter_chronic_illness_beat_2018-08-24

Polio workers to be deployed in 49 districts

https://postcourier.com.pg/polio-workers-deployed-49-districts/

Meet Roman, an adorable boy with spina bifida

https://postcourier.com.pg/polio-workers-deployed-49-districts/

Working through life’s daily stress

https://www.newswise.com/articles/the-medical-minute-working-through-life-s-daily-stress

How to get involved with Pain Awareness Month (September)

https://themighty.com/2018/08/how-to-get-involved-with-pain-awareness-month/?utm_source=newsletter_chronic_illness&utm_medium=email&utm_campaign=newsletter_chronic_illness_2018-08-21

The long goodbye…the Bill and Audrey Curnutt

https://www.ozarksfirst.com/news/the-long-goodbye-bill-and-audrey-curnutt-part-2/1291722957

15 code words you will only understand if you are a “spoonie.”

https://themighty.com/2018/07/sick-code-words-what-people-really-mean/?utm_source=newsletter_chronic_illness&utm_medium=email&utm_campaign=newsletter_chronic_illness_2018-08-22

 

Other Polio Newsletters

https://www.papolionetwork.org/whats-new.html

http://aspr-svg.ch/

http://www.postpoliosupport.com/poliopostnewspage.html

https://www.polioaustralia.org.au/

http://www.post-polio.org/

http://polioepic.org/

http://snapsnv.org/

http://www.poliosurvivorsnetwork.org.uk/

https://www.atlantapostpolio.com/

 

A Little Bit of Humor

A farmer purchases an old, run-down, abandoned farm with plans to turn it into a thriving enterprise. The fields are grown over with weeds, the farmhouse is falling apart, and the fences are collapsing all around.  During his first day of work, the town preacher stops by to bless the man’s work, saying, “May you and God work together to make this the farm of your dreams!  “A few months later, the preacher stops by again to call on the farmer. Lo and behold, it’s like a completely different place–the farm house is completely rebuilt and in excellent condition, there are plenty of cattle and other livestock happily munching on feed in well-fenced pens, and the fields are filled with crops planted in neat rows. “Amazing!” the preacher says. “Look what God and you have accomplished together!””Yes, reverend,” says the farmer, “but remember what the farm was like when God was working it alone!”

7 Responses to “Polio Perspecvtive”

  1. Thomas Christian says:

    Ole better git a hearing ade?

  2. ruth says:

    thanks for this news letter. My sister is having the same feeling of when she had polio at 6. I am helping her learn what could be happening. thanks for this as the doctor is not talking about it.

  3. Millie Lill says:

    Ruth, read all you can online and I also suggest that you join one of the Facebook polio sites. You can learn a lot from those of us who have been there and done that.

  4. Hilary Boone says:

    Why do we still have so much hassle trying to get decent medical care. Sharing experiences really does help us realise ‘It’s not just me’ which slightly lessens the frustration and stress. Millie as usual you have done a great job.

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