FROM THE EDITOR Pray, not for God to cure you but to help you Hi Fellow PPS Managers. help yourself.
In the Sept/Oct newsletter I asked for ideas on Kirk Douglas
how you handle the winter cold. Since no one responded I must assume that either you can handle the ENGLEWOOD HOSPITAL AND MEDICAL winter cold, or you can’t but don’t have a clue what to CENTER do about it.
I do three things: Dress warmly (I found the PRESIDENT BUSH FAINTS JUST LIKE A POLIO best darn long johns at LLBean.com), migrate south SURVIVOR. for the winter, and/or use my spa daily.
From The Post-Polio Institute and International Centre for
The recommendation of PPS doctors is Post-Polio Education and Research exercise in a warm swimming pool. Warming, stretching , and (if you can handle it) aerobic exercise January 13, 2002. Engelwood, NJ. While watching a
do a lot for our overall health and well being. football game, President George W. Bush swallows a
If you don’t have a heated swimming pool or pretzel that irritates his esophagus. The irritation causes don’t care to go to the gym, a portable home spa could his pulse and blood pressure to plummet and he faints. be the answer.
I’ve been hearing quite a lot from PPS An unheard of experience? Not for some of the world's Managers who have, or about to get, a home spa, 20 million polio survivors with Post-Polio Sequelae. PPS sometimes called a Jacuzzi or hot tub. Since I’ve had are the unexpected and often disabling symptoms -- one for several years I thought it was about time to do overwhelming fatigue, muscle weakness, muscle and joint a full on article about it. pain, sleep disorders, heightened sensitivity to anesthesia,
cold and pain, as well as difficulty swallowing and
You may have noticed that, generally, the e-breathing -- that occur about 35 years after the poliovirus mails shared in this newsletter contain glowing praise attack in 75% of paralytic and 40% of “non-paralytic”
with “Keep up the good work” as a common phrase. polio survivors. Frankly, I’m not sure I could have kept this thing going for almost four years without your encouragement. On "It's called vaso-BAGEL-syncope, a play on the name the other hand, you may think that only the good vaso-vagal syncope," says Dr. Richard L. Bruno, comments are printed, but the fact is, there have been Chairperson of the International Post-Polio Task Force no constructive criticisims recieved. Do you have and Director of The Post-Polio Institute and International
something to say? Could your newsletter be better? Let Centre for Post-Polio Education and Research at New everyone know how you feel. Drop me a line. I’ll take it Jersey's Englewood Hospital and Medical Center. "This is with a :-) and maybe even do something about it. a problem that we have been studying in polio survivors
The President's problem likely had to do with the vagus --??o??--
IN THIS ISSUE: nerve," Bruno explains. "The vagus is the main highway PRESIDENT BUSH FAINTS for nerve traffic to your esophagus -- the swallowing tube
LIKE A POLIO SURVIVOR -- your stomach and intestines." The vagus carries
commands from brain stem neurons to activate the
muscles in your throat, esophagus, stomach and intestines ...OWNING A HOME SPA
Letters and more that make swallowing, digestion and elimination possible.
The vagus also sends commands that tell your heart --??o??--
muscle to slow down and your blood vessels to open up.
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"Vagus nerve stimulation, causing a drop in heart rate muscles to move the food downward. When food gets and blood pressure and blood vessels opening up, is stuck, irritation triggers a painful esophagus muscle spasm responsible for the common kind of faint, called vaso-that also stimulates the vagus nerve, causing blood vagal syncope," says Bruno. pressure to drop and the heart to change, what apparently
happened to the President." "But the vagus nerve is a two-way street," explains Bruno, a clinical psychophysiologist who trained as the The relationship between fatigue, brain stem damage and autonomic nervous system fellow at the Columbia low blood pressure links polio survivors to another group: University's College of Physicians and Surgeons. "The those with chronic fatigue syndrome. About one quarter vagus both sends commands to your heart and gut and of CFS patients have fatigue that is associated with low listens to the results of those commands." The vagus blood pressure or changes in heart rate. Some CFS also carries information about how much food is inside patients report fatigue when a hot shower or hot room your throat, esophagus, stomach and intestines back to causes blood pressure to drop, as do about one third of those same brain stem neurons. polio survivors. "Other CFS patients have blue feet," says
Bruno, "just like our PPS patients' 'polio feet,' suggesting "Anything that irritates the esophagus -- like that blood pooling in the legs contributes to low blood swallowing a large piece of bagel or even a pretzel -- pressure. can stimulate the vagus enough to slow the heart and drop blood pressure, which may be what happened to Did President Bush have a mild case of polio, damaging the President," says Bruno. "I assume he will have the his brain stem and causing a "vaso-bagel" faint? "We have same tests that we give polio survivors: a video-evidence that more than 150,000 American had a mild and fluoroscopic study to make sure his swallowing muscle undiagnosed case of polio and could be at risk for all PPS,
are working while his heart is being monitored, to make not just 'vaso-bagel' problems," says Bruno. Bruno's 2001 sure the vagus isn't overactive and electrical impulses International CFS Study found that 20% of baby-boomers, are being conducted properly through the heart." like the President, who are diagnosed with CFS today had
a childhood illness that looked like a mild case of "non-Did President Bush Have Polio? Why do polio paralytic" polio. "So at least those 20% of baby-boomers survivors have more problems with the vagus nerve, may have PPS today, not CFS," explained Bruno. heart rate and blood pressure than do those who didn't have polio? "The poliovirus damaged brain stem "But the President doesn't have chronic fatigue," said neurons that control the vagus nerve, and possibly the Bruno. "You don't need to diagnose him as a hidden polio nerve itself," says Bruno. "Vagus damage disrupting the survivor to explain his faint. Although rare, 'vaso-bagel' normal functioning of the gut may explain our 1985 syncope does happen to those who didn't have polio." Post-Polio Survey findings that swallowing difficulty, diarrhea, colitis, ulcers and constipation are as much as REFERENCES six times more common in polio survivors than in those who didn't have polio." Bruno RL. The Polio Paradox: Uncovering the Hidden
History of Polio to Understand and Treat "Post-Polio Bruno has been following a growing number of post-Syndrome" and Chronic Fatigue. Warner Books, 2002, in polio patients from around the country who come to press. The Post-Polio Institute. These polio survivors don't Bruno RL. Paralytic versus “non-paralytic polio:” A
usually faint but do feel exhausted after eating meal. distinction without a difference? American Journal of Physical
Bruno has found that, when these polio survivors' Medicine and Rehabilitation, 1999; 79: 4-12
stomachs fill with food, the vagus nerve is apparently Bruno RL. Chronic fatigue, fainting and autonomic over stimulated and triggers a drop in blood pressure, dysfunction: Further similarities between post-polio causing feelings of fatigue. fatigue and Chronic Fatigue Syndrome? Journal of Chronic
Fatigue Syndrome, 1997; 3: 107-117. "Polio survivors also report another problem: food Bruno RL, Frick NM. Stress and "Type A" behavior as sticking in the upper esophagus," said Bruno. "We precipitants of Post-Polio Sequelae. In LS Halstead and think this is due to the vagus not stimulating esophagus DO Wiechers (Eds.): Research and Clinical Aspects of the Late
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Effects of Poliomyelitis. White Plains: March of Dimes You probably know how difficult it is to shop Research Foundation, 1987. for equipment and set up new procedures when Manyari D. Abnormal reflex venous function in you’re fatigued. Fortunately, the months spent patients with neurally mediates syncope J Am College learning spa care and maintenance, and massage Cardiology, 1996; 27: 1730-5. and stretching procedure were out of the way Mehta D. Recurrent paroxysmal complete heart block before I really needed them. With this in mind I induced by vomiting. Chest, 1988; 94: 433-5. share with you all I have learned about spas. Palmer E. The upper gastrointestinal vagovagal reflexes that affect the heart. Am J Gastroenterology, 1976; 66: Advantages of having a home spa 513-22. • PPS related cold intolerance is washed away. • We weigh about 90% less when we are Everything You Ever Wanted to Know About suspended in water -- what a relief. Owning a Home Spa • Even though we may do very little exercise, we (Okay. Everything I know about it) still work hard to perform our daily minimum by Rick VanDerLinden activities and lactic acid still builds up in our
overworked muscles. The jets massage away the As with many polio survivors, PPS was ushered burning acid. in with a run-down feeling -- the feeling of • Stretching improves range of motion and reduces "getting old before my time." My first reaction stress on joints. It is much safer when the muscles was that I must be getting lazy in my old age, so are warm and relaxed. I started a rigorous exercise program. It wasn’t • Stretched muscles help prevent skeletal injury in long before I had aching muscles. I recognized the case of a fall. the need for massage therapy, but it was too • Kicking your legs and waving your hands through expensive and not available on demand. the water can provide a little bit of aerobic exercise Besides, I was too shy to even try it. Solution -- with less overall stress. a home spa. • It’s very relaxing. Less mental stress = less My first spa cost $250.00. I moved it physical stress = less pain and fatigue. myself (with a lot of help from my friends), spent • Your spa is available any time you need it. about $125.00 for a concrete foundation, $100.00 for the electrical connection, and Choosing the right spa for you
$650.00 to replace the pump/heater package. I Be careful that you don’t try to save space or didn’t mind the repairs and other expenses money by getting a one person spa. You need to because it had an acrylic tub which will last be able to stretch out in all directions while fully many years. (Later I traded a bass guitar for a suspended, so your best bet is a four or more privacy fence.) person spa depending on how tall you are. It’s also I then proceeded to discover the joy of nice to be able to get into the lounge chair position owning a spa. After a long bike ride the spa for rest periods. The following recommendations would melt away the muscle ache in peace and take these factors into account. solitude. Stretching was easier in the spa, and was seldom skipped. On a cold winter evening I 1) The ideal depth at the bottom should be about could watch the snow fall through the mist rising the distance between your shoulder and butt when from the hot bubbling water. On a hot summer in the seated position. One lounge seat plus bench day the water, set to a lower temperature, was seat(s) will give you room to move around and a refreshing. place to rest. At first the spa was a wonderful luxury, but as time went by and PPS reared it’s ugly 2) Dimensions should be no less than your height. head in full force weakening muscles became I'm 6'2" and my spa is 7' X 7’ inside dimension. more sore with less effort and the spa became a necessary part of my management program.
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3) A strong pump will give a good massage. The Ventilation is important. I was overly
more jets you have the stronger the pump needs concerned about this when I designed my spa
to be. My old spa had 4 jets and a 1 horse motor. room. I have a 4’ sliding glass door (8’ with both My new one has 22 jets and two 4 horse motors. glass panels removed -- big enough to get the spa
through) three windows and two sky lights. I find 4) One of the biggest arguments against owning that the room ventilates just fine with one sky light a spa is that most people forget opened a few inches above the spa to use it. and the sliding glass door opened a
a) I use mine about three few inches. or four times a week in the If you have an indoor spa it’s Winter, a little less in the a good idea to keep the air Summer. I consider separate from the rest of the house. the spa to be my second best I have a french door between the treatment for PPS symptoms spa room and the bedroom, and a (the first is "don't over do".) fully sealed shower door. I also
b) One professional have a built in heater/AC mounted massage treatment costs about on the wall. This comes in handy on as much as the monthly cost of the colder days. Also, it’s nice to
electricity to run a spa. have lots of plants in the room, and
c) You can use the "waste they may need to be kept warm. of money" theory to your As you can see there are advantage by buying a used spa. many options, but you may need to If you can't find the right one in check with a contractor to be sure the classified ads you might try you meet local building codes. running an ad -- "Turn your unused spa into instant cash" for example. You Use and Maintenance may find the right one for as low as a tenth of it's There is a direct relationship between how
new price. carefully you use your spa and the required water
maintenance. If you’re careful, the water should Spa location only need replacing three or four times a year, and
The closer it is to your shower and although the chemicals are not terribly expensive, dressing area the better (more on this later). My improper use could easily double or triple the cost. shower has two doors. One to the master Since I’m fiscally conservative (cheap) my bedroom and the other to the spa. The floor of recommendations should save you some time,
the shower is slightly raised and I have a energy, and money.
redwood step up between shower and spa so Organic materials (dirt, body oils,etc.) and
that it’s one step up and I can sit on the edge of soap and other body and
the spa and swing my legs over into the spa. garment care products shorten
Getting out and rinsing off in the shower is just water life and increase
as easy. Having the spa that close to the shower chemical use. Take a good, hot,
means that you only have to dry off and dress soapy shower and rinse well
one time saving a lot of energy. before using the spa. If you
If it is enclosed you are more likely to use must wear clothing in the spa,
it in the winter when you need it the most. You make sure it is thoroughly
can put it in the room next to your shower, add a rinsed of laundry products
room, put it on a the porch and build a wind before entering the spa. Don’t
break/privacy screen around it, or buy a put your head in the water --
redwood enclosure. face and hair are particularly
oily and it’s hard to rinse things
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like conditioner out of your hair in the shower. Shut of power to spa, drain water, clean filter,
Normally, the main chemical you use is wash tub with recommended product (I use a non-Bromine. It comes in granulated and in tablet abrasive foaming cleanser), rinse well. Refill, turn form (for the floating dispenser). After filling the on power with spa set to thermostatic control (see clean spa with fresh water, use “Metal Be Gone” below), add metal-be-gone, add bromine, check or some similar product to neutralize the water, floating dispenser. Check bromine every other day then add granulated bromine as indicated by for first week, once a week thereafter until you get water test kit. It takes a few weeks of testing the hang of it.
and adding granulated bromine to get it settled
down, but after that the floating dispenser Timer controls (adjust opening to about 1/2’) can then be used Automatic controls have two basic settings. to maintain proper bromine level with normal use. Usually there is a switch that allows you to choose If soap bubbles start to form during use, there is between clock only and thermostatic control a liquid product available to fix it. functions.
Clean the filter weekly. The thermostatic control function is used to
If you get behind on your bromine and the heat the tub after refilling. It is also the setting to water gets cloudy, it’s too late to fix it by adding choose if your spa is outdoors and may be subject chemicals and you need to drain and clean the to freezing.
tub. The timer control setting allows the
pump/heater to run only at specified How to know when the water times. I run mine twice a day for 45 needs changing minutes at a time. This keeps the water
I look for one of three things hot when I expect to use the spa and -- all involve running the jets with performs the necessary filtering cycle. air input turned on and assume that water is clear and that test Recommended temperature
show bromine is at proper level. Based on fifteen to twenty
First, bubbles may form that minutes spa time: Winter - 98 to 100 are dark in color and/or stay on degrees, Summer - 96 to 98 degrees. the surface or leave a film after The hotter the water is the less time jets are shut off (I call this ugly you can spend in it. If you have rubber bubbles). If the bubble remover legs or feel fatigued when you get out, solution and filter cleaning do not either you were in it too long or it was cure it, change the water. too hot.
Second, run the jets with air, then shut of My routine for PPS management
the jets and count how many seconds it takes Set vents and open spa before showering. for the water to become clear enough to see 1) Relax in spa and let muscles warm up.
details at the bottom of the spa. Fresh water 2) Massage. With air jets running move each takes virtually no time to clear. I change water if muscle across convenient jets. it takes more than eight seconds. 3) Stretch. Shut off jets if you want to (I like it quiet
Third, look across the surface of the or listen to soft music). I stretch the back of my legs, water while the jets with air are running. If the quads, hips, arms, neck, back, the works. The popping bubbles send up a little flare it’s time for stretches you do depend on your needs and a change. Also, the little flares can get in your abilities and/or the advice of your physical therapist. nose and cause sneezing -- another sign that it’s A good reference, however, is the exercise video time. from Warm Springs Georgia called “Aquatic
Therapy for Polio Survivors”, Part 2 of the Cleaning procedure “Wellness for the 90’s” series. (800) 235-2156.
4) Relax. You may want to do some more massage.
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that has come back to bite me, perhaps the newsletter will Total time including shower and dressing - 1/2
help them understand what has happened. hour.
-------- As a PPS manager, a home spa might
Hi Liz, be one of the best things you can do for yourself.
We sure did [want it that way]. And, you're right to Proper use can improve mobility, reduce pain, include your family in the changes that must be made in and relieve stress better than any other order to manage PPS. The family want's to see you treatment, professional or otherwise. I wouldn’t "normal" and their attempts to motivate you can be be without mine. harmful. I'm sure you have already gone through the unsuccessful self motivation phase of PPS. Mine lasted Enjoy! almost two years and dern near killed me. --??o??-- Rick -------- From the (e-)mail bag To the daughters: ______________ It's important for the family of a PPS person to be Advice: supportive, but it's a delicate situation. Your mother still My theory about stress and excitement is: wants to be as independent as possible, so it's best to be 1) Anything that causes a spontaneous release of available to help her, but not until she asks for help. adrenaline causes muscles to tighten - immediately at a Also, if she is like the rest of us, she needs to be very high level, and then to a lesser degree for... I don't encouraged to rest often, not motivated to do more. In my know... hours? The expenditure of energy is similar to case I try to hide pain and weakness from my family (and working to finish a project when you know you should myself as well). When my wife says that I look tired and stop. should rest it is welcome advice. 2) Uncontrollable situations force you to be extremely Rick alert (and maybe frustrated)at a time when you should ------ normally be resting and in full control of your world. How refreshing to encounter another individual who You need rest - alertness is not very restful.
seems to have been as "pig-headed" and These two factors combine to give you a big
determined to "demolish self" as I was!! ha, ha. Our hole in your gas tank. After all the gas has run out you
own worse enemy, true, true! Thank you for being have to repair the hole, and then you have to refill your
there and now serving as a total understanding tank. It could take hours, days or weeks to recover.
backup. It is so very hard to walk a mile in our Be patient with your body and it will be good to
moccasins, no one wants to, much too scary for you.
most...tee, hee. __________
Thanks for the good (god) words and for Hi Rick
sending my daughters the newsletter. Liz Thank you so much for the recent newsletter - -
I really enjoy your letters and find them informative --??o??--
Thank you for reading the PPS Manager Newsletter. And, and helpful. Keep up the good work!!!!!!!!!!!!!
thanks for your help and your words of encouragement. Dorothy
Special thanks to Dolores M., Bill & Beverly, Virginia, Bill Vizenor
Conversations with Liz:
Would you please send the newsletter to my
grown daughters? They have always thought of me as --??o??-- indestructible, probably the way most off-spring view
their PPS parents...didn't we want it that way???!!! Now
The PPS Manager is published every other
month by REVanDerLinden and is presented as
management ideas and is not intended as a
substitute for medical care.
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To give financial help, make check payable to: To submit ideas, writings, or commentary, write
RE VanDerLinden to above address or E-mail PPSman@aol.com or
34711 Lyn Ave call Rick at (909) 926-5492
Hemet, CA 92545