FROM THE EDITOR
Hi Fellow PPS Managers, [The following was first published in the December 1999 issue of the PPS Manager Another holiday season has passed, and a new newsletter. – Editor] decade has begun. It’s hard to believe. Ten years
ago people were worried about the millennium
bug. “From Ten Years Ago” was actually from
the previous century. And here we are: looking
forward to another spring.
Most polio survivors agree that stress Here at the ranch, welcome rains have brought a
increases the fatigue and pain we hint of green to the long brown fields and hills,
experience. To understand what this and with it the promise of wild flowers and
means we need to define the stress we’re warmth. Real hope, not vague suggestions of
talking about. unsubstantiated change. Only nature can do that.
Mental (or emotional) stress is worry and So let’s all do the Charlie Brown/Snoopy dance
anxiety. Physical stress is tension or in our hearts and stay warm any way we can
until nature turns up the heat. pressure. We feel it in our muscles when
we are opposing gravity, trying to stay In this issue is a quick review of the Salk warm, or experiencing emotional stress. Breathing Symposium. When attempting to write about it, all I could think was, “You had to If we can control or eliminate stress we be there.” Well, you can. Online at can greatly improve our quality of life. poliotoday.org That may mean we have to concentrate
on relaxation. There’s a load of info in the Meetings and the Letters departments, so take your time, enjoy, Here are a few of the thousands of dos and learn. and don’ts you might try when stress threatens: Rick VDL ? Stay warm and relaxed. --??o??-- ? Rest often. IN THIS ISSUE:
? Lay flat or sit in a recliner.
? Wear an insulated body suit in the
winter. From Ten Years Ago Review of the Salk Symposium ? Get yourself in hot water. Some New Thoughts Re: Assisted
Meeting Reports, Letters, and much more…
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mechanisms of polio damage to our ? Become a snowbird.
bodies, taking carefully prescribed ? Get a lap dog or cat.
medications, modifying our diets and so ? Don’t worry.
on. All these techniques and procedures ? If you can’t fix it, forget it.
confront the physical foe but what about ? Enjoy being alone.
the spiritual? ? Listen to soft music without words.
? Concentrate on your breathing.
A few years ago (after about four years of ? Never try to run someone else’s life.
PPS 101) my wife, Sandy, said to me, “All ? Don’t force a decision when you’re
you ever think about is Post-Polio. too tired to think.
There’s more to life than that.” ? Be childlike.
At first I felt guilty and foolish because I
had not noticed that it had become an
obsession but after giving it some So far we’ve relied on the fact that the
thought I replied, “I have to get control of opposite of stress is relaxation, and in a
this thing if I’m ever going get my mind physical sense it is. But in order to really
back on track. If it takes all of my energy get a grasp on it we have to take it a step
then that’s what I have to do.” further and look at stress from the purely
human aspect - the spirit. From that
Since then I’ve put in place a lot of little standpoint the opposite of stress may very
habits that allow me to successfully well be joy.
manage PPS without thinking about it
and therefore giving me more time to I remember a time when I woke up every
relax and concentrate on further day with a joyful feeling. The smell of the
reducing stress. This newsletter is one of morning air, the promise of things to
the results of that quest. Why? come, new things to discover... Why can’t
life be like that every day? Now I often
I discovered that to be happy we need to wake up and feel the aches and weakness
turn our attention outward. The happiest that should have gone away with a night
people I’ve met in our little PPS of rest. Can we have a blissful life in spite
community are those who do one or more of this physical challenge? The answer is,
of the following things: Volunteer, go to “Heck, why not!”
church, help others, make people laugh,
touch peoples hearts, create, love. It’s a
joy thing - the opposite of stress. And it
Every day we learn a little more about
I wish you true peace and joy. how to manage our PPS symptoms. We
improve our quality of life by bracing and
Rick Van Der Linden pacing, better understanding of the
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Finally, Dr. Lichtzen was joined by Registered Breathing and Sleep
Respiratory Therapist Louis Boytano. Mr.
Symposium Boytano works with Dr. Josh Benditt at
Northwest Assisted Breathing Center, at the Salk Institute University of Washington Medical Center,
Seattle, Washington. Their presentation, On November 1, 2009, The Salk Institute “Solutions to Breathing and Sleep Problems: presented the Breathing and Sleep Symposium. Finding the Right Ventilator for the Right This is a summary of events and observations by Problem at the Right Time” covered the wide Rick Van Der Linden. variety of problems and solutions in dealing
with neuromuscular breathing weakness. Part 1 Rebecca Newman, VP of Development and Observations Communication at Salk Institute, opened the symposium with the interesting history of the In April 2005 The Salk Institute celebrated the Salk institute, outlining the important work done 50th anniversary of the Salk vaccine. At that by world-renowned scientists there today. celebration, I was honored to spend a few
minutes with Dr. Peter Salk, Dr. Jonas Salk’s
Research includes plant biology studies aimed at son, and his wife Ellen. I was delighted to hear more efficient crops, and finding ways to turn stories of life around the house with Dr. Salk skin cells into stem cell for the ultimate cure of and his friends. Most impressive was his a host of disorders. For more information, visit philosophy regarding the affect he had on the http://www.salk.edu/about/ world at large, and the sense of responsibility
that remained after the fact. Dr. Geoffery Sheean, Director of Neuromuscular Division UCSD, was then This year the Salk Institute celebrates its 50introduced by MC Judith Fischer. th
anniversary. After spending a few hours with Part 2
the good folks at the Institute, it’s obvious the In his presentation “Respiratory Muscle
spirit of Dr. Salk lives on as research continues Weakness in Neuromuscular Conditions” Dr.
to save lives and advance quality of life Sheean talked in detail about how normal
worldwide. breathing works, and how neuromuscular
disorders such as polio can disrupt the process.
This symposium was the brainchild of Gladys
Swensrud. The idea came to her only a few Part 3
months before the event took place and, thanks Noah Lichtzin Assistant Professor of Critical
to the great effort of the folks at the Institute, it Care Medicine at Johns Hopkins University of
became a stellar event – one that will live on for Medicine, Baltimore Maryland then presented
many years to come. “Breathing and Sleep: What’s the Problem?
What Tests Are Needed?”
The information presented is truly state-of-the-
art. The neurological details of polio’s damage Part 4
to the breathing muscles and the methods of
testing and administering treatment are
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remarkably accurate and complete. The hands-Assisted Breathing for PPS on experience of Louis Boytano cannot be
topped. folks: Some New Thoughts
Hope Thoughts, research, and ideas by Rick Van Der Linden 8/20/09 The word has been frivolously tossed about these days. Used in an obscure, somewhat
The Pressure is on meaningless way, but this symposium does offer
The latest innovation in bilevel breathing As one who has experienced PPS breathing support is the assured volume bilevel machine.
problems for nearly 20 years, read every book A few major manufacturers have jumped on the on the subject, counseled hundreds of PPS folks, bandwagon in recent years replacing the and lived the bilevel ST experience for nearly a manually titrated (pressures and times set by a decade, one could say I know a thing or two technician according to doctors prescription) about it. Several people asked if I learned with the automatic titrating machines. anything new at the symposium. My answer: I Simplified, the technician sets the machine to learned that there are professional people out deliver a prescribed volume of air per minute there who really know and understand PPS prescribed by the doctor, presumably based on breathing problems. body size or other chart derived factors.
Because the machine adjusts to the users In this article, I didn’t try to include all the volume requirements, it’s easier for the details of the symposium, just an overview and doctor/technician to find a setting the patient opinion as to its importance. You can see it in its can tolerate. The result is a higher rate of entirety at http://poliotoday.org. Some folks patient compliance but is it the best-long term
have watched it 10 times and still learn from it. treatment? If your doctor isn’t as well informed as those you see on the videos, learn all you can, and The Positive teach your doctor.
First-time users of the new generation If you don’t have a computer, visit a friend who (automatic) machine report success within the has one, go to the library and use their computer, first day or two whereas the previous or see the poliotoday.org videos at your local generation of machines were too often initially PPS meeting. There’s no substitute for the real set wrong, so success was hit and miss – mostly
thing. miss. A high percentage of people gave up
because of wrong settings. That doesn’t seem to Also: Janet Renison and Baldwin Keenan of the happen with the new, automatic machine. Orange County PPS Support Group have been working on an excellent multi-part article. You The Negative can contact me for a copy. If I get enough requests, I’ll reprint it in future issues of the PPS However, those of us with older, manually Manager. (Also available at ppsupportoc.org) adjusted machines have an added advantage,
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assuming we (or our technical assistant) are wise enough to know what we need and are able What is NOT a volume vent? A breathing to set the inspiratory pressure (IPAP) to respond support machine without a timed function such to our minimum requirement. The timed as a CPAP or a Bilevel S cannot be considered functions are then used to control volume. This a volume vent. allows us to get no more muscle support than we CPAP = one constant pressure. absolutely need. The end result, over time, is Bilevel S (sometimes called a BiPAP) operates that we are less likely to suffer atrophy of the at two pressures – high for inhaling, low for
breathing muscles – a loss that would force us to exhaling. The pressure change is triggered “graduate” to a trache (vent support delivered spontaneously (that’s what the “S” stands for) through a tube surgically inserted in the neck) by the user’s input. Try to breathe in and it and/or full time volume vent perhaps years switches to high, etc. before it may otherwise have been necessary - if at all. Realistically, the bilevel ST machine can be
considered a volume vent because of its timed In other words: The new machine is aimed at feature. It’s a combination of spontaneous and delivering a set volume (assured volume) of air timed (ST) functions much the same as a per minute which means it’s a “volume first, traditional volume vent. There is a difference, pressure second” approach. This is done by however. setting a prescribed volume of air per minute. Then the machine automatically adjusts to the In a recent study comparing bilevel ST to the patient’s requirements by adjusting the IPAP volume vent approach, volume preset is not and (perhaps) timed functions. The IPAP is always better than pressure preset. what actually supports (braces) our weak (http://www.labmeeting.com/paper/23493435/libreathing muscles. If we have careful control of en-2000-comparison-of-bilevel-positive-the IPAP number, we have the best chance of airway-pressure-and-volume-ventilation-via-conserving our muscles over time. The “volume nasal-or-facial-masks-in-patients-with-severe-first” method of setting up the machine gives stable-copd) that control to the machine.
In the study, people with severe COPD
experienced (and tests supported) a better sense Volume vent vs. bilevel
There is some confusion over what, exactly, is a of muscle rest and blood gas exchange with the volume vent. Traditionally, a volume vent was a bilevel. For comparison to those of us with PPS special ventilator used in cases of total vent it should be noted that muscle rest was a key dependency, such as paralysis, coma, etc. The factor in the study. People with COPD have to doctor could set the machine to deliver a work harder to breathe, so there is a reasonable particular volume of air in and out every minute, comparison to the muscle weakness of PPS. and check blood oxygen level to confirm the correct settings. Note the use of the words So what makes a volume vent worth four to volume and time. To create the conditions for five times the cost? Generally, they’re designed volume over a period of time, the machine must for full time use and 100% dependency, so have control of not only air pressure, but also they’re, theoretically, better built. Some have a the time periods that pressure is on and off. built in back-up battery, bells, and whistles …
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To further complicate the issue, most volume In reality, I’m 100% dependent, because vents have the option of “pressure first” setting without it I would have been completely dead making them more like the bilevel ST machine ten years ago. when that setting is selected. So, it’s not just a matter of what machine you have, it’s also a As with my legs, I’ve learned to “conserve to matter of how it is set. Obviously, in the above preserve” as cautioned by Dr. Jacqueline Perry. test, a standard bilevel ST (not a newer volume So, metering the IPAP only as needed (as assured bilevel) was compared to a volume vent previously discussed) allows me to preserve my using “volume first” settings. breathing muscles. I may remain at 35% for the rest of my life or I may lose the normal 1 or 2 It should be noted here that in the Salk percent per year. presentation, Louis Boytano explained that, since the new AV machine is also equipped to At least I know I’m doing the best I can do for be set as a CPAP, Bilevel S, or Bilevel ST, he the long run. sometimes chooses to start a patient on the AV setting then, after an adjustment period, reset the Ain’t no good if you don’t use it
machine to ST mode at the average settings indicated by the previous AV experience. This Another issue involving the use of assistive sounds like the perfect procedure. devices has to do with Post Traumatic Stress
Disorder or PTSD. [see PPS Manager, July
Dependency Basically, a traumatic event (a near death experience, for example) might cause the You might wonder, how dependant does one victim to suppress the memory or, the other need to be to require a trache and/or a volume extreme, be tormented by the unforgettable vent? event. In either case, the bad memory becomes a serious problem when it causes a person to I use a bilevel ST overnight and at naptime. make bad decisions or disrupts the person’s life. Through most of my life, my favorite sleep time per day has been about 9 hours. Now, my In the case of post polio, for example, a person average time on machine is about 9-1/2 hours might have a fear of ventilators because of his per day. Seems pretty normal. My IPAP or her childhood experience with the iron lung. (inspiratory pressure – a good gage of how Thirty or forty years later, when PPS pops up, much assistance the machine is providing my this fear may prevent the use of a simple life breathing muscles) setting is 13.6. If I were on a saving bilevel ST. volume vent 24 hours a day, set at 36 (or whatever pressure my muscle-less chest In fact, it’s not uncommon within the PPS required), I would be 100% dependent. I’m community to see people refuse to use braces around 1/3 pressure dependent for 40% of the and/or power chairs, taking pain meds instead, day. I guess that works out to roughly 35% resulting in early muscle loss and joint dependent. disintegration. Often, this failure to make the
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right decision is based on doctor advice, but fear
of returning to the assistive devices of the past –
the helplessness of that polio-stricken child – is San Diego all to often a factor.
Post-Polio Support Group November 14, 2009 and December 12, In my case, I resisted braces and I put off bilevel 2009 Meeting Reports assistance for years after I knew it was the right
thing to do. I called it hard-headedness. I’m
Notes by: Gladys Swensrud convinced I’d be better off today if I hadn’t
waited until my muscles got “bad enough.”
Our 2009 Christmas party was a large gathering Help is on the way of friends, old and new. The yearly holiday In this decade, researchers have developed a meeting provides us with a unique time to just new understanding of how memories are formed, sit and talk, share friendships and chat about stored, and retrieved. Studies have shown that any topic we wish. Along with a wonderful memories are not hardwired into our brains. potluck spread, we had the musical They’re changed every time we retrieve them. accompaniment of Mike Blazick’s New drugs in combination with simple therapy extraordinary talent on the violin. And our may soon be available. These new drugs have White Elephant gift exchange didn’t disappoint been shown in tests to reduce horrible memories in the entertainment department either…be sure to merely uncomfortable memories. One of the to ask Steve Goldman about the beautiful stumbling blocks to patient compliance will enamel bracelet someone “stole” from him at have fallen away. the last minute. We are sure he is still in tears
over that one ?! All it takes is a little understanding and a little knowledge, and the desire for a better life -- Our November meeting had a sobering side as unreasonable fears can be overcome. we viewed the documentary The Final Inch.
For anyone who has not yet seen it, it is a must
see! The 38-minute film documents the
continuing quest to eradicate polio throughout
the world. From a total of 350,000 cases of Sooo
polio reported worldwide in 1988, the numbers In conclusion, the new volume assured
declined to approximately 2,000 in 2007, which machines are great for patient compliance but
was detected mostly in children under the age may not be the best long-term solution. And, if
of 3 in the countries of India, Nigeria, you’re not using assistive devices because you
Afghanistan and Pakistan. To complete the “don’t want to think about it” though a little
eradication process, the film details the need to voice way down deep inside tells you otherwise,
find and immunize every child. a simple solution is on the way. You just need to
reach out and grab it.
A portion of the film focuses on the difficulty
of convincing community leaders within the We’re known for tenacity. Let’s all work to
deepest slums of those nations that they will be maintain that stereotype.
saving lives and quality of life for their citizens
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by allowing their children to be immunized. It No report filed. Contact Vi or Kay chronicles how Muslim leaders, so distrustful of for information. America, must be convinced it is not a plot to
undermine their country by allowing mass immunization. ___________Next meetings:____________
January 13 Anyone interested in purchasing The Final Inch
should be able order it from Amazon.com for
February 10 $7.50 a DVD. It comes within a couple of days,
___________________________________ and would be well worth planning a group
Regular meetings: Second Wednesday of every meeting around. Our talkative group was left
month. Location varies. speechless after watching it. Part of the quiet
For information contact Vi Macias @ (760) was realizing that people throughout the world
949-6775 or Kay Mears @ (760) 243-6200 or are still suffering the ravages of polio…and the
Im-A@Blessing.com other part was reliving our own experiences
through the vivid images the film portrayed.
Escondido North County
Post Polio Support Group
___The next San Diego meetings:___
____The next meeting:____
January 9 February 9
____________________________ ____________________________ Regular meetings are at 10 AM on the second Regular meetings on the second Tuesday of Saturday of odd numbered months at: Kaiser even # months from 12:30 to 3:00 at Joslyn Permanente 4647 Zion Avenue San Diego Senior Center, Dorothy Boeger building, 728 N Classroom #2 Broadway, Escondido For more info. call For more information call Rick Kneeshaw Marilyn Loba (760) 745-2787 or email 858-566-4016 or firstname.lastname@example.org email@example.com Or go to http://polio.home.mindspring.com
POLIO SURVIVORS (HAPS) COACHELLA VALLEY POST-POLIO SUPPORT GROUP In November, we had our normal meeting -
PPS talk and friendship. The Low Desert is looking for new leadership. If you would like to get involved, contact me, Our Christmas party was fun and warm thanks Rick, at the PPS Manager. (951) 926-5492 to the swell facilities at Valley Wide Recreation.
About twenty polio folks and their family
members exchanged gifts and food, and
listened to some live music during the two-hour
Victorville PPS Group get-together.
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For the January meeting, you can expect the
usual sharing with some whining about the cold
weather thrown in for good measure. Okay, I’ll
Networking is a good thing. We form a do the whining to save you the trouble.
“Human Web.” According to Wikipedia, “six
degrees of separation” refers to the idea that No Free Lunch? everyone is, at most, six steps away from any
other person on Earth.
February 16, 2010, 11 AM Sun West Village When my friend Barb, whom I know by Getting Your House In Order: A presentation networking with my high school alumni by Ron Eitzen association, emailed me to ask about a possible Included: Veteran's benefits, Social Security connection between PPS and ALS, I benefits, wills, trusts and some information on immediately connected her with Gladys Riverside National Cemetery. There should be Swensrud. Now the two have a wonderful plenty of time to allow for Q and A. dialog going on. It came about by a sad circumstance, though. Barb’s friend, a polio Lunch will be provided (chicken, potatoes,
survivor, was diagnosed recently with ALS, and gravy and all the trimmings.) free of charge.
Everybody is welcome, so bring friends and
Barb (whose husband has ALS) sent me a great family.
article by Cheryl Carter New about the kind of
personality and attitude found among people RSVP required if you want to eat: (951) 926-
who survive ALS beyond the initial three- to 5492 or email firstname.lastname@example.org
five-year sentence. As I read Cheryl’s article, I
felt there are similarities and differences in how
we respond. The majority of polio survivors ____Our next are not faced with a life-threatening disease.
Additionally, our condition is not a sudden new HAPS meetings are:____
thing, out of the blue; we fought the polio battle
before; we “overcame” once before. Also, January 19
doctors haven’t been willing to acknowledge
there is such a thing as PPS – it is sometimes February 16
difficult not to be in denial ourselves! Anyway, Getting Your House in Order here are some subheadings from Cheryl’s piece.
See how they apply to you, or where you might
adopt a new approach! Regular Hemet meetings are at 11 AM to 1 PM on the
http://www.alsindependence.com/The_Survivorthird TUESDAY of every month at: Sun West, 1001 N.
s.htm Lyon, Hemet. For more info call RickVDL (951) 926-
5492 or Bunny Smith (951) 766-7118 ? Survivors draw emotional stability and
mental strength from outside themselves. –
Riverside PPS Group Our faith in God, our friendships.
? Survivors are universally stubborn December 19, 2009 Holiday Party skeptics when it comes to the “facts” about
ALS. (With PPS, we find it’s the doctors
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who are stubborn skeptics. We must good to see Edward again (he was also at the
network to get the facts to each other, Salk Symposium) with his daughter, Nicole,
because improving quality of life depends who is majoring in Neurosciences, and is
on our applying what is known!) planning to take the MCAT soon and apply to
medical school in either 2010 or 2011. He is ? Survivors will try almost anything. Uh-oh.
very blessed to have such a sweet, intelligent We on the other hand tend to avoid trying
daughter! those assistive devices, for fear of the
“handicapped” label – but we ought to be
Some communicated by mail and email their more proactive!
best wishes for the holidays, and we count them ? Survivors are problem solvers. Take for
as having been with us in spirit, if not in body. example Rick Van Der Linden teaching us
We didn’t get cards signed to you, but please about using bi-level breathing; and Gladys
know we appreciate and love you. Get well Swensrud, enlisting Kaiser to the cause, not
soon, Dale G. and Mary B. Hang in there, only in San Diego, but working on getting it
Yolanda and Eddie, caring for elderly parents. state-wide.
Your labors of love count. ? Survivors communicate. – Post Polio
Support Groups, Newsletters, Emails,
PolioToday.org! Reported by Judy Mahoney ? Survivors stay mentally active. “Type A” people!
? Survivors have somebody they love and
who loves them. ___The next Riverside PPSG meeting:___
? Survivors are relentlessly positive. (Those
who aren’t are not very popular!) February 20 ? Survivors allow people to help them. Hint, __________________________________
hint. ? Survivors help others. Riverside PPSG Meetings: third Saturday of ? Survivors have a wicked sense of humor even # months at 11 AM. - at the home of
and never lose it. Bryan & Judy Mahoney, 3465 Ramona Drive,
Riverside CA. Lunch provided. Our holiday party was quieter this year than in For more info. contact: Judy past years, as several of our regulars were PPSRiverside@aol.com (951)788-9310
unable to attend due to illnesses or other circumstances. Did I say “quieter”? We could
barely hear Rick and Sandy singing to us those Big Bear PPS Group great songs over the din of our many For information contact Marsha Hart at (909) conversations. We are a gabby group. (It’s 878-3092 or Email email@example.com great!) Gladys came up from San Diego and
added to our joy. We celebrated the value in Polio Survivors Plus
getting to know each person’s unique beauty of soul. Regina outdid herself with lovely
PSP Report handcrafted gifts and greeting cards. It was
Polio Survivors Plus has a meeting at 1:30p on
Wednesday, January 20, 2010 in Clubhouse 3