INFORMATION FROM POST-POLIO HEALTH INTERNATIONAL, SAINT LOUIS, MISSOURI, USA

Remembering The Polio CrusadeReji Mathew, PhD, New York University, rm150@nyu.edu

continued, page 3

It is not often that we get to see an intricate behind-the-scenesaccount of the human drama fueling a medical breakthrough. The Polio Crusade, a documentary film written, produced and

directed by Sara Colt for PBS’s “American Experience,” based in part on the Pulitzer prize-winning book Polio: An American Story byDavid Oshinksy tells of the tireless efforts of researchers, advocatesand fundraisers to find a vaccine for poliomyelitis.

To further elucidate the enduring les-sons of The Polio Crusade for our mod-ern times, David Oshinsky, Sara Colt,David Rose (archivist for the March of Dimes) and Larry Becker (boardmember of PHI) share their insights.

A Personal CrusadeWhat first emerges in screening ThePolio Crusade is that this crusade wasa strikingly personal one. “The greatchallenge was to take people to theplace of fear and contagion; that thepolio epidemic changed the way peoplelived their lives at the time,” Colt stated.

The sense of the personal became evenmore dramatic when polio, consideredprimarily a childhood illness, affecteda most unlikely adult, Franklin DelanoRoosevelt, at age 39 in the summer of1921. FDR transformed his personalpain into an unwavering passion toserve the needs of polio patients.

As the film illustrates, the personalnature of the Crusade was deepenedby the entrance of Basil O’Connor, FDR’sclose friend and law partner. BasilO’Connor was not a self-chosen cru-sader, but his fierce loyalty to FDRfueled him to take the crusade to thenext level. In 1938, O’Connor wasappointed the first president of the

National Foundation for InfantileParalysis, founded by FDR, knowntoday as the March of Dimes.

The Polio Vaccine: Building-Block ScienceIn the book, Oshinsky documents thatthe achievement of the polio vaccine,despite focus on its central celebrityfigure Jonas Salk, is the result ofnumerous building-block steps of scien-tists that came before Salk. Theseinclude the research team of Enders,Weller and Robbins (1948); they re-ceived the Nobel Prize in 1954. Yetthe fierce debate between Salk, whofavored the killed-virus vaccine, andSabin, who advocated for a live-virusvaccine, remains the central narrativethread of the race for a vaccine. Salk,who was favored by Basil O’Connor,was granted the go-ahead for a vaccinefield trial, which in 1954 was admin-istered to over two million children in 44 states.

The road to a vaccine for polio was notwithout its controversies. Previous tothe trials of 1954, Salk tested his vac-cine on children in institutions for the“crippled” and the “feebleminded.”The vaccine was tested at a time whenthere was no such thing as informed

Polio survivor Reji Mathewattended the premierescreening of The PolioCrusade in New York, result-ing in an analysis of the filmbased on interviews with theprincipals. Here is an abbre-viated version. To savor thelonger version with addition-al insightful comments, goto PHI’s website, www.post-polio.org/edu/pphnews/PPH25-2sp09polcrusex.pdf.Members may contact PHIfor a copy.

2 POST-POLIO HEALTH Spring 2009 Vol. 25, No. 2 www.post-polio.org

PHI’s mission is to enhance the livesand independence of polio survivors

and home mechanical ventilatorusers through education, advocacy,

research and networking.

Post-Polio HealthSpring 2009, Vol. 25, No. 2

ISSN 1066-5331

Editor: Joan L. Headley, MS editor@post-polio.org

Designer: Sheryl R. Rudywebmaster@post-polio.org

2009 Post-Polio Health International (PHI).Permission to reprint must be obtained from

Post-Polio Health International (PHI).

How to contact PHI Post-PPolio HHealth IInternational ((PHI)Including International Ventilator Users Network

4207 Lindell Blvd., #110Saint Louis, MO 63108-2930 USA314-534-0475, 314-534-5070 fax

info@post-polio.orgwww.post-ppolio.org

To be sure you receive email updatesfrom PHI, set your spam filters to allow

messages from info@post-polio.org.

Worthy of Note

Post-Polio Health InternationalIncluding International Ventilator Users Network

NeedyMeds (www.needymeds.org) has the tagline of “find helpwith the cost of medicine.” Visit the site to find patient assis-tance programs, drug coupons and extensive listings of brandname and generic drugs. The newest project is a “DiscountDrug Card” that is good at approximately 50,000 participatingpharmacies, including CVS, Rite Aid and Walgreens. Pleasenote: This card is not a prescription insurance program — it’s a drug discount card. The card is not valid for those who useMedicaid or Medicare to pay for their medications. There maybe no savings for certain drugs, including many inexpensivegenerics. Go to www.needymeds.org/drugcard to download thecard. kkk The National Institute on Aging suggests you willwant to ask these questions about each new medicine. What isthe name of the medicine, and why am I taking it? What medi-cal condition does this medicine treat? How many times a dayand how much medicine should I take? For how long? Howlong will it take to work? What should I do if I miss a dose? Arethere any side effects I should know about? When should I callyou if I am having side effects? Can I safely mix this medicinewith the remedies, vitamins and OTC drugs I am taking? Eachtime you visit: Be sure to ask your doctor if you still need to beon all your medicines. kkk According to the FDA, name con-fusion is among the most common causes of drug-related errors.For example, errors have occurred in prescribing the arthritisdrug Celebrex, the anticonvulsant Cerebyx, and the antidepres-sant Celexa. kkk While it is not a blanket recommendationfor all polio survivors, some survivors who have considerablemuscle atrophy, and consequently weigh less, take a lesserdose of some medications than normally prescribed. Only dothis in consultation with your physician.

192 is the total number of reported cases of acute polio worldwide in 2009, as of April 1, 2009, according to www.polioeradication.org.

April 8, 2009 from the IFRC: The International Federation of RedCross and Red Crescent Societies is launching an emergencyappeal for 2.4 million Swiss francs (US $2.1 million, EUR 1.6million) to support Red Cross and Red Crescent Societies from14 countries in Africa to respond to wild poliovirus outbreaksacross the continent. There are 15 countries that have beenaffected by a recent outbreak (Angola, Benin, Burkina Faso,Central African Republic, Chad, Democratic Republic of Congo,Côte d’Ivoire, Ethiopia, Ghana, Kenya, Mali, Niger, Togo, Sudanand Uganda). THE IFRC campaigns will be operated by theMinistries of Health, with support from the Global PolioEradication Initiative, spearheaded by the World HealthOrganization (WHO), Rotary International, the US Centers forDisease Control and Prevention (CDC), and UNICEF.

Joan L. Headley, Executive Director, PHI

www.post-polio.org POST-POLIO HEALTH Spring 2009 Vol. 25, No. 2 3

consent as we know it today. Anothersetback was the haste to reproducethe vaccine. The National Foundationcontracted with several drug compa-nies, notably Cutter Pharmaceuticals,to manufacture the vaccine. Whatresulted was the distribution of a con-taminated batch of the polio vaccinethat led to several cases of paralysisand death. “It was a time of risk andreward outweighing the risk of get-ting harmed,” Oshinsky stated.

The Role of the March of DimesThe Polio Crusade also deserves a sub-title, The March of Dimes Crusade, asit is also a remarkable case study ofhow a nonprofit organization stood atthe forefront, organizing a multi-leveleffort to conquer the disease, morespecifically, the cultural beginnings of public philanthropy.

Additionally, as portrayed in the film,O’Connor’s approach was to seek dona-tions from the public rather than fromestablished philanthropists, asking everyAmerican to contribute what smallchange they could, “even as small asa dime.” Hundreds of nameless, face-less Americans contributed to the cause.“The people who contributed felt it wastheir vaccine; they were invested in theoutcome,” Colt stated. David Rose alsonotes the pioneering strategies of theMarch of Dimes – engaging celebrities,broadcasting public health announce-ments, and hosting fundraising events– are now commonplace in today’shealth advocacy culture.

Both the book and the film do fall shortin not fully exploring the issue of race,as the polio crusade took place in thecontext of a segregated America. Marchof Dimes history reveals forgottenheroes such as Charles Bynum, a civilrights activist who served as the

Director of Interracial Relations forthe March of Dimes, worked tirelesslyon outreach and fundraising initia-tives to offer equal representation incare for African-Americans.

Polio Pioneers and Polio SurvivorsSarah Colt tells two parallel stories ofpolio. First, she depicts the polio vac-cine pioneers, with endearing footageof children wincing, smiling and brav-ing first doses of the polio vaccine. Shethen provides an account of the chil-dren and adults who contracted polio.

For example, Colt tells the story ofAnnie Crockett-Stark’s brother, whocontracted polio in Wytheville, Virginia.Crockett-Stark described in compellingdetail, how her parents took everythingof her brother’s belongings – his entireidentity – and “burned it in the frontlawn.” Colt’s efforts to tell these storiesraise awareness of the countless Ameri-can families that were shaped for alifetime by the lasting effects of polio.

The personal story of Larry Becker is a central one. “Remembering poliohistory is the first necessary step inre-establishing our social context. Un-less people remember, it’s not goingto be easy to enlist them in the after-math – post-polio,” Becker stated.

Polio survivors may have a myriad of feelings about this aspect of poliohistory, but the narrative of The PolioCrusade is not simply a story aboutpolio. It is a story of how scientificadvances reach people. Millions ofpeople in the United States are waitingfor cures, interventions and advancesfrom science. The lingering lesson ofThe Polio Crusade is that for any otherdisease community to achieve a simi-lar outcome, they will require no less than the same charismatic, inte-grated effort. s

Remembering The Polio Crusadecontinued from page 1

Reji Mathew, PhD, is a disability advocate and freelance writer. She is also a psychotherapist and clinical instructor at New York University.See her monthly column in Advance for Occupational Therapy(http://occupational-therapy.advanceweb.com/Article/Mental-Health-Center.aspx)exploring the psychological aspects of recovery and rehabilitation.

ResourcesPolio: An American Story, David M. OshinskyImages of America, March of Dimes, David W. RoseThe Polio Crusade,“TheAmerican Experience,” PBS

4 POST-POLIO HEALTH Spring 2009 Vol. 25, No. 2 www.post-polio.org

Question: I am 69 and had polio inmy right foot when I was 20 monthsold. I have had tendon transplants, heelcord lengthening surgery, and some toesfused. I wore a short leg brace followingsurgeries when I was eight years old atWarm Springs in Georgia. I had fivechildren and have always been active,e.g., marched in the band, rode horse-back, biked, skated and swam, andusually did it better and faster than theothers. (I was still “different” though.)

I have had rheumatoid arthritis sinceage 30 and now have osteoarthritis. Inoticed at age 40 that I was getting muchweaker and more unstable on my feet.My right calf is much smaller than myleft one. All the tricks I used to hide mylimp failed me. Since a total hip replace-ment, I tire much more easily and walkwith a cane. (I have a 1-7/16 inch dif-ference in leg length.) I also go to a painclinic for spinal stenosis. Should I walkas much as possible (30 minutes or soa day) or “save my strength,” and praytell, save it for what? NAME WITHHELD

A: Thank you for sharing your story.It illustrates the challenges faced bypeople with moderately severe polio-related residual weakness who haveled surprisingly active lives. You, ashave many others, faced decliningstrength already in middle age. Younext confronted age-related and, pos-sibly, overuse-related complications,such as hip arthritis. Rheumatoid arth-ritis and spinal stenosis would be con-sidered unrelated medical conditions(also known as “co-morbid medicalconditions”) that complicate and com-pound your post-polio condition. Iwould advise you stay as active asyou can while not aggravating yourpain problems. You may wish to con-sider water exercise workouts to

maintain fitness and vitality, ratherthan walk “as much as possible.”

I identify with your rhetorical questionof “save my strength, and pray tell, forwhat?” You should use what strengthyou still have to fulfill your life’s pri-orities requiring motor function as bestyou can. You should not obsess aboutsaving your energy for unknownfuture needs. Please, just don’t pushyourself to such a degree that youhasten the day when you can’t evenwalk at all or do transfers by yourself.Post-polio life requires constant rebal-ancing, like walking a tightrope!

Question: I am a male age 60 whocontracted polio at age six months andGuillain-Barré syndrome at age 40. Iwas diagnosed with post-polio syndromeat age 55. Four weeks ago I had testos-terone pellets implanted when I foundout I had a major testosterone deficien-cy. What happened four weeks later, as reported to my naturopathic doctorwho prescribed it, was simply amazing.

My legs, hips, hands, arms, chest andstomach muscles are beginning to looklike they did as a younger man when Iwas body building. My balance is 100%changed. I avoided hugging people be-cause it knocked me off balance. I nor-mally could not step off a curb due toweakness in my good leg. Now I just do it! I am walking upright instead ofhunched over for fear of falling. I feel“solid” again.

I have zero fatigue. My joint pain, otherthan the left knee, is gone. My right

Frederick M. Maynard, MD

www.post-polio.org POST-POLIO HEALTH Spring 2009 Vol. 25, No. 2 5

ankle is a bit sore in the morning, andit takes a step or two to warm it up. Of course, that is because I am walkingaround now. I’ve lost weight, and moreimportantly, lost inches off my waist. Iam able to sleep 6-7 hours without medi-cation. My mind is clearing; my enthu-siasm is off the charts. I own and runseveral corporations and had pretty muchgiven up on the future of any normalactivity. I don’t have to fake optimism.

I felt compelled to write to you anddescribe the results in hope that youmay pass them along. I have no logicalanswer other than the testosteronereplacement. I have been confounded,and somewhat discouraged, by the lackof response from my mail to physiciansand researchers around the world thatexplained how my post-polio syndromesymptoms have disappeared since I hadthe testosterone pellets implanted. Whilemy results may be too good to be true,they are true nonetheless. Can you ex-plain the lack of response? MR. HALSETH

A: Your story nicely illustrates howpost-polio symptoms can be confusedwith other diseases. Given the dra-matic reversal of your muscle atrophy,and the complete resolution of othersymptoms within one month of treat-ment with testosterone, I have nodoubt the primary diagnosis was lowtestosterone, not post-polio syndrome.

In answer to your second questionabout the lack of response from doc-tors and researchers, it is likely a resultof professional skepticism. One person’sstory of dramatic improvement attrib-uted to a “treatment” does not provethat the “treatment” was the cause of the improvement, as opposed toanother unknown coincidental cause,or even a placebo effect. Only a well-designed study can prove this, and all

doctors and researchers are literallytrained to be skeptical about claims of improvement. Therefore, they arerarely impressed by or responsive toundocumented miracle stories.

Question: Often we polio survivorshave very few options that are helpfulin understanding our circumstances andwhat direction to take. Thank you forbeing available to provide this importantservice. Here is my question in threeparts. When I read The Polio Paradoxby Richard L. Bruno, PhD, he assuredus that post-polio syndrome (PPS) isnot life threatening. Is this still a validstatement? Is there any evidence to the contrary? Secondly, will the effectsintensify and cause weakness to thelevel that one experienced during acutepolio? Also, does PPS affect the brain’sability to function normally in speech,sight or thought processes (throughstress or brain lesions)? MR. MALIGIA

A: There is no evidence that PPS is“directly” life threatening. PPS symp-toms can become sufficiently disablingto “indirectly” shorten one’s life, suchas by imposing a fearfully sedentarylifestyle that leads to hypertension,obesity, high cholesterol and heart dis-ease. If severe post-polio breathing andswallowing problems develop and arenot treated appropriately, critical lifefunctions can also be put in jeopardy.

A clear answer to your second answeris more difficult. Theoretically, at least,one could again become as weak asone was at the time of initial recoveryfrom the acute polio infection. In myclinical experience of 25 years, thisnever happens. While severe worseningmay happen TO a post-polio person, it does not result FROM post-poliosyndrome as defined by a consensus

If you have a question for Dr. Maynard, please send it to info@post-polio.org,with “Ask Dr. Maynard” in the memo line. Select questions will be publishedin future issues, while others will be posted on www.post-polio.org.

continued, page 10

6 POST-POLIO HEALTH Spring 2009 Vol. 25, No. 2 www.post-polio.org

Spring is here! Spring is traditionally the season of renewal,inviting us to bear witness to the cycles of nature. Communingwith nature is an antidote for depression and anxiety, a break

from the boredom of winter‘s confinement and isolation from thewider world … that is, for those of us who can access these benefits.

Over our 43 years of marriage and my steadily increasing limitations,we’ve moved a number of times. With each move, I became increas-ingly aware of how to bring the world and nature to me, throughmy personal space in the great outdoors – The Garden.

We’ve done so with the help of UniversalDesign. Its goal is to create access inthe broadest sense, to the greatestnumber of people – of every age, stageof life, and ability – in a manner thatis safe, efficient, convenient and re-quires minimum physical effort. As itapplies to the garden, simply put, itmeans creating access to the outdoors,directly, or indirectly from the home’sinterior via the glass openings. It meansaccess through all of our senses, in-cluding touch, taste and smell.

We came up with three overarchingobjectives, giving them easier toremember catchphrases: OUTSIDEIN; 360+ FIVE; and MAKE IT YOURS.

OUTSIDE IN: Bringing the outside intothe home’s inside means making theoutside a part of our everyday lives,even when we can’t get outside. Onthe other side of every window and

doorway of the house, wecan create or encouragesome sort of visual interestthat connects us with thefauna and flora.

Why else would we plantseveral butterfly bushes?You can add interest withbirdbaths and feeders spe-cific for various birds, likehummingbirds, a true joy

to observe. My father used to put nutson the window sills of his office so hecould observe the squirrels, “nose tonose” he’d say, as they worked ontheir tasty treats.

Another part of this objective is tomake ingress/egress easier, throughsuch things as making existing thresh-olds level, the use of easy-open orautomatic push-button doors, andthrough use of proper hardware, suchas lever-type handles. We increasedaccess by making structural changesto doors, converting one to a Dutch-door and another to a glass door.

We also added new glass doorways,where one had been a window, en-hancing visual access. We eliminatedthe bumpy threshold of a sliding doorto the patio by changing it to glass-paned double doors. Flooding theinterior with light has the advantageof making it brighter and more cheer-ful. In sum, to bring the outside in,work from the inside out ... goingthrough the house and planning theview from each window and door.

360+ FIVE refers to the 360 degreesaround the property, and adding ‘plusfive’ to 360 = 365 days of the year. It is another way of saying that theentire property should be part of The Garden, and it should have year-

The GardenIncorporating the Principles of Universal DesignSusan Miller, San Diego, California, susanrsf@sbcglobal.net

For more advice fromSusan and photographicexamples of universaldesign in gardening, visitwww.post-polio.org/edu/pphnews/PPH25-2garden.pdf. Members may contact PHI for a copy.

www.post-polio.org POST-POLIO HEALTH Spring 2009 Vol. 25, No. 2 7

round interest. In selecting plants, itis important to consider their appear-ance in each season, not just theblooming one. Are there berries orfruit or fall color? After the leavesdrop, are there interesting branchingstructures (curly willow) or are thebranches themselves colorful, (red-twig dogwood)?

To utilize the entire property, it’s nec-essary to “visually improve” the lessattractive things, such as garbage cansand maintenance equipment and sup-plies. To enclose the garbage, we in-stalled a three-sided tall picket fencealong the garage, and planted bushesand vines along the front and sides tomake the fence less conspicuous.

MAKE IT YOURS: Simply put, personal-ize your property. Let your imaginationcome alive and make it uniquely yours,just as you do inside. As you examineyour yard, think of what feelings youwant to evoke. Do you want to mem-orialize someone or something? Isthere a piece of sculpture or mementothat someone gave you? A specialflower or plant that reminds you of asignificant person or place? A favoritefragrance – jasmine, lily, gardenia?What about a little vegetable/herbgarden – either in pots or in ground?

Container gardens are perhaps themost versatile and convenient forpeople with disabilities, as they offerendless variety in terms of size, height,grouping and location. They can beeasily changed or moved without dis-turbing anything else in the landscapethat’s dependent on it to fill somepurpose. In fact, they can be used toadd “landscaping” to an area that hasno soil, such as we did along a longbarren wall on our patio that wasn’tdeep enough for seating. We grouped

a bunch of oversized pots, putting asmall tree in one. That wall is nowone of the most interesting, indeed,spectacular spots on our patio.

In constructing container gardens,select plants with a variety of texturesand complementary colors. Succu-lents have proven to bereal winners, and can becombined with bromeliads,cacti and deciduousplants, including smalltrees. Kalanchoes are oneof my favorites for con-tainer arrangements withtheir waxy, thick leavesand long-lasting blooms.Remember, these plants all must havethe same general requirements forlight, water and nutrition!

PLANT SELECTION and PLACEMENT:Given our limitations, it’s important toavoid plants that are temperamentalor require too much maintenance.With thousands to choose from, andso many resources available to helpnavigate through them, finding theright ones is pretty straightforward.And there are maintenance techniquesthat can make them easier as well.

One way to start is by choosing plantshighly recommended by professionalsin your area; these will get you provenwinners. However, if you’d like yourgarden to be unique, try some unusualor rare species. Or be adventurous bytrying plants from other countries withsimilar climates. You can easily findthem on the various websites.

Indeed, we have plants from everycontinent on the globe, except the twopolar extremes, including the Medi-terranean, South Africa, Australia,

continued, page 8

“The Principles of Universal Design and their guidelines were developed by a working groupof architects, product designers, engineers, and environmental design researchers as part ofa project coordinated by the Center for Universal Design at North Carolina State University.The seven principles that describe characteristics that make designs universally usable are:Equitable Use; Flexibility in Use; Simple and Intuitive Use; Perceptible Information; Tolerancefor Error; Low Physical Effort; Size and Space for Approach and Use.”

8 POST-POLIO HEALTH Spring 2009 Vol. 25, No. 2 www.post-polio.org

THE GARDEN: Incorporating the Principles of Universal Designcontinued from page 7

England, Portugal, Mexico, Brazil,Spain, Indonesia, Japan, Bolivia, etc.

Regardless of the kinds of plants youchoose, it makes sense to select plants

that have advantages suchas low water needs, or aredrought tolerant, insect or disease resistant. (Forhand watering, as in con-tainers, make sure thewater source is handy; ifpossible, install multiplewater spigots around thehouse perimeter.)

Avoid plants that need lots of atten-tion – trimming or pruning, deadheading, staking – or those that areunruly or messy due to their droppingleaves or sap. Definitely avoid plantslabeled as aggressive or invasive, plantsthat take over the garden, crowdingout all the others, and are impossibleto kill!

While creating our own gardensrequires a good deal of research and

planning up front, we found that mak-ing one overall “Grand Plan” allowedus to bite off one piece at a time, asbudget and time allowed. Good plan-ning up front will help pay for itselfby eliminating costly mistakes, keep-ing us focused on our goals to avoidimpulsive temptations.

Remember this: Our property is ourown personal stake in the great out-doors, a worthy investment to planand create in such a way to bring joy,satisfaction and inspiration through-out the year and years; it will be anenduring contribution to our commu-nities, serving as the legacy we leavefor others, even beyond our lifetimes.

FINAL THOUGHTSThe home that people create todaywill survive them by many years.There’s no ADA or other federal man-date to require built-in flexibility orvisitability. (See box.)

The significance of this is that everyyear in the US alone, many thousandsmore of these inaccessible propertiesbecome a permanent part of the land-scape, adding to the already hugeinventory of inaccessible homes, thusperpetuating inaccessibility for futuregenerations. These structures will dic-tate who may and may not be able tolive in them, long after their originalowners are gone.

Can you begin to sense the mandateappearing before us? Look at it thisway: If we don’t take on this man-date by doing our part to build fullyaccessible homes and properties, who on earth will? s

“Visitability” has been a growing trend nationwide for the past ten years.The term refers to single-family housing designed in such a way that it canbe lived in or visited by people with disabilities. A house is visitable when it meets three basic requirements:

b`at least one no-step entrance; b doors and hallways wide enough to navigate through; b a bathroom on the first floor big enough to get into in a wheelchair,

and close the door.

“When someone builds a home, they're not just building it for themselves – that home's going to be around for 100 years,” Concrete Change founderEleanor Smith told The New York Times. “These things hurt nobody – andthey help a lot of other people.”

“The visitability movement is based on the conviction that inclusion ofbasic architectural access features in all new homes is a civil and humanright and improves livability for all,” according to Visit-ability: an Approachto Universal Design in Housing, a publication by the RehabilitationEngineering Research Center on Universal Design at The State University of New York, University at Buffalo.

Photos by Bob Wigand

www.post-polio.org POST-POLIO HEALTH Spring 2009 Vol. 25, No. 2 9

Aging Well with Post-Polio Syndrome and Sleep ProblemsResearchers at the University of Washington’s Aging Rehabilitation Research and Training Center, mcmulk@u.washington.edu

One of the first things that people notice as they grow older isa change in their sleeping patterns. The older they get, theless they sleep; or they just feel less rested when they wake

up. Most people are not sure why they do not feel rested, nor arethey always sure how to improve their sleep. Adding post-polio syn-drome into this equation can lead to more confusion about whatexactly is causing the sleep problem and, perhaps more importantly,how to deal with it.

People aging with the effects of polioare not alone in dealing with sleepproblems. In 1995, Mellinger and colleagues found that 25% of peoplebetween the ages of 65 and 79 report-ed serious insomnia as compared toonly 14% of people between the agesof 18 and 34. In addition to askinggenerally about insomnia, researchersevaluate sleep quality by asking aboutthe number of times a person wakesup after they’ve fallen asleep, theamount of time someone spends inthe lighter stages of the sleep cycle(so called “Stage 1” and “Stage 2”sleep), and the total amount of time a person spends asleep.

All of these factors change as a persongets older. Aging people increasinglywake up during the night, spend moretime in lighter sleep stages and spendless time in deeper sleep stages, andspend less total time asleep.

Talk about sleep problems leads toone question: What’s the big deal?While sleep problems can be annoy-ing and lead to feeling sluggish andless energized throughout the day,some researchers, such as Al Lawatiand colleagues in 2009, Bradley andcolleagues in 2009, and King and colleagues in 2008, have found thatpoor sleep can lead to heart disease,diabetes and stroke. The fact is that

sleep problems are important andshould not be ignored.

What can and should people do toimprove sleep? The answer dependson the type of sleep problem. In gen-eral, there are four reasons why peo-ple who had polio may have troublesleeping. Physical issues can causebreathing problems (such as sleepapnea) that can interrupt sleep orreduce the quality of sleep.

A second cause is anxiety or a “racingmind.” Both of these issues can causetrouble falling asleep as well as ashorter amount of total sleep time.

A third reason is due to medications(commonly taken by individuals withpost-polio syndrome) that disrupt thesleep cycle and lower the quality oramount of sleep.

And, people with post-polio syndromereport pain problems, and pain cancontribute to problems in sleeping.

One reason why the research that wedo at the University of Washington is so important is that it can lead tointerventions and solutions that actu-ally work. Once the cause of sleepproblems is known, each cause has itsown set of management solutions. Infour future columns, we will discusseach sleep problem category in depth,and we will offer strategies and solu-tions for dealing with them. s

The contents of this columnwere developed under a grantfrom the Department ofEducation, NIDRR grant num-ber H133B080024. However,those contents do not neces-sarily represent the policy ofthe Department of Education,and you should not assumeendorsement by the FederalGovernment.

10 POST-POLIO HEALTH Spring 2009 Vol. 25, No. 2 www.post-polio.org

Contributions to PHI’s educational, advocacy and networking activities ...

Donations in Recognition of OthersPost-Polio Health International extends a heartfelt thank you to its many Members and friends who financially support its mission by recognizing loved ones.

Phyllis L. BrinkBill BuckinghamPaul DunleaveyGerald Hughes GainesPatrick Gibbons

In Memory ofMarshall D. BaugherCarol BernardoAbbie BondurantRay R. Boyce

Harley Clare HeadleyLee HollowayJere HoweSam KargelVirginia Kawamura

Ask Dr. Maynardcontinued from page 5

statement of medical researchers(March of Dimes Birth Defects Founda-tion, 1999, Identifying Best Practices in Diagnosis & Care, Warm Springs,GA: March of Dimes InternationalConference on Post-Polio Syndrome).Certainly, PPS will not be more debili-tating than acute polio, because itdevelops slowly and does not sudden-ly challenge all critical life functionslike an acute infection does. Addi-tionally, small changes in motor func-tion can and should be treated withappropriate rehabilitative strategies,such as use of compensatory devicesand making activity changes.

Last, PPS does not directly affect thebrain’s capacity to see, talk or think,but it can at times affect those func-tions temporarily if its symptoms(such as severe fatigue or pain) are so intense that they overwhelm one’sconcentration and/or alertness. Whenwell rested, all brain functions willreturn to their normal state.

Follow-up Question: In Vol. 25, No. 1 (page 3), Dr. Maynard respond-ed to a question about “using my toesmore than my whole foot to walknow.” He explained that the anteriortibialis muscle is the primary con-tracting muscle that normally picks

up the foot at the ankle joint to helpyour toes clear the floor as you pickup your leg. To compensate for weak-ness in this muscle, adjacent muscles(toe extensors) that act to move thetoes upward also contribute to pickingup the foot. In fact, one is not walkingmore on the toes, but with the overactivity, the toe extensor muscles, andthe big toe in particular, are in anabnormal “cocked-up” position duringthe swing phase of walking. Ms. Toherasked, “What can I do about this?”

A: If the toes are rubbing on yourshoe tops, a “high toe box” shoe designmay be helpful. It wouldn’t hurt to trytaping the toes. If the muscles continueto weaken, a lightweight short bracemay become necessary. There are sev-eral new designs that may be satisfac-tory, including ones that merely attachto the back of a shoe’s counter and arehardly visible. A high-topped shoe orhiking boot might solve the problemson unlevel ground. Some people alsodo much better with very lightweightsoft moccasin footwear, at least whenweather and walking surfaces permit.Seeing a good orthotist and/or work-ing with an experienced post-poliophysician to find a feasible individualsolution would be your best option. s

continued ...

PPH25/2

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Contributions to The Research Fund ...In Memory ofDavid A. Fagerberg, Jr. Jann HoagHarley Clare Headley Patricia Campbell LiBassiCarroll Lee Heide Edythe Gibson McClintock

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Spring 2009 Vol. 25, No. 2

Post-Polio Health InternationalIncluding International Ventilator Users Network

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Inside Post-Polio Health(Vol. 25, No. 2, Spring 2009)

Remembering The Polio Crusade... pp. 1-3Worthy of Note... p. 2Ask Dr. Maynard... pp. 4-5The Garden... pp. 6-8Aging Well ... and Sleep Problems... p. 9 and more.

Moving? Change of address? Please notify PHI before you move by calling 314-534-0475 or email info@post-polio.org.It is helpful if you tell us your old andnew addresses. Will you be temporarily away?If you send us your “second”address and the dates you will be at each address, we will do our best to send the newsletter.

Help us decide. PHI is looking for ideas for the focus ofWE’RE STILL HERE, October 11-17, 2009. In 2007, Memberswrote “Letters to the Editor.” In 2008, Members spoke at Rotarymeetings. The purpose of the week is to call attention to theaccomplishments and needs of the survivors of polio. Do youhave a unique idea for 2009? Send it to info@post-polio.org. s

Information to be available. Due to the outstandingresponse, registration for the conference to be held atRoosevelt Warm Springs Institute for Rehabilitation inWarm Springs, Georgia, was closed March 21, 2009.

PHI has compiled the abstracts/handouts/summaries in daily program books as isour custom. We will incorporate the additional information presented at the confer-ence and make the books available at a later date for a reasonable fee. Watchwww.post-polio.org and the next issue of Post-Polio Health for details.

Co-Directors of the Post-Polio Wellness Retreat, Fred M. Maynard, MD, and SunnyRoller, MA, report that 60 individuals will be attending the pre-conference event.The National Center on Physical Activity and Disability (www.ncpad.org) will videotapeparts of the Wellness Retreat and PHI will summarize the activities. The goal is toencourage others to duplicate the retreat in other parts of the world. s