25th September 2000 Department of Health's position on PPS

© Copyright - Lincolnshire Post-Polio Network - Volume 3 Issue 1 of 12 - October 2000 1

The Lincolnshire Post-Polio Information NewsletterVolume 3 - Issue 1 - October 2000

WebSite - http://www.ott.zynet.co.uk/polio/lincolnshire/

Remember the opinions expressed are those of the individual writer(s) and do not necessarily constitute an endorsement orapproval by the Lincolnshire Post-Polio Network. Although it does not provide an endorsement, it is provided as a service to

those seeking such information. ALWAYS consult your doctor before trying anything recommended in this or any otherpublication. Lincolnshire Post-Polio Network - UK Registered Charity No. 1064177

This issue is dedicated to the life of Denis V. Mardle, C.B.E.

25th September 2000Department of Health's position on PPS.

In the current edition of their magazine The Bulletin, the British Polio Fellowship (BPF) clarifiesthe Department of Health's position on post polio syndrome. In correspondence with the BPF,Yvette Cooper, Parliamentary Under Secretary of State at the Department of Health, writes:

We are aware of the emergence of evidence that post polio syndrome isaffecting survivors of epidemics earlier this century.

Polio was previously considered to be a self-limiting disease, once the acutestage was over. The amount of residual damage determined the degree ofrecovery, which was thought to be stable once optimum function had beenachieved. However, it is now well established that polio has a second, slowlyprogressive degenerative phase, unrelated to normal ageing. This secondphase may become apparent many years after the initial infection.

As time passes, an increasing number of previously "stable" persons with ahistory of polio infection report unexpected new symptoms. The time lag fromthe initial infection to the second phase varies but is commonly approximately30 years.

The onset is usually slow and steady. It may occasionally develop suddenly andprogress at an irregular pace. Symptoms sometimes commence after a periodof physical or emotional strain, or after a period of immobility, e.g. disease orsurgery.

Yvette Cooper has given the BPF permission to quote the above text. The Lincolnshire Post-PolioNetwork are grateful to both the BPF and the Department of Health for their permissions to usethe same text for informational purposes.


EDITORIAL By Hilary Hallam

Annual General Meeting. 34 people attended theactual meeting with 18 staying over at the IBIS Hotel.The minutes will be sent with your next newsletterbut to bring you up to date here are a few facts fromthe meeting.

Precis of Chairman's Report. Christine Ayreapologised for being unable to do much of the workthis year due to ill-health. In the last couple ofmonths a couple of TV programmes have featuredPPS which has highlighted the condition.TheHealthcheck Watchdog programme resulted in 68enquiries to which we responded with Informationpacks and from this we have had 14 new members.Funds are the biggest problem for the Charity.Hilary’s daughter Alison was thanked for organising atruck pull which raised over £500. Membership hasincreased this year and we now have 41 LifeMembers, 28 Overseas members and 207 ordinarymembers. A total of 84 are at present due forrenewal.

Voting then took place with additional nominationscoming in from the floor and the results are:-

Chairman Hilary HallamVice Chairman/WebSite Administrator - Chris SalterSecretary Frank GrimmittTreasurer Wendy GrimmittMembers Phil Bilton, Janice Eary, TedHutchinson and Jennifer McGowan.

As your new Chairman I would like to start bythanking a few people. Our retiring committeemembers - Christine Ayre, Bud Robinson, MyraMcManus and Jean Tapper - for their support overthe last year. Jean is now on the committee of theLincolnshire Association of People with Disabilitieswhich means we shall still be in touch on a regularbasis. Our Vice-Chairman and WebSiteAdministrator Chris Salter for his work on ourgrowing WebSite which continues to receive highpraise from many sources. We have been asked whythis post remains with Chris and its simply that hedoes all the work on a voluntary basis and ourorganisation would not be what it is without hisexpertise. Our co-opted committee membersWendy and Frank Grimmitt have now taken the postsof Secretary and Treasurer. I am especially gratefulto Wendy for taking this post allowing me to put theenergy it has taken doing the administration work andpreparing and sending out Information packs etc.,towards other work. Committee member Phil Bilton‘our Gopher’ who is always there in the backgroundworking hard. A special thankyou to Marie Leefrom Blackpool who worked almost non stop at theAGM preparing the food for our buffet and makingsure the teapot was hot. I have received so manycomments on the excellent colourful way the food -bought from ASDA - was presented. I would alsolike to thank all those who joined us for the day andweekend and for the help given. Saturday eveninginvestigating King Edward III’s underwear andarmour was particularly interesting and my thanks to

CONTENTS

Editorial - page 2

Life with Denis - Polio Survivor for 55 years - page 4

Details of - South Lincolnshire Healthcare Trust Equipment Awareness DayNovember 1st 2000 - Springfield House, Springfield Business Park, Grantham

Details of - Pathophysiology and Management of the Post-Polio Syndrome: A Critical Review.One day course for Consultants, GP’s and Allied Professionals

at the Lane Fox Unit, St. Thomas Hospital - October 26th 2000 - page 7

Article - Strategies for Management of Arms and Shouldersby Mary Ellen Brown, RPT and Nancy L. Caverly, OTR/L page 8

Sleep Difficulties by Member Philip Dalton - page 11

Nutritional Therapist Vivien Holland DNN writes...about Constipation page 12Report on Talk on PPS and Nutrition at our AGM by Jann Hartman,USA - page 13

Drugs to Watch Out for with Post Polio - page 14

Polio Biology XI - The Biology of Fatigue - Library addition - page 16

Illusions by Judy Sander page 19

Network Spinal Analysis - page 20

Helpers Simply Helping Simply by Art Coburn - page 23

Articles added to Lincolnshire Post-Polio Library since last newsletter - page 23 - 24


Tony Meladio - who has been King Edward III forover 20 years as a re-enactor - for bringing his ‘fullbody orthotics’ for us to see.

Finally I would like to welcome our new committeemembers, Janice Eary, Ted Hutchinson and JenniferMcGowan and thank them for offering to join ourteam from the floor of the AGM. We hoped wemight get one new member but three surpassed ourwildest dreams. There is a new wealth of expertiseand a sub-committee will be formed to fund raise andobtain grants to further our work and purchase officeequipment for the Charity. Up till now apart from theWebSite computer purchased by three firms inAmerica we have been using our own equipmentwhich is now well used, out of date and warranty. Welook forward to telling you next newsletter of ourplans for the year. Coffee mornings are a good wayto raise some funds and spread the word about PPS, ifanyone would like to do this then please get in touchso that we can send you some extra information.

I would like to clarify a query that has come from anon-member who reads the odd newsletter.Attendance at PPS Conference costs have not beenpaid for by the LincsPPN. Money towards travellingto the States and presenting at the GINI Conferencethis year was received, as a donation for that purposeonly, from members - both in the UK and overseas -from Lincolnshire Health Authority and LincolnshireCounty Council and from my family. There was alsothe generosity of the people that we stayed with en-route without which the trip would have beenimpossible. Once again my thanks for their supportin our quest for more information.

On my return I wrote my story diary style, from notesthat I had made, as I had on previous trips, addingsome humourous pieces here and there to lighten itup. I have received many compliments on thecontent, admiration for even attempting a road trip ofnearly 3,000 miles - the cheapest way - to meet upwith more PPS specialists and PPS Groups, and beenasked how did you manage it? PPS is hard to accept,changing from the fast lane of my life to the slow laneis not something I planned for or want. Not being ableto just get up and go but having to plan ahead all thetime is very tough. It does not mean that you cannotput in times where you know you are going to overdoif its what you want to do and you know it will giveyou a huge boost from the achievement of doing it.There was no going out at night, there was very little‘tourist time’ and being honest not enough restingtime and I had to manage on the small amount leftonce bills are paid as I do in the U.K.

Meeting - 16th August Neurosciences Forum withLincolnshire Health Authority. Unfortunatelymuch of the meeting was taken up by a presentationabout the merging of two NHS Trusts. However

more discussion took place on how we can moveforward in obtaining better neurological support inLincolnshire. Andy Rix - the LHA representative -also a qualified nurse and a carer for his wife who hasa neurological condition - told us that he was nowbeginning talks with various people towards our goal.

Meeting - 4th October in Birmingham. I attendedas the representative for the LincolnshireNeurosciences Forum an Inaugural meeting ofregional neurological support groups. This meetingwas very productive with groups detailing how theyhad started and why. We all gained pieces to add tothe jigsaw of our work. A full report is being sent toDeborah Jaines at Lincolnshire Health and moreinformation will be forthcoming following the nextmeeting on November 16th in our next newsletter.

Neuroscience Support Group Seminar 7th Octoberat Queens Medical Centre Nottingham. I manned astand for the LincsPPN providing information onPPS. Three attendees took information for parentswho had had polio. Many therapists took a new‘leaflet for Health Professionals’ with many sayingthey did not know of its existence. ThreeOccupational Therapists - one who knew of our work- asked for more information, links to their websiteand a talk to be given to their local OT’s. Theorganisers of this day were particularly helpful andbrought various ‘Professors and Doctors’ to meet meso that I could explain the work we are doing. I lookforward to taking up their offers of contacting themagain to further the short discussions we had.

Our thanks to the family, friends and work colleaguesof Denis V Mardle CBE for the generous donation of£800 in memory of his life, and especially to HelenGeorge his daughter for telling us about her father.Starts at page 4. Denis was truly a ‘High Achiever’.

Fund Raising Polo Shirts with embroidered Logoare now available. Christmas will soon be with us,why not help our funds and promote our charity bybuying a Polo Shirt. They are white polyester cotton65/35%, collar, three button, shirts with a breastpocket located embroidered logo of 13,500 stitches asthe front of this newsletter. Sizes available are S 34 -36, M 37- 39, L 40 - 42, XL 43 - 45, XXL 46 - 48,XXXL 49 - 51 and are priced at £10 with the Logoon, and £13.50 if you wish your Christian Name toappear below this. Please send your orders andcheques, which include postage direct to you, to theLincsP-PN.

FINALLY - Information check sheets are enclosed.Please notify us of any errors and if something doesnot arrive as expected then please give us a ringASAP.


Dennis V. Mardle C.B.E.

Life with Denis -Polio survivor for 55 years

by Helen George.

Denis met my mother through the R.S.P.B.bird watching society in 1979, they were marriedwithin six months. We soon learnt a lot aboutDenis, the difficulties and the achievements. Weloved and accepted him into the family,especially because he made our mum happy.

On the Day he contacted polio (aged 15) hehad been to a football match (To see his belovedLuton town). On reflection he realises that hemust have drunk from a cracked cup, becausethat evening the middle of his spine felt like itwas on fire ! It did affect his lungs and left apermanent weakness, but he did not have to betied to an iron lung. I think that during his two-year stay in hospital he developed his incrediblestrength and courage to make the most of life.He must have had such admirable determinationto further develop his brainpower as he went onto achieve great levels of academia, and makegreat contributions in his workplace.

I believe he made full use of what wasavailable for him; he would not let his disabilityget in the way of going places or doing things.His arms and shoulders were his focusedmobility and when his wheelchair would onlytake him so far, he would use his crutches to getthat bit further. He did have to wear a bodysupport, he said that sitting up was notcomfortable for him without it, it was madeespecially to suit his body shape. He also had acalliper on his right leg, which helped him to bestable and walk in a shuffled sort of way.

Around the time that my mum died, 10 Yearsago, when Denis was 60, I took on being Denis’carer, I noticed a gradual deterioration in him. Atfirst he would talk of feeling nervous aboutwalking across the room with his crutches. Thenhe mentioned more frequently that his hands feltclumsy (Age 64) and there didn’t seem to be somuch strength in his arms. It was around thistime that sliding boards were introduced. Itwasn’t long before he didn’t use his crutches atall (Age 65). Doctors took X-rays and said thatboth of Denis’ shoulders were Arthritic and therewas nothing that they could do about themperiodically dislocating. He would ask for amassage when they used to get really sore, thejoints would sometimes twitch and crack, somassage would have been too harsh, sometimesI would just hold his shoulder in-between myhands and hope that the T.L.C. was getting

through.

It was also around this time that Denis hadtwo overhead hoists put in the bungalow, one inthe bedroom and one in the bathroom. Up to thispoint Denis had a procedure for having a baththat he was able to do independently. Headjusted quite well to needing more help for hisbath and things in general. He had a carer comeevery morning to help get him up. The days Ispent with Denis were quite slow; this wasmainly because we were going at Denis’ pace, Icould see how vitally important his independencewas and besides he loved to chat and reminiscewhile we were taking our time to doing thingsanyway.

Denis continued in this vein, althoughweakness and pain must have been graduallysetting in. Denis turned Three Score Years andTen Last Year. I think he realised that he haddone well to live to this age and sometimeswould worry that his memory wasn’t as good asit used to be.

I would reassure him that, Its not that you getmore forgetful ~ Its just ‘As you get older youhave more things to remember!’ And besides ~ Iam 42 and Denis knows ten times moreinformation (Or more) than I do, so forgettingwhat somebody who you met 40 years ago wascalled, is not a sin. Denis would worry about itand ask me to dig out a book or something so hecould make reference to it, until he hadremembered.

Around Mid winter he also started to worryabout getting himself into bed at night. He hadmanaged quite adequately before, although Ibelieve the whole process would take him acouple of hours. He had a lifeline alarm that hekept around his neck at all times, he had to use itat night on several occasions, this made himrealise that he needed even more help.

We made some enquiries about ‘live incarers’. It made sense to have some one live inand be there all of the time. At the beginning ofthis year Denis had to make many adjustments,it was difficult for him at first to get used to acarer and allow them to help him. They wouldalways use the hoist, as this would prevent theirbacks from harm and Denis from being in toomuch pain with his shoulders.

Around this time I began to notice that Deniswould get quite agitated, he wasn’t really himselfand would sometimes upset me. I talked with thedoctor and after checking him over; he said itwas just anxious adjustment? After a short


while he ceased the agitation, and started to bemore tired than normal? There were a fewincidents when he had visionary experiences,and made some reference to religion (notnormally a follower of anything except maths andscience). His eyes would sometimes roll and hewould either fall asleep in the middle of talking orjust not hold a very long conversation.

I wanted Denis to see a doctor, but he insistedit would wait till the end of the week when he hadan appointment anyway. The following morningthe carer phoned me and we all rushed tohospital. I found myself getting very agitated,because Denis was given an oxygen mask andwas left in a queue to see the doctor? After 5hours I went to get some fresh air and Denis hada Pulmonary Arrest! Suddenly Denis went up thequeue of importance and was resuscitated andtaken to the intensive care unit. I was given a lotmore respect and given explanations.

It was a crucial time and Denis did pullthrough, although it did result in him having atracheostomy. It was at this time that I scouredthe Internet for information on Post Poliocomplications late in life. I took in an article aboutpulmonary dysfunction for Denis to read, He toldme later that the doctors were very interested inlooking at the article as they admitted to knowingvery little about post polio syndrome.

I had told Denis how worried we all were, whenhe was more ‘with it’, he wrote down “I am notthat weak!” and gave one of his wry smiles. Heeven told a joke to my sister Lyn when shevisited.

When Denis moved from Intensive Care theywanted to do more tests. After exploring manyavenues, they discovered that he had a conditioncalled ‘Sleep Apnoea’. On his chart it showedthat Denis temporarily stopped breathing 179times in one night. Yet again I scoured theInternet and took more reference for Denis toread. I wanted at this point to encourage him toget in touch with a doctor that was more familiarwith polio symptoms. There was mention of StThomas’s in London, the hospital contacted thisplace and he was referred to Standish Hospitalnear Stroud for CPAP treatment. Denis wasrather confused at times, where he was going orwhat he was doing, it became more difficult tohave detailed lengthy conversations, he wouldalso continue to get agitated at times.

The move to Standish was arranged andthe CPAP treatment was explained. I believeDenis had quite lengthy talks with two CPAPDoctors. In Denis’s process of thought hedecided to refuse the CPAP treatment and said

that: “He would rather die peacefully soon ~T h a n b e k e p t a l i v e i n h i sDeteriorated and Dependent state by thetreatment”

The hospitals attitude changed and they sentDenis home; it is what he had wanted after beingin hospital for six weeks already. I did feelhowever that they appeared to be washing theirhands of him! He was sent home with nomedication or recommendation for assistance inhis condition. From the words of a nurse came:“We have plenty of sick people who want ourhelp, we haven’t time to waste”

Denis had made the choice to go home anddie! I think he approved of the treatment but tookan opportunity to give up the battle against hisother deteriorations. His long-term polio strengthhad run out! He knew it was going to happensoon. I sent a ‘help us’ plea to the LincolnshirePost-polio network who got in touch with Denisand was arranging for someone to visit him.

The first week Denis was home from hospitalhe was happy, although it was not long before hebegan to get agitated again. I asked his localdoctor if a little oxygen would help him be morecomfortable. It was explained that in refusing thetreatment, which was oxygen assistance, thedoctor could not do anything unless Denisconsented. I explained my concern and worry toDenis, he didn’t want to talk about it and gotagitated and angry with me for bringing it up.

He didn’t want to talk about much at all,conversations were short and self focussed. Hewould frequently fall asleep in the middle oftalking. He would keep on saying that therewas no time to do the things he used to do!Sometimes his eyes would roll and during thelast week of his life he asked if we could see thehorse in the garden? Another time when I waselevating his legs on to a cushion he asked if Icould see the flames coming out of his feet? Igently held them for a while and did my ‘channelhealing thing’ and said, “Your feet are telling methat they are happily resting now” This was thelast ‘with it’ time I saw Denis.

The Day before he died he spent theafternoon in the garden and talked to the carer alot about the nature and wildlife that visited hisgarden, apparently he also said to the carer“God is here you know!”.

He was due to go to a six-week follow upappointment with the specialist at the hospital onthe very morning that he died. When the carerhad tried to wake him, he was delirious, so we allrushed to hospital. Pneumonia had set well in to


one lung, it was a wait and see time. We did nothave to wait too long because two hours later hearrested and died. It was peaceful; it was, as hehad wanted.

AFTER THE LIFE OF DENNIS

Denis was an avid reader of the Times; hewould regularly read the obituary column (lots ofpeople do!) Denis implied once to me that he’dlike me to notify them when it was his time.Thanks to the Internet I was able to contact theTimes and here is a copy of my article.

The Times - 15th August 2000.

DENIS MARDLE C.B.E.A polio victim who became an

extremely talented mathematicianand chess player.

DENIS MARDLE, died peacefully on July 31st, aweek before his 71st birthday, he was a talentedmathematician who became one of Britain’s leadingcryptanalysts. A victim of polio from the age of 15,he remained heavily disabled for the rest of his lifeand could move only slowly with crutches and legcallipers In spite of these adversities he was bynature cheerful, courteous and sociable.

Denis Victor Mardle was born on August 9th

1929 and spent his childhood in Luton. Denis waseducated at Denbigh Road Elementary School andLuton Grammar School, where he passed his schoolcertificate exams, just before his fourteenth birthday.In the Science 6th form chemistry was his strongestsubject, but that changed after his illness. From theautumn of 1944 he spent nearly two years at theRoyal National Orthopaedic Hospital, Stanmore.With great help and encouragement from hisheadmaster, K. B. Webb, he returned to the 6th Form,where burly fellow pupils carried him up and downstairs when necessary. He now concentrated onmaths with a new determination, and also managed tomaster School Certificate Latin rapidly in order togain admission to Cambridge. Entering Christ’sCollege Cambridge to read mathematics in 1948, heobtained his B.A. in 1951 and went on to do adiploma in statistics the next year.

Meanwhile, his abilities as a chess playerwere developing and he was a regular member of theBedfordshire and Cambridge University teams. Itwas at an Oxford v Cambridge match that he was“talent spotted” by C. H. O’D Alexander, then headof the Cryptanalysis Division of G.C.H.Q. Denisjoined the Eastcote establishment in 1952; It was inthe local chess club, that he met Barbara Lally, whowas to become his first wife. He was soon movedwith his colleagues to Cheltenham, where he and

Barbara lived for many years. Sadly Barbara diedfrom cancer in 1972, Denis lived alone for sevenyears.

Denis Mardle was initially appointed toGCHQ as a research mathematician and made anumber of contributions that are still held in highregard in both the UK and the US. A steadysuccession of promotions followed, from SeniorScientific Officer up the ladder to Deputy ChiefScientific Officer. In 1969 he directed theMathematics Research Group before being promotedto Chief Mathematician in 1973. Denis and hiscolleague James Ellis made significant contributionsto signal processing for radio direction finding atabout this time, anticipating the development of theMUSIC algorithm by Schmidt in the USA by severalyears.

Denis continued his interest in chess formany years, partly by means of correspondencegames but also in league matches. He also competedin the British Championship twice, played once forEngland and often took part in the Hastingstournament. It was here, in about 1960, that he scoreda brilliant victory against the Grandmaster Gligoric.

While Denis was living alone his interest inornithology grew. It was through the R.S.P.B that hemet his second wife, Freda Storie, she bought colourand sparkle to his life. They married in November1979; in 1981 they moved to Teddington nearTewkesbury, they lived here for 10 years. Sadly Fredadied of a heart attack in May 1991.

In 1982 he was appointed Head of theCryptanalysis Division, with considerableresponsibilities for planning and staff management. InMarch 1988 he was awarded a CBE for his overallcontributions. He retired officially on his 60th birthdayin 1989, but continued with administrative tasks.Later, in full retirement, the Internet provided himwith a window on the world, including theinterpretation of the mysterious Voynich Manuscript.

In the last year or two of his life Denisbattled against a deteriorating body with breathingdifficulties. Although he lived alone after Freda died,he received much help and support from Freda’schildren. He had no children of his own. DaughterHelen who lived nearby was able to look after hisdomestic needs and make his last years comfortableand relatively happy.

Denis Mardle was born in Luton on August 9th 1929.He died on July 31st, aged 70. Cont. overleaf.I am spending my days missing Denis andcataloguing all of his books, it is a task and a halfI can tell you but I am enjoying it because it ishelping me deal with my grief. At one point I feltdevastated that all of Denis’s knowledge had


gone! I have realised in looking through hisbooks the knowledge is still there and this hascomforted me a great deal. I am also beginningto see myself as lucky that I knew Denis and gotto spend a lot of time with him. His funny wayswould exasperate me sometimes, now they justmake me smile.

Helen George. <[email protected]>

Editorial Note.

The Lincolnshire Post-Polio Network would liketo extend a huge thankyou to the family, workcolleagues and friends of Denis Mardle whosedonation in memory of his life totalled £800.This will be put towards continuing our efforts topromote the awareness of Polio’s late effectsand requested provision of specialist PPS multi-disciplinary assessments. The more we all -health professionals, polio survivors, carers,family and friends - understand about polio andPPS and the treatment, advice and equipmentthat is recommended by PPS Specialist Clinicsin other parts of the world the longer and easierwe will all be able to manage the remainder ofour lives. I am only sorry that I only got to talk toDenis on the phone, he died two days before wewere due to meet.

TELL YOUR HEALTH PROFESSIONALSABOUT THE FOLLOWING

ONE DAY COURSE

Thursday October 26th 2000

Pathophysiology and Management of thePost-Polio Syndrome: A Critical Review.

Postgraduate Centre, St. Thomas' Hospital,London SE1 7EH.

ORGANISER - Adrian J. Williamsfor The Lane-Fox Unit's Post Polio Centre.

Programme:9.30 - 10.00 Coffee and Registration.1 - Polio Revisited - Robin Howard.2 - Post Polio Syndrome - The U.S.

Perspective - Anthony Windebank.Break.

3 - The Post Polio Syndrome - The U.K.Perspective - Adrian J. Williams.

4 - Post Polio Respiration - A. Craig Davidson.5 - Post Polio Sleep - Adrian J. Williams.

Lunch.6 - The Patient's Perspective - Tony Gould.7 - Orthopaedics - Prof. F.W. Heatley.8 - Spinal Surgery - John O'Dowd.9 - Psychiatry - Andrew Hodgkiss.10 - Rehabilitation - A. Craig Davidson.Summary and Close - Adrian J. Williams and

Robin Howard.

Course Fee:£50.00 for consultants and GP's.£30.00 for allied professionals.

For Registration Form contact Mubina Issaji;Tel: 020 7928 9292 Ext 3581Fax: 020 7401 8591Email: [email protected]

South Lincolnshire Healthcare NHS Trust - Specialist Services Departmentpresent Equipment Awareness Day

Wednesday 1st November 2000Spring field House, Springfield Park, Grantham, Lincs.

See the latest equipment and products available - 24 companies.Come to our ‘Open House’ and meet the staff of the Specialist Services Department

at Unit 127 Springfield Park. Free transport between here and Springfield House.

Attend one of our seminars10.00 to 10.45 - Assistive Technology10.55 to 11.30 - Pressure Reduction

11.40 to 12.10 - Direct Payments/Independent Living12.20 to 1.00 - Wheelchair Service - Fitting and General Maintenance

1.00 to 1.45 - Repeat of Assistive Technology1.55 to 2.30 - Continence

2.40 to 3.15 - Repeat of Direct Payments/Independent Living3.25 to 4.00 - Voucher Scheme & Electric Powered Indoor/Outdoor Wheelchairs.

Program is subject to change.


Eighth International Post-Polio andIndependent Living Conference

St. Louis, Missouri, June 8-10, 2000

STRATEGIES FOR MANAGEMENTOF ARMS & SHOULDERS

Mary Ellen Brown, RPTand Nancy L. Caverly, OTR/L

POSTURE & ALIGNMENT

1. Keep your arms in good alignment. Thisallows improved function, minimizes stress andpain. To have your arms in proper alignmentrequires good postural alignment of the entirespine and good stabilization of the shoulder girdlemuscles. In other words, SIT UP STRAIGHT withchest up and shoulders back and down!

2. To have good posture and a stable position ofthe spine requires functional trunk strength and/orcustom seating to support the back while in aseated position and possibly a custom brace forupright positions instead of just standing.

3. Learn RELAXATION techniques for neck,shoulders, arms, wrists and hands to avoidfatigue from tension and to prevent unnecessarymuscle overuse from muscle stress. Explore avariety of relaxation techniques, for the restingbody, to find one suitable for you. These mayinclude meditation, listening to music, creativevisualization, and/or taking a class on stressmanagement. Deep relaxed breathing isessential. Note: relates to LIFESTYLE, also.

4. Do a daily stretching routine to maintain goodmobility of joints and muscles. If you cannot dothese exercises yourself, have someone do themwith you.

FINE MOTOR/ HAND TASKS

1. Make sure your hands are comfortably warmto facilitate improved function and relaxation.Sometimes gloves with the fingertips cut off arehelpful.

2. Become more ambidextrous, alternating use ofright hand and then left. Don't make the samemuscles do everything.

3. Make sure your glasses are adjusted to avoidstrain on your neck and shoulders. Rememberyour postural alignment will shift to enable you tosee.4. When turning pages of a book, use a rubbereraser on a pencil to decrease use of fingertips,or use a mouth wand to eliminate upper extremity

(arms, shoulders) demands altogether.

5. Adapt writing implements and other tools sothat your hand is supported and comfortablerather than held in a tight pinched grip or awkwardposition.

6. When picking up light objects with your hands,mold your hand, using the strength of the palmmuscles rather than pinching with the thumb andfingertips.

7. Prevent pressure on the thumb side of yourfingers. Using hands incorrectly pushes thefingers away from the thumb into a deformingposition. For example, hold purses and bags onthe forearm instead of with the fingers.

8. Use scissors to open packaged foods, letters,tightly sealed packages. This reduces handstrain.

9. For drinking, try using a straw with the cup,can or bottle resting on a tabletop to avoid asustained grasp.

10. Check the ADL section of catalogs such asSammons Preston or Smith Nephew for self helpdevices for kitchen, bathroom and other needs.There are wonderfully helpful things to make lifeeasier from one-handed potato peelers to bookracks to portable toilet seats to graters on suctioncups, etc., etc., etc. Regular stores may have canopeners, jar grabbers, etc.; also, JC Penney andSears have catalogs for "Special Needs".

LIFESTYLE / STRESS MANAGEMENT

1. During rest breaks in mid-morning and mid-afternoon, make sure your arms are resting, too.Holding a book to read while relaxing the bodydoesn't rest the arms.

2. DELEGATE chores that are too demandingsuch as vacuuming, mopping, scrubbing,chopping, stirring, gripping. "if you have fourthings to do today, pace yourself to do one in themorning, one in the afternoon, one in the evening,and delegate the fourth. That's one of thereasons we have friends and family."

3. Do deep breathing exercise frequently forrelaxation and good oxygen supply to the tissues.Use respiratory assistance if necessary.

4. Eat a healthy well balanced diet low inanimal fat and high in vitamins and minerals fromfruits, vegetables and grains. Add extra highquality protein for neuromuscular maintenance.


5. Make sure you get plenty of sleep regularlyto allow your body to repair itself from any effectsof soft tissue micro trauma.

MOBILITY

1. Avoid stairs! Banisters may help legs(lower extremities) but they only strain upperextremities. Use elevators or escalators, if yourbalance is good enough.

2. Sit in chairs that have sturdy armrests andthat are firm. Avoid soft couches as you will reallystrain your arms getting up and down. Oneexception to the couch rule -- if you are on thefloor, maneuver yourself to the nearest couch, putyour arms up on the couch, and then roll yourselfonto the couch. This is usually easier than tryingto rise from the floor.

3. Avoid falls!! No matter what you might hurt,your upper extremities will pay the price. If youhurt a leg, your arms will be stressed usingcrutches. If you hurt an arm, you will becomemore dependent. Some fails are impossible toavoid, but many could be prevented by using theproper bracing, treating medical problems thatcause dizziness or balance difficulties. Whengetting new glasses or trying new medications, bevery careful as perceptions and orientation tospace may change. Also avoid fails by keepingyour environment safe by eliminating clutter,staying off slippery floor surfaces, getting rid of allthrow rugs. Stay inside on rainy or snowy days.If you have to go out in inclement weather, alwayscarry a small towel to wipe off the bottom ofcrutch or cane tips when you go inside.

ENERGY CONSERVATION FOR SHOULDERS

1. When using upper extremities for anyactivity, take a break at the first sign of fatigue.Do not wait for pain. Take frequent stretch andrest breaks -- at least every 15 minutes with anyactivity.

2. When lifting anything heavy, use bothhands and have object close to Your body todecrease stress on shoulders.

3. When reading a book, support the arms withPillows or with well-positioned armrests. Prop thebook on a slanted reading rack or similar prop ona stand.

4. Use a headset for telephoning to keep neckstraight and eliminate need for using arms andhands. Get comfortable in a recliner chair or lyingdown and enjoy Your chat!

5. Alternatives for heavy Purses or bags arefanny packs (bum bags), backpacks, large jacketpockets. Leave Your Purse (Handbag) in yourvehicle when shopping, carrying cash, checkbookor plastic in your pocket.

6. Large Pockets, belt loops are good places torelax arms when standing; rest arm on a fannypack at your waist or place arms on top of yourhead for a few minutes. Pillows are essential forarm support when sitting or lying down. Arms arevery heavy, so get rid of their weight bysupporting them on whatever is available.

7. Avoid unnecessary carrying by puttingduplicate supplies in several areas, such astowels, sheets, cleaning supplies in each roomwhere they will be needed.

8. Eliminate ironing from your life by buyingpermanent press clothing and hanging garmentson hangers when still partially damp from thedryer. If clothes must be ironed, rotate iron onand off of the garment without picking it up eachtime.

9. Use reachers for picking up light objects offfloor or other places. Remember the length of thereacher increases the lever arm, so it puts morestress on the shoulder when lifting. Do not try tolift heavy objects.

10. If your legs are getting a little weaker and it isgetting harder to get up and down, don't strainyour arms to get into an upright position. Usepillows in chairs to raise the height of the chair alittle or get a chair with a hinge mechanism to liftyou part way up Out of the chair.

11. Raised toilet seats make getting up and downeasier; now there are even adapters to lift up theheight of the toilet itself.

12. Using a regular toilet in some restrooms is areal challenge, so always wait for thehandicapped accessible stall. The toilets arehigher and there is more space for maneuveringyour body, using grab bars. These stalls are for"walkers" as well as wheelchair users. Note: Alertthe facility to any problems with accessibility inthe restroom.

13. Get a bathtub seat than can be lowered andraised hydraulically into the tub. Don't try to usearms alone to get in and out of the tub if your legscan't help very much. That is too scary and toomuch stress on your arms and shoulders! Use asturdy seat in the shower so you can relax andenjoy the water.


CHOOSING ASSISTIVE DEVICES (ASSISTIVETECHNOLOGY)

If you are beginning to need assistive devices forwalking, think about this very carefully. The useof canes, crutches, walkers and manualwheelchairs will be putting more demands onyour upper extremities that already have a fulltime job.

1. If the need for a cane begins to arisebecause you need extra security with balance,get a cane with an anatomically correct handle.You can get a right-handed or left-handed cane,also, depending on which side you need support.Collapsible canes are available for those specialoccasions when you are feeling a little insecure.A cane with a seat allows you to sit whennecessary.

2. A better choice, if you are beginning tofeel weaker, would be very lightweight forearmcrutches. (One supplier is Walk Easy 1-800-441-2904.) These will be less demanding on theupper extremities than trying to take weight offthe legs with a cane that is not secure. If you arehaving increased hip weakness, you definitelyneed to obtain forearm crutches, as no brace willhelp the hips. When standing at rest withforearm crutches, rest forearms on cuffs, torelieve stress on hands.

3. Be sure you use any lower extremitybracing that may increase your stability andsecurity, as this will decrease the need todepend so much on crutches and canes whichstress the joints and muscles in the arms. Thiswill decrease the chance of failing.

4. Walkers are a good choice for assistingweak legs with your arms. They are usuallymore stable and you can carry other things inbaskets or bags that hang on the walker. Alsoavailable are wheeled walkers (4 wheels) with aseat, tray and shelf space that are useful in yourhome, the mall or craft fairs.

5. For longer distance mobility, you mayneed wheels! If your arms are really strong, amanual wheelchair may be an option, but again,great demands are placed on your upperextremities. The shoulders, elbows, wrists, andhands are working hard to propel all of you --plus the wheelchair. If this choice works for you,the wheelchair needs to be very lightweight andthe width of the chair needs to be narrow enoughto allow your arms to be as close to your body aspossible, for better mechanical advantage inpropelling the chair. Keep a friend close by topush, in case you get tired.

6. To make life a little easier and decreasethe demands on the upper extremities, adding amotor to your wheels makes good sense. Thereare attachments that can be added to manualwheelchairs to convert them into motorizedchairs for short distances. There are manybrands of motorized scooters available; chooseone according to your need. The scooters putdemands on your upper extremities in that youneed to be able to steer them but this, in mostcases, would be easier than propelling the chair.You need to have fairly good trunk control to staybalanced in the chair/seat.

7. If your upper extremities, trunk and lowerextremities are all feeling weaker and fatigued, amotorized wheelchair is certainly the leastdemanding physically on the upper extremities ofany mobility device. Custom seating can bedeveloped to support spine and upper body in amore stable position allowing the upperextremities to be more functional with lessfatigue. Sometimes a tendinitis can develop inthe thumb and fingers from operating thecontrols of a motorized wheelchair, so the upperextremities always have some demand unlessyou get into advanced computer technology.

TECHNOLOGY CHALLENGES

If you have joined the folks in the fast lane andare using a computer, the demands on yourupper extremities have just multiplied manytimes, and could be the subject of a two-daycourse! The "normal" population in our countryis suffering at epidemic proportions fromrepetitive strain injury (RSI) from many hours atthe computer. Over 62% of all workplace injuriesare now for upper extremity repetitive straininjuries related to computer work. So. if the“normal" population is having this much troublewith their arms, we, the polio population, need totake our time at the computer very seriously.Because mobility is a problem and the computercan do so much for us, DON'T SACRIFICEYOUR ARMS in the process.

1. Get an expert in ergonomics (anoccupational therapist, physical therapist orothers) to set up your workstation.2. Make sure your chair supports yourspine in neutral, so that your shoulder girdle andupper extremities are in good alignment. Usewell positioned armrests to support the weight ofyour arms. Your feet should be supported, usinga footstool if necessary. If you are a wheelchairuser, have your workstation designed aroundyour chair.


3. Take a 5-minute stretch break at least every15 minutes with micro breaks more often. Limitthe overall time you spend at the computer to 4separate hours per day, depending on yourstrength/weakness.4. Consult your ergonomic specialistfrequently with any problem that gives you painor causes fatigue.

A REMINDER - If you develop any pain,increased weakness, excessive fatigue in theupper extremities, and reasonable amounts ofrest do not decrease the symptoms, get amedical evaluation and begin treatment as soonas possible. Many upper extremity problems canbe eliminated with proper management, and thesooner the symptoms are addressed, the lessrisk you face of permanent decrease of upperextremity function. If your doctor does notsuggest treatment such as physical therapy andoccupational therapy, INSIST ON IT. "Normal"people rarely hesitate to seek medicalassistance when pain or weakness occurs intheir arms and shoulders. Neither should you,who has much more to lose -- yourindependence.

Letter from Sylvia Dymond,Member in Hampshire.

In august 97 I purchased my second bed whichraised me to a sitting position and raised at thefoot end to easy my legs. It also had a built inmassage unit to ease he pain and other otheraches due to PPS. I heard that the companywere then manufacturing a bed which loweredmore - another 6 inches - to enable those whohad difficulty getting their legs onto the bed, Iomitted to say my first bed from this companyraised me to a standing position, my new onedoes the same. When I expressed my delightover my new bed a spokesman for the companysaid ‘we listen to our customers and try to do ourbest to help.’ I could not live alone without mybed . The company is Bakare Beds, Tel 0175251222 I have just taken my bed away with mewhen I went for a fortnights holiday/respite careand cannot cope without it.

Sleep Difficulties byMember Philip Dalton.

I suffer from sleep apnoea and so use acontinuous positive airways pressure machineand face-mask, to keep my airways open duringsleep.

However, I still had disturbed sleep; frequentlywaking fully of partially, and recollecting longdream sequences. These disturbances seemed

to coincide with times when I was changingposition or trying to. I wondered whether myweakened body was unable to change positionduring deep - and therefore relaxed - sleep.

I tried the following which enabled me to sleepthroughout the night - albeit still with the C-PAPmachine. Firstly I removed the thick foam pad Ihad used on top of my mattress, this seemed tohelp perhaps because there is less resistance tomovement.

Secondly I bought a ‘Bed Cradle’. These you willhave seen in hospital used to support bed linenover a broken limb etc. It is a plastic coatedsteel tube, shaped to fit under the mattress andover part of the bed thereby lifting the coversfrom the body, legs or feet. This cradle serves adual purpose - not only does it make it easier forme to turn, it also means that my muscles to nothave to support my bed linen throughout thenight. (I suggest that any such muscular effortexpended during sleep is unnecessarily tiring.)

There are a large number of types of cradleavailable. Mine was from Smith & Nephew, POBox 5665, Kirkby in Ashfield, Notts, NG17 7QX.Tel No. 0345 023087. They will send anexcellent catalogue. The type I ordered was‘Adjustable Bed Cradle’ Cat. No. AA3652, Price£28.84. They delivered the following day.

Some words of caution. The above has workedfor me and I generally sleep more soundly but itis only my personal theory unsupported by anyresearch or medical advice. Anyone sufferingfrom PPS and disturbed sleep should get intouch with a Sleep Clinic (with PPS knowledge)through their G.P.

Philip Dalton

Correction. Last newsletters article on page 3Summary of Anesthesia Issue for Post-PolioPatients - Updated 13th June 2000 by SelmaHarrison Calmes. I mentioned this article in mystory but did not specifically state that Dr.Calmes presented at the GINI Conference andapologise for this error.


Nutritional TherapistVivien Holland DNN writes...

about Constipation

I am a new member and over the comingmonths I’m planning to write articles that I hopereaders will find helpful regarding healthmatters, diet etc. obviously we are all sodifferent in needs so I hope you will pick andchoose as to what might help you. Do checkwith your GP it you have any doubts.

Just to let you know a bit about myself, I hadpolio in 1948 at the age of three. My legs wereoriginally affected but they seemed to recoverreasonably well and the only obvious effectwas the upper left side, including shoulder armetc. As a result I managed to lead a fairlynormal life. Fully clothed, only very observantpeople notice anything not quite right.

My biggest problem was always fatigue andgeneral weakness and in my 20's I becamevery interested in nutrition, trying onesupplement after another in an attempt toincrease my energy. I think if someone hadpointed out to me then that the polio had left itsmark In this respect, I wouldn't have beratedmyself that I couldn't do what others took forgranted. I'd have paced myself and notexpected so much. Looking back, I realisethat, for me personally, anxiety over my fatiguewas draining what little energy I had.

When I was 38, enforced rest came upon mewhen I strained my low back badly, I expectedit to get better but it didn't, and seventeen yearson the combination of that plus PPS hasrestricted me considerably.

On the bright side, if I hadn't hurt my back I'dprobably still be in my old job, banging away ata typewriter every day. Instead I began tostudy nutrition seriously, something I'veenjoyed immensely, and I'd like to share withyou suggestions that have helped me. I soonrealised that our optimum health is not abouttaking the right supplements, although they canhelp. There is a lot of groundwork to be doneto help our bodies function the best they can.

This first article is chiefly about constipation,something that affects so many regardless ofwhether they've had polio, but for anyoneinactive it can be more of a problem. Anyoneinterested in health matters will have heard ofthe importance of detoxification. Our bodiesare producing waste products all the time, andif our routes of elimination (bowels, kidneys

etc.) aren't working well, it can contributegreatly to fatigue and even aches and pains.

Drinking sufficient water is a must. Eight half-pint glasses a day in not too much. A pint ofwarm water on rising, half an hour beforebreakfast is very cleansing and will encouragea bowel movement. A little lemon juice addedwill stimulate the liver. Then. during the day,more water half an hour before a meal willimprove digestion. It's best to drink only smallquantities of liquid with a meal. Large amountswill dilute digestive juices and hinder thedigestion of the meal.

Having a bowel movement each day willpromote a feeling of well being. There'snothing worse than feeling you need to go butcan't. One of the jobs of the colon in to extractmoisture from the faeces. This is why thelonger a bowel movement sits in the backpassage, the drier and harder it becomes.Drinking sufficient water during the day willhelp, as will a diet high in fibre or roughage. Aproblem I have encountered though in not 'really constipation but a lack of the urge to gopossibly because the muscles In the backpassage are sluggish. Something you mightlike to try are glycerine suppositories (from thechemist). Pushed up the back passage theymelt and lubricate the area. I find they alsohave a stimulating effect on the muscles sothat the b ~ 1 movement comes more easilyand feels more complete. Try them when youare at home and can reach the bathroomeasily.

I've also found that aloe vera juice benefitsmany people considerably. It has many healthbenefits, particularly helping bowel problemssuch as IBS (Irritable bowel syndrome) andconstipation.

Clearing up a basic problem like constipationmay not directly help polio fatigue but I find thatso many things can contribute to our fatigueand make us more tired than we need be. Wejust want to feel as well as possible, don't we. Ifyou'd like to write to me with your own tips orcomments. I'd be pleased to hear from you.

Write to:Vivien Holland32 Green LaneSt. AlbansHerts AL3 6EZ


PPS and NutritionReport on talk given by USA Nutritionist

and Life Member Jann Hartman at our AGM

Dr. Bruno does not recommend a "high proteindiet" but a dietary plan that includes plenty ofprotein, especially at breakfast. (See LincPIN Vol2, Issue 7, The Post-Polio Institute "ProteinPower" Diet back page). It seems many of ushave been skipping breakfast, and that is notgood; and many times when we do eat, it is lessthan adequate for our PPS bodies, as we allneed more nourishment to "break the fast" aftersleeping. He has been saying that we need toget at least 16 grams of protein at breakfast toget a good start on our protein needs for the day.But, along with animal protein there is often atype of unhealthy fat (whole milk, sausage, evenhash brown potatoes, and other fried breakfastfoods) so you need to choose well. Bacon ispractically all fat, and should be used very, verysparingly, if at all. You can also use the imitationbacon bits (made from naturally low fat soy) inthings like sauces, omelets, quiches, etc insteadof real bacon. To cut back on fat but keep highquality protein, you can use the "egg substitutes"or egg whites (the fat is in the yolk). If you havea problem with cholesterol the elimination of theegg yolks is the most important. But, otherwiseyou can certainly have a couple of egg yolks aweek, and as many whites as you want!

High protein diets are unsafe for most peoplebecause the amount of protein is usually so highthat it can be hard on your kidneys. A normal dietconsists of 50% to 60% carbohydrates (wholegrains, and other complex carbohydrates withmuch less sugar and other simple carbs). But,when you increase protein and fats to try toreplace the carbs, you are not taking in thecomplex carbs your body needs to function.Fats have been shown in many reputable studiesto contribute to cardiovascular problems. Somepeople do lose weight by mistreating their bodieswith these "all you want to eat protein/fat diets,"but I also hear many stories of people who endup in the hospital from these poorly constructeddiets, too. Not something *I* care to risk.

Keep to a sensible diet of complexcarbohydrates, proper fats, and enough goodquality protein (both plant and animal). Leanmeats are best for those who need to increaseiron, for others, plant protein is often a goodsubstitute for at least some of the animal protein.

Soybeans (granules, tofu, etc.) are the onlycomplete protein in the plants, but other beans,legumes, and vegetables offer various amountsof protein, too. It is best to try to get all thenutrients you need by eating as large a variety of

foods as possible, and not to eliminate any onefood or food group. The less you eat the harderit is to get all you need from your food, and thena supplement may be needed.

I would suggest to all who are able to take acollege level class on Nutrition, especially as itapplies to eating well. If you are over 55, manyof the college classes (at community collegesand others) are free or at reduced rates. Callaround to find out. It is very helpful to know allthe facts as there is much nutritionalmisinformation out there.

Beans are very good for you and you can evenmake Bean Fudge and Bean Pecan Pie!

Jann Hartman JKH <[email protected]><http://www.geocities.com/arojann.geo>

Jann and John are now continuing their holidaytravelling through Europe. They flew fromBaltimore, Maryland in the States to the UK viaIceland. They arrived at Heathrow and travelledby train to Lincoln and spent three days with us.We visited some of Lincoln's sites on the Sundayand took them to Newark Station on Monday.From Newark they travelled overnight by train toParis and then again overnight to Rome. Fromthere they visit their son in Sicily. John is a radioham and has his equipment with him and will beattending a ‘meet’ whilst there. They then travelback through Switzerland, Germany,Scandinavia and back to Brussels and the UK fora few days and then fly home on October 24th.

Jann is travelling with a very small scooter thateasily comes to pieces and can be lifted by John.Other than this Jann uses crutches but only forshort distances. The scooter is a flat base witha pole up the front with handlebars and anotherat the back for the bucket type seat.Underneath this is a standard size car batterythat John has adapted to go on and off quickly.John straps one bag to the back of the chair - theone that contains his radio ham equipment!Another small bag goes behind Jann's legs.John has a rucksack on his back and pulls alarge suitcase. They have developed manyideas that others could find useful and on theirreturn will be writing them up for us.

Jann will send us the recipes for Bean Fudgeand Bean Pecan Pie (I am sure you like me havea queried expression on your face) for the nextnewsletter on her return. The proof will be in theeating! More from Jann next newsletter.


Reprinted from FORWARD MOTION,Polio-Post Polio Resource News

of Central Florida, April 2000

DRUGS TO WATCH OUT FORWITH POST POLIO

1. Beta Blockers - e.g. Inderal, Propandolol,etc.

2. Benzodiazapams - e.g. Valium, Diazapam

3. Opiates (central nervous systemdepressants) -e.g. Darvon, Demerol,Morphine, Tylenol 3

4. Steroids - e.g., Prednisone, Cortisone, etc.

5. Muscle Relaxants - e.g., Norgesic, Norflex,(includes also Benzodiazapams – Valium)

We live in a time when most patients wantan instant fix for their ailments, an antibiotic foran illness or a pill or shot for pain. Our doctorsare conditioned to respond to theseexpectations. As we age it is not unusual forpatients to go to a different doctor for eachproblem. This can be especially dangerous asone doctor may be unaware of what otherdoctors have prescribed or the interactions andcontra indications for other conditions. Onedoctor simply can’t be current on everything.Insurance companies and HMO’s rely on theprimary care physician to keep everythingstraight, but that doctor may not be as welltrained as the other doctors or specialists.

This leaves us with a potentially seriousproblem. We, as patients, may innocently take amedication that may cause further problems oreven give us a new ailment completely. As weage we can’t remember everything and manydoctors do not care or have the time to listencarefully to what we have to tell them.

Dr. Paul D. Stolley, M.D. (Professor ofMedicine, University of Pennsylvania School ofMedicine) wrote the preface for the book “WorstPills Best Pills”. In it he states, “For olderAmericans, nothing less than the closestattention to their health problems is adequate.Although many older adults can benefit fromdrugs which lower blood pressure, reduce thepain, and discomfort of angina or arthritis, ortreat other common ailments, they areextraordinarily sensitive to adverse effects ofmedicines, such as drug induced Parkinsonism,confusion, decreased co-ordination, falls and hip

fractures, and mental deterioration. Thus thebest medicine may be no medicine.

But if a drug is needed, the choice couldbe made by the active and informed participationwith a sympathetic and unhurried physician.Furthermore, the continual monitoring of thepatient is necessary after drug treatment isinitiated: is the desired therapeutic effectoccurring? Are there adverse effects? Whenshould the drug be stopped? Is there thepossibility of an undesirable drug interactionbecause of the other drugs the patient istaking?” (Ed. Note. I recommend you read thisbook and refer to it or one like it when newprescriptions come your way.)

Many doctors do not realize that post poliocarries with it drug inter-actions andconsequences that the normal population doesnot have to deal with and, therefore, not manydoctors are familiar with them. They may lingerin affect long after their stated duration.

1. Beta Blockers -- A class of drugs used totreat high blood pressure, angina, irregular heartrhythms, and migraine headaches. A betablocker works by blocking the beta nerve cells.In a simplified way let’s just say that beta cellsmake the muscles contract. It is not for use inany way where breathing is compromised byasthma, allergies, emphysema, or chronic lungproblems such as post polio. Breathingproblems aside. Post polios by definition havetheir nerve pathways damaged by the polio.Anything that interferes with the function of theremaining nerves is not a good thing. (Ed. Note– I was once given a beta blocker and luckily Iwas sitting up when it took affect. I was unableto move and had great breathing distress until itwas out of my system. I was home alone I couldnot even call for help.) These include, Inderal,Corgard, Inderide, Lopressor, Tenormin, etc.

2. Benzodiazapams -- A class of Addictive-drugs used to treat nervousness and sleepingproblems, to relax muscles and to treat seizures.Their adverse reactions include confusion,mental depression, drowsiness, hallucinationsand difficulty co-ordinating muscle use resultingin increased incidence of falls, etc. Due to theproblems with the reticulating activating systemresulting from the polio infection this type ofsedative is not a good idea even if you havesleep problems.

We have enough problems with co-ordinatingthe muscles that are functioning.

We should not be taking something that


interferes with what co-ordination we have left.These include, Valium and Diazepam.

3. Opiates -- A highly addictive centralnervous system depressants and pain killer.Medical texts state that and opiates such ascodeine works best with a non-steroidal anti-inflammatory such as aspirin. All members ofthis class of drugs depress breathing, theability to cough, and the function of theintestines and bladder. In the case of Darvon,studies have shown that it’s level ofeffectiveness is close to that of aspirin alone.All members of this class cause ataxia or lossof the ability to coordinate muscle use. It hasbeen found that when the drug is given locallywith a pump inserted into the spine that it actswith less central side affects. These includecodeine, Darvon, Demerol, Morphine, andTylenol 3.

4. Steroids -- This class of drugs is used forallergic reactions and to reduce inflammation.The use of steroids has been shown to makepolio symptoms worse. It also suppresses theimmune functions, increases osteoporosis, andraises blood pressure. It is commonly used totreat asthma. Make sure you do not have thepost polio lung changes that are oftenmisdiagnosed as asthma and/or sleep apnea.These include – Prednisone, Cortisone, etc.

5. Muscle Relaxants -- This class of drugsworks within the brain and nervous system toblock the ability of the nerves to functiontherefore causing release of muscle spasm andpain. Again, our nerves are not functioning at100% to begin with anything that works tointerfere with function must be avoided ifpossible. These include Norgesic, Norflex,Soma and, in addition, includes the class ofBenzodiazapams.

I have made this information ascondensed as I can. I know you have muchbetter things to do than read a long drytechnical text. It is intended to help you andyour doctor make a more informed choice oftreatment. If you have any questions, pleasefeel free to get in touch with me.

Bibliography

1. “The Merck Manual” 14th Edition, Merck &Co., Inc.

2. “Worst Pills Best Pills" 1988 Ed/ AuthorSidney M. Wolfe, M.D., Lisa Fugate, ElizabethP. Hulstrand, Laurie E. Kamimoto and the

Public Citizen Health Research Group

3. “Physicians Desk Reference” 1998 Ed.Medical Economics Co.

Editor’s Note:- This article was written by J.Ann Singleton, Information Officer of theOrlando Post-Polio Group. She can bereached at 407-260-9238, FAX 407-260-6837,or at her e-mail:- <[email protected]>

LincPIN Editors note - We are all different.We have had polio, have PPS and can haveany other condition as well as PPS. Drugnames across countries are not the same. Thisarticle has been included as an additionalarticle to the drugs leaflet we issue for yourinformation. It is imperative that any healthprofessional that prescribes you any drugs oranaesthetic is aware that you are a poliosurvivor and that you may tolerate what hegives you differently from what he expects.Weaker polio muscles that do not lookatrophied or test as weak on single manualmuscle testing have a larger uptake of drugthan expected.

An example this week is a GP prescribing amember Amitryptaline at 100mg and it zonkedher out. We have another member who slept allday on 2.5mg. I take 5mg and am asleep withinten minutes.

Another member had a Gynae operation eightyears ago with difficulty coming round, longertime recovering in hospital, and longer recoveryat home than expected. This past year thesame operation and ‘just enough anaesthetic tokeep you under’ (anaesthetists words) meantshe was awake drinking tea mid afternoon.

The best advice is to work with the personprescribing the drug/anaesthetic. Discuss thiswith your GP/Consultant ahead of time so thatthis is in your records. If possible and if there istime start at a very low dose.

Please contact us if you have any queries onthis.


N.B. Some articles included in our Newslettercontain technical information that we know

some members do not fully understand. However,Health Professionals treating you will more readily

accept information in this format.

- o -

Polio Biology XI - The Biology of FatigueEddie Bollenbach

A Lincolnshire Post-Polio Library Publication6th August 2000

William Shakespeare, Sonnet XXVII:'Weary with toil, I haste me to my bed.'

Everyone has experienced fatigue, even Shakespeare.It is a reaction the body has evolved to maintain ahealthy steady-state. It is a countermeasure to overuseand acts to avoid damage to muscles and nerves. Ifour bodies, sculpted through millions of years ofevolution, had no way to tell us that it is time to shutdown, we wouldn't have gotten this far. So my firstpoint in this essay is to emphasize that fatigue is notjust the province of people living with post-poliosyndrome. Everyone in the human family hasexperienced fatigue.

One area of the biomedical literature which hasexamined fatigue, and its components, is thediscipline of sports medicine. The 2000 SydneyOlympics is on the docket and you can be sure thattrainers and sport's physicians are studying everyaspect of fatigue that can effect their athletes. Why?Fatigue degrades performance. An understanding ofall of its manifestations allows athletes to take steps toavoid and minimize the likelihood of a poorperformance.

Of course we with post-polio syndrome live withfatigue. It is a much more common state for us anddoes not abate easily and normally as it does for anathlete. We have to be especially careful about it andalso knowledgeable about it if we are to improve ourlives.

Elite athletes know about fatigue to win medals, wemust know about fatigue to improve our lives. Whoknows more about the biology of fatigue, the eliteathlete or the post-polio survivor? I hope this essaycan help improve our general knowledge, from thebiological perspective, and allow us to intelligentlyuse this information to improve our lives.

Biology of Fatigue.

Throughout this series we have mentioned the motorunit. This is the nerve/voluntary muscle unit ofcontraction. The nerve depolarizes (that means thecharge on the outside of the cell membrane (+) rushes

inside (-) resulting in the charge on either sidecancelling). This depolarization moves along thenerve away from the Central Nervous Systemeventually to a voluntary muscle. When an activityrequiring muscle contraction begins (running is agood example) the rate of depolarization and re-polarization (which requires energy) is rapid in themotor unit. The nerve cell depolarization triggersdepolarization in the muscle cell membrane. Themuscle cell depolarizes and the muscle fiber contracts(shortens) due to the activity of proteins inside themuscle fiber. The muscle and nerve quickly recoverand re-polarize. This uses nutrient energy. Then theyfire again. If this rapid firing is not interrupted, eitherby other motor units taking over (which we lack- seePolio Biology X), or because of maximum intensityexercise over a long period, the nerve, nerve/musclejunction, and/or the muscle fiber itself will fatigue.

Inside the nerve the energy used to re-polarize themembrane is derived from specialized molecules,nutrients, and enzymes. As they become depletedwaste products accumulate. If the waste productsinterfere with normal energy production andutilization we have metabolic fatigue inside the cell.The same can happen in the muscle fiber wherechemicals like lactic acid, ammonia, and creatinebuild up faster than they can be excreted. All of thisbiochemistry, which may manifest as a feeling ofburning inside a muscle, cramping, weakness, pain, orcreepy crawly feelings are the result of fatigue,specifically localized fatigue. Any fatigue in thenerve, muscle fiber, or entire motor unit (muscle andnerve) constitutes localized fatigue.

If fatigue occurs in any nerves above the motor unit itis called Central Fatigue. It too is a commonprotective mechanism for the muscles and nervesbelow it and athletes experience it mostly as aconsequence of over training. I get the sense thatmany polio survivors think that Central Fatigue isreserved for them and is a unique and disturbingsymptom not known to others. This is not so.

There is a way to measure the magnitude of subtypesof Central fatigue. If you use a small electric shock tostimulate a muscle and measure the maximum forceof contraction you can use this as a baseline ofstrength of contraction. If you then prompt a person tocontract the same muscle as vigorously as possibleyou can measure the difference between tetaniccontraction (of the unit with the electric pulse) and themaximum voluntary force possible. This is onemeasure of one subtype of Central Fatigue. We don'tknow a lot about Central Fatigue at the molecularlevel but it manifests itself, often, as a loss of drive ormotivation to perform. Again, one can appreciate therole of Central Fatigue in protecting the nerves andmuscles by inhibiting their over work at the level ofthe Central Nervous System.


There is a part of the human brain you may haveheard about: The Reticular Formation. Nerve cellfiring there keeps us awake. Some say, or have said,that polio damage has affected the reticular formationand that this is why some of us sleep so much andcannot easily rouse. I think this would be a verydifficult idea to prove because of the complexity ofthe arousal system and the role of Central Fatigue inoverwork, blood gases, and other factors. If youexperience a blow to the head the neurons of theReticular Formation can all depolarize and you willbe rendered unconscious. If re-polarization occurs(hopefully in a short while) you will awaken.Anyway, this depolarization and re-polarization ishow all neurons work.

Let's get back to Central Fatigue. Any negative effecton muscular performance, which is generated abovethe motor unit, is Central Fatigue. This includesinhibitory processes arising in the brain. We knowless about this but we do know that it occurs inathletes as well as in polio survivors. The CentralNervous System is involved to a large extent in theregulation of muscular activity. (Bompa 1990)[1].Elements within the Central Nervous System result ina number of psychological factors, and emotions,which can degrade muscle performance and result ina loss of drive due to Central Fatigue. (McComas1996)[3].

During prolonged exercise in an athlete, or during anyactivity which exceeds the fatigue point for a poliosurvivor, the blood chemistry changes. Amino acids,which make up proteins, change with respect to theirrelative abundances. Those amino acids withbranched chains decrease and fatty acids increase.Examples of branched chain amino acids are leucine,isoleucine, and valine. Tryptophan is an amino acidbut is not a branched chain amino acid. The ratio orTryptophan/BCAA rises during fatigue, which resultsin a biochemical alteration of tryptophan to 5-hydroxytryptamine (5-HT) in the brain. You mayknow (5-HT) by its more commonly used name ofserotonin.

To make a very complicated story short serotonin canact on serotonin receptors in the brain to cause sleepand also increase the mental effort (motivation)needed to maintain muscular activity. It's all rathercomplicated chemically, and this is but onetheoretical biochemical pathway of many that helpsexplain Central Fatigue.

We've also heard of dysfunction of the hypothalamusand pituitary to explain Central Fatigue in post-poliosyndrome. As is to be expected, these areas areimplicated in Central Fatigue for elite athletes too.Possible indicators of Central Fatigue, cited byLehman et.al. (1993)[2] include an impaired

neurotransmitter metabolism, with increased cerebral5-hydroxyrtyptamine (5-HT) concentration, partialhypothalamic and pituitary dysfunction, with resultantdysfunction of the neuro-endocrine axes.

It has been observed that over-training in athletes(which happens often for our normal activities) resultsin faulty prolactin metabolism as well asadrenocortical insufficiency. Well, enough of thebiochemistry.

Suffice it to say that fatigue is a complicatedphenomenon which involves motor units and the CNSand regulates the body by preventing overuse onmany levels. There is not much difference in the CNSaspects of fatigue comparing elite athletes and poliosurvivors in my opinion. We just must do more withless and get to fatigue sooner.

I've never heard of anyone trying Branched ChainAmino Acids to help with Central Fatigue but Ibelieve they are available at health food stores. To doany good (and they may not) you probably need 10 to20 grams. Ask a physician before you try this. Thefatigue is there for a purpose. If you reduce it withoutaddressing the root of it you could hurt yourself.

References.1. Bompa TO (1990): Theory and methodology of

training: The key to athletic performance. (2nd ed.)Dubuque: Kendall/Hunt Publishing Company.

2. Lehmann, M., C. Foster, and J. Keul.Overtraining in Endurance Athletes: A Brief Review.Medicine and Science in Sports and Exercise. 25(7):854-862, 1993.

3. McComas AJ, Stuart DG, Thomas CK and PiercePA (Eds) (1996): Fatigue: Neural and muscularmechanisms. New York: Plenum Press, pp. 457-469.

Linda Wheeler DonahuePolio Survivor and

Professor Emeritus of Humanities writesDon’t overdo Physical Activity.

For those who have had polio, the mantra is:"Conserve to Preserve." The more motorneurons you preserve, the more capacity you willhave in the future. Each day, focus on pacingactivity with rest breaks, recline and restore.Take frequent rest periods during the day withyour feet elevated as high as possible. Don'toverdo physical activity.

There is no cure for Post-Polio Syndrome. . . nomagic bullet to restore our vitality. The onlymeasure available to slow down the progress ofPPS, albeit undramatic, drudging, and boring, is'conserve to preserve.'

More from Linda Donahue next newsletter.


Illusions by Judy Sander

How many of you ignore that you have adisability? Be honest. We ignore our disabilitiesbecause the word "disabled" was and is a stigmato be avoided at all cost. It was especially astigma when we were recovering from polio. Wewere taught during and after polio that the onlyreason we might not conquer the aftermath ofthis horrid disease would be that we were weak,lazy, and did not try hard enough. So, many ofus have created illusions that we are notdisabled or we may accept only a portion of ourdisabilities within our illusion. We pretend that ifwe wear certain clothing, stay home, smile inspite of our pain or lack of breath, no one willnotice. By doing this, we are not only hurtingourselves but also those who care for us.

Of course, there are different degrees ofdisabilities but alas, many of us try to ignorethose that we should not. Have you created anillusion concerning your disability? This may bethe time in your life to face reality, the completereality of your abilities and disabilities.

I had polio when I was six. I was paralyzed andvery ill for eighteen months and at the age ofseven, I weighed a mere twenty-seven pounds.After six surgeries, years of therapy and more, Ihad conquered polio. At least the illusion wasthat I had conquered polio.

I am not sure when the illusion, that I was notdisabled began. Possibly, it began during theillness itself. Or during therapy? Could itpossibly have been that my family considered itan illusion and the thought penetrated my verybeing. Or is it because I was taught bytherapists, doctors, nurses, Mom, Dad, and otherrelatives, through out my illness and recovery,that I could not show weakness, refuse a task,and to never ever give up? If I did, it wouldprove that I lacked initiative. However, if I triedmy very best, never complained, believed I coulddo anything, everyone would love me and acceptme.

After the age of 13, I pushed into things I neverhad done before. I played softball. I ran. (Well, Ithought it was running.) I even became a bandmajorette, limping as I marched and dropping thebaton every so often. I somehow had convincedthe band director that I could twirl the baton andmarch.

At the Cheyenne Frontier Days parade, myillusion was broken when a large bone droppedthrough the muscles in my right foot. A cast forsix weeks seemed to correct this problem but my

majorette dream, became a bad memory.

In my late teens and early twenties, it waswonderful to wear high heels. No more brownbuilt up shoes for me. In fact, never would Iwear a brown shoe again. Short skirts withshaded hose, added to my wonderful illusion ofperfect legs and a perfect gait plus no one wouldsee the scars.

Three pregnancies with four children certainlyunderlined my illusion of not being disabled. Ordid it? Home movies show me limping. Homemovies of my children's birthday parties showthat although I am smiling, I recall the pain andfatigue. A movie of mountain camping with fourchildren only brings memories of the pain. Thepain of carrying twin babies while pulling a six-year-old away from a riverbank is unforgettable.Pain pills were a main stay. Falls were acommon occurrence. Even my children, limpedwhen they walked besides me, bobbing together.Cortisone shots to the hip joint were a monthlyevent. Almost all of my memories of these goodold days include the pain of overused, weaklimbs.

In my 40's, my illusion began to fade. A canebecame necessary for walking any distance.Then a fall at a sports event fractured severalvertebrae because I wanted to look stylish,impress my husband with high-heeled boots andof course, the cane was in the car. No onewould ever think that I had a problem, that I wasdisabled. Of course, they saw me limp and theysaw me fall. They knew. I had the blinders on.

Still in my 40's, it was common that when mymother visited and we went shopping, she foundme a place to sit down and rest at each store.Fairs, antique shows, walks on the beach, sportevents and more, became impossible. Myhusband and my family did less together as timewent by.

When I travelled to Europe in 1989, the 70 and80-year-old fellow travellers went where I couldnot. They climbed the steps at St. Michael's inFrance; they walked the length of everycathedral. I stayed behind. Sometimes with aman in a wheelchair, but often he could gowhere I could not.

Two years ago I helped start our local Post PolioSupport group. This was a big step in acceptingmy limitations. After watching, listening, andtalking with many of our group members I slowlybegan to let go of my elusive illusion.I watched how many walked with more graceand smoothness than I did, yet they were


wearing braces on both legs. Even those withcrutches and braces moved quicker and weremore stable than I. I noticed that those inscooters and wheelchairs were not limping,grasping for falling canes, or grimacing frompain. A light bulb began to glow in my mind.Perhaps, just maybe, I am disabled. Perhapsmy doctors are correct, maybe I do need abrace and just maybe, a portable wheelchair inthe trunk of my car.

Right before Thanksgiving in 1999, I was fittedfor an AFO for my right leg. Of course, theprescription said to go for a full leg brace, butthe illusion, although becoming dim, is stillthere. "No, I will get by with the AFO", I told myOrthotist.

What a wonderful Thanksgiving and Christmasholiday. What wonder to have one leg stable.The fatigue was less at the end of the day. Thepain in that leg was less. I was even able toprocess down the church aisle for the choirconcert in December, the first time in years. Myhusband, who was in the audience, could notfind me as we processed. Why? He waslooking for the blonde-haired woman thatlimped.

Why did I not get a brace when a concernedDoctor recommended it, in my 40's? If I hadneeded glasses, I would have not hesitated. Ofcourse we know the answer; the illusion wasstronger than the reality.

I am still working to face the complete reality ofmy disability. No, not to make it more or less,just to accept it for what it is. We must face thereality that we are only fooling ourselves withour illusions. By obtaining proper bracing, ascooter or whatever it takes, will not onlyimprove our lives but will lessen our chances ofcreating even a worse disability. Consider afractured hip, arm, or pelvic. We must have thecourage to accept reality and to ignore theillusions we have created about our disabilities.

I hope that as you read this you will stop, look,and examine your abilities and your disabilities.Look at yourself objectively. You very well couldwalk straighter, limp less, have less fatigue andpain, by stepping forward in obtaining braces or(horrors) by using a wheelchair or scooter. Youcould possibly do more things and embrace lifewith increased vigour. Your family and friendswill enjoy you more. You will enjoy them more.Relax, smile, face reality and throw yourparticular illusion out the door. Life is waitingfor you.

Judy Sander, 3/2000

Network Spinal Analysis

Hilary and I were asked by Vic and Joan to visitwith them and experience some treatment thatthey had been having in Australia and were nowhaving here in the UK. Hilary had not seen Vicfor nearly a year and could see a definiteimprovement in his walking. We enjoyed thetreatment. It was relaxing, soothing, gave you asense of wellbeing and following the first twotreatments the pain left my shoulders and arms.Unfortunately for the third treatment and to usethe toilet I had to negotiate three flights of stairswhere I had to pull myself up with my right armand some pain returned. The pain is now bad inmy shoulders and arms but I think that isbecause I am now having problems steering myscooter. Hilary said she felt ‘taller’ her spinestraighter and generally her joints less stiff. Thiswas only a short session but if a therapist wasnearby and money available then we both feltthat we would try a longer series of treatments.As with many alternative therapies, the timebeing spent on you personally really can make adifference.

Richard L Boone. <[email protected]>

Raffaello Sciffo, D.C. explains NSA.

Several months ago I was approached by MrVictor Oliver, who mentioned that he had hadNetwork Spinal Analysis (NSA) care inAustralia, with relatively good results. Wedecided to embark on an intensive course ofvisits and achieved once again, good changesin his health and overall wellbeing.

Most significant of these were that he no longerneeded to use a cane, he could walk longerdistance without tiring and muscle mass fromhis thigh and buttock area that had atrophied,had come back considerably.

Due to these great results and Mr Oliver and hispartners enthusiasm, we decided to try a shortexperiment with two other Polio people. Younotice I use the word 'People' not victims,patients or sufferers. The reason for this is thatthe terms all signify a separation. A victim and apatient are all acted on by an outside (orinternal) force, which is separate from your Self.This is an important concept to keep in mind.

Due to the positive results those two peopleexperienced I was asked to write a brief


explanation of what it is that I do.Normally what NSA tries to do is make your bodymore consciously aware of the tensions it isholding. Once these tensions are let go of, thenervous system is freed up to work on othertasks. The freer the nervous system is to focuson other tasks, the more efficient it is, and theless intense are the symptoms it is manifestingdue to ‘exhaustion’.

What is Network Spinal Analysis?:

Network Spinal Analysis (NSA) is a Chiropracticmethod that was developed by a ChiropractorDr. Donald Epstein in America, initially in theearly eighties.

It is so different from traditional Chiropractic thatit has recently been officially separated from it,although only Chiropractors so far, are able toachieve training and certification in it.

What does NSA actually do?

It focuses on making your nervous system workmore efficiently. What people find most amazingis that the largest ever study of NSA with over3,800 people over 3 years, showed that therewas no plateau in their improvement!

This shows the body seems to have no limit inoptimising its healing potential.

The study was not limited to physical symptoms.The six areas monitored in the study done bySociologists at the University of California, Irvinewere:

1) Physical Improvement(symptoms) 64% Improved

2) Less Stress 66% Improved

3) Emotional and PsychologicalWell Being 64% Improved

4) Life Enjoyment 69% Improved

5) Positive Lifestyle Changes76% Improved

6) Overall Quality of life improvement59% Improved

How, technically speaking, does NSA workNSA is a gentle technique that involves, unlikemost other health care methods, training thenervous system to function more effectively. It isbased on the four tenets of Chiropractic that are:a) That the nervous system is the master

controller and co-ordinates all the actions orthe body from making new blood cells toproducing insulin.

b) That the housing of this system (spine andskull) is capable of being distorted whichcan affect the nerve systems functioning.

c) That these distortions causing nervemessage irritation lead to inappropriatemessages being transmitted, and thuswrong actions taken by the body.

d) Those consistent inappropriate bodyresponses can lead to ill health,

How NSA is so different from most other types ofcare, including even to some extent Chiropractic,are its concepts of healing.

Concept 1 Healing versus Curing:.

In Curing you are concerned with the symptomsand getting them under control. The goal is toget you back to where you were before youdeveloped those symptoms, or what isconsidered normal or average for the population.

Healing on the other hand sees symptoms as away the body is trying to communicate to youand let you know what it needs, or what you arenot doing optimally e.g. the feeling you get afterone too many drinks. Its goal is to teach youabout yourself so that after the 'crisis' youfunction at a higher level, you become greaterthan what you were.

It must be noted that curing may be an essentialpart of the healing process.

Concept 2 Myths and misconceptions aboutHealing:

Many misconceptions are held by westernsociety in regards to healing science that are 'tooadvanced for the lay person to understand,'

Two examples include;

1) The more serious your illness, the longer therecovery will take. Also, if the conditions is moreserious, the treatment needs to be moreexpensive, more dangerous and more invasive.E.g. Cancer versus the common cold.

The body does not work in a linear fashion,invasive methods may have little effect and abrief comment by someone may change your life(and thus health) forever.2) The body works like a machine, with differentbits having different life spans, so at a certainage, it is expected that a certain body part ‘wearsout’.


The body works more along the principles ofquantum physics than mechanics. It isconstantly repairing itself.

Your body replacesyour stomach lining every 5 days

and your skin every 4 weeks.Your body makes

a new liver every 6 weeksand a new skeleton every 12 weeks.

If this is the case, why is an injury from 10 yearsago, still bothering you?

The basis of all the concepts of NSA isSEPARATION.

As you are part of the population of a city orcountry, or perhaps a team or an assembly line,so are your cells part of you. A community of 75trillion individuals working together, with apersonality of its own.

If all members of a team are communicating well,not only do they work well, but (a) they willconstantly improve on their efficiency; and (b)they will have FUN.

The moment communication starts to breakdown, small groups form and they take on theirown identity. If you focus on them as theproblem, persecute them, attack them, ignorethem or otherwise focus on your differences andseparation, you give them power and autonomy.This is the whole principle of medicine and in factof much of our society, as we know it.

The other option is to focus on the similarities,and try to tighten up the bonds between theparties. To create more unity and wholeness.

Symptoms are the bodies way of letting us knowall is not well, that communications have brokendown and that attention to our lives is now morevital than ever.

Too many of us want to quieten the messengerthat brings us this information, with painkillers,anti-histamines, anti-depressants, anti-inflammatories, and anti anything else we cancome up with that we do not want to feel.

Others take to learning from the experience andlistening to what it has to teach us regardingourselves. They turn to yoga, meditation, TaiChi and other more internally guided types ofhealing.

Neither is better or worse, only appropriate for

the individual. With NSA we do however focuson the latter. We want to get people more intouch with their essence, their true selves, and tomaximise their experience of life.

The study shows just how effective we are inthese areas with people spontaneously changinghabits and lifestyles. Sixty nine percent had agreater life enjoyment. and a full seventy sixpercent did undertake some positive lifestylechanges.

But what are the real nuts and bolts of how itworks?

The Chiropractor lightly touches the spine with apressure ranging from that of a feather, to adecent prod, placing the brains awareness onthat area. The brain then processes theinformation and if it finds the tension locatedthere to be no longer vital to the body, it just letsit go.

Due to the nature of the work, in changing abodies habit, the visits are frequent and short.Usually the Chiropractor will see the personthree times a week for several weeks beforecutting down to a less frequent schedule,

Why Group Adjusting?

We adjust people in a group room because it hasbeen shown to reduce tension and enhance afamily atmosphere in the practice. In NSA it hasbeen shown to significantly enhance the healingprocess.

How much time does it take?:Initial consultation takes 1 hour. Follow-up visit.-,generally take about 15 minutes, unless you areacute in an emergency situation.

So, that's NSA in a nutshell. For furtherinformation or to look for a Chiropractor neary o u , g o t o t h e w e b s i t ewww.networkchiropractic.co.ukor call 01865 377877.

Helpers Simply Helping Simplyby Art Coburn

My Nancy is vertically challenged, in today'snewsspeak, and today, as happens nearly everytime she goes shopping, she had to ask anothercustomer to please get her something that wason a shelf way too high for her to reach. Thishappens quite often but she's had the problemall her life. Sound familiar?

What I'm getting at is simply this: At various


times in the lives of most people, disabled or no,we simply have to ask for help. And you can'task for much simpler help than, "Please, sir,would you get that can of beans for me? I can'treach it. Thank you."

Where do you and I, PPS-ers all, find this simplehelp?

May I be so bold as to suggest the local church?In the Christian New Testament, James wrotethis in the 27th verse of the first chapter:

"Religion that God our Father accepts aspure and faultless is this: to look afterorphans and widows in their distress andto keep oneself from being polluted by theworld." (James 1:27NIV)

The rational and logical understanding of thisverse includes all who need help, not just theorphans and widows. Period. Does that includeyou and me? Definitely, my polio friend,definitely. Actually, the man who helped Nancyget the can of beans was simply putting thisinstruction into action, whether or no he was inthe Church.

Many of us belong to a PPS Support Group, butthere we find that most of our friends are in thesame shape we are or they may be even worseoff, so when we need a bit of physical help withsome household chore that we simply cannotaccomplish, our Support Group cannot providemuch support, can it? But if your church aroundthe corner is also a support group for you, thenyou will have another means to defeat that oldpolio dragon, won't you?

So if we say that the local church is a supportgroup to help us in our daily lives, then let'sdefine a Support Group as a tool, defining a toolas some thing we use to help us get along inlife. Just as a carpenter cannot drive a nailwithout a hammer or cut a board without a saw,we cannot go to the mailbox without awheelchair, callipers/braces, a cane or crutches,or an electric scooter. A tool is a tool is a tool,whether it is inanimate or animate. Now let's usea syllogism to illustrate what I mean about usingthe Church as a tool:

A. A Support Group is a tool for you and meto use.B. A Church is a Support Group (at least forits members).C. Therefore, a Church should be a tool foryou and me to use.

We had a very large branch fall into our yard the

other day, but it didn't do much damage. Thebranch was about 22 meters (75 feet) long andabout 3/4 of a meter (about 30 inches) through atthe end where it broke from the pecan tree.Obviously much too big a job for Nancy and meto take care of, so I called my friend andneighbor who lives about a mile away to comelook it over. He's also a deacon in our churchwho really lives up to his office. When he cameover he said he'd show up the next morning andI figured I could help him then (mornings are bestfor me), but he and his grandson came aftersupper, so my granddaughter and I went out tohelp with the clean up, and a good time was hadby all, really. It didn't hurt that the grandson andthe granddaughter were near the same age,either.

If my friend and neighbor had been unavailable -it is haying season for him, there are other menin the church I know that I could call. But onoccasion I have called the church office andsimply said, "I need a bit of help," and got it.

The problem is, We Simply Hate To Call ForHelp! I know I do. If there is some possible waythat I can get something done, then I'm juststubborn enough, and stupid enough, to goahead and do it. Then, like you, I pay for it later.Dumb. Dumb. Dumb.

"When push comes to shove, your POV willchange." In the last few years, push has cometo shove, and my point-of-view has changedmarkedly. The unfortunate thing is that myfriends that I call for help are all getting older.My friend and neighbor who cleaned up the treebranch for me is 73, but can easily work meunder the table anytime. So when I needyounger help, I may simply have to call thechurch office and say to the secretary, "I needsome help, please." The help may not beinstantaneous, but what help is in this life? Evenwhen you pay for it!Do we have a misplaced sense of loyalty? Orperhaps a sense of confusion as to what themission of the church around the corner reallyis? Perhaps you are afraid that they will wantyou to "tithe," or pray, or some other ritual thatyou may not be familiar with. So what? Behonest with them and explore your doubts thatthey can really help you. Or even that they reallywill help you. For free, too.

Obviously I am writing this from a Christianperspective, but to the best of my knowledge allreligions usually have some sort of service policyfor the poor at least. Our church has a walk-incloset full of canned and dry foods to give tothose unfortunates who come to the church door


saying they have no food in the house, and ithappens more often than we, the laity, know. Byextension, as I said above, the local church'sconsciousness regarding those who need a bit ofphysical help now and then, can be and shouldbe raised, whatever the religion or denominationof the particular church, assembly, synod,synagogue or temple.

It isn't just us PPS-ers, you know. Nancy and Ilive in Florida, USA, and this is a "retirement"state. Our church membership is heavy withthose over 60, so our pastor and some of thedeacons spend a lot of time in the city at each ofthe hospitals with the folks getting kidneytransplants, heart transplants, x-rays, MRI's, andon and on. A religious fellowship of whateverkind, to be worth its salt, must support itsmembers whether in the birthing room, thefuneral parlour or the ICU. It is a tool to be usedby its fellowship. You and I, my polio friend, areunder that same umbrella, and when you getthere, under that umbrella that fits you, then youwill find life to be just a bit less stressful, knowingand being comforted by the simple promise ofhelp when you call. Do try and develop yourfriendship with your local church. I think you willbe surprised and pleased, and I also believe thatyou may find a new usefulness in yourself withinthat fellowship.

You may email Art Coburn at: [email protected] view pictures of the Coburns go tohttp://www.photopoint.comThen type in the above email address in the"Visit Album" box.

Articles added to theLincolnshire Post-Polio Library

sourced on our WebSitesince last newsletter

Reminder - All the medical articles printed orreferenced in this section of the LincPIN’s aresourced in full in the Lincolnshire Post-PolioLibrary on our WebSite. For those of you withoutaccess to the Internet who would like copies ofany article they are available from us for theprice of photocopying. Members post free.

Title: Dr. Henry writes about the Virginia PolioEpidemic of 1950

Author(s): Henry Holland MD

Original Publication: Central VA PPS Support Group(PPSG)'s newsletter, The Deja View, in August/September 2000.

Abstract/Extract: I contracted polio on Sunday,September 17, 1950, entered the polio isolation wardon the ninth floor, south wing of the Medical Collegeof Virginia Hospital on Saturday, September 23 andwas discharged almost three months later on Monday,December 18. In addition to the isolation ward, Ispent time on nine west during post isolation, and themajority of my hospitalization on five south and fivewest in convalescence and rehabilitation. The event ofpolio changed my life thereafter. Until recently, I hadlittle interest in the polio events of that year. Withhelp from the Virginia Health Department, Divisionof Immunization, and newspaper records fromRichmond Newspapers, I have learned that 1950 wasa record year for polio in Virginia and that Virginiaranked second in the nation in the incidence of polioper capita in 1950.

Title: Polio Biology XI - The Biology of Fatigue

Author: Eddie Bollenbach B.A., M.A.

Abstract: Elite athletes know about fatigue to winmedals, we must know about fatigue to improve ourlives. Who knows more about the biology of fatigue,the elite athlete or the post-polio survivor? I hope thisessay can help improve our general knowledge, fromthe biological perspective, and allow us tointelligently use this information to improve our lives.(Included in this newsletter - page 16)

Medical Articlescontinued from previous page

Title: Poliomyelitis and the Post-Polio Syndrome

Author(s): Burk Jubelt and Judy Drucker.

Original Publication: Chapter 34. Reprinted fromMotor Disorders edited by David S. Younger.Lippincott Williams & Wilkins, Philadelphia © 1999

Abstract/Extract: In the first half of the this century,epidemics of poliomyelitis (polio) ravaged the world.In the epidemic of 1952, over 20,000 Americansdeveloped paralytic polio. With the introduction ofthe Salk inactivated polio vaccine (IPV) in 1954 andthe Sabin oral polio vaccine (OPV) in 1961, thenumber of paralytic cases decreased to a handful peryear. Polio had vanished and no longer was on the

Members Email list - If you are on the Internet and would like to be subscribedto our Members Email Discussion List then please email us at [email protected]

FREE EMAIL UPDATING SERVICE OF ADDITIONS TO OUR WEBSITEInformation on top of the Whats New Page.


Lincolnshire Post-Polio Network - Registered Charity 1064177UK Membership - Life Member (LM) £100 or £5 x 20 months S.O. - Member £10 a year.

(All UK Memberships payable by Standing Order - Form on request)Renewal dates are the First of the Months of Feb, Apr, Jun, Aug, Oct, Dec.

Please make cheques payable to ‘Lincolnshire Post-Polio Network’European Membership - LM £125 - Member £12.50 a year - Newsletters by airmail.USA/Canada Membership - LM US$250 - Member US$25 a year - Newsletters by

airmail.(US$ checks to Lincs P-P.N. c/o 4212 Blanding Blvd, Jacksonville FL 32210, USA)

Other Countries please contact for details.

All donations will be gratefully received

LincPIN Newsletter - December 2000Articles for publication by November 20th - Publication date 5.12.2000

All enquiries, book requests, medical article requests, fees, items for newsletters, donations toLincs P-PN, 69 Woodvale Avenue, Lincoln, LN6 3RD, UK

Tel: +44(0)1522 888601 Fax +44(0)1522 885115 by request or +44(0)870 1600840 24 hoursFounder & Chairperson - Hilary Hallam <[email protected]>Honorary Secretary - Wendy Grimmitt - <[email protected]>

Vice Chairman/WebSite Administration, Chris Salter - <[email protected]>UK Treasurer, Frank Grimmitt - <[email protected]>

Committee Members - Phil Bilton, Janice Eary, Ted Hutchinson, Jennifer McGowan.

consciousness of Americans. The elimination ofpolio was a tremendous achievement for scienceand American medicine. However, in the late 1970s,survivors of paralytic polio began to notice newhealth problems that included fatigue, pain, and newweakness, thought not to be "real" by the medicales tab l i sh ment . The term "pos t -po l iosyndrome" (PPS) was coined by these patients toemphasize their new health problems. This chapterreviews acute poliomyelitis and the related PPS.

Offsite Article byBurk Jubelt & James Agre

Linking Evidence and Experience:Characteristics a nd M a na g ement o fPostpolio Syndrome

http://jama.ama-assn.org/issues/v284n4/full/jct00011.html

Author(s): Burk Jubelt, MD; James C. Agre, MD.Published: JAMA Vol. 284 No. 4, July 26, 2000.

Introduction: Postpolio syndrome (PPS) refers tonew, late manifestations occurring many years afteracute poliomyelitis infection. Over the last 25 years,PPS has become a relatively common problemencountered by primary care physicians. A 1987National Health Interview Survey estimated thatabout half of the 640,000 survivors of paralyticpoliomyelitis in the United States had new late

manifestations of PPS. Subsequent studies in the1990s have found the occurrence of PPS amongpatients with previous poliomyelitis to range from28.5% to 64%. The average time in various reportsfrom the acute poliomyelitis until the onset of PPSis about 35 years, with a range from 8 to 71 years.However, it is unclear if the occurrence of PPSincreases with aging, which may be the case basedon the most accepted etiologic hypothesis. The largenumber of PPS cases presently being seen isprobably due to the poliomyelitis epidemics of the1940s and 1950s.

Documents

25th September 2000 Department of Health's position on PPS