Polio Recovery and Post-Polio Syndrome Journey
In the journey of polio survivors, the discovery of Post-Polio Syndrome brings relief and validation. Despite challenges and disbelief, the recognition of PPS sheds light on ongoing symptoms and struggles faced by individuals once stable after polio. The journey for a diagnosis unfolds with obstacles, resilience, and the quest for understanding in the face of new issues. Survivors navigate through uncertainty and skepticism to find solace in the acknowledgment of PPS and its impact on their lives.
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Polio, Recovery, Stable Years, New issues The Journey for a Diagnosis Author:- Hilary Boone, Founder Treasurer and Newsletter Editor Polio Survivors Network. www.poliosurvivorsnetwork.org.uk Polio Survivors Network October 2018 1
Polio, Recovery. Stable Years, New issues, The Journey for a Diagnosis The slides have been placed in this order to help new enquirers.. Slide 3 to 8 Learning Post Polio Syndrome exists Slide 9 There are things you can do to make life easier Slide 10 12 Back to basics. Polio Slide 13 Time Line Polio and Recovery Slide 14 Time Line - Stable Years added Slide 15 Time Line New Issues added Slide 16 Symptoms of Post-Polio Syndrome Slide 17 20 One possible explanation why this happens. Slide 21 24 Another explanation, polio graded muscles. Slide 25 26 Criteria for a Diagnosis of Post-Polio Syndrome Slide 27 Problems with the Diagnostic Name. Slide 28 My Journey for a Diagnosis. Slide 29 - 31 Problem 1 - Manual Muscle Testing. Slide 32 Problem 2 - Not enough facts taught at Medical Schools. Slide 33 34 Problem 3 Which lady is the Polio Survivor? Slide 35 36 Problem 4 - The way we present out symptoms. Slide 37 Problem 5 Facts in Medical articles Slide 38 46 Changes in actions of daily living 2000 with 2018 added. Slide 47 49 My Polio Life a self-assessment tool, some tips to use. Slide 50 Told the most powerful slide of my presentations. Polio Survivors Network October 2018 2
THIS IS HOW WE FEEL BEFORE WE FIND PPS EXISTS 2 Years ago I could walk 5 miles with ease... Now I am in pain after 25 yards .. 5 years ago I was taking stairs two at a time Now I am going up right foot first and pulling myself up with my arm . Each new decline adds another black cloud and more STRESS Why are my reported symptoms not being corroborated? WHAT IS WRONG WITH ME? Polio Survivors Network October 2018 3
THEN WE FIND OUT, most often from A NEWSPAPER ARTICLE that there is ANOTHER STAGE TO POLIO! Other Polio Survivors are reporting similar problems . It s most commonly called PPS Post-Polio Syndrome. PPS Conferences started in 1980 This could be the reason for my symptoms I don t have MS and Alzheimers I am not going mad .. Phew A Big Reduction in STRESS Levels Polio Survivors Network October 2018 4
Stress Levels return when we meet more Brick Walls. Are you sure you had Polio? You look fit and healthy to me? There is nothing wrong with you, all the tests are negative. [There are no tests it is a diagnosis of exclusion] Your pain down your left side is all in your mind. Post Polio Syndrome what is that? Post-Polio Syndrome does not exist. Post-Polio Syndrome - I have just read something about this new condition It is NOT a new condition. It was first medically recorded 143 years ago in 1875. Polio Survivors Network October 2018 5
Have you said BUT I AM NOT THERE YET!? Rehab Clinic Doctor asked me Who wrote these newsletters, LincPIN Vol. 1, issue 1 to 5. I proudly replied, I put them together I replied BUT I AM NOT THERE YET He then said, When are you going to take the advice you have put in here? I sat back in my chair. It was not easy hearing this! He replied, Sorry but I have news for you that you have been there for some years now He looked at me for a minute then said, NB PPS Support Groups will tell you that the most often heard comment from Polio Survivors when they first contact them is . BUT I AM NOT THERE YET Will you please start taking this good advice and I will see you again in six months and hope to hear you are managing life more easily. Polio Survivors Network October 2018 6
Have you answered questions like the Polio Survivor depicted below? Can you get up a flight of stairs? I am a Polio Survivor I have never admitted defeat and I am not going to start now. Can you walk? Can you get yourself a meal? Yes Yes Yes Polio Survivors Network October 2018 7
Had you been asked How do you? what would you have said? Can HOW DO you get up a flight of stairs? Can HOW DO you walk? Can HOW DO you get yourself a meal? Well, I have to go one step at a time pulling myself up with my right arm, it exhausts me. I use crutches and swing my legs through. I buy mostly prepared foods now as I can t stand for long, my arms are weaker. Mostly frozen wait for the DING food. Polio Survivors Network October 2018 8
ACTIVITY BEFORE AND AFTER CHANGE Time Day Time Doing Time Resting Pain Level Fatigue Level Getting up, showering and dressing 8 - 10 30 mins 90 mins 3 5 Change to showering Underwear and calipers Top Clothes LESS PAIN AND LESS FATIGUE SAVED TIME RESTING 8.00 9.00 15 10 5 30 mins 10 10 10 30 2 3 60 MINS Walking round one shop pushing trolley Doing the Town Centre using electric scooter, walking in shop where necessary, no bag carrying. GAINED TIME DOING SAVED TIME RESTING LESS PAIN AND LESS FATIGUE 11.00 2.15 15 mins 180 mins 4 7 11.00 4.00 180 120 165 mins 60 mins 2 4 Pacing and Resting, Using aids, assistive devices and help WORKS Polio Survivors Network October 2018
WHAT IS POLIOMYELITIS POLIO is the name given to three of over 90 enteroviruses. Polio I Brunhilde, Polio II Lancing, and Polio III Leon. Viruses enter through the mouth and go through the gut and in some cases go on to affect the nervous system. There are over 90 enteroviruses and Coxsackie, A9, enterovirus 70, 71a, and others CAN ALSO CAUSE [but are not polio] 'polio-like paralysis'. The live vaccine is excreted for up to six weeks. 1 in 2 million vaccine recipients of the live polio virus develop paralytic polio. See polioeradication.org Polio Survivors Network October 2018 10
RESULTS OF INGESTING A POLIO VIRUS 4.0% 1.0% 95.0% 95% present NO Clinical Symptoms 4% get ill from Mild Flu through Weakness 1% have some Paralysis, some Die. Polio Survivors Network October 2018 11
DIAGNOSES were given on test results and clinical observation of the weakest part of the body. Bodian D and Sharrard WJW found levels of nerve damage on autopsy and compared them with the results of the physical examination. ABORTIVE POLIO PARALYTIC POLIO No clinical weakness evident below 44% nerve damage 44% NON-PARALYTIC POLIO Thereafter weakness became clinically evident and the diagnosis depended on whether you did not lose, Or were recorded as losing complete function in one or more muscle groups Polio Survivors Network October 2018 12
A POLIO TIME LINE - Polio and Recovery Recovery Ops at 13 Paralytic Polio in 1952 at 5 Born 1947 Tendon Transplants No known weakness Paralysis Polio Survivors Network October 2018 13
A POLIO TIME LINE - Stable Years Stable 16 - 41 Swam for County Life-Saving to Distinction Canoe Lifeguard Award Judo Orange Belt Secretary 5 years Policewoman 4 years 39 mile Lyke Wake Walk Advanced Police Driver Married had two children Retook Life-saving awards Advanced Swimming and Life-saving Teacher C&G 730 FE Teachers Cert. Senior Lifeguard Volunteer lifeguard at coast Recovery Ops at 13 Paralytic Polio in 1952 at 5 Born 1947 25 YEARS Tendon Transplants No known weakness Paralysis Polio Survivors Network October 2018 14
My POLIO TIME LINE Polio, Recovery, Stable Years, New Issues Stable 16 - 41 Increasing New Symptoms No Diagnosis Prescribed Exercise Polio not in equation for SEVEN years - 42 to 50 Recovery Ops at 13 Paralytic Polio in 1952 at 5 Born 1947 25 YEARS Fell and Got Up Tendon Transplants No known weakness Paralysis Polio Survivors Network October 2018 15
SYMPTOMS OF POST POLIO SYNDROME. Fatigue often overwhelming, both physical and mental. Loss of muscle strength and/or use also in muscles below the line of clinically evident weakness at the time of the original infection. Pain in muscles and joints. Trouble breathing and/or swallowing. Problems sleeping. Intolerance of cold, causing muscle weakness and sometimes burning pain and/or discolouration in limbs. Other symptoms related to or affect us more because of polio virus damage We can have other medical conditions instead of/or as well as PPS. How many other Neuro Conditions have similar symptoms? Polio Survivors Network October 2018 16
Pathophysiology and diagnosis of post-polio syndrome Daria A. Trojan*, Neil R. Cashman Department of Neurology and Neurosurgery Montreal Neurological Institute and Hospital McGill University Montreal, Quebec, Canada Polio Survivors Network October 2018 17
Pathophysiology and diagnosis of post-polio syndrome Daria A. Trojan*, Neil R. Cashman Department of Neurology and Neurosurgery Montreal Neurological Institute and Hospital McGill University Montreal, Quebec, Canada Acute Polio nerves are killed off Recovery some nerves grew extra roots that took over orphaned muscle fibres Post-Polio Syndrome one explanation is that these extra nerves are dying off Polio Survivors Network October 2018 18
Pathophysiology and diagnosis of post-polio syndrome Daria A. Trojan*, Neil R. Cashman Department of Neurology and Neurosurgery Montreal Neurological Institute and Hospital McGill University Montreal, Quebec, Canada Recovery some nerves grew extra roots that took over some orphaned muscle fibres Post-Polio Syndrome one explanation is that these extra nerves are dying off Polio Survivors Network October 2018 19
Pathophysiology and diagnosis of post-polio syndrome Daria A. Trojan*, Neil R. Cashman Department of Neurology and Neurosurgery Montreal Neurological Institute and Hospital McGill University Montreal, Quebec, Canada Post-Polio Syndrome One explanation is that these extra nerves are dying off Less nerve supply, less functional ability Polio Survivors Network October 2018 20
WE KNOW THAT PACING AND RESTING ALLOWS US TO DO MORE WC Beasley [1961] and Jaquelin Perry [1995] Found on research that Polio Muscles functioned at a lower rate. Grade 5 at 60% - 4 at 40% - 3 at 20% - 2 at 10% - 1 at 1% No Polio Polio grade 5 Polio grade 4 Polio grade 3 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% Working Muscle Resting Muscle Non-functioning muscle Polio Survivors Network October 2018 21
WE KNOW THAT PACING AND RESTING ALLOWS US TO DO MORE WC Beasley [1961] and Jaquelin Perry [1995] Found on research that Polio Muscles functioned at a lower rate. Grade 5 at 60% - 4 at 40% - 3 at 20% - 2 at 10% - 1 at 1% No Polio Polio grade 5 Polio grade 4 Polio grade 3 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% Working Muscle Resting Muscle Non-functioning muscle Polio Survivors Network October 2018 22
WE KNOW THAT PACING AND RESTING ALLOWS US TO DO MORE WC Beasley [1961] and Jaquelin Perry [1995] Found on research that Polio Muscles functioned at a lower rate. Grade 5 at 60% - 4 at 40% - 3 at 20% - 2 at 10% - 1 at 1% No Polio Polio grade 5 Polio grade 4 Polio grade 3 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% Working Muscle Resting Muscle Non-functioning muscle Polio Survivors Network October 2018 23
WE KNOW THAT PACING AND RESTING ALLOWS US TO DO MORE WC Beasley [1961] and Jaquelin Perry [1995] Found on research that Polio Muscles functioned at a lower rate. Grade 5 at 60% - 4 at 40% - 3 at 20% - 2 at 10% - 1 at 1% No Polio Polio grade 5 Polio grade 4 Polio grade 3 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% Working Muscle Resting Muscle Non-functioning muscle Polio Survivors Network October 2018 24
CRITERIA FOR A DIAGNOSIS OF PPS from 2000 1. A history of remote paralytic polio or findings on history, physical examination results, and laboratory studies compatible with polio virus damage of the central nervous system in earlier life [Halstead L, MD - Silver J, MD Am. J. Phys. Med. & Rehab. Jan/Feb 2000] 2. A period where we recovered. 3. A stable period of functioning, from 10 to 50+ years. 4. New symptoms with no other explanation. THERE ARE NO TESTS - IT S A DIAGNOSIS OF EXCLUSION How many other Neuro conditions are diagnosis of exclusion? Try asking patients if they had polio or know anyone who had polio.. Answers have been YES, me, my sister, at school, in our village Some have EMG s confirming damage consistent with polio virus Polio Survivors Network October 2018 25
The first descriptions appeared in 1875 4 case histories were reported in the French literature by Carriere, Raymond, & Cornil and Lepine. These patients, all young men, had paralytic polio in infancy and developed new weakness not only in previously affected muscles but also in muscles believed to be uninvolved. All had physically demanding jobs and performed repetitive activities Post-Polio Syndrome : Pathophysiology and Clinical Management, Anne Carrington Gawne and Lauro S. Halstead. Critical Reviews in Physical and Rehabilitation Medicine, 7(2): 147-188 (1995) Full text in Online Library http://www.poliosurvivorsnetwork.org.uk/archive/lincolnshire/library/ gawne/ppspandcm.html Polio Survivors Network October 2018 26
Problems with my Diagnostic Name A diagnosis might be given as follows: Upper body No medically recorded weakness Therefore NO Diagnosis Key omissions 1. Virtually all the body is affected by the polio virus to some degree. 2. Was the bulbar area affected? Is there weakness in secondary accessory muscles of breathing? Lower body Waist down paralysis at age 5 Diagnosis: Paralytic Polio Polio Survivors Network October 2018 27
Facts from the start of new symptoms to obtaining a diagnosis Sept. 1988 Working 60+ hours a week and voluntary work very fit. Oct Dec 88 Slipped on wet floor pain killers, Physio, neck traction Jan 89 94 New pain, fatigue, falling Rx to exercise daily. Feb Oct 95 New GP Physio Ortho Cons, X-ray MRI Rx exercise. 22nd Nov 1995 Glad you are better . I am not better, I had POLIO Oh SEVEN YEARS Of medically noted yet unexplained symptoms of pain, weakness, fatigue, falling, functional decline, swallowing problems, voice deepening and increasing frustration TWO MORE YEARS Starting again at Second Hospital Dec 97 Letter to GP. All tests negative for other conditions, Confidentally diagnose the Post Polio Syndrome N.B. Polio not taken into the equation till I mentioned it. Advice was to exercise which I complied with but I continued to deteriorate and I never regained my pre fall ability Polio Survivors Network October 2018 28
Problem 1 - MANUAL MUSCLE TESTING facts from my files Neurologist - report for defence for court On neurological examination of the legs power at the left hip, and knee and ankle was normal Left leg is my weakest polio leg. How can it be normal? March 1998 Senior Physiotherapist - Private assessment. Left leg, hips 4+, quadriceps 5, hamstrings 4+, ankle 5 s. Quads 5 normal. Unable to lift bar on quads exerciser. January 1999 GP referred to Neurologist at another hospital for 2nd opinion Left Leg Power 3. 4, 4, 4, 4. My leg is weakening - above tests show higher grades. August 1997 Suddenly remembered January 1969 Medical for the Police PASSED[59 years ago] Age 5 - waist down paralytic polio, can t rise from squat No Health Professional would report facts he did not believe to be true. The validity and reliability of single action MMT must be faulty. Polio Survivors Network October 2018 29
I self tested Straight Leg Raise Repeats - no pressure against action and Lift Item with Arms and sustain at 3 second intervals Straight Leg Raise Repeats Arms - Lift Item and Sustain 6 6 5 5 4 4 Left Leg Right Leg Left Arm Right Arm 3 3 2 2 1 1 0 0 Manual Muscle Testing done a single time did not pick up weakness Polio Survivors Network October 2018 30
MANUAL MUSCLE TESTING CONFIRMING STATEMENTS Lauro S. Halstead MD - May 2002 - Director of Post-Polio Program National Rehabilitation Hospital, Washington DC, USA. If done only a single time, it can give an erroneous idea of the true muscle strength and endurance. Fred Maynard, M.D. - May 2002 - Marquette, Michigan, USA President Board of Directors, Post Polio Health International. "You have done a brilliant job of describing a real problem for polio survivors and professionals that is, the limitations of the Manual Muscle Testing Sharrard WJW. Muscle recovery in poliomyelitis. J. Bone Joint Surg (BR) 1955;37:63-9 muscle grades of 3 were given to individuals with 85% denervation of the muscles. Manual Muscle Strength Testing of the Distal Muscles. Luiese Lynch It does not measure the ability of the muscle to function as part of a movement pattern. Bohannon RW, Corrigan D. Percept Mot Skills 2000; 90:747-50 found thatmanual muscle tests of grade 5 had enormous variation in force, up to 86% of all quantitatively measured forces Polio Survivors Network October 2018 31
Problem 2 - Not enough facts taught at medical school The amount of facts given in lectures in Colleges of Medicine about polio in it s initial stages, recovery and the late effects are too few. 1970 onwards 1955 Vaccine 1996 onwards poliosurvivorsnetwork.org.uk Polio Survivors Network aim has been to ensure all health professionals are aware the condition exists and where to find more info if you need it for your patients 1970 s onwards the amount of info taught reduces and for some health professionals is NIL. Polio Survivors Network October 2018 32
Problem 3 - Which lady is the Polio Survivor? The one on the left or the one on the right? The picture on the left was taken in 1995 The picture on the right was taken in 2003 They are the same person. You need to find out more about the level of achievement your Polio Survivor patient reached before the start of their new symptoms Gwen - Thank you for permission to use your photos Polio Survivors Network October 2018 33
BENEFIT of OBSERVING PATIENTS PERFORMING ADLS In 2003 a new Rehab Consultant arrived in Lincolnshire and he referred me to a Physiotherapist for a base line physical assessment including actions of daily living. In 2004 the Senior Physiotherapist who, after long discussions on PPS and my symptoms over two appointments examined my muscles and then as I was performing some actions of daily living. Some of the facts that came out of this are:- I am using NON normal muscles to do actions. Weakness in my upper body that I have been reporting for years now confirmed My chest expansion on repeats reduced to only 2 centimetres During the appointment I was getting up from the floor and she said You are using your hamstrings and back extensors now . I replied, Oh I have always got up this way since my polio, even when windsurfing Polio Survivors Network October 2018 34
Problem 4 The way we present our symptoms. Oh! This could be almost any condition! My legs ache all the time I cannot walk as far I am always exhausted Polio Survivors Network October 2018 35
SET THE SCENE I had polio in [19 .] at the age of [ ] diagnosed [ ] and I recovered to [ ] level. I have been employed as [ ] and physically achieved [ ] Current problems - start with most affected. 1. Walking best ability 39 miles, average 10 miles, no orthoses, no aids. 2. Noticed change following fall in 1988. 3. Distance reduced, got slower, limp became noticeable, had to start using a cane. 4. Now, am in pain by 25 yards, use a cane all the time, I walk even slower, limp more and stoop. 5. Symptoms - pain, fatigue, frustration. Polio Survivors Network October 2018 36
Problem 5 - FACTS IN MEDICAL ARTICLES Taking and/or using facts from older medical articles without checking the level of polio of the subjects. NB The people involved in the research may not be representative of all polio survivors. The Lancet - February 1996 Study throws doubt on Post Polio Syndrome. From Neurology 1996: 46;80-84 Lack of progression of neurological deficit in survivors of paralytic polio; a five year prospective population based study. From the abstract. We identified 50 individuals who had had paralytic polio between 1935 and 1960, as representative of all 300 cases of paralytic polio in the county. THIS ARTICLE SET HELP FOR POLIO SURVIVORS IN THE UK BACK TEN YEARS Study progressed to 15 years. Other articles released from facts. Media statements August 2006 Survivors of Childhood Polio Do Well Decades Later As They Age , BBC picks this up heading it No Polio effects in later life Polio Survivors around the world knew this was not true and responded including Professor Mary Westbrook in Australia. After reading Professor Westbrook comments I contacted her and she sent me all the articles relating to the Mayo study. I spent three weeks sat on my lounge floor highlighting all figures and phrases and comparing them. I wrote an article Polio Survivors Throw Doubt on Study and the lead author Dr. Sorenson responded with Many of the points you raised are valid criticisms Other Polio Survivor medical professionals also wrote articles in rebuttal [NB We are now once again collating all the information for uploading in early 2019] Polio Survivors Network October 2018 37
Taken from MY POLIO LIFE in 2000 Self assess and provide information on change in function of ADL s [1] Action Before current problems Large full of potatoes 2000 [2018 now employ personal assistant] Lifting Saucepan Now sliding pans across surfaces. Draining water Beating motion Peeling veg Washing up Polio Survivors Network October 2018 38
Taken from MY POLIO LIFE in 2000 Self assess and provide information on change in function of ADL s [2] Action Before current problems 2000 [2018 now employ personal assistant] Now sliding pans across surfaces Lifting Saucepan Large full of potatoes Draining water Put lid on and lift and strain Use slotted spoon to take veg. out Beating motion Peeling veg Washing Up Polio Survivors Network October 2018 39
Taken from MY POLIO LIFE in 2000 Self assess and provide information on change in function of ADL s [3] Action Before current problems 2000 [2018 now employ personal assistant] Now sliding pans across surfaces Lifting Saucepan Large full of potatoes Draining water Put lid on and lift and strain Use slotted spoon to take veg. out Beating motion Use wrist action Use elbow rotation Peeling veg Washing Up Polio Survivors Network October 2018 40
Taken from MY POLIO LIFE in 2000 Self assess and provide information on change in function of ADL s [4] Action Before current problems 2000 [2018 now employ personal assistant] Now sliding pans across surfaces Lifting Saucepan Large full of potatoes Draining water Put lid on and lift and strain Use slotted spoon to take veg. out Beating motion Use wrist action Use elbow rotation Peeling veg. Knife or peeler action towards self Lean against cupboard and work in sink area Left hand against sink side holding veg. Wobbly peeler right hand, peel away from self Washing Up Polio Survivors Network October 2018 41
Taken from MY POLIO LIFE in 2000 Self assess and provide information on change in function of ADL s [5] Action Before current problems 2000 [2018 now employ personal assistant] Now sliding pans across surfaces Lifting Saucepan Large full of potatoes Draining water Put lid on and lift and strain Use slotted spoon to take veg. out Beating motion Use wrist action Use elbow rotation Peeling veg. Knife or peeler action towards self Lean against cupboard and work in sink area Left hand against sink side holding veg. Wobbly peeler right hand, peel away from self Lean against cupboards and hold on with one hand whilst use other. Stand for few minutes then rest. Perching stool arms wrong angle. Washing up No problems Polio Survivors Network October 2018 42
Taken from MY POLIO LIFE in 2000 Self assess and provide information on change in function of ADL s [6] Action Before current problems 2000 [Added in 2018] Climbing a flight of stairs Two at a time one flight only Walk up normally Right foot first, Pull up with right arm Stop half way. Moved to bungalow 2007 Driving Turning over in bed Walking Polio Survivors Network October 2018 43
Taken from MY POLIO LIFE in 2000 Self assess and provide information on change in function of ADL s [7] Action Before current problems 2000 [Added in 2018] Climbing a flight of stairs Two at a time one flight only Walk up normally Right foot first, Pull up with right arm Stop half way Moved to bungalow 2007 Automatic cannot lift left leg onto clutch, higher seats and arm rest Hoist for electric wheels. PA drives mostly now Driving Advanced Police Driver. Manual gear change Turning over in bed Walking Polio Survivors Network October 2018 44
Taken from MY POLIO LIFE in 2000 Self assess and provide information on change in function of ADL s [8] Action Before current problems 2000 [Added in 2018] Climbing a flight of stairs Two at a time one flight only Walk up normally Right foot first, Pull up with right arm Stop half way Moved to bungalow 2007 Automatic cannot lift left leg onto clutch, higher seats and arm rest Hoist for electric wheels. PA drives mostly now Driving Advanced Police Driver. Manual gear change Turn whilst asleep Turning over in bed Having to wake to turn over, leg outside bed, hold handle on mattress, grab night attire and rock three times!. Sleep on left side only. Walking Polio Survivors Network October 2018 45
Taken from MY POLIO LIFE in 2000 Self assess and provide information on change in function of ADL s [9] Action Before current problems 2000 [Added in 2018] Climbing a flight of stairs Two at a time one flight only Walk up normally Right foot first, Pull up with right arm Stop half way Moved to bungalow 2007 Automatic cannot lift left leg onto clutch, higher seats and arm rest Hoist for electric wheels PA drives mostly now Driving Advanced Police Driver. Manual gear change Turn whilst asleep Turning over in bed Having to wake to turn over, leg outside bed, hold handle on mattress, grab night attire and rock three times! Sleep on left side only. Right foot dropped AFO Use rollator in small bungalow Outside use an electric scooter Walking 39 mile Lyke Wake Walk 10 miles average Polio Survivors Network October 2018 46
My polio life.. Polio Survivors Network October 2018 47
How a Chart quickly shows decline in walking ability. Progression of Symptoms City blocks walked 1975 - 2002 Modified from graph by Dr. Lauro S. Halstead November 2002 12 10 8 6 4 2 0 1975 6 7 8 1980 9 1 2 3 1985 4 6 7 8 1990 9 1 2 3 1995 4 6 7 8 2000 9 1 2 Years It is not easy admitting that with PPS comes the need to SAVE energy and use aids and assistive devices. Dr. Halstead started using a scooter, because of long corridors, at Washington s NRH in 1991. Waited 8 years before one for home use. Polio Survivors Network October 2018 48
POLIO TIME LINE - condensed version [Best seen as four bodies per page with explanation underneath as 2 & 6] Left arm contracted tremors Right arm weakening Bad Right shoulder pain Neck pain - swallowing problems Legs weakening. Left muscle atrophy since brace Left leg KAFO Right leg AFO 56 Muscle transfer right foot - age 5 '57 cyst removal same ankle - age 6 '64 ankle fusion one foot - age 13 '65 ankle fusion other foot - age 14 Polio Survivors Network October 2018 49
In 2003 as I finished a presentation my daughter came home. I asked her what did she think? MY DAUGHTER SAID Add this Mum , These are not only your problems, They are mine as well, As you have got worse, things are more difficult at home for me You cannot do the things you used to do with your family and friends and the frustration that you suffer is shared by us as well There is so much to do in your life, my life and our house each day that it is not possible for me to fit it all in There are a lot of things that you are upset about not being able to do at this age This also applies to me, I am 27 and I still live at home woopey do There are life experiences that I wanted to have not living in Lincoln, working abroad and travelling etc. Do we ensure we allow our family to tell it like it really is? Polio Survivors Network October 2018 50
