Thursday, October 24, 2013

Surviving the Iron Lung: a Story of Polio

Mary Virginia with her family. Heather's father is the young boy on the right. Picture estimated to be from 1958. Provided courtesy of Heather, and used with her permission.

This story was told to me by Mary Virginia's granddaughter, Heather. After seeing the picture of the communal iron lung at the top of the blog, Heather realized that this is what her grandmother spent several years in. 

Mary Virginia was born in 1930, to a well-off family. Her childhood was happy enough, until the summer of 1937. Mary Virginia went to the neighborhood swimming pool, and had a lovely time. The next day, right before bed, she felt a little fuzzy. Her mom touched her forehead: the child was a little feverish, so her mother called the doctor.
Within hours, Mary Virginia could not control her lower body; within two days she was in an iron lung, in a hospital. She told her granddaughter that she shared a communal iron lung with four other children at a time (an “Emerson”, she called it).

There were dozens of children with polio in the hospital.
The turnover was high. Within six months, she and only two others were the only ones left from the original group she saw. In the communal iron lung turn over was fast for a grimmer reason: children died. Mary Virginia stopped counting her lost companions when she reached 24: she didn’t know how to count any higher than that. She had an aversion to the number 24 since then: it reminded her of the children she saw die.
For 3-4 years Mary Virginia lived in the iron lung. The nurses who treated her would move her arms and legs to maintain some kind of muscle. Her parents would visit her throughout the years she spent at the hospital, but although they were financially well off, the price and lengths of the train trip meant their visits were limited. Mary Virginia’s mother always felt guilty about that. Still, they saw Mary Virginia more often than most parents saw their kids. Heather, Mary Virginia’s granddaughter, remember that her grandmother told her that her own mother brought  “knitted hats, and little trinkets for the kids. And books, books were very important.”

After leaving the iron lung she spent additional years in the hospital. Many of the skills she had before she went in were lost and had to be relearned: she was back in diapers, and had to relearn to use a restroom, something that took years; she could no longer walk.

She left the hospital as a teenager who could barely walk. Heather says: “My Nana was warned she would never walk again, she proved them wrong - only used a cane in winter until she was much older and required a wheelchair for long distances or grocery shopping. She wore special shoes because polio caused blood flow to her pinky toes to be cut off. She has special inserts as foot muscle tone was affected. She showed me her braces once - from the bottom of her hip all the way down to her ankles. Doctors were amazed,  I remember her doctor she saw in Toronto, I must have been 8 or 9, saying she was a miracle, to be able to regain so much muscle tone after polio. She couldn’t walk far but made it around the house ok by the time I was around.”

“She wasn't really welcome back to her town,” Says Heather. Getting her life back together was hard in other ways too. While in the hospital, Mary Virginia’s education was patchy. The hospital tried to provide education, but it was not equivalent to what a school would have given. Mary Virginia had to relearn to write (though she kept reading through her hospitalization). She was not allowed to go back to her regular school, and had tutors working with her. It must have been lonely. But she overcame this obstacle too: she got through high school, attended university and taught home economics – cooking and sewing – for years.
Her physical development was also impacted. She only grew to 4 feet 8 inches in height. Her doctors were also pessimistic about her ability to have children, and here too she beat the odds, having five children in six years, almost dying while birthing her youngest in an emergency C-section. 

Mary Virginia worked hard to overcome the obstacles polio put in her way. As said above, she graduated from college and worked, teaching until the early 1980s. She and her husband, a lawyer, had five children. She cooked and cleaned every day, rejecting the help of housekeepers as part of her determination to be independent. Cooking was not easy for her, since her short stature – a memento from the polio – made reaching shelves hard, but she persisted, and taught her son and granddaughter how to cook. She gardened, and loved anything “outdoorsy”, says Heather, who remembers her as “strict but very loving.” She stayed friends with one of the women who was admitted into the hospital in the same year she was, someone who could identify with her experiences.

In 2002, Mary Virginia caught pneumonia. Heather says: “Her muscles were already so damaged from polio as a child that when she got sick essentially her lungs were too weak to work properly and she did not want to be intubated, she wanted to be awake until she couldn't any longer.”
In June 2003, she died. Her family misses her keenly. But Mary Virginia built a good life for herself, in spite of obstacles, and Heather is grateful for having had this remarkably, brave woman in her life.

Acknowledgements: I am grateful to Heather for sharing her grandmother's story and to Alice Warning Wasney for her comments and help with the draft. 

How Post Polio Syndrome Caught up with Mary

Polio  is a disease of  the past, and the vaccine is close to eliminating the threat worldwide.  But for those who contracted the disease in the epidemics of  the 1950’s,  a new condition – Post Polio Syndrome continues to affect it’s survivors.

Mary was two when she contracted polio, in 1954. 

Mary as a child, at different ages. Picture provided by Mary, and posted with her permission.

She eloquently talks about her experience in a post on polioplace:

“When I was released from the hospital after about six weeks, I had to wear two long leg braces. This is a picture of me learning to walk with parallel bars my dad had a friend build for me. They were set up in the middle of our living room for two months. I am told I practiced a couple times a day. My two older sisters took full advantage of them. My sister, Marsha, is in the background doing flips on the bars! That probably made it more of a game for me."

Mary with her braces. Picture provided by Mary, and posted with her permission.

"Crutches were the next phase, for another two months. Then one brace broke. So, we discovered that I didn't need that one. I wore one brace and walked without crutches from then on.”

 Mary refused to let polio slow her down. Her dad was a lawyer, her mom a homemaker and she had two older sisters.  Mary went through the regular public schools, learned to swim, and rode a bicycle. She graduated from college, and met her husband, a loving and creative man. She worked as a Montessori teacher in preschool and elementary private schools, riding a bicycle to and from work!

Then post-polio syndrome caught up with her. Mary says: “After about five years, I was becoming overly fatigued and was having back and leg pain.  I assumed I was just needing a break from teaching, so I found a job with the telephone company as a service representative.  It was a desk job, that actually got more computerized as the years went by, and I had good benefits. My husband stayed at home caring for our daughters.”

As her girls reached school age and were about to be out of the house for longer periods of time, Mary and her husband were looking forward to having two salaries again. But it was not to be.  Mary’s condition was getting worse. Mary says:
When I started again to have more pain and fatigue, one of my sisters who lived in St. Louis gave me some information about an organization there investigating other polio survivors with similar complaints.  The group had been keeping vent users and those in in iron lungs connected since the polio outbreaks in the 50's.  This was the 1980's.  Apparently our bodies, damaged from the original polio, had compensated for our neuron losses and now were breaking down with overuse.  It wasn't polio again, just progressive nerve issues.  So I found a clinic where I was diagnosed with Post Polio Syndrome and had to quit working on disability in 1988, when I was only 33 years old.”

Mary’s husband was having trouble finding a job as a blue-collar worker after all these years. And Mary herself, an active, creative woman, had no intention to be idle, motoric problems or not.  Mary says: “Since my legs were originally affected, I could still do a lot of crafts with my hands. We made Native American crafts - gourds, beading, leather work and travelled to sell at Pow Wows, bike rallies, trade days, etc. I have always done needlework, quilting, and really loved loom beading. (It seems that the majority of polio survivors are Type A personalities - always busy somehow).” Things became more challenging as time went by: “Post Polio brought canes, crutches, manual wheelchair, electric scooter, and now a full time power wheelchair for me over the years.  With each change in my physical condition, I had to psychologically deal with another loss.” 

Mary more currently. Picture provided by Mary, and posted with her permission.

Her crafts kept her busy and engaged, but “now even my arms are weakening. So crafting is out now, too.”
She appreciates her husband’s devotion and constant loyalty, through change after change: “He married me with my leg brace, and stayed with me as PPS put me in a wheelchair.  Some of us found very supportive spouses.  Others, I have learned from my on line support groups, had spouses who left as soon as Post Polio began affecting them”.
In 2005, she lost this wonderful man who supported her through all the changes. But she was not alone: her younger daughter, just graduating from college, moved in to be with her, teaching Spanish in a nearby high school. Then, her daughter found a wheelchair accessible house, and the two moved in. Last year, that daughter married and moved out, though she and her new husband live nearby and Mary sees them often; but Mary’s older daughter, widowed and mother to a child, moved into the wheelchair accessible house to help Mary out. The family is very close.

Mary is not the type to brood: in spite of the limits her body sets, she stays active and finds things to do. She is active online in the polio survivors forum, she reads, she watches TV. She describes her online involvement: “The Internet has been a wonderful way for those of us who can't physically go out much anymore to connect and feel part of society.  Those of us who were more affected will give tips to the survivors who are now experiencing weakness and pain.  As they need braces and wheelchairs and rest, we can give the support, if only through on line chats.”

Mary concludes: “There are approximately one million polio survivors in the US today.  Many recovered with little obvious disability and are now needing braces and wheelchairs.  It is important for people to be aware that polio continues. I guess I want people questioning vaccinations to be aware that the long-term effects of polio are life changing over and over again.  There are some people who actually contracted polio from the vaccine (very rare, but it does happen) who still believe the vaccine is best for everyone to stop the spread of polio.”

Acknowledgements: I am grateful to Allison Hagood for introducing me to Mary, to Mary herself for sharing her story and helping prepare it, and to Alice Warning Wasney for commenting on a draft. 
More information about post-polio can be found at: 

Tuesday, October 22, 2013

Recommending New Zealand's Collection of Stories: Piercing Memories

Many of this blog's readers are hopefully familiar with the wonderful site, collecting stories of survivors of diseases, mostly in the U.S.. Some of this blog's interviewees also interviewed with - for example, Jan interviewed with them before posting on this blog; Renay, who shared Jesse's story with our readers, then shared it with shotbyshot. So did Judith, here. Less familiar to you may be a New Zealand site also collecting stories, run by the Immunisation Advisory Centre, described as "a nationwide organisation based at the School of Population Health at The University of Auckland." I found this site thanks to Madeleine Ware, who provided the link - thank you, Madeleine - and thought it would interest my readers. 
The site collects stories of victims of vaccine preventable diseases, and has a collection of fascinating stories. One example is the story of Winifred, who at the age of 6 stepped on a nail and got tetanus. In a letter written shortly after the event to her grandmother, her mother describes the event. For the full version, read the story.  At some point, this happened: 

"At 4pm the doctor rang us and said if we wanted to see her we must go at once because they were expecting the spasms to commence any time. We went straight away and she was as bright as a bee. She had had dozens of injections all day and a needle put in her arm and she was already stiffening. She made no attempt to move and spoke awkwardly but said she was “quite quite happy” and had a nurse all to herself. As a matter of fact she had three. They took 8 hour shifts and hardly took their eyes off her. In addition the Sister was in there most of the day and the night nurse in and out. The doctor told me that the nurses had been wonderful.

That night, at 11 pm the spasms suddenly began. They put her under anaesthetic and kept her under lightly all the time. When the spasms came on they gave her more which made them less violent. She had several in the next few hours and twitched continuously. The brain is like a hair trigger and the slightest stimulus will set off another spasm. If they had left her conscious she would have gone from one in to another and of course had worn herself out in no time.. As it was it was touch and go each time. I was told that when Doctor Butcher the son of the fire brigade man received an urgent call to the Children’s ward, the whole hospital held its breath till he came out again and said all was well." 

Saturday, October 12, 2013

How Measles Encephalitis Harmed Harriet

Harriet as a young girl. Picture provided courtesy of Harriet.

Harriet was born in August 1965, by far the youngest of six children: her next older sister was 8 years older. The family did not have much time to just enjoy the new baby. In December 1965, the family was headed to a Christmas concert, baby Harriet cradled in her mother’s arms (pre-carseat days). Their plans changed when the baby started seizing. The family rushed immediately to the Emergency Room. The hospital intake form had “measles?” written on it next to the baby’s vitals and symptoms (“seizures”). During the next few weeks that Harriet spent at the hospital, the diagnosis was confirmed: measles that led to encephalitis. Harriet’s condition was serious: her family did not know if she would live or die. The hospital told them, explains Harriet, “that even if I did live, I would be so severely mentally retarded that they should put me in a home.”
Harriet survived, intelligent and articulate. She did, however, suffer lifelong damage. She says: “I know I have scar tissue on my brain because when I was nine or ten I was taken for a CaT scan, at that time it was a brand new expensive machine, it was so exciting and I was to be one of the first ever to use it and I moved. So we I had to do it again. The neurologist told my mother about lesions on my brain. My sister remembers it described as shadows on my brain.”
The cost to her was physical, cognitive and social.

A Childhood Clouded by Risk:
One of the costs of the encephalitis was uncontrolled status (epilepticus) seizures, meaning one seizure after another after another for more than an hour (a potential consequence of viral encephalitis). This meant Harriet was repeatedly hospitalized. It also meant she needed extra protection against disease. To protect her, she was kept at home, not sent to daycare, and her parents had to choose a caretaker who took no other children (except for Harriet and her own children). Childhood seizures often resolve at age 6 or 7 years so her schooling was delayed.  Harriet did not go to preschool or kindergarten but did enter school for Grade 1. While her parents did not completely isolate her, wanting her to have a normal life, she was allowed to play with only one or two kids at a time, and her parents made sure the kids she played with were not sick. Her parents worried constantly, unsure their youngest will survive her childhood.
Harriet missed 28 days of her first grade, and had two or three hospitalizations that year, failing first grade. Two events stand out in her memory:  “I was left in my sister’s care one time and when she came into check on me I was not moving.  She was screaming and crying ‘I killed her, I killed her.  She’s dead.  Mom and Dad are going to kill me.’  I must have been having an absence seizure.  One of the bonuses of measles encephalitis is tormenting your older sisters.”
In another event, “two of my sisters took me for a treat to McDonalds.  This was not like it is now when people eat fast food regularly: this was a once in a year special occasion.  I must have said I felt tired and this set off the panic.  I was grabbed and rushed out of there to the hospital emergency room and one of my sisters was yelling that I was about to die.  I was fine and I am still pissed off (a little) about leaving my special treat.” Harriet’s sisters believed that fatigue was an indication a seizure is about to arrive. That was not the case: fatigue was a separate and additional price of the encephalitis.

When Harriet was 7, her medication was changed. She is not sure if it was the change of medication or just growing up, but she never had another seizure as a child. The seizures returned in her mid-twenties. Harriet says: “I was hooking up the TV. My daughter heard a strangled cry then a loud thump and ran down the stairs and saw me seizing. My daughter and her friend called 911 and she said, ‘my mother’s in shock!’ The operator, trying to understand her, asked: ‘she’s been shot?’ And she said ‘no, she was shocked. She was hooking up the TV and she was shocked.’ And the operator goes, ‘oh, she was electrocuted?’ That’s too big of a word – she was only nine. Luckily it was just a simple seizure, not like when I was a child. It aggravates me when other parents describe their child’s simple seizure as their worst nightmare, I know it looks scary, but if a couple of nine year olds could handle it then other people can as well.” Harriet’s neurologist was not concerned either despite Harriet’s history. Harriet would have two more seizures before it was decided to use medication.

Harriet and her daughter as a baby. Picture provided courtesy of Harriet.

Physical Price:
The physical consequences of the encephalitis range from unpleasant to life-threatening, brought here in no particular order.
Harriet describes a variety (1001 types) of migraines that affect her. For brevity, I will only mention a few. She has the classic, painful migraines, various optical migraines, and bizarre neurological migraines. In one type of optical migraine words cannot be recognized as such and individual letters act like pixels creating a picture. 
The most severe migraines she has leave her completely unable to respond. She says “I don’t know my own name, I can’t do simple tasks that I’ve done before, and at the most extreme I lose postural control and I slump over and freeze” (though she has never actually fallen).  These episodes leave her completely helpless.

She has hyperaccusis, a situation where “your brain amplifies ordinary sounds, I hear my hair cracking.” “You can’t sleep because the pillow makes too much noise. I hear the wires in the wall.” Earplugs don’t help, because you would hear the sound of the earplug. 

In addition, she has both high and low blood pressure. She explains that although most people worry about high blood pressure, low blood pressure can cause the heart not to beat enough and “you can’t get enough blood flow.” So Harriet has to carefully monitor her blood pressure.
She doesn’t handle heat well, which she explains is common among those that suffer brain injury, but in her case, it’s made worse because she does not sweat properly (not because of dehydration) and she cannot always properly sense temperature.

She suffers from non-recoverable fatigue, which she describes as “not brought about by exertion, and not curable by rest. It’s brought on by doing your usual routine. Though I do find that one of the most common triggers is decision-making, going shopping. It’s a severe fatigue, and you can’t rest your way out of it like normal fatigue, and that’s probably one of the most debilitating things.” That is one of the reasons she is unable to work.

Cognitive Impairment and its Social Costs:  
A number of cognitive problems make social interaction much harder for Harriet than for most people.
Harriet is unable to recognize faces. This caused problems for her throughout life. She says, “I grew up in a small town where everybody knew everybody, and I didn’t know a soul. I have to depend on people recognizing me. They would think I was stuck up because I didn’t acknowledge them on the street, but I didn’t know who they were.”
Even today, “if you change your hair I don’t know who you are. If you stop me in the grocery store and I’m used to seeing you in the office I don’t know who you are. Even my daughter – it’s kind of funny, but I can recognize the way she walks. I have to do a great deal of thinking so I can recognize her, but basically I recognize her clothes, if she changes her hair and gets news clothes I don’t know who she is, and I have to depend of how she walks, because I can recognize how she walks.  But you show me a picture of her face and I might not recognize her.”
The combination of lack of facial recognition and delayed cognition, which she also has, leaves her vulnerable to manipulation: “when someone is being nice to me I can’t sense if someone is untrustworthy.” On the other hand, she may say things that are not socially appropriate (“the blurts”). Or be accused of manipulation because of responding directly to question (“terminal honesty”)". 

She has memory problems – problems with word recall and with remembering appointments and what to do. Together with delayed cognition, this too makes social interaction and daily life complex:  “the only times I’m able to respond during a conversation is to use routine building. You have to prepare for every little thing. Even for normal things in your daily life you have to build routines into them.” Luckily, “…technology has caught up and for rare events you can program them into your smart phone, and it would beep and warn you that it’s coming up. And that’s because otherwise it just doesn’t exist.”

Finally, Harriet suffers from an exaggerated startle reflex and a parasympathetic nervous system disorder. This means that her body overreacts to situations. Harriet gives an example of her computer crashing, and her reaction was to run downstairs and find herself sitting in a chair, her body vibrating with rage but calm in her head. She explains how it can exacerbate social interactions: “if I complain at a store, if there’s a sensitive person there, they will recognize all the non-verbal signals that my body is giving off. I might be a little frustrated but my body overreacts, and I’m giving out signals of rage. They’re reading this rage, and I can’t get them to calm them down to listen to what I’m actually saying.”

Harriet lived with the after effects of the measles encephalitis all her life. Measles leads to encephalitis in about one in athousand cases. The MMR vaccine, in contrast, had a reported incidence of one in a million or much less, and causation is in doubt.

Harriet says: “Because of the contrived controversy about the MMR, I’ve been trying to explain to people. Because vaccines are so effective, people no longer know what measles looked like. I consider myself on the mild side of the severe consequences of measles, especially being four months old - I was most likely to die in that age. I was in absolute terror when I first learned about SSPE [an incurable and fatal complication of measles; see also here, here and here], because I was trying to figure out why all these changes were happening to me. It was 10 minutes of absolute terror reading about it, and then it was, okay, this is not it, it would have killed me years ago, this is something else. But that was terrifying.” Everytime I reach a different life stage(school age, puberty, mid-twenties, and now perimenopause) I have different cluster of symptoms.  My neurologist sent me for a MRI  because of the changes and “weird” brainwaves.  She concludes: “I’m trying to speak out. People just don’t know that this is the real risk. It terrorized my family for years.”

Acknowledgments: Thank you to Harriet for sharing her story and working with me on the writing, to Alice Warning Wasney for reading my draft, and to Dr. Nathan Boonstra for his comments and help in understanding the medical issues.