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IamA 58 year old woman who contracted polio because my mother didn't vaccinate me as a child. AMA!
My short bio: Hi Reddit. As the title states, I'm a 58 year old woman who contracted polio as a child because my mother chose to not vaccinate me. I want to do this AMA due to the current controversies surrounding the anti-vaccine movement and to also help spread the truth about vaccines so no more children need to contract unnecessary diseases.
My son Shaun will be typing my answers for me.
My Proof: Here is a photo of some of the medication I am prescribed to deal with the chronic pain caused by the polio. I take a variety of medication and this makes up about half of it. If you want to know more details, ask away.
The following three images are of me from different angles. My upper right leg and knee were the primary sites of infection.
Here is a photo of me from the front.
Here is a photo of me from the left.
Here is a photo of my from the right.
EDIT: My mum says thanks for the gold (she has no idea what it is).
There's been a lot of mean comments from people calling me out as a shill, asking how much Obama is paying me and asking how much I've been paid in general and saying that you didn't get polio because you didn't have the vaccine, but because you had a week immune system.
First: The shill thing is sad. Let's put that to bed as quickly as possible. Look at the photos of my leg above - Do you really think I would want another innocent child to have to experience what I do on a daily basis? Don't insult me by saying I'm taking money so you can put a wall up between your unfounded opinions and modern science/medicine.
Second: Obama? What? I am Australian. It's nothing to do with any political debate.
Third: Paid? I got paid one reddit gold from a mysterious donor. I'm not here trying to make money. I'm trying to ensure that your children have a better world to live in.
Fourth: I got polio not because I wasn't vaccinated, but because I had a week immune system. Really? I mean, really? Are you serious? That is the entire point of vaccines. Of course I got polio because my immune system couldn't handle the virus. I repeat. That is the entire point of vaccines. If you would rather we give no vaccines and just let those who are infected die off, well, I can't comment on your worldview. Just keep in mind that your children might not grow up to share that same world view and you don't have the right to endanger their physical well-being because of whatever personal philosophies you might hold close to your heart.
Polio19552632 karma
I would for sure, haha! The situation needs to have some more attention brought to it. I don't think parents completely understand the consequences of not vaccinating.
sethescope815 karma
I would love it if that happened, especially because (and unlikely because) Jenny McCarthy, who is now one of the show's hosts, is a goddamn anti-vaccine nightmare of a person who's ruining people's lives because she wants someone to blame for her kid's differences.
I hate her so much I actually linked to a Post story.
So thanks for spreading the word. I promise you: by speaking out about this you a saving lives. Thank you, thank you, thank you.
Polio19552070 karma
I think there's something wrong with them. They have no understanding of the situation, and they're essentially... They're being "sucked in" to the autism ridiculousness from McCarthy who has no evidence to fall back on, but somehow has exposure to feed the people with disinformation.
steve76ers446 karma
I meant to ask as well how much would all those meds cost you? I work in a pharmacy in England, if they were all prescribed on the same script it would cost £62.80. Think that's around $90?
Polio1955649 karma
I have the equivalent of the NHS subsidised medication scheme so I think it would be about the same. It depends on the medication. I spend at a minimum of ~£60 a month. and probably a maximum of £80.
Without the subsidy, the prices would be far too high for me. One box of the Lyrica costs about £60 without the subsidy.
orangesunshine73 karma
One box of the Lyrica costs about £60 without the subsidy.
Wow! I was on just 75mg lyrica 3x/day ... and it was around $500 for a months supply in the U.S. I was forced to switch to gabapentin due to the economics. Thankfully, I actually had much better results with gabapentin than I did Lyrica ... so even if the economics changed I'd likely stick with the gabapentin.
Almost all brand-name proscriptions in the US I've been on have been prohibitively expensive ... some of them quite a bit more than the Lyrica. What really erks me is when a generic primary ingredient is extraordinarily expensive because the company has released a new time-release formulation.
Like the 24-hour time release Avinza (morphine) was around $800 ... while the generic IR or ER medications were under $50 when paying out of pocket.
I just don't understand how a company can charge $800 for the very first alkaloid to be isolated and used as a pharmaceutical. Morphine was first marketed in 1817!
Polio195555 karma
I have also been on gabapentin, but I got that at a subsidised rate too, thankfully. I was previously on morphone but I could barely function (ie; walk around) so my doctor and I decided to do a ketamine infusion to get me off of it. One of the worst experiences of my life.
D_R_U_G_S-70 karma
McCarthy has never actually encouraged people to not have their children vaccinated. In fact, she's made very statements to the opposite ever since the beginning.
Polio195557 karma
I'd like to think that claiming children will somehow contract autism is enough to directly or indirectly encourage the non-vaccination of children.
Wolfiegirl77954 karma
Thank you for doing this AMA. I have a couple of questions for you.
-Did your parents agree with the anti-vaccine movement? Or did they not vaccinate you for different reasons?
-What is it like living with polio? Seeing as a lot of people see it as a thing of the past.
-What would you tell people who are against vaccines?
Polio19551474 karma
1) My mother didn't agree nor disagree with it. I don't even think it was an issue at the time where I grew up (Sydney, Australia) with an anti-vaccine crowd, but I'm not sure. I just think she was blind to the consequences.
2) To be honest, I feel like a freak. And I've become moreorless a hermit because I don't like going out because I get stared at, and sometimes that becomes too much. Having people my own age who turn to stare at me.. I'm just saddened by the example that adults like that set to children, that people with physical disabilities are something to be stared at like a freakshow.
3) That they need to take an objective view and read the evidence that is out there. It's really that simple.
pete17291475 karma
Do not, DO NOT, become a shut in. Screw those people who look at you funny, you look right back at them. Give them the finger if necessary.
When I was growing up in the 60's, we saw fewer disabled people because it was stigmatized rather than accomodated. This is unacceptable.
Polio1955876 karma
Thank you for your support. I completely agree with you about the 60s. It is much more accommodated today, thankfully. Not everyone is as welcoming as possible though.
ghostabdi98 karma
Australia is quite unlucky to have the break in the ozone layer right there and since its better safe than sorry, if you do go outside in the spring/summer or otherwise on a sunny day, use sunscreen!
Polio1955205 karma
I do love the sun. Because I can't walk around much I spend a lot of my time sitting outside gardening - You're completely right though, I have had to have skin cancers removed. The sun is dangerous.
witchypie349 karma
If I ever make it to Australia from the US, let's go for a stroll; you with your crutch/cane, me in my wheelchair. You're beautiful!
the_pissed_off_goose308 karma
my aunt has polio, and she lives a pretty active life all things considered. you get out there and do your thang, lady!
onlyonceinawhile164 karma
Wow.thank you for doing this ama ! I used to work with a woman who had post polio disorder after having polio as a child. She was a beautiful, brave woman, much like I'm sure you are, and it was so hard to see her deteriorate. I don't have any questions, but just wanted to say thank you again for doing this ama.
anonymousphilia111 karma
I am very sorry that people stare at you such that it makes you uncomfortable engaging with the world as you deserve to; I am regularly disturbed by the inability of people to consider the other people's perspectives (and to recognize them as people with perspectives!).
Polio1955145 karma
It is difficult, but I have no choice but to push through, or at least try. The world progresses each and everyday so hopefully this kind of attitude won't be around much longer.
edsolo821 karma
Given the opportunity to speak anti-vaccine advocates like Jenny McCarthy, what would you tell them?
Polio19552069 karma
I would ask her if she is actually completely serious or just doing it for attention/money/infamy. I think I would probably shout at her. I know it wouldn't do much to help, but I really get angry with the disinformation she is spreading.
She is an insult to every disabled person in the world.
abrakadamnit557 karma
How do you feel towards your mother? Does she regret her decision now?
Polio19551399 karma
I love my mother.
My mother told me at the time and later in my life that she was waiting for a letter from the health services for when the vaccinations would occur, but I've since learnt that she made that up. I keep in mind that she was only 19 when I was born (1955) and she was a single mother. She had no help from her parents and was only 23 when I contracted polio in 1959. I really think she just had no idea what she was doing.
Polio1955859 karma
No, unfortunately not. Growing up in inner Sydney though, I did used to go and see and hang out with AC/DC before they got big (just before the time of Jailbreak)!
lazespud2209 karma
Oh god. Now I TOTALLY know you are a bad ass! my god... AC/DC in 74. My holy god... that must have been awesome.
Polio1955307 karma
Thanks! I used to see them at Millers Hotel, and Checkers in Sydney and a few other pubs. Entry used to be $2 back in those days.
solinaceae64 karma
I'm sorry if this is a difficult question, but I wanted to ask something.
As you probably know, in the global effort to eradicate polio, there were two options for vaccines. There was the Salk vaccine, which was a completely safe injection, but more expensive to produce. And there was the Oral Polio Vaccine, which was much easier to mass produce and distribute, but had a slight risk of actually infecting some recipients with polio. They ended up going with the OPV, and the eradication efforts went fairly well, all things considered (though polio is still being fought in some parts of the developing world.)
My question is: Do you think it was ethical to eradicate polio quicker, using the OPV and causing some children to become infected? Or was it more ethical to use the safer Salk vaccine, but be able to give it to less people?
Again, I really apologize if it's a difficult question, and please don't feel pressured to answer this if it makes you uncomfortable.
Polio195569 karma
That's a great question, but I don't know if I possess the knowledge to answer it. I suppose it is a completely subjective question. I'd like to think that the wellbeing of a community should trump any immediate financial boon for that society, but of course that's just opinion and I can understand if people feel the opposite is a better option.
Polio1955853 karma
Well, I only know what it's like to be pregnant in my condition, so I'm not sure how to compare.. It was very, very difficult but I know it is for all women.
Both of my sons turned out healthy, and that's all that I could've asked for!
Steampunk_Moustache385 karma
Please, please contact some media people. Go for TV.
You're mostly preaching to the choir here on reddit.
Polio1955305 karma
Thank you for the support, but my aim wasn't for this to become this big! It was just to share my experience with whoever was willing to listen.
smrteater337 karma
My wife's cousin 2 years older than you, contracted polio as a baby. Her's was no where as near as severe as yours. The vaccine was not available in time for her. In what year, at what age did you contract the disease?
Polio1955761 karma
I was 4-5 and contracted it in 1959-1960. I remember the day that I first came down with the virus, and I had to walk home from school for an hour. When I got home I couldn't stand up anymore, and my mother was in tears begging me to stand up and try to walk. Times were different..
I'm sorry to hear about your wife's cousin. I hope she has lived a great life.
mrs_trunchbull294 karma
Thank you SO much for doing this AMA. I am a staunch pro-vaxxer and I think you're very brave for coming on Reddit to tell your story.
Can you give us some more details on your treatment? How old were you when diagnosed, what typical lifetime events were impacted (finishing school, getting married, etc.?)
Polio1955457 karma
I was 4-5 when I first contracted polio. Regarding the treatment, I got a 6 inch steel plate below my patella at age 7. I was in a hospital bed for 9 months after this. I was in a full plaster cast from toe to hip for 12 months immediately after that.
When I was 9, I broke my leg while wearing a caliper on my leg and was put into another toe to hip cast for 15 months. During this occasion I was in traction and was confined to a hospital bed for around 15 months.
Every 6 months after this I'd go for leg measurements and exploratory surgery. I was something of a special case being so young and suffering the polio in the place that it was, so I was.. I hate to say it.. paraded around, for medical students at the time.
School wise, I went to a school that was titled as a "Crippled Children's School". The students there ranged from sufferers of polio to blind students to deaf students and everything in between. It's kind of interesting, each group or clique of students were made up of sufferers of the same symptoms. The blind kids would only hang out and sit with the blind kids, the deaf with deaf, the wheelchair bound kids with each other..
I've been married twice and divorced twice. I have two sons from my second marriage who are now grown men at 26 and 28 years old. My second husband left me only about three years ago.
RambleMan238 karma
I'm late to the AMA, but my question is actually for Shaun. Reading these words knowing Shaun is typing them I wonder how much of your mother's story you knew before this AMA. My dad suffered from a variety of things in his life (nothing like polio) and I was alive for all of it, but it was just part of life, not something I ever sat down and interviewed him about, what it was really like to experience the pain and struggles that he did. You're a good son, Shaun, for being there and supporting your mom with this educational AMA.
Polio1955554 karma
Hi. Thanks for the question. I knew most of the story but admittedly not all of it. I got a little upset typing some of these things out as my mum has been crying through a few of the answers.
My mum's condition has been a part of my life since I was born obviously. I never really questioned it. Obviously I knew that my mother had s problem with her leg, but she educated us about it well, you know, to not judge people for disabilities. It's very difficult to see my mother in pain everyday of her life. It is really saddening to realise that there's pretty much nothing that I can do to help my mother achieve a life that's better than merely "satisfactory". That's probably the hardest part.
Thank you. I try my best.
notonthisbus140 karma
Wow. Two things. I feel sorry for you being "paraded around" but since it was not a disease that had been eradicated maybe you helped a number of others by being an example of what to look for or to expect. Second. Do you think that today's integration of those with diverse handicaps into schools would have been beneficial?
Polio1955153 karma
I haven't thought about your first question before.. That's an interesting one, thanks for it. I would like to hope that the answer is yes, but with the current anti-vaccination thing going on, I'm really not sure.
I don't think so on the second one. I mean, I really want to hope it would, but I am not sure.. With my kids at school, there were disabled kids that were integrated with non-disabled kids and the exact same thing went on that went on when I was a kid. It was very sad to see handicapped children being picked on by able bodied children.
Kath__128 karma
As someone in the medical field, I hope you understand that you weren't being paraded around as a side show or anything, a lot of things we learn about are so rare that we can't really conceptualize it. When a patient with a rare disease is seen they are often shown to a large population of physicians/medical students in hope that a spark can be lit in one of us that will allow us to hypothesize a treatment that has not been attempted before.
Polio195560 karma
No I understand. I was completely open and willing to do it, it was just the fact that I was being seen more as an object as a person I suppose.
Picodick263 karma
Sorry you had to go through this and live with the misery it holds. My sis had polio she got it before the vaccine she was born in 1948, is ten years older than me. She has less severe results but I know how much pain and fatigue she has.I am certain yours is as bad or worse than hers. I have always felt guilty I was able to be protected by the vaccine and she wasn't. This is a great service to open yourself up like this. I think many people don't realize how bad polio was..and that there are people still affected.
Polio1955256 karma
Please don't feel guilty at all. I know for a fact that your sister would not hold anything against you for being born in a time that the vaccine was available.
Thank you for the comment. I hope you and your sister are doing well.
Polio1955545 karma
Daily! It's not "legal" here, but not exactly frowned upon. It's not really policed.
T_Michelle693237 karma
My father , may he rest in peace, contracted polio at a young age in Scotland. He quickly became paralyzed from the neck down and was in an iron lung to breathe. He got out of the iron lung and he too had the virus leave his upper half only to localize in the lower half. A hospital became his home. Boarding school was his next battle. Then college for fashion. Then opening a hair salon in Canada. Then starts a family. He was ambitious for someone in pain every minute of the day. A sever limp due to one leg being 3 inches shorter than the other-- that big leather boots help correct the gaps and add support - his hip smaller on one side, and a leg completely dead from the knee down. He later got surgery to have a leg lengthened but hated the hospital as it brought back tramatic times from childhood. After raising two healthy able bodied children as a stay at home dad the struggles of PPS hit my family hard and knee troubles had doctors debating surgery that brought the dreaded 'needing to learn to walk again -- for the 3rd time'. and my mum planned to divorce him ... We lost him suicide the next year but he was a positive gentle soul, my best friend and a true inspiration, with a perspective that Few have and share. He left us a note saying 'never doubt you are loved' & During his darker days he wrote a book to keep his spirits up that would share his story with others.. It was never published as he could not find someone who wished to back it. And it really wasn't finished , one of my goals is to do that and get it published but at 24 I need to get on it already. His book, it is called 'Smile and the world smiles with you' ... Can't believe it has been 10 yrs he has been gone but he would have been 65 last month. If you would like to read his book it I would love to share it with someone who might find some interest in it ?
I ask you to stay strong and smile often. I wish you all the very best. Nice to see an interesting AMA . :)
Polio1955148 karma
Hello. I have a lot of admiration for your father from your story. It really is a battle through the plain, everyday.
I would love to be able to read your father's story.
ForTheLoveOfGiraffe154 karma
How do you feel like your life has differed due to having contracted polio compared to if you hadn't have contracted it?
Thank you for doing this AMA - occasionally I worry about vaccines due to hearing a lot of negatives in the media and even when I read up about how they're false claims, a small voice in the back of my head goes 'What if there is a little bit of truth?' AMAs like this remind me of why vaccines are important and that I need to ignore the media hype for when I have children.
Polio1955172 karma
I don't think I can answer a good reply to the first part. I only have my perspective.. I understand other peoples' points of view are completely different to my own, but I don't know how it'd be the other way around.
Yes, ignore the media hype behind the anti-vaccine crowd. That's all I can say.
monsus151 karma
Thank you for doing this AMA!
If it's not too intrusive or sad: what is the one thing you wish you could have done if it wasn't for your polio (or the results of it)?
and, to balance things out, what is a good thing about it? Has it given you a better perspective or appreciation for life, modern medicine, etc.?
Polio1955502 karma
I wish I could run. I wish I could ride a bicycle. I wish I could take my dogs for a walk. I wish I could walk without crutches. Most of all, I wish that people would see me for the person I am inside, rather than see me for my prior-disease.
I don't think it's given me a bigger appreciation for life or medicine in general. If anything positive, I think it's hardened me as a person.
dead_boy123145 karma
Reading your comment made me appreciate the gift of life. Thanks for your AMA. You are so strong.
Polio1955194 karma
Thank you for the support. A lot of people just don't realise how lucky they are to have their health. I hope this AMA has provoked similar feelings in other people.
polonium269135 karma
Thank you so very much for doing this AMA, The way you answer questions is eloquent and polite. Many able body people are much more jaded. I think you are amazing.
smrteater120 karma
Heard on the news yesterday that India declared itself polio free. Unfortunately it showed a hospital full of adults that were not well cared for.
Polio195594 karma
Wow, congratulations to the health services in India! That's great news, but saddening to hear about the people in that hospital..
13thmurder114 karma
I'm sure someone must have already asked this already (though i can't seem to find it, searching through this thread) but... how? Where did you find the polio virus to be infected with?
Polio1955218 karma
I'm almost definitively positive that I contracted it from a public swimming pool in the suburb I lived in. There was about 20 children that contracted it from the same area I lived in.
It's really hard to trace back exactly where it could've come from.
Montastic109 karma
Hi there. Not a question, but my aunt is in the exact same boat as you. She also didn't get vaccinated (due to a bunch of family reasons at the time) and she got polio. It basically changed the course of her life. She can barely walk, she has trouble finding a job, all her money goes into pain management, etc etc.
I'm so glad that you're doing this AMA and will probably be showing my aunt this
ElfmanLV84 karma
Hey there, not sure if you're already using an orthosis (brace), but I'm a student orthotist and I think you could really benefit from one. Some of the drugs in your pictures are pretty heavy duty pain killers so I assume you're in a great deal of pain when you weight bear. I see from your comments that you were originally from Australia? Well, if Australia's healthcare/insurance system is anything similar to Canada you probably only need to pay a small portion of the total fee for an orthotic device.
The device you'll likely need is a KAFO (knee-ankle-foot-orthosis) and will look similar to this: http://4.bp.blogspot.com/-HnLtCu8MDa0/UjLC_g2aQYI/AAAAAAAAA-o/J-DoX2d23JU/s1600/alat_bantu_kafo_untuk_kaki2.jpg
Not many family doctors know too much about orthotics/prosthetics, so please specifically consult them about an orthotic device. Physiotherapists will likely have some knowledge on this as well. If a referral is not required, you can even look up an orthotist directly yourself.
Hope this helps.
Polio195583 karma
Hi. Thank you for the detailed post! I do have a brace, but it's quite heavy (for me, anyway) and my leg cannot lift any weight at all. Apart from that, the curvature of my leg makes it very difficult to actually get it in there, let alone walk with it. I've recently acquired a wheelchair which I plan on using quite a bit - admittedly with some dread, it's really sad to contemplate the loss of walking.
UncleFunny67 karma
Have you started to experience Post Polio Syndrome? My father got polio when he was 20 years old (he is 80 now and it was 6 months before Jonas Salk released his vaccine.) He was never supposed to walk again but was able to walk like a duck without his Canadian crutches after about 3 years. I felt so fortunate that he could walk for most of his life, but PPS took that ability away around age 75.
Polio195568 karma
I suffer from all of the aspects of PPS, yes. Though I need to say that it almost feels like a "pigeonholing" kind of definition.
I am very happy to hear that your father was able to walk unaided until 75! What I would give to be able to look forward to that!
Lion_on_the_floor67 karma
Since many cases of polio have been prevented from vaccinations for so many years, do you have trouble finding specialists or doctors who are able to appropriately treat you?
Polio195598 karma
It's very hard to find specialists like that, even at leading hospitals. The registrars don't really have any idea about it these days.
I see a pain specialist, rather than any specific polio-related doctor. He's very knowledgeable about polio so I am lucky to have him.
Polio1955198 karma
I fully agree with disallowing children who are non-vaccinated to go to public (or any other!) schools. I really believe that it should be possible to take criminal action against parents who refuse to immunise their children. I mean, nothing like 1984 or Minority Report where someone is arrested for not doing something, but if a child develops a disease, it's the fault of the parents and nobody else.
In a civil law sense I suppose it makes more sense to notify child protective services. I can't speak for the US, but here in Australia if a child is refused immunisation through the parents, child welfare would be brought in immediately.
kam070654 karma
here in Australia if a child is refused immunisation through the parents, child welfare would be brought in immediately.
I'm not sure that's true. I live in Sydney too and I know several parents who are elective anti-vaccers. None have been reported to DOCS. And even if they were, DOCS would not take action for this. I agree that it is a missively important issue, but there are so many cases of immediate abuse that DOCS already can't handle.
Polio195555 karma
Wow, thank you for the information! In the cases I've seen when my children were at school they were all referred. I suppose I assumed it was a government directive. Thank you.
lucydotg61 karma
Thanks for doing this AMA. I'm glad to have learned more about polio. My grandmother got it as a kid in Texarkana, Arkansas (SW USA). She's in her late 80's now, and still kickin' but is pretty crooked. Best of luck. Hopefully this disease can be eradicated eventually.
Polio195569 karma
Glad to hear your grandmother is doing well! Please send her my love from Australia.
I think polio is among the next to finally being eradicated. The situation in the subcontinent is the only real stepping stone, I'd like to think.
WordEGirl59 karma
Are you angry at your parents for not vaccinating you?
I would LOVE to see you on a show like Ellen or one of those sharing your story. I think hearing from someone who has lived with one of these preventable diseases could make all the difference for some people (my own husband had pertussis -- while not as physically disfiguring as polio, he was a mess for about six months -- coughed for six months. It was hell on earth for all of us).
Polio1955114 karma
I'm not angry at my mother at all, no. The key to that fact is that she didn't have open access to the information about vaccines and the consequences of not having them. That's why I think it's so important in the present. The information is out there for everyone to openly read - It's still a matter of ignorance, but it's ignorance by choice that is the problem.
Pertussis is never good, I hope he got through it okay!
a_carnivorous_ocean46 karma
Great AMA; pretty much every question I could think of was answered.
So...what brings you the greatest joy? What are your hobbies? I noticed you have lovely handwriting. (freelance artist here haha)
Polio195587 karma
I love gardening, especially cacti, succulents, orchids and any kind of vegetable/fruit. I also like playing poker online (not real money) against facebook friends.
DoYouEvenCare45 karma
Do you suffer from Depression or have you ever been suicidal? You are so strong. How much does your condition affect your relationships? This might be too personal but why did they end and did it have anything to do with your condition?
Polio195589 karma
There's days that I feel that I've had enough. I take antidepressants (they're not in the image above) because of the depression. It's hard being in chronic pain. Being in chronic pain kind of keeps one on edge and.. I suppose I get snappy at times. It's hard to be nice 100% of the time.
I think my condition played a role in the deterioration of my second marriage, definitely.
Thanks for the compliment!
iamjordan838 karma
I recently read an article about smallpox and other infectious diseases, which got me thinking about other vaccines.
As a child did you receive any vaccines at all? Additionally did you receive vaccines later in life (wherein you personally went about obtaining vaccinations to prevent any other infectious diseases)?
Polio195561 karma
The only thing I was immunised against as a child was tuberculosis, and that was because my grandfather died of TB. With TB, the living area and all items need to be cleaned meticulously - I actually have my teddy bear left from back then, I remember we had to get him dry cleaned so he's a lot fluffier than when I first got him! I'm not sure what other things I got immunised against, but I am not completely sure about anything that I got.
I get seasonal flu injections now every winter now.
Midwestvibe37 karma
As someone who is, as you say below, somewhat sensitive to the rudeness of strangers - how do you want to be treated by strangers? What can people who want to be nice to others do to make you comfortable around them?
Polio195597 karma
Oh, it's not necessarily that people need to actively act somehow different at all! I don't want people to have a change of personality because a disabled person is around, that's the last thing I'd want. I am more so bothered with the staring and sometimes demeaning comments.
Two afternoons ago, a woman in the supermarket said to me "Oh, I didn't know people like you came out at this time". It was 4pm. What can I possibly say back to that, haha?
Polio195571 karma
Hi. I have two rails in the shower, one vertical the is next to the taps, and one horizontal that is 90 degrees to the wall with the shower head. I also occasionally use a shower stool to sit on in the shower because my deg gets tired without the aid of a crutch, and it's obviously very slippery in a shower so it can be dangerous.
pronto28534 karma
So, have you ever dropped that fact on somebody who was anti vaccines, either online or (hopefully) in public? How did that go?
Polio195540 karma
No, I've actually never come across a person in real life that has shared those views. I can't speak for people I've spoken to online, but no one has ever brought it up. I'm not even sure what I'd say!
serein32 karma
It's funny (though not in that ha-ha sense) that all of the people I've read about who weren't vaccinated as children are so completely supportive of vaccines. I'm so sorry you've had to endure all this stigma attached to your condition, and sorrier still that you have to watch all these unfortunately misinformed people making poor life choices for which their children will suffer.
Thanks for being outspoken on this. I've seen people with polio in developing countries, but I've never had a chance to talk with someone who speaks my own language.
In what way do you feel that your condition has affected you the most, other than the obvious(physical)? Do you feel that your social life, your religious beliefs, or any other aspect has been profoundly impacted by your condition?
Polio195550 karma
I think that the generation gap between say, 1975 until today has a lot to do with the people that don't vaccinate their kids. Most of the diseases became relatively small in the sense of outbreaks and obviously less people were exposed to them/the news of them. Young people today have nothing to look back on, like people living in iron lungs or that kind of thing.
My social life has been the most heavily effected. The medication I am taking is heavy duty so it severely restricts the hours of the day that I can go out - not to mention when I'm lucid.
Genealogy_Ina_Bottle25 karma
Thank you so much for doing this. You are amazing. The world needs more people like you speaking out to counter the ignorance of celebrity anti-vaccine campaigns. Thank you. I really hope to see you and others with your strength become higher profile.
Polio195547 karma
I think my mother (single parent) just had no idea about it. I grew up as a pretty strict Roman Catholic though, so I am not sure if that had anything to do with it or not, I wouldn't be surprised.
HopelessSemantic14 karma
I don't have any questions; I just want to thank you for doing this. I actually had a severe reaction to a vaccine as an infant, and I still strongly support vaccinations. Cases like yours far outweigh cases like mine, and I'm still better off than if I had gotten one of the diseases that we vaccinate against. It makes me so angry that so many parents endanger the health of their children simply because of ignorance and fear.
Polio195511 karma
I hope that it didn't cause any lasting effects. I'm glad you can see past the individual/communal aspect of vaccination, especially considering you were a victim.
SeaCccat12 karma
I know I am a little late to your AMA but, I just want to say thank you for doing this. As a medical professional it is now a constant battle to get parents to vaccinate their children due to this movement. You are incredibly brave. Thank you for sharing your story and concerns for this frightening movement.
Polio195513 karma
Thank you very much. I can imagine that as a medical professional there's nothing more infuriating to be told that you're wrong by someone who is completely untrained in the subject.
bijouxsupreme10 karma
I currently work in research in infectious disease and I volunteer in hospice care: my patient right now is deteriorating from post polio syndrome. He has the same disabilities from polio that he got when he was a child. I can't believe the ignorance of the anti vaccine movement, who get their facts from blog and google university when in reality they can get real statistical evidence on vaccines and their importance on Pubmed and the CDC- medical schools actually teach their students how to combat anti vaccine parents. How sad is this and how long is it going to take before it's people realize the truth and it's too late?
Polio195513 karma
I think that is truly the saddest part. That people in today's age have essentially unbounded access to current medical knowledge, yet choose to ignore it.
bewbs-like-i8 karma
Going to sound a little crazy but I highly recommend marijuana. May replace some of that- quite effectively.
wish_i_was_the_moon6 karma
Rhanks for the AMA and hugs to you, my dear! Anti-vaxxers truly scare me and it makes me happy that people are speaking out.
You are in a somewhat unique position. Have you ever considered becoming an activist doing things other than this AMA to get your story out there? (i.e. a blog, twitter feed, youtube channel, whatever)?
Polio19556 karma
Thank you very much!
No I haven't considered it. I'm not great with technology. I might consider it after the way this AMA has gone.
Squirrel_in_ur_head5 karma
Have you ever had a debate with an anti-vaxxer? Like just some asshole in real life that has said they think vaccines are bad?
dtcock4 karma
Is the cephalexin (keflex) really for the polio or for something else? Polio is a virus, and I've never heard of anyone trying to treat it with an antibiotic like keflex (esp. since it's been over 50 years since the initial infection...).
Polio195515 karma
Oh, the actual Polio infection is long gone. I am simply left with the consequences of it.
The Keflex is to treat pressure sores and that kind of thing that I have been getting for a long time that can get infected. It's not something I take continuously.
Soccadude1234 karma
Do you have a good relationship with your parents or do you blame them for your polio.
Polio19553 karma
I don't blame them, no. My mother is dead and I don't often speak to my father - He left my mother before I was born.
BingHongCha4 karma
You could have a hell of a party with that oxynorm. Do you have amazing parties with that oxynorm?
Polio195512 karma
Haha, I have been tempted! But no, I have to carefully ration them out. If I take one too many during the month and before I get my next repeat prescription, I have absolutely no chance of sleeping until I do get the prescription.
CourtsideRecovery4 karma
You seem like an incredibly strong, kind, and wonderful woman. Keep up your positive attitude and keep inspiring us!
Britneyismyhomegirl3 karma
The history of the polio vaccine is truly horrific. I read a book about Dr. Alton Oschner who had the first polio vaccine killed all of the children who received it, including his grandchild. The second vaccine was thought to have contained the SIV virus. Modern science has done wonders but I can understand how a lot of parents when you were a child would have been weary of the polio vaccine. I am sorry you have such a painful illness.
Polio19558 karma
Thank you. I'm not sure how to respond. From my perspective, it's the parents that have to harbour the fault of the situation, and I really believe that ignorance isn't an excuse in today's day and age. I haven't heard of or read that book by Oschner, so thank you for bringing it up, I will definitely make an effort to read it, I had no idea about the history of the vaccine in that aspect.
d4rthw4ffl3s-16 karma
I recognize that this may be an entirely unpopular opinion, especially on a thread such as this, but my wife and I have declined to vaccinate our children. Our first got nearly a full round (where we felt we were bullied from our then-pediatrician), second got under a half before odd symptoms began developing, and the third will get no vaccinations whatsoever. What most people don't understand is that, like any illness or medication, reactions are subjective to the individual. There are a great many preservatives and contaminants laced in most vaccines, ranging from relatively harmless to carcinogenic. Some are safer than others, of course. I completely understand your resentment toward anti-vaccination groups (and no, my wife and I have no idea who the individual you mentioned is--we simply do our own research, read the labels and ingredients, and pay close attention to typical side-effects of the medications our children ingest) but to vilify all parents who do not vaccinate seems a little excessive to me. I'm well aware of the pro-vaccination community here at Reddit, but what I'd like to say is this: "I really believe ignorance isn't an excuse in today's day and age," you wrote; yet you have no knowledge of the harmful history of the Polio vaccine (and, I'd venture to guess, the others as well). The point remains the same in this instance, methinks. Before conducting an "IAmA" about a relatively controversial subject, I think it's entirely appropriate to be informed about all aspects of the content, not just those that you're biased towards. Either way, I'm profoundly sorry you've had to endure such hardships. Godspeed.
Polio19553 karma
I don't like to believe in such a thing as "pro-vaccination".
If someone is willing to risk the death of their child because they've read about contaminants, which I'm going to guess is this tinfoil "mercury"kind of thing, well, that;s all that needs to be said.
I think I'm as unbiased as possible. I was unvaccinated, developed polio and live in chronic pain everyday.
Thank you.
qmzn612 karma
Is there a certain age a child should get this vaccine? If so, is there a chance to still contract the disease if vaccinated a little too late?
Polio19551 karma
Hi! I am absolutely no expert or doctor when it comes to the timing of vaccinations. From what I remember of when my children were babies and young, they had three or four polio vaccinations, starting when they were only a few weeks old.
I am not sure about the chances of being infected at a late age. When I was infected though, there was many middle aged people who contracted it.
_FancyBandit1 karma
Why did she not have you vaccinated? It seems like one of the first things someone would do for their child.
Polio19553 karma
She was a young, single mother that was working three jobs.. I just don't think she had any idea of the immensity of the consequences of not doing it.
shutterbug7111 karma
My brother had polio in 1979. He was 2. He recovered. Mom vaccinated the rest of us. I also have a brother with Autism.
Polio19556 karma
No, I was very lucky that it was localised in my lower body only. The ward next to mine contained six iron lung machines though, and that was a very scary thing to see as a child.
smrteater4 karma
Sorry deleted my question about the iron lung as you had answered it up above. Reply was to whether if the disease was confined to your lower body would you need an iron lung.
Morgan_19851 karma
My pregnant wife is term + 8 days. We have mixed feelings on vaccinations. We believe in there use, but it seems like too much for an infant to have to be exposed to within the first few months while it is still just developing an immune system. Do you have any advice for us?
Polio19553 karma
I completely understand your feelings, but it didn't stop me from having my children immunised. It's one of the first things I organised after both of their births. I would never wish something like polio on another human being. Please don't risk your children's health.
dekardo-12 karma
Here are some consequences of vaccinating: how do you disregard this?
http://nsnbc.me/2013/05/08/bill-gates-polio-vaccine-program-caused-47500-cases-of-paralysis-death/
Polio1955-1 karma
I don't have time to read the article and comment on it right now. Thank you for linking it though, I will definitely read it after I finish this AMA.
Polio19554 karma
Oh, I don't blame my mother at all. The truth is the truth. She chose not to have me immunised against polio and I contracted it as a 4-5 year old girl. My brother has been dead for a few years now and I still love her more than ever.
Think what you like, but your comment shows a deep misunderstanding.
Polio195519 karma
Actually, the polio vaccine was introduced in Australia in 1953.
http://www.abc.net.au/health/minutes/stories/2003/03/26/816475.htm
rbrychckn2317 karma
Have you ever thought of "going public"? I say Reddit should lobby for you to be a guest on The View.
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