Transcript of interview with Gina Allan Evans

A transcript of an interview, recorded as part of the Dunedin Public Libraries' oral history project on the effects on the Dunedin community of poliomyelitis outbreaks in the 1940s and 1950s. Interviewee is Gina Allan Evans, who contracted polio in Pt England, Auckland in 1953 at the age of nine. Gina spent long period in an iron lung, and describes her hospital stays, subsequent treatment in the Wilson Home on Auckland's North Shore, in health camps, and exercises at home. Gina now has Post-polio and explains how there is little understanding among NZ medical professionals about the disease.

Transcript of interview with Gina Allan Evans for the Dunedin Public Libraries' He Purapura Marama Scattered Seeds archive Polio Project

00:00

Recording identification

This is an interview with Gina Allan Evans on 28th September 2022, and the interview started at 2pm. The interview is for the Dunedin Public Libraries' He Purapura Marara Scattered Seeds Digital Archive Polio Oral History Project. The Interviewer is Kay Mercer.

The interview was conducted via Zoom.The interview was recorded using the Zoom in-house recorder, and the audio was subsequently recorded to a WAV file for archive purposes.

ABSTRACT

00:34    Verbal permission and introduction

04:24    Gina explains how she experiences polio - what it feels like and its effects on her life

07:44    Gina considers polios to be type A personalities - 'stubborn', determined not to be beaten by               the disease's impacts on their lifestyle

09:04    Gina describes the horror of being told she needed a wheelchair later in life as Post-polio              took hold. She walked the Camino to prove to herself she could still walk, still had control.    Difficulties of the walk, but joy in meeting and helping others

13:21    Gina talks about contracting polio as a 9-year-old at school in March 1953; family in total         isolation for 10 days at home

17:00    Gina taken to hospital - isolated from everyone in small room, placed in an iron lung. Left          alone for long periods; mirror attached to iron lung so could see out of a small window into             the carpark; given a dictionary to read; lumbar punctures with very thick needles - fainted               every time with the pain

21:09    No visits from family during her hospital stay - finally moved to a ward with adult women -            they and their visitors were kind to her - only human connection she received during that              time; then sent to health camp and contracted measles

23:49    Received the polio vaccine (live) and polio flared up again - rehospitalised in an iron lung; at              home, mother embarrassed by callipers and threw them away - little love shown at home

26:09    Gina describes her time in the Wilson Home on the North Shore - acquiring a pet (stick      insect) as she was a lonely and isolated child; mass innoculations of NZ Soldiers in 1955 -      soldiers would let her listen to their transistor radios - she hadn't seen one before

29:18    Gina recalls the treatments and physiotherapy she had for polio - lumbar punctures, water             therapy in hospital; at home mother refused to let her wear callipers and engaged a dance     teacher to take Gina through a ballet exercise regime - made her cry with pain but believes it            helped with her walking

32:27    Health precautions undertaken to guard against polio limited - children went around    barefoot and school toilets unhygienic

34:24    Gina describes the shock of realising that she had Post-polio - difficulty walking on the               Camino and several injuries due to falls in later life

40:50    Gina's experience with Post-polio - coming to terms with transitioning to a wheelchair -    mourning the loss of mobility

43:19    Gina outlines her battles with the health service - Post-polio not understood or recognised -         difficulties getting support for equipment or help at home

46:30    Gina describes what it feels like to have Post-polio - her symptoms

51:34    Gina's advice to other's going through Post-polio; warnings that polio is on the rise again              around the world; comparisons to COVID

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00:34

Kay: Before we go any further, Gina, I want to confirm that you understand that this material is being recorded for archival purposes primarily, for the Dunedin Public Libraries He Purapura Marara Scattered Seeds digital archive Polio project. The recording will be held in the He Purapura Marara Scattered Seeds digital archive www.dunedin.recollect.co.nz. A copy of the recording may be held in digital form by Dunedin Public Libraries, but material held in the Archive itself is freely accessible by the general public, as specified in the written agreement which we've provided for you to sign, and which you have signed a few days ago. Are you happy with that and are you willing to continue with the recording?

Gina: Yes.

Kay: Great, thank you.

Gina: I think anything that helps someone else is... that's why I have a Facebook page, and I talk to people from around the world. And I have a book that's a guide for professionals that I got in Australia one year, and I wondered if you'd like me to send it to you. I don't need it back.

Kay: Thank you, yes that would be great. Yeah, any background information is useful.

Gina: Australia's got around 400,000 people.

Kay: That many? Gosh.

Gina: And I go over to conferences and retreats there often. So I've been more involved there than New Zealand.

Kay: Do they have many retreats here?

Gina: We did three in Rotorua, and then I wasn't involved anymore, and it sort of fizzled out. It's not lack of money - they've got money. They've just moved it all into the Duncan Trust. So I'm not sure where that goes.

Kay: Ok, so you prefer to go and get your treatments and whatever in Australia?

Gina: No, there's no treatment for me.

Kay: Ah, ok.

Gina: I've spoken to Stephen McGrath, the specialist, but... I have really bad osteoarthritis now, which mutates between osteo and rheumatoid, and every joint has been replaced. And my feet, they've straightened to try and help, so I've had about five operations on each foot. No, and I don't know when the muscles are going to go or when they're not. One day I can walk five steps and be alright. Next day I could walk... or even an hour later I could try and do the same and fall.

04:24

Kay: Yes. Someone has said to me it's like the muscles work, but the message isn't getting to the muscles. Is that how you experience it?

Gina: No, the muscles don't work at all. When we have polio, the muscles that are affected - the paralytic part of polio actually kills the cells that control those muscles. And our brain is clever - it takes the next cells and tried to give it the job. But of course they're not made to support leg muscles, and the cells die quickly and they keep getting replaced, and they keep getting weaker. How I describe it is like not having any legs at all. It's as though one minute you've got legs and the next minute there's nothing beneath you.

Kay: Gosh. So that could happen if you were walking along and they would go?

Gina: I've had it where... I walked the Camino. I'm stubborn.

Kay: Have you? My goodness, congratulations!

Gina: And it got to the stage my legs couldn't even take one step and I was crawling and crying. But I finished it. A couple of days my husband put me in a taxi and sent me on and said, "You're not walking!" [laughter] But... that was when I learned how horrifying that feeling you're strong, and you've got nothing. I would say it's like if you hung your legs over a platform in the air, you can feel to your knees but there's nothing below.

Kay: Yep, so you've got no sensation at all?

Gina: None. And when I do have sensation, it's nerve that jerk, and like needles getting stuck in them.

Kay: Yeah, so it's not functioning, is it?

Gina: No, and the feet burn excessively, so I sit with my feet over the bath, with my feet in ice cold water. A funny feeling.

Kay: So they just feel hot?

Gina: No, they burn.

Kay: Ah, ok yeah. Like a really bad tingling?

Gina: No, like you've got them in a fire. [chuckles]

Kay: I've never put my feet in a fire, so I'm not...

Gina: Well, you know when you can get your feet close to a fire?

Kay: Ah, gosh, that sounds horrible.

Gina: No, they're not nice symptoms. And you can't go around whingeing either.

Kay: Well, I suppose not. But I think you're amazing. I think you're very brave, gosh.

07:44

Gina: No, most polio are A-type personalities.

Kay: I've heard that before, yes. You won't give in. You push yourselves.

Gina: Andy my doctor says I'm sort of diabolically honest. [laughter] And I said to him I thought that was a funny term to use. The words I use are specific. And, you know, you try and find a nicer word, and I keep going back... like I will say I am crippled, because 'mobility' doesn't do it for me.

Kay: You can't soften it. It is what it is, yeah.

Gina: Yeah. And it's not a dirty word. Telling me I had to go into a wheelchair was a dirty word. [laughs] I hated it. I cried, I mourned not being able to walk.

Kay: How long ago was that when you had to go into a wheelchair?

Gina: 2013 I went into a wheelchair.

Kay: So you held it off as long as possible.

09:04

Gina: I walked... I walked the Camino to prove I could still walk. You know, I couldn't.

Kay: When did you go to the Camino?

Gina: 2013. [laughs]

Kay: Oh, the same year? My goodness!

Gina: On my 70th birthday.

Kay: Oh, gosh you're incredible.

Gina: It was early in the year over there and just finishing winter.

Kay: Oh, that would have been a lovely time to go.

Gina: Hyacinths were coming out of the ground and blooming, and we didn't rush. Most people walk 25ks a day. We didn't do that, we halved it.

Kay: How long did it take you?

Gina: Six weeks.

Kay: Oh, gosh. But you would have seen wonderful things because you were taking your time.

Gina: And I gave healing from the knee to the feet of everyone who was in the auberges at night. They'd all line up after dinner and I'd give them a free... just a light massage, but I use special cream, so it healed their blisters fast and took their pain away.

Kay: So you would have made some good friends on the trip?

Gina: We had Fred, he was 80, and he cheated - he got taxis every day to one kilometre of the place we were staying. And he clung to me like has was an article of clothing. [laughter] But I never saw him once he got to Santiago. And then there was one Frenchman. He and his friends were cycling, and he fell off the bike and his knee was swollen and he couldn't walk. So I sat him down and put hands on his knees and rubbed him for 10 minutes with cream, and said "Stand up and walk". And he did. So I had lots of nice experiences, and I did a lot of praying and just...

Kay: And it must have been a pleasure to help other people, too.

Gina: Yeah, it's a very personal thing to do. You don't talk. You just walk. And sometimes people would go past and they'd say, "Hi Gina, Hi Reece." Alot of them called me 'madame' 'cause I was the oldest. [laughs] Some boys when past one day and said, "Ah, are you the old lady walking?" So... but it's worth doing. I said to my husband I wouldn't mind doing it again in a wheelchair, but I think it would be just about impossible. Some of those hills were pretty steep.

Kay: Yeah, you'd need a supercharged wheelchair, wouldn't you, with a big battery?

Gina: Yes. I have a four-wheel drive one. My husband bought it so that I could still go to the beach or go through the forest or something with him... big wheels. [laughs]

13:21

Kay: Grand, so you can get out into nature, lovely. Ah, well let's go back. Can we have a look at some of your history? How old were you when you first contracted polio, can you remember?

Gina: I was nine, or going... no, I was nine. And I figured out that the date was probably the 6th March 1953, mainly because it was a Friday, and secondly because I had a little brother born two day later, and he died.

Kay: Ah, dear... gosh.

Gina: And actually he's buried not far away, so he's the only one of my family still in New Zealand. But I was taken from school. I had a raging migraine and I couldn't stand, and the headmaster took me home in the back of his stationwagon, which had been set up to take kids home. [chuckles]

Kay: Ah, like a sort of school ambulance.

Gina: In those days that's what the headmaster did. So I stayed in school 'til finishing, and then he drove me home. And my mother was in bed, so she told me to get in the bath and go to bed and stop whingeing.

Kay: Oh, dear!

Gina: And the next morning, Saturday morning, I woke up and I couldn't life my head, I couldn't move my arms or legs, and I wanted to go to the toilet. And I called out to her and she said, "You're big enough to take yourself!" And so she wouldn't come, and so I rolled, just in one piece onto the floor, and then I wiggled myself, but I couldn't. I ended up wetting the floor, and she ended up hitting me. Then she grabbed my arm and tried to get me up, but I was so floppy she finally realised that I was sick. And then she had to get my sister to ride a bike... we lived at Point England, so she would have had to have ridden around about 10 to 15 kilometres to get a doctor - no phones in those days. [chuckles] And the doctor came, took one look called an ambulance and sent me off. And then the Health Department came and put a big sign out the front and said that the whole house was under quarantine. So they couldn't go out, and no-one could come in. And then the Health Department apparently came in and went around and swabbed the whole house. And they were like that for 10 days. I was told this afterwards.

Kay: They were stuck in the house for 10 days? Right.

17:00

Gina: So they did their quarantine well. And then I was taken to Auckland Hospital, and I remember being driven backwards into the bay. And hurting everywhere, and them examining me. And then taking me and putting me in an iron lung. And I think in those days it was a fairly new machine. They looked like torture chambers. They were round and they had a lot of bits on the side, and they made a horrible noise. And you were in it up to your neck, so your hands were just on the bed, your feet were on the bed, and they didn't even dress me. They just had a sheet over me. And there weren't that many nurses, so you didn't get changed every time, and there were no buttons. I couldn't have pushed on. So I was in the corridor for a while. I don't know how long. And then they took the machine and put it... I called it a broom cupboard, it was a very small, little room, and I could look out the window... just.  There was a mirror, and you could see over your head, so I could look out and see the other things. And the room was so small I could see down where the cars came in. [chuckles] And then, as I started to become more lucid, they gave me a dictionary to read. So they put it above my head, and when anyone came, whether it was a nurse or a doctor, they would turn a page.

Kay: So, not even a book, it was a dictionary?

Gina: So it was like my brain had to read. And I don't know if you've seen the needles they used.

Kay: I've heard they were big.

Gina: In Denmark they have an extremely good part in the museum in Copenhagen, and it's all devoted to what was used in polio. And the needles were [with emphasis] out of Frankenstein. And they were very thick and very long, and the moment they started to put it in your spine, you fainted. And I, unfortunately, had a lot of fluid, because they took a lot of lumbar punctures in a week. When I got out of the iron lung, I was taken to a ward... most of the time you were on your own, Kay, so there's nobody stops to talk or hug, or... there's no interaction with other humans.

Kay: That's horrible for a child, isn't it?

Gina: In the ward they pulled the curtain around you, and then I had an oxygen tent over the top of the whole bed. And air was pushed through that so I could still breathe. I still had lung problems.

Kay: Ah, dear. So how long were you like that? How long did they leave you?

21:09

Gina: I was in that bed for a long time, and then I was taken to another room where there was three older ladies. I think they were 28 or something, but to me they were older. And they got visitors, so they talked them in to bring in chocolate Mars bars, and I'd never seen them. So every time they came they brought me a chocolate bar. [chuckles]

Kay: So you got a bit of kindness from the other patients, but...?

Gina: Yeah. And there was a naughty part - I wanted to go to the toilet and no nurse would answer the buzzer. And in the end one of the ladies got out of bed, picked me up and put me in the hand basin, and turned the tap on. [laughter]  

Kay: Well, that's the best you can do, isn't it?

Gina: I met that lady years later. I never forgot her name or where she lived, and I met her, and she was a very, very kind lady. Then I went to Health Camp. Ah, no before Health Camp, I'd just got out of hospital and my appendix burst, and I was another 14 days in hospital. And then they sent me to Health Camp, and I got measles. And then I got gastroenteritis. And they rang my mother and said, "If she lasts the night, she'll live." And she didn't want to come and see me so it didn't matter. [laughs]

Kay: Ah, so you didn't have any visitors from your family that whole time?

Gina: No, that was the sad thing - I had no bonding. And I went home and the next year I got Asian Flu and Hong Kong flu - they were going around. And then the following year I was doing really good and they gave us all the polio vaccine.

Kay: Ah right, so you were able to have that?

23:49

Gina: And then I went back into hospital in an iron lung.

Kay: Was that because of the vaccine?

Gina: And I had to learn to walk again. But this time, my mother was fed up with these callipers and she threw them away. She wasn't going to be embarrassed with me walking with these metal bits. It didn't matter that I'd flap my feet inwards, and I fell over a lot, she just took it as personal. And then... I ended up back in the hospital in the iron lung with polio again, and back in another bloody health camp. And after that they sent me to an aunt's place in Rotowaro and she just spoilt me rotten.

Kay: Good, you finally got spoilt!

Gina: Ah, my grandmother loved me.

Kay: Ah, that's good. So when you say you had to go back into hospital with polio, was that because of the vaccine?

Gina: Yes. And when I spoke to the specialist in Australia he said that... you know, they figured one in a million would be infected by the vaccine, and that it was a live vaccine of virus 2, and it was non-paralytic although for me it affected my lungs a lot. And they are my weak spot, With COVID it was my lungs, and I wouldn't go to hospital. I stayed home and they gave me a puffer and I [demonstrates inhaler]. So the second time, I was in Wilson Home on the North Shore.

Kay: Right. What was it like in the homes, in the care facilities?

26:09

Gina: Well, I was very much a loner by that stage, so I worked in the kitchen, making the veggemite and butter. So I'd switch the machine on, and switched it off when it was mixed. And then when they took the cold toast, crispbread, out of the ovens, I would spread this mixture over it. So that was my job. And my best friend was a tea tree Jack.

Kay: What's a tea tree Jack?

Gina: A stick insect. [chuckles] [laughter] They get on manuka.

Kay: Ah, ok, so you had a wee pet.

Gina: Well, you had to have a pet, and mine was a tea tree Jack. [laughs] The other kids got on good together, but I'd been so isolated, I liked quiet and not screaming and noise, so I tended to go away from people. And I don't have noise here.

Kay: I think that's, 'cause I've spoken to another member of the group, and she had a mouse in the hospital that she had in a little chocolate box. And I think it's possibly because children would have been quite lonely, so they just... you know, had insects or made friends with mice and, you know, that was their company.

Gina: Well, hospital for polios... the Duncan brats, as they're known by, they had a ball.

Kay: They have said they really enjoyed their time there, yeah. It was lucky if you got there.

Gina: We had a Dr Brown, and the ward I went into was Ward 22. And I went into Ward 22 both times. It was the isolation ward. And I think 23 was too. And when they were sending the army over to Korea in '55, they did mass innoculations for yellow fever and typhus and things like that, so they put them into Ward 23 in Auckland Hospital. And by that time, I was running around in a wheelchair that I could push along, and I went visiting. Because one of them had a transistor radio and I'd never seen one. And he used to let me sit there and listen to the music on it.

29:18

Kay: And going back to the treatment, do you remember what sort of treatments you had when you were in the hospital?

Gina: I had the lumbar punctures mainly.

Kay: Did you have massage, or...?

Gina: They didn't sort of have pain treatment like they have these days. So you'd lay in bed crying with the pain, and they said, "You're a big girl, and big girls don't cry." And if anyone says that to me now, I just about want to punch them. So the lumbar punch was the only treatment I really remember. And the iron lung.

Kay: So you didn't have hot packs or anything like that?

Gina: In Auckland hospital they didn't really do a lot of Kennedy therapy. The Duncans paid for nurses to go to America to learn the Kennedy system. But in Auckland Hospital they had a pool that they used to put me in, and it was probably one tile... you see on your bathroom wall, you know those little tiles? It was one of those high, with a ledge. So they could put a towel, and my head was on it, and then they'd lay me out in this warm water, and then they'd straighten and bend my knees. When I got to the bed I went into traction and God they were painful. No, the treatment wasn't nice if you're talking about the traction in the bed, and... In the beginning I couldn't turn, so I was pretty much just laying on my back with... my arms and legs were straight, and... not nice.

Kay: So, when you got out of hospital, how mobile were you then?

Gina: I had the callipers, so I considered I could walk. Then mother threw them away and that left me very unstable. But the man around the road was a dance teacher. So I think he came to some arrangement with Mother, and I went there and for an hour he would have me holding the barre, and moving my legs and going up and down. And I just would cry and cry and cry because it hurt. But in the end I think that was the reason I could walk for, you know, that period of time that I learnt.

32:27

Kay: So it did help. So were your family aware of polio before you had it? Were you aware of polio?

Gina: No. We knew that polio was in New Zealand, and we'd had epidemics in the '40's, and it was after I was born. So...

Kay: 'Cause it came in waves, didn't it?

Gina: I missed that lot. But we were very aware that polio was around, and wash your hands and things.

Kay: Right. So they did tell you to take precautions?

Gina: But you're talking about kids who went to school barefooted and, you know, we hung around with our arms around each others' shoulders, and... we had fountains to drink out of at school. I don't think they were the most hygienic.

Kay: So they didn't take it ever so seriously, the... no?

Gina: No. And nobody knew that you were going to get hit a second time with the late effects. And even I didn't know that until about 2006, when I went to a conference in Hamilton and met the Australian specialist.

Kay: So had you had Post-Polio by then, or was that a later thing for you?

34:24

Gina: I was still walking normal, thinking that's not gonna happen.

Kay: Ah, oh dear. So when did it hit for you?

Gina: When I started to fall more often. In the beginning I was very aware, I always look where I walk and make sure the ground's stable. I can actually lose my footing on a grain of sand. [chuckles] So you have to watch the whole time when you do stand. And when I transfer from this chair to the other chair, there's not a lot of space I can reach out. This will go up and I can just reach it.

Kay: Yeah, so you don't have to walk too far.

Gina: When it first started happening, it wasn't... really... I wouldn't have said it was my leg muscles. Everyone said, "Ah, you're clumsy." And I just accepted I was clumsy. And then... I've always been a big walker, so the reason... I always used to walk 6ks around the Bombay Hills, so you're up and down and around. And when I was a kid it would be nothing for me to walk from Pt England through to Auckland City... a good 30, 40ks. You know, and I'd just wander along and be quite happy in the weekend on my own. I'd go fishing off the wharf and then I'd wander home again. There were places around I could have gone to closer.

Kay: But you liked to walk.

Gina: I used to go all this routine, and climb things. But when it actually happened the most was Camino. That's where it really hit home I had no control.

Kay: So that would have been quite a shock for you, even though you knew it was possible.

Gina: It was horrible. I just... I mourned like had lost someone I loved most in the world. And I didn't mourn for just a day or a week. I went on and on and on for... ahh.

Kay: 'Cause it would have been like having it again, was it?

Gina: I had a bad fall at the end of 2013. And... I was on my own in the house. This house is three-storeyed. And we built it because my work used to mean that a lot of people from Europe would come and visit. And I was showering and for some unknown reason I just slipped. And I hit my head on a little speaker that's attached to the wall. And I hit my head on the corner. And I had a lump like a soccer ball on the back of my head. I knocked myself out, and I couldn't get up. And when I tried, my hands slipped, and they wouldn't hold me. And I hit my head again. So I spent quite a bit of time on the floor, wet and naked. And I finally got up, and... I wear... long dresses as night-dresses, you know Asian dresses? They're long, though. So I put one on, and then I got to the desk, which is just around the corner from the bathroom and I didn't know who to ring. And I've got a yellow card - in emergencies, ring the after-hour nurse. And so I rang it, and she said, "Ring the ambulance." And I said, "I don't know the number." And she said, "It's 111." I said, "Now I feel stupid." [chuckles] But I couldn't remember it.

Kay: No, well you'd hit your head.

Gina: The ambulance took about 10 minutes, and I had to throw the key out the window, because they said don't walk down the stairs. And they came up. My blood pressure was 279 over 180, with this big lump. So they took me to hospital. And they said, "Can you stand?" And I said, "No." And they said, "Why not?" And I said, "I'm a polio person, and my legs have gone, that's why I've fallen. And my arms aren't strong - that's why I couldn't pull myself up. And I don't know how you're gonna get me down there!" They said, "Don't worry, Gina, we've got a special chair." And they brought a chair up. So... 2013 was my horror year.

Kay: Mm, not great. Has it got worse since then, or has it...?

40:50

Gina: Ah, very much so.

Kay: Ah, so it's progressive now?

Gina: And in 2013... Mark at the Green Lane Mobility Unit, he told Reece to take me and get a chair, a power chair, because I don't have the strength to push.  And Reece said, "Ah, she doesn't need that." And he said, "Yes, she does." And when I had the fall, I had a psychologist, a speech therapist, an occupational therapist. ACC gave me all of these people. So it was the psychologist that helped me with the chair, and coming to terms with it, because that was a really hard thing. I don't think I would have got through it without her. I'm not the type of person that yells help.

Kay: So you would have tried to muddle through?

Gina: And I would have seen me as failing, not anyone else. So... 2013 to 2017, I gradually went downhill, and then it sort of sped up. So my doctor then requested of the DHB to give me a half and hour in the morning, someone helping me shower and dress, because then I'd fallen in between and fractured my shoulder. And I broke a couple of ribs on another fall, and then I broke a couple on the other side. And then I got a wedge fracture in my spine, so he decided getting someone to help me shower in the morning would actually be a good safety measure.

Kay: Yeah, sounds like it, yeah. So you must have been in a world of hurt.

43:19

Gina: The Health Board doesn't recognise polio, so it was a big fight.

Kay: How do you mean they don't recognise it?

Gina: They don't know anything about it.

Kay: Good Lord!

Gina: So that's how they treat us in Auckland... but other people, I don't know. We bought... our wheelchairs I bought secondhand. My husband found them online. My bed is quite a bit bigger than a hospital bed, but it has been... I bought it in the Hospice Shop, so it has been for someone in a disabled... it's like brand new, so it wasn't old. The DHB gave me two hand frames, that help me turn over in bed. They're like a U-frame... and I can hold them and sit up. And I can turn over using them, and get out of bed using it. And they gave me a perch for the kitchen, which is useless. I have a bathchair, and a toilet commode. But that's all they gave me. I had to buy my walkers, when I went from walking stick to walkers. And buy my wheelchairs. And then I had to buy the car to fit the wheelchair, because otherwise you need ramps to go up. I've written to Mr Little and sort of outlined the problems, and asked do they have a way of checking how the money on the Health Board's being spent. But I would say he would know nothing about polio. The specialists at Middlemore asked me if, if one day they got some doctors together, would I go in and talk to them. 'Mostly no, they think it's all in our head.

Kay: Well, they think polio's been cured and that's the end of it.

Gina: Yeah, I think they're going to have the same repurcussions with COVID. It's the same kind of virus, and I think they have to think outside the square. I've advocated everywhere I go, only because I think someone's got to stand up and make a noise.

Kay: Absolutely, and it isn't just you and the older folk who've got it now, it's making a resurgence, isn't it? So it'll come round again.

Gina: Polio is now in the UK and America, the Congo. It's rife in Afghanistan, and it's only a matter of time when we'll get more cases here.

46:30

Kay: So they need to know, it's not just the polio, which is bad enough, but it's post-polio, which is worse in a way, isn't it?

Gina: I would say polio, in itself, was horrific for me. The migraines... I've been a migraine sufferer all my life, but at the time of polio it was absolutely debilitating. And the pain was horrible. Now we have the pain, we have fatigue, we have headaches.

Kay: You've just been through so much haven't you? And do you think it's all a consequence of polio, or is it just that...?

Gina: I think that polio is probably the muscular side of people's problems. And the skeletal side appears to be greater in the Post-polio than in normal people. I don't know whether anyone's actually been tested to see whether they're just a clean osteoarthritis, or whether they've got the mutation like I've got. So you get a lot of inflammation which causes more pain. But a lot of them have joint replacements. Because our muscles are too weak and we wear out all the joints. Fatigue, that's a very prominent one, and fatigue for me, when it's really bad, I can't get out of bed. I can't hold my tablet, what I'm talking to you on. I can't read a book - I'm just too tired to read. I can't eat.

Kay: So do you have trouble swallowing as well?

Gina: I've had four operations on my throat. That's why my voice sounds funny. My breathing and my throat probably are more affected now than when I was younger. I never got colds or flu's in between. But now I just think I get everything.

Kay: So it's like you had a period where you lived, I won't say a normal life, but you lived a life that accommodated the polio that you originally had, and you lived for a period of years, and then Post-polio happened, is that right?

Gina: I had 20 good years. [chuckles]

Kay: 20 good years, right.

Gina: Yeah, and the other day we went, just for a short walk in the garden. And afterwards I said, you know, people take it for granted, but to me it was just such a wonderful gift to have 10 minutes outside in the sun... You could put an ant on me and I'd tell you something's crawling over me, and yet I don't feel my legs when they're not working.

Kay: No, there's just no messages, no communication with your legs.

Gina: Not at all, and I would suspect that a lot  of them will get like that, and a lot of them are in denial. And I know this 'cause I've talked to them, and they don't even want to use a walking stick in the beginning. And I say to them, "Do yourself a favour and go straight to a power chair."

Kay: So, having had various treatments over the years, different therapies, is there anything you'd say to someone in the future, or who's suffering now, maybe, that might help them, that from your experience has been helpful?

51:34

Gina: I think that if they're starting to fall a lot, go direct to chair, and don't think about what it feels like in it, just consider your feet are now four wheels. I think with the after-effects, manage the headaches. I would suggest that everyone get their doctor to write to their DHB and get help for... if they don't want it for bathing and dressing, at least get it for prepping one main meal. Because I found that that half hour of having someone go to that cupboard, and on that top shelf... flour. Go to the middle top, second shelf, blah, blah. I know where everything is, and they can get it.

Kay: So they lay it all out for you and you cook it.

Gina: I actually found I didn't need a sleep after lunch. I wasn't exhausted. But making lunch actually exhausted me. I think people have to manage themselves better. I don't think they're going to get help easy. I think you have to fight for it. I'm hoping... I'm in the midst of another letter to Andrew Little, and I'm hoping it will open the door that other polio people will be listened to easier.

Kay: Yeah. Do you have a sense of how many people in New Zealand are polio?

Gina: I believe it's around about between 10 and 15 thousand. I would say that was conservative, because just talking to people I've found a lot of people call it Infantile Paralysis... or summer flu, which was a common name for it in America. Cincinatti in America had 10,000 kids had summer flu at the same time. Polio at the same time in the same place had... 70 children had virus A polio. And later when they tested the virus that the summer flu was, it was the B virus.

Kay: Right, so it's polio, but it's the different virus strain.

Gina: And up in Iceland, one village got A, and the second village got B.

Kay: There's a lot of similarities with COVID, isn't there.

Gina: And in England, when they got the vaccine for polio there, they gave it to doctors and nurses, and 150 of them were hospitalised with polio...from the vaccine. So there's a lot of data out and around, but nobody collates everything.

Kay: So is there a sort of Government-sponsored or an NGO that does look after polio, or is it just polio people themselves just getting together.

Gina: No. No. Have I answered enough questions?

Kay: You have! I was just thinking I have kept you talking for nigh on two hours I think, so I'm really so grateful to you for talking to me.

Gina: Ah, if it helps polio then I think it's good. I'm really grateful that you're archiving it, and I hope that maybe someone will feel like collating the symptoms and teach it to doctors.

Kay: Well, exactly, it will all be there, so at least, even just in this country the doctors here will be able to look at it and say, "Now I understand what's going on with my patient, 'cause all of these patients have got the same thing happening to them." Thank you, I really appreciate it. It's been really nice meeting you. And hopefully you'll be able to send me your story, 'cause I'd also love to read that if you can.

Gina: Ah, well if I can help, yell.

Kay: Ah, thank you so much. And good luck in all that you do. It sounds like you have a wonderful life. Much to do.

Gina: Ah well... I'll die when I'm ready.

Kay: Exactly. On your own terms, that's the way to do it.

Gina: Yeah, take care Kay.

Kay: You too, all the best to you. See you.

Gina: Bye bye.

Kay: Bye bye.

[Recording ends]