Beyond Companionship: The Role of Assistance Dogs in Transforming Lives

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Transcript 

Sarah

The first time I put our harness on and I opened the gate, our head, head high and out into the world, she got me onto buses, She got me out on the world. She got me walking.

Beth

Hello and welcome to the disability download brought to you by Pan Disability charity at Leonard Cheshire. On this podcast, we respond to current topics, share stories and open up conversations about disability. In today's episode I have a really good in-depth chat with Sarah, who has Bardet-Biedl syndrome,  a rare genetic condition that affects her vision, amongst other things. Sarah candidly shares her journey navigating life with a disability and introduces us to the incredible assistance dogs that have become her lifelines. Kiki and Nelly. From fostering independence to providing unconditional love, these remarkable dogs transformed Sarahs life. 

Beth

Hi, Sarah. Welcome to the disability download. Thanks so much for coming on. How are you today?

Sarah

I'm not too bad. Thank you. Thank you for having me.

Beth

So, I just want to kick off with a bit about yourself, so if you could just tell our listeners about you, about your disability and what led you to have a service dog.

Sarah

Well. I'm 49. I've got a rare genetic condition called Bardet-Biedl syndrome. But thatdidn't get diagnosed until I was 32.

The first things that started were my eyes squints, and things like that at five years old and then it sort of progressed. I just went to main stream School, primary, secondary and then I just went, well my sight was getting worse and worse. I then went and did a BTEC in caring but also went on studying for nursery nursing. But I noticed at 16 my sight was getting worse and I was not very good in the dark. 

Sarah

So I had a disability option during my nursery nursing course and he came from Loughborough college and he said, Oh perhaps you’ve got RP, which is retinitis pigmentosa, I know, it’s a mouthful. And he says do you want to get tested, you can use the field of vision test, so at 16 instead of going through my local ECLO (Eye Care Liaison Officer) I went recommended through a relative to go to a private consultant which wasn't used to talking to or treating a 16 year old. I was diagnosed with retinitis pigmentosa at 16 and at 23 I had to fight like I don't know what to get registered as blind. I was just told I was going blind and that's it. Off you go. I tried to work with nursery nursing but they didn't really help me much. And then I worked as a nursery nurse for a few years. And then that didn't work because my sight was getting worse again. So I then retrained as a holistic therapist set up my own business for 20 years, called Hands body and Sole S O L E because of the sole of the feet. 

In the meantime, I went back to the hospital and they said Oh would you want to have genetic testing? I said yes. By this time I was about 32 years, no 30 years old. Yeah. And they said, oh, you want to get genetic testing? He (the doctor) says I don't think you've got retinitis pigmentosa. I think you've got this other rare genetic condition in them days it was called Laurence Moon Bardet Biedl syndrome. 

And I got genetically tested. Found out that I’d got Bardet Biedl syndrome which effects your sight, your digestive system and all things like that. I went to an open day of Guide Dogs and then I realised, saw a video. I saw my mother crying, saw my second mum crying watching the video. And that's when I knew I wanted a guide dog and that's where I was a lot, very late coming to, doing and through doing guide dogs. I then had to do long cane training, which I did for 2 1/2 years before getting Kiki my first guide dog, but it's been a struggle. It's still all three of those years of finally getting the right diagnosis at 32. It's like my life began at 32, if that makes sense. I retired from doing my work because of my muscles and my joints and whatever, because it was like 3 hours in the gym. I then started to do more disability campaigning, handling petitions to disability rights, taking on the government at the Royal Courts of justice, and things like that.

Beth

Amazing. Well, it sounds like you've done a lot already. Could you just tell us a bit about your Nelly? I feel bad because the listeners can't actually see her, as she is absolutely gorgeous. What breed is she? Is she a golden retriever?

Sarah

Yes, yes, she is. Can I also tell you a little bit about Kiki?

Beth

Of course, yes. 

Sarah

Well, Kiki was my first dog. The reason I want to say a little bit about Kiki. I had to wait 2 1/2 years, but I trained with a cane, and then as soon as I got her, I knew what I needed to do. And I put my head up and walked anyway. I only asked for two things. A dog full of character, and a large dog. I’m only 5’1ish. But I need a tall large dog so I'm you know, I've got a long body. So they do it on your height, your weight. If you want to walk quick, which I did with my cane. Cars, buses, trains, planes, you name it. So when I started to train with Kiki and I can't remember if you and the listeners can remember. The year we had, we were hotter than Hawaii, but a few days before that I was told I was matched and I went on a matching walk with her and started my training. 

She was a lab head and ears and a very big golden retriever. She was the one that gave me my independence. She was amazing. She was full of characters. She was strong, she was stubborn. She was willful, typical golden retriever, and we had lots of fun. Like going to the garden party at Buckingham Palace for my charity work.

And she was the one she acted differently and she was the one that knew I’d got ovarian cancer. So in lots of ways, I owe her quite a lot. And that's why I was saying that to come on to Nelly now, Nelly, I had to wait 14 months because natural golden retriever, German Shepherd Cross split were too tiny. And also because of COVID, I couldn't train. She comes seven months. She got out the car, put her pawson my shoulders and gave me a kiss and I thought, you’re the dog for me! Did a matching walk, she loves this pub, by the way. Not me. Her. She’s got a reputation at my local pub. She's a golden retriever. She's a very long, tall golden retriever. Very fluffy, very curly. And she's five years old. She was a COVID dog, but she’s, we’ve, come a long way. On the 5th of November we’ve been qualified and working together for 3 years. 

Beth

So what’s the process like, you know, when you're wanting to get a service dog, is it a difficult process? If you could just explain that for maybe some of our listeners that are thinking they might want to work with a service dog?

 Sarah

The thing is, you see, there is guide dogs, but there's also just double check this, because I'm not sure whether I'm saying this right.  The Seeing Dogs Alliance, as well as the guide dog for the blind Association. But I did guide dogs because they came to a local open day.

What it is, is you've got the brood bitches, the mums, so they'll have the puppies, and they will have the puppies till they're about six, seven weeks old. They'll go back to the national breeding center, in, I always say this wrongby the way, Bishop Tachbrook, I think that's right, just the other side of Leamington. And they'll assess their eyes, their ears. They'll stay there until they get matchedfor the puppy raisers. It used to be called puppy walkers, but now they've changed it to puppy raises, which I think is a better way of putting it becausethey're taking them on busses, they're taking them into the theater, they take them in the shopping centers when they go to ASDA or stuff like that. Actually they teach them how to do, you know, they, tell them to, excuse me, Nelly, I'm going to say this word, busy.  They teach them all the basic sort of things and learn the words of like forward, they learn all that sort of thing. And what they do then they'll have somebody in mind who is on the waiting list for a guide dog, the height, their weight, type of breeding. Some people may say they want a certain type of breed a dog, certain colour of dog will only train a certain area. I always say I'm not bothered what breed a dog it is, as long as it's a big dog, it's got character, and I'm not, I don't mind where I train, sort of thing, whether it's at home, or some other parts of the country. This time around it took 14 months. Last time, it took two and a half years. It used to be a list called priority one, which you go up and up and up and up the level of the of the waiting list. But the thing is, once they've got a dog in mind, they'll say, yeah, it's this one. Yeah, it's this one. Then they might that dog may go to somebody else, go to somebody else. That's why, what kept happening with Kiki, because then the Kiki was the right dog, the right match at the right time. Same of Nelly, even though the first dog was a lovely dog, but it couldn't do it. But she came forward, or wait a long time, but she came seven months later. 

She came, I thought, oh yes, nelly's good match for me. Then they contacted me to say, they’d found  a match.  Can we come and do what's called a matching walk? So we went all around the village. I held the harness, tofeel what it's like. I did the walk and said yes to Nelly. Then they said,Oh, she'll be coming to you on the first of October, three years ago. And then after that, we then started the training. 

So for me, (the training) it was five weeks at home. So you normally do busses, you do trains together. You will work in your local areas. You go to shops, you go on the bus. You go toshopping centers, all sorts of things. You train locally. What I did with Kiki, which is hilarious, because my training assistant had the empty harness. I held the handle so he pretended to be the dog. His boss was behind us. And the big boss was behind all three of us. So, I was going around the village with all four of us around my village, and I'm going, good boy from an empty hand up harness, and these women going, what are you doing?

 They came out to see me do that. But Kiki worked from 16 months old to 11 years. I went back on the waiting list when she was 10 and it was sort of a Passover from Kiki to Nelly. Nelly was later because she was a COVID dog, so she was two and a half years old. They normally come to you just before the second birthday  and then every so often, what they'll do is they'll come and do an aftercare visit, where some mobility instructor say, I'm here, go and do a walk. They say, Yeah, you're fine. And then, yeah, check her all over, good health. What the weight is, what you're feeding them on, etc, etc.

Beth: Let me just ask as well. This is something that I've always wondered, and I don't know the answer to it. Well, you know, when it is time for retirement, so when it was time for Kiki's retirement? Yeah, get a choice to keep her?

Sarah: I did, yes. There’s a rehoming person and they'll come in and say, Do you want to keep Kiki? And in my experience I said, Yes. They came out to have a look, because at the time I got Kiki, I've got a small, very small chocolate Labrador called rosemary, our pet dog. They said, so do you want to keep her? There’s a very long list of whatever age they might we don't say, fail anymore. We say, don't make the grade or something like that. Withdrawn. They could be any age. Or they've actually retire early because of the illness or injury, whatever. And a long list of people that want to rehome guide and assistance dogs. And also, they’ll ask if theres a family member you would like them to go to, or friend that would like them. And I said, No, I want to keep Kiki. I kept Kiki,  and she had a lovely retirement for her last four years.

Beth:  I always wondered about that and I thought, God, you must really form this bond. I mean, how could you not? You know you're spending time with this animal every single day. And I just thought I didn't understand what the process was. And part of me was thinking, do you have to give them up?

Sarah: 

Some people have to because they've not got no room, just putting that into the mix. Thats how it all was in my area anyway but it may be slightly different for other people, in other areas, under different mobility teams. I can only say what it's like from the one that covers Leicestershire Rutland and the other bits that go with my mobility, my ability team. It might be slightly different, but at the time, my mum was still with me and that sort of thing. But now with Nelly, I've got my friend Kate. She said she she'd have her if I couldn't keep her. And she's not that far away. And also my friend Rachel, who's as a part of our fundraising group for Leicestershire in Rutland, she said she there's if I’ve got nobody nearby, but if not, the puppy raisers will take them back, because there's a long list of people that would like to rehome a retired service assistance Dog, because, even though they are guide dogs, I'm saying assistance dogs because there are other ones. Some have a dual dog, like my friend does, like the guide dogs and hearing it is an assistance dog and guide dogs, you come on to that assistance dog.

Beth: Well that’s put my mind at restand I think it's really good that you get that option, because I understand for some people, you know, like you said, they might not have the room if they're going to be getting another Assistance Dog, so I think it's really good that they have that option, that they can, you know, they can go to family and friends, so you can keep that contact. 

How has it been having, you know, Nelly and Kiki?How have they impacted your mental health and overall well being?

They've made they've got me out when I don't really want to get out. Yeah, with mental health like, losing my parents within six weeks, and then with Kiki when she was still here, because I lost her in February unfortunately, she got me out of bed. They've got me thinking positively. When I didn't want to, you know. And also get outside in the fresh air. We go locally to the meadows, and it's lovely because of the river she swims against the currant. She's a water dog, whereas and Kiki would only put a paw in it, she makes me smile. She makes me laugh. So did Kiki, with her stubbornness and willfulness and Nelly, here is a full retriever, and she's not as stubborn and willful.  But they make me smile, they make me laugh. They take me to all different places that I'd never thought I'd do. They said, Oh, come on, you've got to get up. You've got, I've got to feed them. I've got to feed Nellie now. I've got to take her out for a walk. I meet. I'm part of this brilliant group of people that I'm helping to do an event with in ending this month, and that they've been there supporting me, my guide dogs fundraising near pike. I've got on boats , I've been to the theater. And Nelly comes in with us, and they will say hello to her. She loves it. And people say hello to you, and it's really, really nice. And people in the village, when they walk around the village and say hello, morning, hello and and she's got the they know Nelly, and they go, I want to go into my local cafe or my local pub. She always pulls me in the pub. My and Kiki did the same thing. And the small story that make that I did rip off Britain for pavement parking in the village. And obviously Andrew ripping came out. And she said, The only way you can get a cut, yeah, and in the narboar arm to tuck her in. Now I was going to a big overall table in the bay window. Anyway, she went to take me to my usual place where me and my friends go. Oh, no. So do you want you? Oh, your friends call me. You come in for me. You want your usual cidery, fruity gin? No, no,

yes, thank you. You lot.

Thank you. So if you walk in front of Angela and then so then

Nelly does the same thing when they've got scaffolding doing all the work. So she can't understand why she couldn't go inside the pub. And when they get off the train, I see I go past the car park, and she go, No, we're not going in today. And people are out because they can sit outside, but, and when they did once, war was and the latter said, Oh, she's giving you a bad reputation. So now, when she knows she's going in the pub, she gets so excited, because I now got a pet area and whatever, and she gets so excited. Oh, mascots come to see us. Oh, flipping it, both guide dogs show me all. That's the sort of thing. They make me smell, they make me laugh, and, and that's sort of the thing, and it keeps me going. But there's at times when you go to places and and you've got to be nice, but sometimes you've got to, like, say, we went into the pub and they said, Oh, no, dogs are only allowed in that those next time going to the area where the dog said to be allowed. But I just and we were there, a friend was going to the in the pictures, and she said, he's not allowed to do that. Since I said, No, but I just left him to go back into the kitchen, back to speak to another member staff, back to talk to a manager, and he come back. I'm very sorry, it's a guide dog, isn't it? Assistance Dog, isn't it? Yeah, you can sit anywhere and thought and that sort and that sort of thing. And I go to Kiki. Used to go to tigers. You go to all sorts of events. I went, went with kicking to other guide dog owners, to the magic weekend for the league and field and that sort of thing. Some big into sport, and also, so it gets you out to groups. But sometimes it's that thing of people saying you can't come in here with that dog sort of thing. And I go, it's a guide dog. It's an assistance dog. And but there's, there's still problems of taxes, there's still problems in there, a little bit sort of thing, but it's a it's better than what it was, but there's still refuse access, refusals. And sometimes that can be hard, but I just do it in nice, polite way, and then, and then, if it's not so good, I get like, the engagement people or whatever involved, to, like, educate them, to say, this is, this is the reason why you shouldn't be doing this. But on the whole, it's been a very good, a very positive experience having an assistance dog. And I it keeps me going, and it makes me smile. And I've done mad things to raise money for guide dogs. By the way, I've jumped out a plane at 13,000 feet doing side diving. And the author did the fourth challenge of the either white challenge of Kiki, my guide dog, yes, looking over the cliffs in either way. Oh, there's the same and we both got medals. So I do and I've done white water rafting and home pier point in the name of a friend. So we do all different things. I've tried saying I do all sorts of things, and I go on holidays, which I wouldn't be able to do that without Kiki, or with Nelly now going on the train, and all sorts. So

this allows you perfectly. Leads me on to the next question, how do you balance? And also, how did you do it with Kiki? But how do you. Alan's letting Nelly sometimes just be a dog, obviously, because, you know, she's got her role as a support animal. Like, are there any particular times when she's like opportunity so she can go and have a play?

Oh, yes, definitely. I'm going to be, in a bit, I'm going to go and see my friend to give her a poster, but I'm going to walk from my village into the neck, because all connecting villages, and take her to the park and take her around. She's what called free running. So she works hard, like she'll work towards what this walking, but it's also called working, because she's guiding me to get there and and she'll she'll pull me and pull me, because you know where she's going. And then I'll get to a certain bit. I'll set her to sit. I'll take a harness off. I'll tell little bait, take a lead off. Off. She goes. And then she does that quite a lot. We do that about three or four times. We either by myself, because I'm looking I've got two parts that I can walk to quite easily, in the in my village, in the next village, but then my PA and my friend and will tell the friends will take us to what's called ever of meadows. And it's that balance, because people think, when they meet them, they say, oh, is my dog gonna have to play your dog? Because they've got this impression that assistance dog work. 24/7, no, you've got to give them free free run time, like downtime, to be a normal dog. And with Kiki and with Nelly, I've always done this happy medium. They work, but they also need to have a run round meat of a dog. And also, I do different events where we different companies, will get a meet and greet of the dog, and then, and they're very good, the staff or people you meet. We do collections, because I regularly do them as well. And they go, Are we allowed to stroke them? And says, So, even though not working, Lenny loved it, and Kiki loved it. They walked towards the people. And we're doing supermarkets, on the on the street sort of thing in areas around the, you know, the where I live anyways. So they she loves that, meeting the people getting the stroke, and then in events to get to meet people Sure, this is how relaxed she is. She'll roll over on the back, x in the air, and gets them to stroke a tummy ocean. So that's all relaxing. And the people that's good, they asked before the stroker, but no, I take we take her to everyone's meadow. She has a good one. Now, you know, she goes in the river. She swims and then she runs round. But I do that two, three times a week, depending on, especially around here, whether it's been flooded or whatnot. It depends. Could get really, really bad. It depends. I may just take around around the block, but i Yes, they need to have in fact, now she knows she's not a she's not working because she's not got that need on. She's not got that harness on. Once that harness goes over her head, she's a different dog. You've

mentioned, Denise, I think this is something that I've actually not thought about. But there's definitely common misconceptions about service dogs. Because, oh yeah, me myself. You know, if I ever see a service dog out that I love I love animals. I love all dogs, and I'm desperate to just stroke everyone's dog? Yeah, I always ask first, but I always feel a bit like, should I be doing that? I don't want to. Some

people, I'm a joke. Some people say, No, don't. Thank you ever so much, but don't stroke them. But I do, especially if it's children. I will, if they want to come and say hello, I'll like drop the handle and say, Oh, she's not working now. Yes, you can stroke her. Yes, I don't mind if, like, she's lying down or whatever a lot of people do if she's, like, really, and he's supposed to have them onto the table, under a chair, but because Nelly so big, she won't go under table or chair. She'll get the side of me so, so if she's like, asleep sort of thing in sometimes you don't want to be disturbing them, because I'm eating whatever, and especially because some people will call identifies still do it, but some people still put the need under the table, which I put the need under my fire, so you don't know it's going to pull you down. What's going excited, because she's an excitable dog, meeting new people and whatever, because of being a COVID dog and what never a lot of them are around the country, are excitable, so they might she might get excited. She might pull me. I don't know what's going on. I've got no peripheral vision, but I've got still some central vision. I've got that, but if you're at the side of me, I won't know what's going on, so it might disturb her. But in the street I will. If you say, Oh, can I say hello, blah, blah, blah, I will drop the handle now and again and let us it's not disturbing now. Could

you share, have you got any stories about a time when either Kiki or Nelly has, like, made a huge difference in your life? For any times where you've just thought, God, I'm so glad that I've got, well

actually, with with Nelly in my village. I love them and hate them. I've got two zebra zebra crossings, and that's where you can across the road.