The Wheel Question
What is Muscular Dystrophy? access rating, what do they do? Ventilation, why it’s needed and for whom and why? Is there a lack of funding for care? Access for wheelchair users, how bad is it? Technology and accessibility, how does it help you? How does your mental health affects you as a disabled person? These are some of The Wheel Questions that will be covered by this podcast, and hopefully it will help others physically disabled and able bodied people to understand and what helps and what doesn’t help. As myself, a physically disabled person I’ll provide my experience of my physical disability and the difficulties that I have faced physically and mentally in the past, the present and possibly also in the future, and how I have managed to to deal with them and also at times I’ve struggled too. Have a listen, maybe something might help you too!
The Wheel Question
The Wheel Question - What Is Life Like With A Ventilator?
"Life with a Vent" is a YouTube channel by a woman who uses a ventilator and despite the visible medical equipment and planning required for outings, she navigates social and emotional landscapes, maintaining connections and addressing misconceptions about ventilators. Inspired by a challenge from her mother during the COVID-19 pandemic, her channel offers insights and advice on managing medical care and public interactions while ventilator-dependent. Her story, along with my experience with muscular dystrophy and ventilation, underscores the importance of support, awareness, and technology.
Life with a Vent, YouTube channel: https://youtube.com/@lifewithavent?si=DYl8y3_TJCk9lyRw
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Brought to you by Jazzability Productions - Imagination With A Difference.
Welcome to The Wheel Question, brought to you by JazzAbility Productions.
SPEAKER_1:Let's do this!
SPEAKER_2:Welcome to The Wheel Question. And this is another podcast, and I'm your host, Jazz. I have a special guest, always on USA, and with the wonderful technology, I'm able to talk to her about ventilation. So, this episode today, The Wheel Question is, what is life like being on a ventilator? Can you introduce yourself and share a bit about your background and your story, really?
SPEAKER_1:Okay,well, I go by the name Life with a Vent. I have a YouTube channel, and I started the YouTube channel because I have a lot of medical conditions, one of which is having the tracheostomy tube and ventilator. And I do videos about the tracheostomy tube and ventilator and also about my health. And I don't know, that's just do a lot about YouTube.
SPEAKER_2:Yeah, so yeah, I guess you will see a lot of, I don't know, bad experience and good experience at the same time. And I guess your channel is about making people aware about ventilation. And so on, I mean, I myself started using the ventilation from the summer of 2022. So I'm fairly new to ventilation compared to when you started your ventilation journey. So what sort of the year did you start with the ventilation?
SPEAKER_1:I started on the non-invasive BiPAP, the mask on the face. I started that in 2016. And then I got the tracheostomy tube and used it via the tracheostomy tube in 2017.
SPEAKER_2:Yeah, because that's what they did to me. So when I went into the hospital, I got passed out for a couple of days. And then I woke up and I was like, what is this down my throat? It was a ventilation tube down my throat. I said, okay, interesting. I had no idea what was going on until they explained what was happening. And then basically after a week, I they took the tube out and put me on the same mask. you just told me about. And eventually over time, I started testing out the new mask that I can use. Like during the day, I have the nasal ventilation mask, which you have seen. And at night time, it's the one that goes just under my nose, and it covers my mouth as well. So I need ventilation just like you do. So can you describe your disability and your initial diagnosis? Were there any signs of symptoms that would have been related to your disability? And how impacted your daily life, basically?
SPEAKER_1:Well, my disability is mitochondrial disease. It affects the way my body produces energy. So basically, every organ system is affected. That originally was not my primary diagnosis. My primary diagnosis was a medical condition called Postural Orthostatic Tachycardia Syndrome. With that medical condition, my heart races anytime I stand up. And then every time I sit down, my heart rate goes back to normal. So that was my original diagnosis, but then they realized there was a lot more wrong with me than just that. So then I had additional testing, additional doctor visits, and they figured out it was mitochondrial disease. My symptoms really started in childhood. I had a lot of issues with my breathing, and they kept telling me it was asthma or it was just... I was out of shape. So it progressed. And then when I was a teenager, I had a lot of muscle pain and muscle weakness. And again, they just kept telling me, oh, well, you're just out of shape or, you know, they would just pass it off. So I had a lot of medical issues that weren't major, but just minor issues that nobody took seriously until I got profoundly sick about 15 years ago. So about 15 years ago is when everything kind of started that I got majorly sick. And how has it impacted? Well, basically impacted everything. I can no longer work. I no longer attend school. So it's pretty much affected everything in my life.Wow, that's incredible.
SPEAKER_2:What kind of life did you have before you started your ventilation journey? What was it like? Can you share some of your memories? Before you started on your ventilation journey?
SPEAKER_1:So way before, even starting with my medical issues, I led a pretty normal life. I went to school, I went to university, I worked a job, I traveled, did a lot of things, and then once my health started deteriorating, then I could do less and less and less. Before getting a ventilator, I was extremely sick. I was in bed all the time. I couldn't move because every time I moved, my body couldn't get enough air and enough oxygen that I just had to stay in bed all the time. So actually, once I got the ventilator, I can actually do more now. I can get out of bed. I can go sit and do things.
SPEAKER_2:Yeah yeah, because I remember, I went through a period of about five, six months where I just generally felt tired during the day. And I just thought that was due to the fact that I wasn't sleeping well. And because it would take me a long time to turn in bed by myself because I didn't have any night care at the time. So I just put it down to that. And so one day, I went to see my GP doctor. And I had a bit of a urine infection. So he gave me some antibiotics for that. And I remember getting in my car, and it took me absolute ages just to put the seat belt on. And I don't know how I managed to drive to my brother's that evening. And then that's when it all sort of kicked off. Because with me, it was like, I was having soup with toast. I got a piece of toast stuck in my throat, and then it aspirated into my lungs. So I ended up with pneumonia. And only then, when I was in intensive care, they discovered that my CO2 levels in my lungs from the high side. And because I suffer from muscular dystrophy, the muscles around my lungs had weakened, and it wasn't, you know, when you breathe out, it wasn't pushing the CO2 levels out of my lungs enough. So that's the reason why I've ended up on ventilation and so on. Is it true that you were planning to be a doctor?
SPEAKER_1:Yes, sir. Yes, sir. I was planning on it, but I got sick and was never able to finish my studies.
SPEAKER_2:That's the shame. But you seem to know a lot about ventilation. Obviously, you've been on it a lot longer than I have. How do you cope and what kind of support do you have for example. How did you and your family cope with your diagnosis? And how did you cope with you being on a ventilation, etc.?
SPEAKER_1:My family at first, my mom has always been very supportive. My other family members were not so supportive. They had a hard time accepting that I was on a ventilator. So it was very challenging for them. As I've been on a ventilator now for seven years, everybody in my family accepts it and knows it's part of my life. So it's not a big issue now. But when I first got on a ventilator, they just had a lot of questions and they thought, they thought I just wasn't trying hard enough and that I didn't need a ventilator. So it was a challenge to explain to them that, no, it doesn't matter how hard I try to breathe, I can't breathe properly and I need a ventilator.
SPEAKER_2:Yeah, and what kind of support did you have while you were making the transition onto ventilation?
SPEAKER_1:I had my mom and my dad, they've always been very supportive. My mom, very much supportive. She was very, very scared about going on a ventilator, but as soon as she saw how much more energy and how much better I was that I had a ventilator, she immediately was very happy that I had a ventilator.
SPEAKER_2:Yeah, yeah. And I don't know how the American health system is, or what kind of support it provides. For example, I know it's kind of insurance-based, and for example, like your ventilation equipment and your treatment and your stay in hospital, was that all funded by yourself and your family, or did you get like support from charities to help you, or I mean, how does it work?
SPEAKER_1:Well, for the United States, there's the ability to apply for disability, and once you're on disability, there's government health insurance. So I have government health insurance, and they pay for everything. I pay a small amount for my prescription medicines, but everything else the government health care pays for. So all my doctor visits, all my hospital visits, my ventilator equipment, they pay for everything.
SPEAKER_2:We have this on the National Health Service, and it's funded by the tax payer, so basically, anybody who needs hospital treatment is basically free, and so on, so everyone has access to health. And so it kind of made me wonder, because I know in America, it's like mostly it's insurance-based, and a lot of people cannot afford that medical treatment, and so on. But I just wondered how it was over there, you know. So all the help you get is from the government, the treatment, so that's good. What about changes in your daily routine? And basically, how did it change before your ventilation started, and how did it change compared to after you started your ventilation journey? Well, I think... And basically, what adaptation did you make to make yourself feel comfortable as well as everyone around you?
SPEAKER_1:Yeah. Well, the big issue was just leaving my home before I could just leave my home whenever I wanted to and go to doctor's appointments and not have to plan. But now that I have a ventilator, I have to make sure my airways are hydrated before I leave my home so I don't get all that mucus. And then once I go to the doctor's office, I always have to look for an outlet to keep my ventilator charged. Then once I get home, then I have to use a nebulizer to help rehydrate my lungs. So it's just a lot of extra steps on both sides of whenever I leave my home.
SPEAKER_2:I mean, I know when I go out, I know that my ventilation has like a six-hour battery on it. But I also need to take my power cords and the power brick just in case I need it to go a little bit longer. I know it requires a fair bit of planning, so I also use a nebulizer. But luckily for me, I only need it like basically once a day, And I also use a cough assist. Because my lungs are not strong enough to cough, like a normal person can, and try and remove the phlegm so I have to use a cough assist. Do you also use a cough assist?
SPEAKER_1:I have in the past, but I have issues with my pancreas. So every time it vibrates, it really hurts my pancreas, so I had to stop using it. Yeah.
SPEAKER_2:Like you said, you have a YouTube channel, Life with a Vent, and can I ask what inspired you to make a YouTube channel?
SPEAKER_1:Well, it was in April of 2020. My mom was watching a lot of YouTube because there was nothing else to do during that time, and she saw other people on YouTube, and she said, you can make YouTube videos. And I said, no, no, no, I can't. And so she gave me a challenge to make a YouTube video. So I did, and to my shock, it actually did really, really well. So I then thought, well, I'll make a second video. And the second video did really, really well. And then I just started making a video just about random things. And surprisingly, it did really well. So then I just kept making one video a week, and it just turned into Life with a Vent. And as I went along, I discovered people wanted information about a ventilator, about tracheostomy tubes. So I made it a mixture of my life and educational videos.
SPEAKER_2:That's really good. That's really good. And did you get a lot of feedback from people in your videos?
SPEAKER_1:Yeah, yeah. At first, I got a lot of feedback, positive feedback, and even as I continue, people constantly message me or email me and ask questions, and they also give criticism, and they also give compliments. So it's always a lot of feedback I receive.
SPEAKER_2:Yeah, and using your platform, what kind of misconceptions about living with a ventilation do you aim to dispel?
SPEAKER_1:Well, the primary one is that having a ventilator is not a life sentence. People think when you get a ventilator that you're on the brink of death, and they think this is it. I want to dispel that. I want to say, no, it's another chapter in your life. Some people only live maybe a month more with the ventilator. Some people live years. But either way, it's another chapter, and it's another way to continue living. And it's not a death sentence. It's a life. I mean, it's a choice to continue living, and people should not be afraid of it.
SPEAKER_2:Yeah, and what about your emotional and social aspect side of things, has you conditions affected relationship with friends and families?
SPEAKER_1:Oh, yes, definitely. I still have friends and family that don't understand my medical condition, and they still think there is a magic cure for my medical condition, and that I want to be sick, but they don't understand that there is no cure, and it is what it is. So, it's always a challenge to try to explain that to people. The other obstacle I have is people don't understand with my medical condition, I have very limited energy, so I might have the ability to do something today, but then tomorrow I'm too tired, or the next day I'm too tired, and they have a really hard time saying, well, you went to the doctor yesterday, so why can't you come to my house today? It's like, no, no, I'm too tired, I'm too tired. So, it's very difficult to explain that to people.
SPEAKER_2:And do you find that your friends have become more distant, while some friends maybe have become closer to you?
SPEAKER_1:Yes, definitely. Some of my friends have drifted away, they don't understand because I can't maybe go out to eat, or I can't do things, I'm very limited. So, they have drifted farther away, and then other of my friends have kept in contact with me, and they message me through Facebook or wherever, and they keep in close contact, which is always very nice.
SPEAKER_2:Right, and how do you maintain social connection and a sense of normalcy?
SPEAKER_1:Well, just try to, I don't know, try to just go through life and celebrate the holidays, whether if our Independence Day is coming up here, that I try to, even though I can't go out and enjoy the fireworks and enjoy the parades, I might find a YouTube link and watch it live streaming or watch it after it's been recorded. So I just try to keep doing things, even though I can't technically go there, or maybe people will do video and share the video with me, and I'll thank them for sharing the video with me.
SPEAKER_2:Yeah, and how about dating? Do you find it a challenge going on a date or finding a date with a ventilator?
SPEAKER_1:Well, I don't have a lot of energy. I have not gone dating since being on a ventilator. It's very hard to meet anybody because I don't leave my house a lot. And the date would be, well, I guess come over here and we'll maybe watch a movie. But it's kind of hard, so I haven't pursued dating, which has been fine.
SPEAKER_2:Yeah. So what about the emotional kind of thing? I mean, how did you feel from the previous life? And then emotionally, how did you feel when all this stuff was happening to you? And then how did you feel when you were first on the ventilation compared to now?
SPEAKER_1:So going back before I was sick, I just lived my life and didn't think anything of it. Once I started getting sick, I was constantly trying to find a way to find a cure, to find a way to get better. And then once I figured out that that was not going to happen, I became very, very depressed and very upset. So there was a time that I just did not do much. And then once I got a ventilator, it actually was a reverse process that now that I had a ventilator, I was so happy to have a ventilator to be alive, that I tried to start doing things, little things, maybe writing somebody a birthday card or just doing little things to help people and just to be appreciative of my life.
SPEAKER_2:Yeah, because I initially found it a little bit hard to deal with. I mean, basically, I knew about muscular dystrophy about it being. Especially a muscle wasting condition. And when it happened to me, I did not expect that to happen. And when it did happen, I was like, Oh God, how do I get through this? And it just eventually kind of trained my mind to accept. You know, you have to accept that it's happened, and you have to accept, well, I have to accept that I have to do this to basically continue with my life. And once I accepted it, it kind of got easier to deal with mentally. And I remember when I was in hospital and had this testy cough because of pneumonia, and they were doing sessions of cough assist in the hospital. They were doing like five rounds of cough assist, and I was like, no, give me more, give me more, so I can get out of here. I was like in the hospital for 67 days. I just got so frustrated because the people come in, and then they leave before I do, and I was like, oh great, here goes another one when I'm still here. And then one weekend, there was a chap, he came on Saturday night, and by Saturday afternoon, he left already. I was like, how come there's one leaving before me? Anyway, so it came a bit of an ongoing joke in the hospital. But yeah, mentally, I found it hard to deal with at the beginning. And also because I was in the hospital for a long time, and the day I left, I felt really anxious and nervous about being home again. Because it was a whole new scenario for me, a whole new thing to deal with, rather than at home, basically. But yeah, it was an interesting journey. So far, and let’s hope that basically. It keeps getting better. What about any memorable moments as a content creator? Do you have a piece of memory that jumps out at you, that you remember?
SPEAKER_1:Well, just some of the comments I received, some of them are very heartfelt, that they say, you know, thank you, you helped save our daughter, she was very, very sick, she was not getting the right medical treatment, we watched your videos and we were able to advocate for her. So that was very nice. Another one, I've gotten several like this, that the people said they were in a very bad place, they were going to commit suicide, they happened to find one of my videos on YouTube, and because they watched the video, they decided not to commit suicide. So that really, that was really impactful.
SPEAKER_2:Yeah, that's amazing. It showed you've done a lot of good work already. So yeah, that's good. What about advice, what advice would you give to others who may be going through the same problems as you did, or someone who's starting off on being on a ventilator? What kind of advice would you give to them?
SPEAKER_1:One of the pieces of advice would be to not get discouraged. A lot of times there's a lot of information given to you. It can seem overwhelming. The biggest thing to do is not to let that get to you. Just write everything down or record things on audio. And if you have questions, come back to the medical provider and ask questions. Because a lot of times people have questions and they go home and they never ask the questions. So they don't know how to do something, and then a problem comes up and they don't know how to deal with the issue. Whereas if they had this question and they addressed it ahead of time, then they would have the information or the resources to deal with it. So that's just one thing is, don't be overwhelmed. Just take it little by little, and if you have questions, call somebody. Just don't try to figure it out, because you're going to need some sort of assistance and guidance. And something that you think might be a big deal, might be a real easy fix. And if you never contact somebody or get the information, you might make the issue very complex, and it could have just been a very simple solution.
SPEAKER_2:Yeah. I suppose sometimes people do try to do it their own way, and then they get frustrated why isn't this working, and why isn't this working. I guess some people can be a bit stubborn in wanting to go and see a doctor, because they don't like doctors or hospitals very much. Where I particularly don't like going to see a doctor, but I know sometimes I have to. So, I guess everyone's handles it differently in a way. Do you live alone, or do you live with friends or family? And do you have anyone who helps you, like a carers for example?
SPEAKER_1:I live with my parents, and they do most of my caring. I don't require a lot of extra caring, but they do, for example, take me to my medical appointments. If I need something from the drugstore, they will go to the drugstore. So, they do things for me. They're my primary caregivers. I used to have a carer that would come in, but I found it was very challenging because if I was not feeling well, or if I just wanted to sleep, she was scheduled to come in, and she would say, what can I do for you? And it was more of a nuisance because if I was not feeling well, she still had to come and do things for me, and we just stopped it. We just said, you know, my parents can do it, and if I need extra assistance, we have neighbors and friends that can come over and help also.
SPEAKER_2:You said you spend most of the time indoors, but when you do go out, do you go anywhere like cinemas or anywhere like that?
SPEAKER_1:Um, no, not really. Usually when I go out, it's just to doctor's appointments.
SPEAKER_2:Yeah.
SPEAKER_1:Once in a while, I might go to the grocery store or something, but I don't do many social activities. I get too tired.
SPEAKER_2:Yeah. Do you have a find that when you are actually out, you ever get like uncomfortable when people are looking at you and seeing like you're on a ventilation? And you know, how do you feel about that?
SPEAKER_1:Well, before when I had the mask on my face, people would stare at me all the time and they wouldn't talk to me. So actually when I got the tracheostomy tube, people didn't stare as much and they would talk to me. And actually when I go out, so I don't know if you can see, so I have it like this, I often have a jacket that I, and it comes up around here. So a lot of times people don't even know I have a ventilator or a tracheostomy tube because the jacket comes up and it covers it. So people don't even see.
SPEAKER_2:Yeah, with me, because I I showed you the nasal mask that I wear in the day, and I've been out and about a few times with my carer, and I get all sorts of weird looks, like, What on earth did you wearing?? And so on. And it was a little bit annoying to begin with, but then I just feel like, you know, it doesn't really matter what they think. So, it's all about is how I feel, and, you know, I know ventilation is helping me, which is the main thing. One of the main things I was worried about was going to the cinema, because ventilation makes a little bit of noise, you know, like someone a bit of a heavy breather kind of thing. But luckily, what did I go to see? I went to watch Mission Impossible last summer, and I went with my carer, Emma, and luckily it wasn't bad at all. It didn't make that much noise that it put others off, because you have to be very, you know, especially in a cinema, not to make too much noise that would disturb others. But luckily it was fine. I was quite surprised about that. One other question I wanted to ask you was, what about night time, how does that work with your type of ventilation?
SPEAKER_1:So at night, I run a nebulizer to hydrate my lungs. Once my lungs are all hydrated, I just make sure the water chamber on my heated humidifier is full, and then I just go to sleep. It's not that difficult.
SPEAKER_2:Do you find that you are now able to sleep better than before you were on ventilation?
SPEAKER_1:Yes, definitely. I get a much better night's sleep on the ventilator. The only thing I have problems with is I sometimes get tangled up in my ventilator hose, air hose. So that's sometimes frustrating because I get all tangled up.
SPEAKER_2:Yeah, I certainly find that I sleep better when I'm on ventilating than I used to. I used to wake up and needing to turn, because I didn't have night care. It used to take me ages just to turn. But now I get 24/7 care, so at night time when I need to turn. I just ask my care to help me turn. But yeah, it's all good. So at least I get a good night's sleep. I know you have a YouTube channel, and I know everyone can access it. I will leave a link to your YouTube channel link, on this podcast episode page, so that they can click on to see your channel, maybe learn a few things. You know, I'm sure I will, and I hope others will. And I think you are such an inspirational person, and I think that you have already helped a lot of people, and I think it's great that you're making videos about your ventilation, and to create awareness for others to realize what life is like being on a ventilator. And that brings us to the end of this podcast episode. And thank you so much for your time, and I wish you a very happy Independence Day for tomorrow. Thank you.
SPEAKER_1:Do you have any plans? Maybe watch the fireworks, but if we watch the fireworks, we can see them from our house. So maybe if I feel ambitious, I might go outside, but otherwise I'll just watch it. They're live streaming the fireworks, so I might just watch it inside.
SPEAKER_2:That's cool. Thank you so much. I really appreciate you coming on and talking about ventilation and your life. And like I said, I'll put your YouTube channel on the podcast episode, so you can click onto your link.
SPEAKER_1:Thank you.
SPEAKER_2:And I really do suggest that others should go and check your channel out, because it's so good. Yeah, thank you very much. And you take care of yourself, and keep in touch.
SPEAKER_1:Okay, will do. Thank you so much.
SPEAKER_2:Take care Ana. Thank you so much for tuning in to my podcast. I hope you enjoyed the show, and were able to take away something valuable. I want to remind you to follow me on my social media network to stay connected. On Facebook, you can find me @TheWheelQuestion. On Twitter, you can find me @WheelQuestion. On Instagram, you can find me @TheWheelQuestion. You can also email me at thewheelquestion@gmail.com. Keep engaged with me online as I would love to hear from you. And who knows, I may even reply. Your follows, likes and shares make all the difference and really help to build up this podcast and help it grow. So please spread the word. I would really appreciate it. Also, please subscribe to my podcast so that you'll be notified when a new episode is online to listen to and enjoy. Also, check back soon for more episodes. Until then, stay safe, and thanks again for listening.