Louise Geib and Rishi Bhosale

00:04 My name is Louise Geib. I am 58 years old. Today's date is August, 18th. 2021. I am in Windsor Connecticut and my relationship with Russia is we are meeting for the first time virtually. I would consider him a fellow vestibular Warrior.

00:31 Hey, my name is Rashid. I'm 30 years old.

00:47 That I really feels that way, doesn't it Rishi. It really does. Well, it's wonderful to talk to you and to talk to someone who knows what it's really like to deal with a vestibular disorder. And I think, you know, we talked about the stipular you and I can talk about vestibular and we know what each other is talking about, but for so many they don't even know the word. And I think that you know, I'd love to ask just kind of a question about like how do you describe vestibular to the people that you meet to the stakeholders, you know, in your life?

01:40 Yeah, it's a loaded question. I mean what exactly is if you tell them like you have some distant tissues, we might just think about that, get infection or something.

02:02 It starts with business in Balance infusion. You have West concentration because your body is trying to get itself in in the in this universe right now because one of yours are both of the years might be damaged, do understand. Where are you standing? Where are you sitting at? What actresses are you on? So the body's trying to regain its balance and at that moment on those practice pitching and it's like all swirl or whirlpool in your brain.

02:56 And the fatigue of Western Reserve disorder is not just like one specific. Diagnosis has many, many things associated with it.

03:39 Yeah, that's a great description. I, I've used all those myself when trying to explain it to people. Other things I say is it's like being up for me. My vestibular disorder is like being on a boat that's rocking in the ocean, or on a lake and not going anywhere. Like, there's no speed to it. It's just, you're just bobbing up and down, and for me. It's like, rocking on a boat 24/7. It just never goes away.

04:15 And whenever I describe it that way and people remember what it's like to feel seasick or have been seasick in their lives before, like from an amusement park ride, or maybe they get seasick on a boat or are sick when they fly or something like that to say to them. That is how I feel and it never stops.

04:39 They they really their eyes get big and they just seem to somehow get it a little bit better at that point.

04:49 Set reminder. Yeah, yeah, and so, you know, you're, you're a generation younger than I am. And so, I started dealing with my disability issues in my thirties, and mine started with a trip, an airplane trip. Unbeknownst, to me, when the plane was Landing. I didn't my ear, my middle ear, popped the membrane in my middle ear. And the next morning. I woke up got out of bed and basically fell on the floor with dizziness and imbalance, and that type of thing and certainly was quite sudden the onset. And then it took about six months for diagnosis where they said the okay. You have a hole in your middle ear.

05:49 And only way that we can really help you is we're going to have to surgically go in there and close up the hole. And so I had to have ear surgery for mine and then it was a another probably year before I was able to say, okay, I feel way better and I was just wondering was your sudden. Did you feel like your onset of of your symptoms with sudden and how did that happen?

06:23 Cheerleading backpack.

06:26 It was early March of 1.00 K locks and spending. Everything was spinning and S. I mean my eyes couldn't see properly. Everything was blurry. Everything was like last year.

07:26 What is on the ground or at least 10,000 lakes are strong enough to feel the ground right now? I, when I grab the food in that kind of situation. I just told myself like this fine.

08:14 And we didn't stop spinning and everything. They gave me and asked me to go home and sleep. I was the same.

08:58 And all of my family.

09:21 Is that point in time? Everything was wondering, if you did some tests on me like that. You don't even seem to be something else.

09:54 Everything was terrible that you were doing with this in the middle of the pandemic. I went there. I didn't like what I said, good. So I have to see physical therapist.

10:34 What are the dates of Ivan to England on April, bondsman? That's what I have and that's where they diagnosed me with.

11:05 Yeah, I mean on top of it, you know, you're trying to see doctors that, you know, and everybody shutting down in the middle of, you know, the 2020 covid-19 pandemic and I can't imagine that is very stressful.

11:27 Yeah, and now I'm so once you got through the system and and was properly diagnosed. You did some What's called the fibular physical therapy, and I was prescribed, that as well. But for me, I was, I was an athlete in high school and I've been involved in sports. My master's degree is in Sports Marketing. So, I already knew kind of what I needed to do in terms of working, the balance system. So while I did go to vestibular therapy for a little while mostly, I kind of made it up on my own and I probably should not recommend that, but that is what I did and I was a business life on snow skier. So I basically forced myself to just start.

12:27 Doing things that put my balance system to the test. So I started at, you know, I maybe I shouldn't have skied, but I went out there and I stayed on the Bunny Hill and did some skiing. And, and it was, it was horrible. I mean, I was, it was very frustrating. It was so upset because, I mean, I was an expert snow ski ride skied for 40 years, college-level ski her. And here I was having to ski on the Bunny Hill and it was so depressing.

13:08 And I just wondered, if you ever, when you were going through your rehab, if you ever felt the same or what were some of the things that you felt like, you know, you were doing that helped you and what didn't help you. Yes. So like you and I are you religious Newport 3 months and I could see myself yoga poses balance poses, and also. So that was like, one of the

14:08 Women.

14:31 So I'm saying running working a lot. And this was running after you helps you any issues right now with now, you understand some yoga help me to it. It did help me to get me some balance back and I would feel terrible after yoga. I would feel terrible. But then, like the next day, I feel much better. And so I am continuing along the similar pass that you did to try to get.

15:31 Balance systems recalibrated. So now that we're both sort of on the other side of it. I change it that it is so impactful in your life because you, you have an old self and then you have as as we call it, the vestibular disorders Association that you and I are both involved in a life rebalanced and it's, it's a different life than we had before and I just wondered, you know, how did you come to terms with grieving that all your old self? You know, the self that would just go anywhere, do anything anytime of Day always up for something to do. I mean, how did you come to terms with with not being able to do that anymore?

16:31 Yeah, a big question. I mean that is the most difficult part still because I was a very different person altogether from the plans. Going out with friends tonight. All those things working music doesn't mean that if you're not able to do it, if you're missing out on like so big, I would say

17:22 Which helps you in many ways. I mean, now get time to think about anything second question, which I have started to do because that is what is demanded in this. This is how I will get my old self. Like, okay, you have your fun? Okay. You haven't noticed something.

18:22 Believing Journey.

18:36 Yeah, that's great. That's a great perspective that you have on it. It took me a little bit longer to kind of get to that place. I think and again that you don't mind, mine was a surgical fix but then it came back in my I don't know. Late thirties, early forties and it was in a new form was kind of vestibular migraine. So started getting the migraine headaches. And and the only difference with the vestibular migraine is that you're dizzy instead of, you know, having a lot of head pain, so I don't know, which is worse. So, you know, people say all I get the terrible pain and there you kind of bargain and you thankful. I would trade being dizzy and not being able to function with head pain, you know, you kind of bargain with yourself. I know, but

19:36 You know, as I've gotten older, I've learned how to deal with those when they come on. And I'm very fortunate, mostly barometric. Pressure changes in the weather is what triggers my symptoms. I always say that I could work for the National Hurricane Center and tell them exactly when the hurricane is coming and we always get it right in the meteorologists are usually wrong. And I need to have a vestibular patient on staff and they would get their forecasts, correct.

20:26 Well, you know you and I've been involved with vita which is the vestibular disorders Association. I've been involved for 25 years and was lucky enough to be president for a few years. And now I'm a trustee for that great little organization that helps patients be educated about the Stabilo disorders in and help them get get back to a life worth living. And I was just wondering, you got involved with a very interesting project with vita called the life rebalanced Chronicles. Can you tell can you tell me a little bit about those things in the past two years? What happened to me?

21:19 I would like to say that when I started this journey in this disorder, I do not have any information of what exactly this disorder is getting diagnosis was terribly hard. And when I found out, I've got some clothes and pointers, but I was still clueless is basically

21:47 Giving you that platform with nine, other people who are suffering from same disorders, like west of the disorders than life stories. What happened to them? How are they doing? What's their Journey? What's the question? What's the lowest us? Like, how the degree from their previous ourselves? And what are they now right now? So, all those things in your life, journey is far is Conecuh. It's a documentary series for like 9 episodes and every episode is is has a meaning like Body Balance, selfie balanced relationship, true balance on those all those aspects of it and how we are supposed to be there this order a supporters are warriors that would say, how are we trying to tackle our disorders and live a wonderful life with this? Documentary was definitely a lot of information to all the patients around the world who do not know what this diagnosis is.

22:47 Who do not know what this world is and also hope that everything becomes fine after some time. How can you, how can you, what can you do? Like what other patients have been from the Life Journey's so that we can make you feel better if you took time for them for us, but for you guys, you had this medium on this resource, which you can utilize and be better much sooner than what it would. It would have been in a situation, which if this was not part of anyone's life.

23:27 Right. Oh, that sounds great. And and I know that you're one of the featured patients are. I'm going to call you in after in, in the documentary series and what's great is that actually drops today? The first episode comes out today and it is available on YouTube for anyone to watch and, and learn from. And I know that over the next several weeks will be getting from from what I talked to Cynthia the executive director of Vita there, going to be releasing the 9 Chronicles over the next several weeks. And we'll get to see those on YouTube and other platforms on social media, you know, all over. So I think it's wonderful. I think it's thank you for for being

24:27 Involved in that and sharing your story and hopefully through this. We can reach many people who who are suffering but but don't know what they're suffering from because I know the diagnosis of a vestibular disorder can take a very long time. It can take up to a year to be diagnosed correctly. And then I just have really one last question. I love to ask.

24:57 And that would be what are what are two or three things in life, that that don't matter anymore. Now that you've been through this experience in Journey.

25:11 It is because

25:18 I would say.

25:22 Instead of not matters, I would say what I found out really matters.

25:27 Yeah, it's like

25:32 Attention to yourself. I mean you do not in your current like if you are. All right, and give much attention to what exactly is around you, how life is and you just go with the flow by with this particular learned about so many things about myself, how to calm myself down. I have learned about empathy towards people who are suffering with chronic illnesses.

26:04 This is one of the major things I would say because after after the videos of Life carnival life by the spaniels and also after I finish charting my Instagram about this note that appears no doctors over there who are specializing in this particular so I could help them. I could see their progress like what one year that was one of the most amazing thing with the thing I would say,

26:48 And I would say you can late slowly. That's also one of the biggest thing I have understood because it is moving fast. Life is short. That's what everyone used to say, but I don't think it is short. It is just fast. So you don't know how it goes by quickly. But if you take some time for yourself, keep yourself in front of everything. That makes your life much more easier than it was before and I have learnt and have come out of the things. I don't miss much, I would say the same thing, the piece I thought the competition of getting there first.

27:41 Because I know that sometimes and I work in tech industry and computer screens and computer screens. One of the biggest triggers. What is Elkins West Yukon Quest. Absolutely. Thank you for that. And I would just say stay strong Warrior YouTube. You are, you are a meeting Warrior for us. I'm still a newbie Warrior. It's been three and a half, but yes, experiences from you guys and you are definitely help me regain so many things. Just about everything.

28:38 Be well.