Situation Positive Podcast

https://youtu.be/rvZuwLrHhr8 Hey everybody, it is Matt Cavallo from Situation Positive. I want to talk to you today about a problem that I've had over the last two years or so. And that's with weight gain. I've lived a very sedentary lifestyle. We had quarantine. A lot of my work has been sitting at my desk and my office is just way too close to the kitchen so I could get snacks whenever I wanted. So, I've put on a lot of weight, and I carry my weight and my stomach. You can see here, this is an unhealthy place for a male to carry weight. Weight carried here can lead to a whole host of health problems, including heart disease, or like I suffer from, acid reflux. So, for about the last year, I've tried to do something about it. I've tried a number of diets. I did intermittent fasting, and nothing really seemed to work. You know, it got to the point where you know, I could look at a piece of bread and put on two pounds and it starts to make me worry. I don't want to die young because I'm overweight. I don't want to suffer from heart disease. This acid reflux has been really tough on me. You know, I've got a wife and two kids and two dogs. They need me. So, I need to do something about my weight gain. It's not the most comfortable thing to talk about because the things I've tried to this point have failed. And, you know, it's, I'll lose a couple of pounds here and there and then I'll try something else, and the weight will come right back on. It just is frustrating. And so, I decided what I wanted to do was explore medical, weight loss, nonsurgical. So, I went to a medical weight loss clinic, and I met with a doctor, and I've learned something about my stats. I'm going to read them to you. So, when I went in there, I was 243.61 pounds. My target weight to get to where I should be, health-wise should be around 198 point 81 pounds. So, I am 45 pounds overweight. It seems impossible. I was an athlete. I used to play hockey. I used to play football. I was in the Navy. How am I 45 pounds overweight? One of the things that my doctor called out was my BMI. So, I've got a BMI of 32.1. Now a BMI should be in the 19 to 25 range and anything above 30 is a risk for heart disease. So, I'm 45. I have this family that I'm caring for and that cares about me and I'm at risk for heart disease. I've got a fat percentage of 33.1. Now that means 33% of my weight is fat. The desirable range should be anywhere from 11 to 22. So, I am in the danger zone. And it's causing me a lot of health problems. I have had acid reflux and my acid reflux has been horrible. There was a two-week period where I hiccup the whole time. It gave me chronic laryngitis. It's making everything feel tight in here. It's pushing on my lungs, which activated asthma I grew out of when I was a kid it's giving me chest pains. It, most of all, it's giving me fatigue. I'm just too heavy too. My frame is too heavy to carry the weight I have on it. And also. It's my extra weight is causing hip bursitis. So, when I go to sleep at night, I have hip pain on my right side. So, I flip like a fish. During the night I'll be on my left side, I'll be on my right side. And what happens is when I'm on my right side, I end up waking up in the middle of the night. And so, I haven't slept through the night a single night since I've had this hip bursitis. Okay. I also have multiple sclerosis as we've talked about. Right. So, this is creating extra stress. I've, I've had problems walking in the past and now I'm carrying all this extra weight. That's 45 extra pounds. So, it's scaring me. And so quite frankly, I want it to take action and I want it to do it under a doctor's supervision. I didn't want to be I've failed at diets. I failed at intermittent fasting. I've been yoyoing so I wanted to try something I could commit to and stay with it for the diet window. And I'm hoping what happens is new habits are born because what I've had in the past is I was always the ...

https://youtu.be/2d7dZA7Fhis Why does our co-founder, Matt Cavallo, push himself every day to walk with a chronic illness? At age twenty-eight, Matt was diagnosed with Multiple Sclerosis. Seemingly overnight he went from a fully-functioning, healthy man to someone who was temporarily paralyzed from the waist down and unable to walk. Matt learned how to walk again in a pool and was able to regain functionality through months of physical and aquatic therapy. Here he talks about the importance of his morning walk. Hey everybody! It is Matt from the situation positive. And I'm out here for my morning walk. My morning walk is something I take pretty seriously. Cause there was a time in my life when I was paralyzed from the waist down. And I thought I would never walk again, but it's more than that walking or movement is fundamental. If you sit there, you become sedentary and it becomes harder and harder to move. So just getting up and walking. If you can, for half an hour, a day will make all the difference. Now you could start small at first walk, 10 minutes out, and 10 minutes back, maybe you could increase it to 15 minutes out, 15 minutes back as you begin to walk more, you're going to notice that you feel better about yourself. Walking is a form of exercise. And movement is the key. So if you can get out there and do it, you'll be glad you did stay positive, everybody. Please follow us on social for more inspiring stories. Would you like to have your story featured here? Click on the Positive Project to learn more!

https://youtu.be/0Ko0X9LPudY Brookanne Clark, who’s 40, is one of three siblings born with spinal muscular atrophy (SMA). She, unfortunately, lost one of her brothers but remains close to the other brother. Both live in Dallas, Texas. Brookanne has a great outlook and is a natural caregiver, taking care of family members, friends’ children, and helping out a friend who has a dog training and grooming business. In this interview, Brookanne shares about life growing up as one of 3 with a rare disease; her role as a caregiver to many; and her own personal experiences managing SMA.  Below is the transcript of our interview. You can also watch the interview or scroll down to the bottom of the page to listen to the podcast. Matt: Hello, and welcome to Situation Positive. My name's Matt Cavallo and I'm here today with Brookeanne Clark. Brookeanne, welcome to the show. Brookanne: Thank you for having me. Glad to be here. Matt: And we're so thrilled to have you here. Before we get going. Could you tell us a little bit about yourself? Brookanne: I was born in Dallas, Texas. My parents were both teachers and coaches. My mom did all the girls' sports. My dad did all the boy sports. I'm the oldest of three children. I have two younger brothers, Tommy and Jeffery. We all three have muscular dystrophy and our parents raised us that we were no different from anyone else. So we are expected to go to school and get a job and do all those things. So I went, I graduated from Texas A & M in 04, and then I taught for a while. And now I'm helping a friend with her business. Brookanne Clark celebrates her 40th birthday in style. Go Aggies. I had one of my good friends, went to Texas A & M and he's always told me about the football games down there. Matt: He said, it's one of the best schools you could ever go to. Brookanne: Oh for sure. We still have season tickets. So. Matt: Oh do you? So do you live, is that a far drive from your house? Brookanne: It's about two to three hours, like two hours and 45 minutes, three hours. It's not bad. Matt: Oh, very cool. And so you came from a family of teachers and coaches, and then you got into teaching. So what did, what did you teach? Brookanne: I taught second grade. Matt: Taught second grade. And so you did that for a few years, and now you're working, working with a friend on a, it was a dog training business, right. Brookanne: She also runs the an and she has her own business. So I just help her, like, things like that she needs to be done. That she doesn't have time to do. Matt: Yeah. I have two dogs that need training. I got two little, one-year-old puppies. So, but I'm, I'm out here in Arizona. You're in the Dallas area. Correct? So you mentioned that both you and your brothers have muscular dystrophy, is that correct? Brookanne: Yes. We have spinal muscular dystrophy. Where it is one of the forty different kinds. Matt: One of the four different kinds? Brookanne: Forty. There are forty different kinds. Matt: Oh, wow. I didn't know that. So there are 40 different kinds of muscular dystrophy. And you mentioned you're the oldest, correct? Brookanne: Yes, I am the oldest. Matt: So does that kind of you know, do you have to be big sis to your little brother? Brookanne: I do, but they're much smarter than me and way wiser than me. So it kind of evens out. Yeah. Matt: Now I think growing up with muscular dystrophy and having parents who are teachers and parents who are coaches, did that help you assimilate to life? Despite having the challenges that come with muscular dystrophy? Brookanne: I think absolutely because you know, parents being coaches, like they kind of have this no-excuses mentality and just figure out a way to do it. I remember when my mom said that she put me, that it was time for me to be enrolled in elementary school. And if you took me out there and enroll me in kindergarten and they told her, oh no,

https://youtu.be/vISMFsSszvk Hey everybody! It's Matt from Situation Positive. I'm at Hapuna beach on the Big Island of Hawaii and on my walk this morning I found a cave. In my mind, there is nothing more symbolistic of living with a chronic illness than being in a cave. It's dark. It's lonely. It's isolated. And I know that once you get diagnosed with a chronic illness that might be how you feel too. I know for a long time I felt that way. But then I realized if I stepped outside of my cave and I took a look around me, that there's a whole big world still out there to explore. I may have some limitations now that I didn't in the past, but that's not gonna stop me. And it shouldn't stop you.Get out there. You don't have to stay in the dark. You don't have to be in your cave.

https://www.youtube.com/watch?v=kGZWpPk3-Kk At the tender age of fourteen, Sarah Kash learned that she needed brain surgery for Chiari malformation, a condition where the brain tissue extends into the spinal canal. In this interview, Sarah explains what it is like to live with this chronic illness. She discusses the diagnosis, her brain surgery experience, and how she is today. You can read the interview below or click the video to watch it. The interview is also available on our podcast. Tara Tingey (Host):     Hi, welcome to Situation Positive, a positive community for those affected by chronic illness. I'm Tara Tingey, your Positivity Partner, and we're joined by special guest Sarah Kash. Sarah, how are you today? Sarah Kash (Guest):    I'm good, how are you? Tara:                            Good thanks, so go ahead and introduce yourself. Sarah:                          So, I'm Sarah I'm twenty-three I was born and raised and still living in Tempe, Arizona. I'm diagnosed with Chiari malformation with a fourteen-millimeter herniation with syringomyelia, which is the development of a fluid-filled cyst (syrinx) within your spinal cord, all the way down the T10. I also have ulnar neuropathy, which occurs when there is damage to the ulnar nerve that travels down the arm to the wrist, hand, and fingers, in both arms and a tethered spinal cord. Tara:                            Wow! Those are a lot of big words. Tell us a little bit more about your diagnosis and what it means to those of us who may not know. Sarah:                          Sure, Chiari malformation is basically, in simple terms, when your brain is falling out of your skull. You've got your spinal cord flowing fluid up into your brain and it comes all the way up. There's a hole at the base of your skull and cerebellum, which is the bottom portion of your brain. Your brain falls into the hole. That's what my herniation is and it's a fourteen-millimeters descent down into the hole. This is clogging the spinal fluid flow to my brain and is what caused the syringomyelia.  The blocked spinal fluid was standing still and my spinal cord ended up pushing on my nerves causing a lot of nerve damage. I experience daily nerve pain.  The syrinx, my fluid-filled cyst, slows down at my T10 vertebrae and that is what I had surgery on. Now that's cleared up. The tethered spinal cord means my spinal cord is stuck on my spine. This is not as big of an issue as the others. Lastly, my ulnar neuropathy is pinched to the point of causing some nerve damage. So those are all kind of related to one another, but separate issues on their own. Chiari causes syringomyelia and they don't really know if that is genetic or if you're born with it. They're not really sure but there's a lot of research going on with it but it's something I was definitely born with. It doesn't really develop, rather it’s caught at different stages of life depending on the person and their symptoms. So those two are definitely related the spinal cord. The tethered spinal cord could be from something developed in utero before my birth and finally, there is the ulnar neuropathy I'm not actually sure where that came from. Tara:                            So, that just added to it? Sarah:                          Right. Tara:                            You mentioned that you were born with it, so tell us your story of when you were diagnosed? Sarah: `                        When I was fourteen, I had been a competitive gymnast for about nine years. I was doing gymnastics and I started noticing a bee sting sensation in my arms when I did certain moves. It was mostly on bars that I noticed it. I was already seeing a chiropractor since being in gymnastics your body's already pretty messed up. The chiropractor would try to adjust muscles and make sure that everything was in place and that there wasn’t a pinched nerve but that wasn't really working.

https://youtu.be/B-yvCmYotr8 Hey everybody, it's Matt Cavallo, from Situation Positive. It’s January and that means that your health insurance benefits have reset and you're going to start having out-of-pocket medical expenses again. Nobody likes those, so I'm going to teach you how to minimize the amount of money that you have to spend out of pocket for medical expenses each year. Before I do that, I'm going to teach you a couple of common health insurance terms. The first definition is going to be deductible. Deductible is the amount of money that you have to spend out of pocket before insurance will kick in and start paying money for cover medical expenses. I'm just going to use nice round numbers. So, let's say you have a $1,000 deductible. You will have to pay $1,000 out of pocket for covered medical expenses before insurance will kick in and start to pay. So, the first thousand dollars goes towards that deductible. Next is co-insurance. Often once you meet a deductible, you have what's called coinsurance. A lot insurance plans have an 80/20 split meaning that insurance pays 80% and you would pay 20%. For example, if there is a $100 charge and you have met your deductible, the insurance company would pay $80 and you would pay $20 for covered medical expenses. First comes the deductible and next comes co-insurance, then finally you get to your max out of pocket. If you look at your health insurance plan benefits, you have a max out of pocket for in network and out of network services each year. So, let's say your max out of pocket is $2,000. When you meet your deductible, you have paid $1,000 of the total $2,000.  Then, you have to pay co-insurance for each covered medical expense until you reach max out of pocket of $2,000. Once you reach your max out-of-pocket, insurance will pay for covered medical expenses at a 100%. These terms are very important because what if I said we can get you to that max out of pocket without spending money from your own pocket? That means all of your covered medical expenses will be paid at a 100% by the insurance company and you could have $0 out of pocket expenses for the year. How can we do that? I do it through planning. When you have a chronic illness, you can predict the number of medical visits, procedures and treatments that you have in a given year to manage your condition. For example, I have been living with a chronic illness for 15 years. At this point, I know everything I'm going to have to do to manage that chronic illness through the year: Two infusions of my MS treatmentTwo neurologist appointmentsTwo labs for bloodworkTwo MRIs I know the infusions are going to be my most expensive medical expense in any given year. Barring an unforeseen hospitalization, I can plan on my two IV treatments costing me the most money. Then I have blood work and MRIs, which I need those for my neurologist to monitor condition. Finally, I have two checkup appointments a year with my neurologist to authorize my treatment and manage my MS. This means that I know each year that I will have 8 medical appointments just to manage my chronic illness. Since I know that I have these appointments, I can plan them so the most expensive happen first so I can reach these spending limits early in the year. To accomplish this, I schedule my first IV treatment in January. This is critical for minimizing your out-of-pocket spending. I am going to teach you in another video that pharmaceutical companies also offer financial assistance programs and that money can go towards your deductible and out of pocket maximum. A lot of these financial assistance programs don't have any income qualifications, so many of us are spending money on our prescriptions without knowing that we qualify for financial assistance through the pharmaceutical companies. The reason I get my first IV treatment in January is because my pharmaceutical company, through my financial assistance program,

https://youtu.be/9OUU3HfkMyE Hello, my name is Matt Cavallo, and I am one of the founders of Situation Positive. Situation Positive is a nonprofit organization that provides a community for people living with chronic illness. Did you know that there are over 157,000,000 million people in the United States alone that have one or more chronic illnesses? Those numbers are staggering. That is over forty percent of the population. So, let's say you're in a crowded room, if you look to your right then you look to your left the chances are that one of the people you see, or maybe even yourself, has a chronic illness. The chances are that they are probably not talking about it. Life with a chronic illness is tough I should know when I was 28 years old, I became temporarily paralyzed from the waist down. I was numb. I had pins and needles and I could not walk or go to the bathroom on my own. I got admitted to the emergency room and then admitted to a hospital. I underwent a series of tests including chest and back X-rays, CT scans, MRIs, with and without contrast dye, and I was discharged, in a wheelchair, without a diagnosis. I had to learn how to walk again in a pool. I did aquatic therapy with a physical therapist, where I learned how to walk again. This took me a long time. A month later I met with my neurologist and I was diagnosed with multiple sclerosis (MS). I'd like to say I handled it better, but I didn’t. I went into a deep depression. My aunt Loretta had MS and she died when I was four years old. My only living memory of her word was that she was in a wheelchair. She could not walk. She also could not talk she could only mumble and moan. At only twenty years old I'm thinking that's my fate. And all the whispers from my family say, “he looks like Loretta again.” So, I shut down. I pulled away from everybody. I did not want to talk to my friends or family about it. I did not want to talk to the people at work about it. The people that work already started treating me differently. I was a real estate developer, and I was always at the job site. After my diagnosis, my coworkers just wanted me to stay at the office. “Matt, you look tired. Why don't you just stay at the office?” They would say. They were afraid that I was a fall risk, so they didn't want me doing some of the things that I use to do. That was life in general at that time. So, I went into a cocoon where I withdrew from my friends and my family. I wanted to find other people like me, nobody was talking about their illness. I tried to find a book on the subject and all I could find were these, “Rah-Rah, You Can Do It! “motivational stories about people with MS that could all of a sudden climb Mt Everest. Or these Holistic diet books with claims of, “eat these leaves and you'll be cured.” That was not my story. I couldn’t relate. I just wanted to talk to a real person who was going through some of the same things. Luckily, I kept a journal of my patient experience and I started flipping back to my journal. I realized that mine was the story I was looking for so I ended up writing a memoir that I called, The Dog Story. Writing my memoir launched me into a new career because from that day forward once I was diagnosed, I wanted to learn how I can make a difference by sharing my story. Everybody has a unique story. To support my memoir, I started delivering motivational speeches all over the world telling people my dog story. They would laugh, they would cry they feel good at the end and then they would share their story with me. Together, we started to build a community of positive people that were living the best that they could despite the challenges of chronic illness. Today, we invite you to join us. Do you want to connect with others that share a similar experience? Go over to Situation Positive and check us out. If you are somebody living with a chronic illness and you're having a tough time and you want somebody to t...

Chandler Crews has a passion for advocacy and social media. Born with the most common form of dwarfism, achondroplasia, she has been publicly sharing her journey for over a decade, gaining her a major online presence. https://vimeo.com/532963098 In 2010, she made the decision to undergo a series of limb lengthening surgeries. In a span of just four years, Chandler went from standing at 3’10” to over a foot taller at 4’11”. Image from https://chandlercrews.com/category/self/achondroplasia/page/2/ This journey has led her to her career as a patient advocate, public speaker and communications professional. Today, she is the founder and president of The Chandler Project, a nonprofit patient-focused organization dedicated to providing education and resources on the latest research and development in pharmaceutical advancements and surgical treatment options for those affected by achondroplasia. You can connect with Chandler by following her on Instagram & Twitter: @chancrews and Facebook: @ChandlerInBaltimore or by visiting www.chandlercrews.com and www.thechandlerproject.org.

Over the last year, creative play and games like Dungeons & Dragons (D&D) have made a resurgence, helping players escape a real life monster – the COVID-19 pandemic. Dungeon master Jonathan Hill has been using the iconic fantasy role-playing game his entire life as an escape from the mind-numbing challenges of his chronic health condition, severe hemophilia A. https://vimeo.com/543195966 Jonathan is sharing his story through another form of creative expression – a graphic novel – in the hopes of shedding light on the challenges that people living with hemophilia face. Blood of the Paladin details how Jonathan learned to accept and manage his bleeding disorder and hepatitis C diagnosis, and how he survived near death from HIV/AIDS during the 1980s blood contamination crisis. For Jonathan, D&D helped him learn to process life and death – both real and imagined. Through D&D, he found that he could be a hero exploring untold, unimagined worlds, while stuck in his hospital bed or at home. More about Hemophilia A Hemophilia A is a genetic bleeding disorder that prohibits blood from clotting normally. People with hemophilia are not only at risk of life-threatening external and internal bleeding following injuries, but have to learn from a young age to give themselves daily or weekly blood infusions. Learn more about Jonathan here: Blood of the Paladin‎Blood of the Paladin on Apple PodcastsJonathan Hill (@jonahill) / Twitter

LaMondre Pough, 47, was born with spinal muscular atrophy (SMA), and like many with SMA, he is dependent on the help of outside caregivers to come into his home to help him with basic life functioning. It’s a catch-22 for someone with SMA to have people in your home right now because they are at much greater risk to complications from Covid (decreased lung function can be a part of this progressive neuromuscular disease).  https://vimeo.com/549336374 LaMondre has had more than one Covid exposure during the past year – each inadvertently from a caregiver. He has been outspoken about the importance of elevating vaccine access to individuals like himself, and his message is an important step for larger discussions about representation for those with smaller collective voices, aka rare diseases. LaMondre is fully vaccinated, but this is a topic that will not simply evaporate when this pandemic “moment” subsides. Rather, it has opened the door to some fundamental issues our nation needs to address. LaMondre is an entrepreneur who is leading a movement of inclusion. In this episode you will learn about LaMondre's journey and how he is using his platform to bring positivity into the world no matter what situation is presented. Follow LaMondre on social by clicking on the links below: Twitter: @LaMondre_PoughInstagram: @lamondre_pYouTube: https://m.youtube.com/c/lamondrepough