How I’m Living My Best Life with Multiple Sclerosis | Robin Brockelsby | TEDxUniversityofNevada

you [Applause] have you ever fought a battle that other people thought was gonna be a losing one a year ago I thought I had a sinus infection I was dizzy my vision was a little blurry the right side of my mouth felt a little numb after a month of feeling that way I noticed something new my right leg felt a little heavy I ignored it thinking maybe I had a pinched nerve in my back until one day when I was driving my son to school and joined my morning cup of coffee and I couldn't lift that coffee from the cup holder up to my mouth because my arm felt like it weighed 50 pounds things that had always been normal parts of my day putting on my makeup brushing my hair all were becoming a challenge because I was dropping everything as time went on it became hard for me to put food on a fork and get that fork up to my mouth when I would walk my foot would drag and my balance was so off that I had to hold onto walls simply to move forward eventually my right leg was in a constant state of spasm but the most frightening part of this decline was what was going on inside my brain I would get this intense sensation of being extremely drunk imagine taking ten shots of tequila this feeling would last for about 15 seconds during which I couldn't speak or concentrate and immediately following that head rush my entire right side would go numb for about a minute this was happening to me every five minutes all day every day my body was going completely out of my control I was scared I didn't know what was happening to me and it was heartbreaking when my daughter was brave enough to say mom's no longer safe to drive a car I wondered if this is what dying feels like I credit my primary care doctor he solved my medical puzzle quickly in just two short months he arranged numerous visits to medical professionals tons of blood work and multiple MRIs of my brain and spine after 46 years of perfect health I was diagnosed with multiple sclerosis and now know I was in the midst of a severe flare-up multiple sclerosis is an unpredictable and often disabling autoimmune disease of the central nervous system essentially my immune system sees my brain my spine and my optic nerves as the enemy and it has launched an all-out attack on the nerves and their protective barrier which is called myelin now myelin is really important because it's the conductor that allows the nervous system to efficiently communicate with the brain and body once it becomes damaged those communication pathways either slow down or they become completely blocked the symptoms and the severity are different in each person based on the location in the amount of the damage but typically involve issues with numbness spasticity balance and movement bladder and bowel control brain fog fatigue and visual impairment I'm currently very functional in my daily activities some people are not no two cases are the same and there is no cure when I was first diagnosed I felt this immediate sense of relief for two things one that I wasn't dying and two that I now had an answer for my symptoms it took a little while and then I freaked out I have learned that grief applies to far more than death and dying when you're diagnosed with an incurable disease you have to grieve I lost the confidence in how my body functions almost overnight I've cried a lot on this journey I've sat on my bed tucked up in a ball rocking back and forth tears flowing and the only words I could say was I don't want this I don't want this the anger is real and it's at my own immune system I took really good care of you I exercised I got enough sleep I ate right and you still did this to me I have questioned what horrible thing have I done in my life is this some crazy karmic payback and I know I have to accept it but accepting it is hard because I miss the way my body used to work and I'm really scared of what the future could hold when you're first diagnosed with a disease like MS people don't always know what to say they want to empathize and they mean well but they can't always find the right words probably because a lot of them think well she's going to end up in a wheelchair or something much worse so they default to a subject they're comfortable with themselves by sharing their own story or experience with the disease in the past 12 months I have been told more times than I can count about how somebody's friend or relative died a horrible death from MS or this was a good one I was told I wouldn't make any long-term plans if I was you I never thought about my mortality until I was reminded of it by people that I know so how do you not say the wrong thing my advice is to ask a question try tell me about your MS and then be a supportive listener and let the person do the talking and if you choose to share a story always make it a success story because trust me thanks to dr. Google we all find the waffle stories out on our own here's a success story due to treatment breakthroughs improved health care and lifestyle changes aside from cases of severe MS which are rare the average lifespan for somebody living with this disease is only seven years less than the general population so I am totally making long-term plans there are nearly a million of us in the US who have MS and about 2.3 million globally we don't know yet what causes this disease and getting a diagnosis is not easy because there isn't one single test that can confirm or deny that you have it it is a process of elimination that requires a lot of blood work multiple MRIs and lumbar punctures one thing that's been sobering for me is how expensive it is to be diagnosed with a chronic disease my drug therapy that I'm choosing which can't cure me for one year cost two hundred and sixty thousand dollars most of it was covered by insurance but not all and that does not include any of my other medical expenses a recent study from the MS Society shows that 40% of people with MS either stopped taking or alter the use of their medication due to the high cost and that is a major problem in the u.s. that has got to be fixed I was recently asked a question the question was how do you fight a losing battle that had to sink in for a little while and then it really pissed me off I refuse to look at fighting this disease as a losing battle because the minute the word losing is used in your vocabulary is the day you give up getting my teenage daughter to clean her bedroom that's a losing battle my life is not so let's rephrase the question how do I find the strength to fight back against my multiple sclerosis I use the tools that are in my tool belt that I know I can control hope for a cure is not one of those tools I have a huge amount of hope that there will be a cure in my lifetime but hope isn't a strategy so the tools that I use are my attitude I choose optimism I choose can versus can't and laughter versus crying and I laugh a lot I got involved with organizations that support people with MS because it has allowed me to create my own network of people going through the same thing and these nonprofits empower me to affect change I created a stellar support team that includes a neurologist who key word specializes in MS and I manage my disease with a combination of eastern and western medicine the drug that I'm taking is one of many and and as I mentioned earlier it can't cure me or fix the damage that's already happened but the studies are showing that it's slowing disease progression a lot of these drugs cause very brutal side effects and for some they're intolerable but so far it's been the right decision for me I try very hard not to focus on what the future could be instead I put all of my energy into how I'm feeling today right now and today I feel great this isn't always an easy task by the way I work at this if I was to tell you that seven days from now you're gonna be in a horrible car accident could you spend the next seven days not thinking about it it takes work I fight my disease in the gym and in the kitchen I eat healthy most of the time I get my weight training done and my cardio done I've had to change the way that I exercise because when my heart rate or my body temperature gets too high my body doesn't cooperate with me but I never let that stop me this is a nerve disease not a muscle disease and no matter what your level of disability is keeping physical strength is a huge part of disease management I have done my best to eliminate stress from my life stress is actually one of the number one causes of an MS flare-up and in my case I also have a physical reaction to it where sometimes my right side will start to uncontrollably spasm most healthy people are very good at ignoring their physical signs of stress which is not healthy I physically can't ignore it anymore have to find ways to calm myself down and that is a gift that I wish I could share with everybody and that's also my last tool I look for the gifts in everything sometimes they're hard to spot but if you look hard enough you'll find them I've had two lumbar punctures this year I have a great pain tolerance and they hurt my sister came with me for the second one and I was terrified because the first one didn't go so well she let me squeeze her hand during that procedure and it's an hour between us that we will never forget not because I almost broke her fingers from squeezing so hard but because it brought us emotionally closer than we've ever been in our entire life and that is a gift I have received from this disease and there have been so many I have met amazing inspiration new warrior friends I have learned to appreciate the simplest little things and I have this newfound patience for my teenagers that if I could bottle and sell would make me a billionaire having this disease is really hard but here's the thing nobody gets through life unscathed and every single one of us has a something my something is MS and no matter what it throws my way I'm gonna live my best life with it this health journey has taught me that there's very few things in life that we can control but if you're ever faced with a chronic obstacle I hope that you'll remember that one thing you can choose to control is your response to those challenges that sometimes bring us to our knees thank you very much [Music] you

Channel: TEDx Talks

Views: 111,630

Rating: 4.9484649 out of 5

Keywords: TEDxTalks, English, Health, Disease, Motivation

Id: BwfqBBeQSQ0

Length: 14min 28sec (868 seconds)

Published: Wed Mar 11 2020