2013 Atrial Fibrillation Conference Living with Afib Mellanie True Hills StopAfib
Mellanie: I'll talk about communiingwith your s, and also about living with afib. 0:10 Let me give you a little bit of backgroundfirst. Now, I already mentioned that I was a patient. I had a surgical procedure, andI'm now free of afib. I founded StopAfib 2007, andthat same year, we launchedafib monthSeptember to raise awareness of afib. We worked with other organizations,such as the Heart Rhythm Society, American Heart Association, and the American Collegeof Cardiology to work with Congress to make Atrial Fibrillation Awareness Month official.So, it's now a national awareness month.
In raising awareness, I've even had theprivilege of following Barry Manilow at the podiumfront of members of Congress. Butas an atrial fibrillation patient, I was scared, lost, nervous, and unsure. I realized justhow vulnerable we patients are when we're sitting with a who may be standingover us, at the very least maybea white coat, who's speakinga language thatwe don't understand, about a condition that is complex, and confusing, and has turnedour lives upside down. What I'm going to share with you is foryou if afib has made your life more difficult, or if it has taken over your life. 1:52One of the biggest challenges that we face
communiing with s, especiallywhen our appointments are short and there's so much to cover, is that afib is such a complexdisease that we may not get all of our questions answered. We may just not even know whereto start. So, let me give you some ideas for what you can do to make your visitsmost effective. 2:19 First, prepare for your visitslike you might do for a business meeting. Write down your questions, and write downyour goals for your visit, just like you would for a business meeting. Your appreciates you coming prepared. My s usually start out by saying, â€œWhat questionsdo you have todayéâ€� That's a good way
to get your concerns adessed before goingon with the other things that need to be adessed during the visit. With visits being short,the more effective you can make that visit, the much better results you'll get fromyour visit. 3:06 In addition, one patient said, â€œWe'renot stupid. We're smart people who just don't happen to speak the same languageas our s.â€� So, if you don't understand what your is telling you, tell your. Let them know that you need more information, you need explanations. Maybe they're usingmedical jargon that's just not familiar to you. Feel free to tell your thatyou don't understand. If you sit there,
and you're nodding your head, your thinks you understand, and is just going to keep on going. So, help your help you. 3:40 In addition, it's extremely valuableif you can bring an advoe with you to your appointments. Maybe a spouse, a child, a familymember, a friendâ€”someone that can write down the things that the is tellingyou and also remind you if you forget some of your questions. And having a second personhearing what you're saying, and hearing what the is saying, is really valuablebecause you might be taking away a slightly different perspective, and you have someoneto bounce it off of, and make sure that you
really understand. 4:17 When we'reour appointments, thereis so much to know about afib. It's such a confusing condition, and you know, we'rerushed because appointments are short. So, make sure that you're getting your questionsanswered, and make sure that you have someone there with you. That's really the best.As Prystowsky said, sometimes he'll send people away and say, â€œBring your spousewith you,â€� and that really is important because it impacts the spouse as well. We'lltalk about caregiversa moment. But those who are living with afib include not onlythe patient but also the family members.
Minding your mitochonia Terry Wahls TEDxIowaCity
So, I love doing Taekwondo and was once a national champion. But a lot has changed since then. I went off to medical school, became a physician. I had a son, and then a daughter. And I developed a chronic disease for which there is no cure. In 2000 when I was diagnosed with multiple sclerosis, I turned to the best MS center I could find,the Cleveland . I saw the very best s, received the best care possible.
taking the latest newest ugs. Still by 2003, my disease had transitionedto secondary progressive MS. I took the recommended chemoterapy I got the tiltrecline wheelchair. I had one with a motorI could ive around. I took Tysabri. And then CellCept but continued to become more severely disabled. My disease had transitioned.
I was afraid that I was going to become beidden. I turned to reading the latest research using podmed.gov I knew that brains afflicted with MS, overtime, shrank. I therefore went, every night, reading the latest medical research about the diseaseswhich brains shrank. These diseases were Huntington's, Parkison's and Alzheimer's. I saw thatall three conditions,the mitochonia do not work well, leading to shrinking brains.
With more searching, I found studieswhich mice's brains andtheir mytochonia had been protected. Using fish oil, creatine and coenzyme Q. I translated those mouse sized doses into human sized ones and began my first round of self experimentation. The rapidity of my declined slowed and I was very grateful. But I was still declining. Next I discovered the Institute for Functional Medicine.
And through their continuing medical eduion course, Neuroprotection, a functional medicine approach to commonand uncommon neurologic synomes, I learned more brain cell biology andwhat I could do to protect mine. This is some of what I learned. We have a billion cellsour brains, with ten trillion connections. All of that connective wiring must be insulated with something called myelin. And multiple sclerosis damages myelin. In order to make healthier vast myelin, your brain needs a lot of B vitamins.
In particular vitamin B1, which is thiamine, B9 which is folate, B12 which is cobalamin. It also needs omega3 fatty acids and iodine. This is a sinapse. Those beautiful golden ops are the neurotransmitters. For your brain to make neurotransmitters, it needs a lot of sulfur and vitamin B6, which is pyridoxine.