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+Life's a Beach. When you’ve got an annoyingly pesky disease like multiple sclerosis, some of life’s pleasures become a touch more complicated to enjoy properly. Take, for instance, the beach. Walking aids like canes and forearm crutches suffer in the deep sand. Wheelchairs and walkers? Verboten. Unless, of course, you have a floating wheelchair.
+Perils of Furniture Surfing. If you’ve ever had walking issues due to multiple sclerosis, you are bound to have experience in the sport of surfing, specifically furniture/wall/appliance surfing. One engages in said sport by eschewing practical walking aids—a cane, a walker, forearm crutches, etc.—in favor ricocheting off of solid objects in one’s home. I discovered the hard way, the ONE item your NEVER want to use for support.
+How to Maximize Walking Endurance. PT Herb Karpatkin sees MS as a disease of mobility. "Persons with MS don't complain that their myelin is bothering them, but that they are having trouble walking or balancing." In his first article for ActiveMSers, he provides three essential keys for maximizing walking endurance.
+Herb Karpatkin Joins ActiveMSers. Herb, a PT, DSc, NCS, and MSCS, has many acronyms after his name, but all you need to know is that he is a humble and exceedingly helpful MS guru in physical therapy. He'll be contributing articles to ActiveMSers to help us live better with this disease. Read about his background.
iConquerMS.org needs you. A new nonprofit, patient-driven project called iConquerMS needs 20,000 MSers to complete a survey about their MS history. The web of our collective experiences will help illuminate crucial patterns and connections, allowing researchers to better piece together the mystery behind MS. Perhaps it will lead to the aha moment as to what causes the disease (and to strategies that might prevent it, cure it, or arrest its progression). Maybe it will help fine tune what treatments work best in which individuals or what factors affect the progression of the disease. Together we can conquer this disease. The possibilities are limitless. So let’s do this. Join me: https://iconquerms.org/
+Best Practices: Coping with MS, 9 Essential Tips. Doggone it, you have multiple sclerosis. I’m with you there. Whether you were just diagnosed, are a veteran with years under your belt, or floating in frustrating limbo waiting for answers, coping with this disease can seem as challenging as bathing 100 dogs. Specifically, mistreated pit bulls. All at once. So to keep you from chasing your own tail searching for answers or from barking up the wrong tree when seeking advice, I’ve dog-eared for you my favorite tips for managing your MS.
+BLOG: Running with the Bulls. Get exclusive backstage access to architectural masterpieces. Check. Ride in the royal elevator. Check. Get trapped in a bathroom. Uh, check. My recent Spain odyssey was epic in more ways than one. When you have multiple sclerosis, adapting is the name of the game or you'll get trampled.
+On Your Left. For the first time in more than half a decade, I spent the afternoon on the bike trail. And admittedly it was thrilling to take in all the scenery that was passing me by... uh, quite literally passing me by. I was passed by teams of spandex-clad cyclists with matching road bikes and many, many others. "On your left" was the repeated refrain. And I did not care. I finally was cycling again. Read my latest blog here about the experience, complete with nearly running into a pack of Olympians. Seriously.
+Video of Hope, Part 5. For over a half decade, I’ve given the keynote address at my regional BikeMS. This 5-minute video concludes my Hope series about my experience in a potentially groundbreaking clinical trial for multiple sclerosis. As one reviewer said, “OMG that made me cry tears of HOPE.”Here’s to dreaming big dreams in brilliant color. If you need fuel for a future free of MS or your day simply brightened: http://youtu.be/Pd8pO-K3g_s
+ActiveMSers featured in New York Times. My five year dispute with my insurance company—the one where they refused to cover a life-saving stem cell transplant for my aggressive multiple sclerosis after all other treatments had failed—is finally resolved, and in dramatic fashion. My story is in the Sunday August 3 print edition of the New York Times, putting this ground-breaking treatment, questionable health insurance tactics, and yours truly (and ActiveMSers) on the world stage. Read the Haggler by David Segal now to see how his biggest case ever reached its conclusion. For more details on the case, see Operation Overturn.
+ Falling for Travel. A diagnosis of primary progressive multiple sclerosis can put travel aspirations into a tailspin. But when you are a senior editor of a leading travel magazine, making a mean batch of lemonade from lemons is called for. As you’ll read, Kendra L. Williams isn’t going to let this disease keep her off the road. An all-new Your Story.
+ ActiveMSers Founder Featured on Cover of Momentum. It was an honor to be featured on the cover of the Summer 2014 issue of Momentum, the National Multiple Sclerosis Society's national magazine. The magazine interviewed me for a series of articles about staying cool and managing heat, one of my specialties at ActiveMSers. Read the articles here.
+ Cooling Vests Tested & Reviewed. Thirteen cooling vests. Nine manufacturers. Multiple cooling strategies. A battery of tests. Weighted rankings in thirteen categories. At the conclusion of an exhaustive month-long review of cooling vests, ActiveMSers uncovers the players and the also-rans, testing the best cooling vests on the market today. Reviews are updated regularly based on continued testing and user feedback.
+ Freedom on a Trike. The moment I start cranking, feelings of liberation, glee, freedom overpowered my multiple sclerosis. MS, what MS? And then in the next moment, feelings of terror and dread took over. My first in-depth experience with adult tricycles was entertaining ... and educational. My latest blog opines on recumbent trikes, both hand and foot powered.
+ Cooling Vest Buying Guide. Summer can be a brutal time for us MSers--staying cool is a big deal. So ActiveMSers has put together the most comprehensive review and comparison of multiple sclerosis cooling vests (sometimes called ice vests) on the web. Click here for our advice on the best cooling systems on the market today so you can make an educated decision. Newly updated!
+ Test Update! Trekking Poles as Walking Aides. After reviewing the latest Z-Pole from Black Diamond, ActiveMSers has updated its recommendations for the best trekking poles for people with multiple sclerosis. Poles can be a huge asset and better than any traditional cane. Here's what to look for in a trekking pole.
+ Avonex and Eight Wheels. What does one do when one gets diagnosed with MS? Likely reexamine life’s priorities and, perhaps, stretch boundaries. Certainly Elys Bank never thought she would try out for roller derby. Until she did.
+ Staying Fit on the Water: Kayaking with MS. Suzanne Powell was used to 9-hour kayaking day trips. But when she was diagnosed with MS just weeks after her 50th birthday, she didn't even know if she would still be able to kayak at all. In her original 2008 article for ActiveMSers she outlined detailed plans that would keep her kayaking, her obsession. In her 2014 update, she reports that those plans have only gathered dust. Here's her story.
+ Timing is Everything: Three Toilet Tales. My latest blog is a trio of humorous bathroom situations I stumbled into on a recent visit to Northern Europe. WARNING: Do not read with a full bladder, because you will laugh so hard, well, you can put two and two together. If you need to smile today.
+ Skiing with MS... and an Attitude. Veronica of Tarrytown, NY, thought her skiing days were over after her multiple sclerosis diagnosis in 2004. But boy was she wrong. Six years later, at the age of 58, Veronica was inspired to take back her winters and try adaptive skiing. She hasn’t looked back since. Get inspired.
+ Managing MS Endurance. On a recent weekend while hiking in Sedona, I walked more in a single day than I had since 2009--2.9 miles, over 6,200 gimpy steps. Of course I realize this might not sound like much, especially if you do the math. I mean, it would take me nine full record-setting days to accomplish a single marathon, which apparently any remotely athletic Kenyan can run in under three hours. But with multiple sclerosis doing a number on my legs, it’s cause for a minor celebration. How did I go so far? By learning to smartly manage my endurance. Here’s how I did it.
+ BLOG: Advantages of MS #832, Coyote Safety. As my wife and I were about to start a fall hike in the Rio Grande bosque, a beautiful forested ribbon of gold every October, we took pause at a posted sign at the trailhead. The warning was ominous. “Coyotes live here!” The exclamation points were numerous. “Be aware!” How MS could save your life on a casual fall hike.
+ Best MS Toilet Tips. Why are toilet tips so important to those with multiple sclerosis? Frustratingly, bathroom issues and MS often go hand-in-hand, and if you plan to stay active with this disease, odds are you are going to have to deal at some point with potty problems, from gotta-go-NOW urgency to why-the-hell-can’t-I-go constipation. ActiveMSers has put together more than two dozen of the best tips to help cope with these annoying symptoms.
+ "At Least You Don't Have Cancer." People say lots of silly things when they hear you have multiple sclerosis. “I have a couple friends with MS, Stacey and Madison. And Madison is doing great!” I know this may come as a shock, but even with MS I still have the powers of deductive reasoning. What the hell happened to Stacey? In this blog post I discuss my favorite responses and fellow MSers chime in with their doozies.
+Your Best Weapon. When you’ve got a disease like MS, you’ve got to make some adjustments, some little and some big, there’s just no getting around it. But there is one adjustment that trumps them all. One adjustment you have to make if you are going to have any chance at getting the upper hand on your multiple sclerosis. And it’s the topic of my inspirational essay, which was recently featured on the popular websites InspireMeToday and Care2.com.
+ MS exercise studies. ActiveMSers has collected the abstracts of more than 40 exercise-related multiple sclerosis studies. Does exercise actually reduce fatigue? Can cardio work improve memory dramatically? Do video games boost balance? Can strengthening leg muscles help you walk better? Could exercise potentially have a neuroprotective effect? Researchers have found that the answers are a resounding yes, yes, yes, yes, and yes! Read for yourself.
+ BLOG: MS's Mountains and Molehills. There will always be mountains with multiple sclerosis. And, fortunately, molehills. You might not conquer them all, but you’ll never ever reach a summit if you never ever try. For the first time in four years I went snowboarding.And it was unforgettable.
+ Best MS exercises--UPDATED. ActiveMSers has compiled a comprehensive list of the best multiple sclerosis exercises, exercise tips and workout advice based on recommendations from doctors, physical therapists, research studies, and personal experience. Read our 75 tips now!
+ Best MS gifts. ActiveMSers has tested dozens of pieces of gear, read through a bundle of books, and combed the net for things to make life with MS a little easier. What are our favorite gifts for the person with multiple sclerosis? After personally using all of these myself, I’d say these are the best presents. Better still, I've arranged for members of ActiveMSers to get discounts on many of these items. Join today and save up to 25% on the best gear for MSers.
+ Hamstrung with Hamstrings?Gymnasts grab their toes. Yogi masters grab their toes. Chinese acrobats who specialize in contortionism grab their toes. People with MS don’t grab their toes. I have the flexibility of Melba toast. Reaching my kneecaps and maybe—maybe—touching my shins (if I cheated and bent my knees) was my elasticity Everest.Suddenly that all changed, and you can do it, too. And it might be the smartest thing you can do to fight spasticity.
+ BLOG: Hating Snakes and Bridging Fears. Indiana Jones and I have a lot in common. We hate snakes. We often travel to exotic locales. And we somehow get ourselves into sketchy situations that inevitably involve rickety wooden bridges and potentially calamitous falls. One would think I would avoid said bridges with my current walking challenges. Yes, one would think.
+ YOUR STORIES: CrossFit Fortitude. The Discovery Health Channel calls CrossFit “… a well-rounded and very efficient way to achieve a higher level of fitness … that does not need a whole lot of fancy equipment, but does offer a nice variety to keep the interest level up and provide the challenge needed to keep the exercise fun.” Others call the intense program Jehovah's Fitness, Torture Chamber, or a cult. Erin Mulvany, diagnosed with multiple sclerosis in 2004,has heard it all.
+ Bending the Spoon Theory. There’s a popular description of having a disability that makes its way eventually onto every multiple sclerosis discussion board on the internet: the Spoon Theory, Christine Miserandino’s personal story and analogy of what it is like to live with a disease (lupus in her case). Indeed, it is an eloquently simple description of what life often is like with multiple sclerosis and its ubiquitous fatigue. In my newest blog I discuss how we can all bend her theory.
+ Updated Travel Tips. Each time I jet off—last month it was to France—I gather a few extra nuggets of travel advice, either from personal experience or from chatting with fellow multiple sclerosis travelers. Click here to read my newest additions so you can ensure your next holiday is a "towering" success, pardon the pun.
+ REVIEW: SideStix Forearm Crutches. After using beaters for two years and then testing a pair of SideStix for the past few months, I’ve learned that there is a vast gulf between hand-me-downs and high-end when it comes to Canadian crutches. Does SideStix make the best forearm crutches on the market? For the outdoor enthusiast, there’s no question. They are my top recommendation for the disabled athlete, adventurer or explorer. Read why in our detailed forearm crutch review and buyer's guide.
+ Yoga for MS deconstructed. Yoga has long been touted for both its physical and mental benefits for those with multiple sclerosis. But yoga also conjures fear in us MSers who’ve never done the ancient Indian discipline. ActiveMSers breaks down the mystery of yoga and explains why it is so helpful in MS.
+ Don't Set the Puppy on Fire. We’ve all been there—getting off the couch to wander into the kitchen to grab that thing. Or do that thing. Or find that thing. Or put away that thing. Wait, now why the hell did I go into the kitchen again? Cognitive issues with MS are maddening. Dave discusses the challenges in his blog.
+ Destination: Everest Base Camp. When Gary Pinder lost almost all function on his left side in 2007 to an aggressive relapse that put him into the hospital, he vowed to press forward. In 2010 he hiked the fabled Inca Trail. In 2011 he went bigger: Everest Base Camp.
+ Going Drug Free: The Flawed Arguments. There are a number of reasons not to take disease modifying drugs for your multiple sclerosis. And by many, I mean three. And one relates to a kitchen sink (with garbage disposal, not shown). Before you go drug free, read my blog.
+ Quest for a Black Belt. Sara Gadson was diagnosed six months after she started training in the martial arts style of Shorin Ryu Shorinkan Okinawan Karatedo, a form of karate. She has a kimochi all her own.
+ Switching Meds? Beware the Piranha. As I sat in a tippy wooden dory deep in the Amazon rainforest—dripping wet with sweat, DEET, and the remnants of a sudden afternoon shower—I couldn’t help but wonder about the wisdom of my decision to spend an afternoon fishing. Specifically, fishing for piranha.
+ Hiking the 25-Mile Inca Trail. Gary Pinder, diagnosed with multiple sclerosis in the mid 1990s, lost almost all function on his left side in 2007 to an aggressive relapse that put him into the hospital. Just a few years later he was hiking the fabled Inca Trail high in the Peruvian mountains. Read how he managed to accomplish such a feat.
+ Your Stories: Cycling Adventures & the SAG Wagon.Intrepid cyclist and active MSer AMF Adventures has put together an engaging tale of his BikeMS ride from 2008. It’s a story that includes raw heinies, a screaming knee, and unbelievable willpower. Way to go, AMF! We invite you to submit your own story: email@example.com. It’s one of the most popular features on our website and we are always seeking inspiring articles.
+ From Barely Walking to Ironman! When Mark Van Meter was diagnosed at age 20 with multiple sclerosis, he thought he wouldn't make it to age 40. He could barely walk, much less write his own name. Today, at age 47, he is working at qualifying for the most grueling Ironman in the world. Read his courageous story.
+ Your WORST travel pet peeves! Having just returned from a European vacation, I acquired a whole new level of appreciation for the American's with Disabilities Act... and a growing list of travel pet peeves. Here are my newest travel horror tales, starting with the toilet you see here. What are yours?
+ Your Stories: Ashlea Deahl Keeps Moving. "Forget about what you can’t do – do whatever you can to keep moving." So says a defiant Ashlea Deahl, the editor of Phoenix Magazine who was diagnosed with multiple sclerosis in 2001 at the age of 22. Her motivating story about controlling her MS, fighting through fatigue, and "running" her first marathon should be a mandatory read for MSers.
+ Seize the Moment! Mild or Spicy. Multiple sclerosis is an unpredictable beast that can be as mild as a green pepper or as spicy as a Naga Jolokia, the world's hottest chile pepper. So when faced with an opportunity, well, read what I did by clicking here.
+ YOUR STORIES: Marathoner Keeps Running. Margaret Finelt has run six marathons, two after her MS diagnosis, and she is training for her seventh. She just keeps on running. Click here for her inspirational story.
+ Life (and Maybe Death) Decisions in the Himalayas. When I went to the Kingdom of Bhutan, I was faced with a difficult quandary: try an insanely tricky route (stairs, no railings, with drops of 1,000 feet) or take a pass on the country's most fabled and holy site. Here's what I decided to do.
+ MS attacks can sneak up on you like a hungry shark. Facing my first major relapse in over two and a half years, I should have been more prepared. But sometimes you just can't prepare for the unpredictability that is multiple sclerosis. Here's how I handled it.
+ Hope on the Slopes. ActiveMSer Susannah Wright was diagnosed five years ago with MS at the age of 35. "Within months of my diagnosis, all the outdoor activities I once enjoyed seemed out of reach. Injuries from spastic muscles, tripping and falling had ended my marathon training. Fatigue and dizzy spells made caring for my family's horse ranch exhausting. I had lost the ability to do the things I loved...." And then Susannah discovered snowboarding. Click here for her inspiring story.
+ A Quest to Get Healthy (and Lose 70 lbs). Donna James was diagnosed with multiple sclerosis in 2005. Now she's on a quest to lose 70 lbs (she's lost an incredible 51 lbs so far) to get healthy with MS and raise money for a great cause. Click here to read her story.
+ Horseback riding means therapy for one Active MSer. Martha Skye Martin writes of her fondness for horses and how horseback riding has become an essential form of therapy for her multiple sclerosis. Click here to read her story.
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