By Alene Brennan
How to Navigate the Underground World of MS
Being the invisible disease that it is, multiple sclerosis can make you feel like you’re living in an underground world. So let me lay out a roadmap to help you navigate to better understanding and better health. Continue reading
By Doug Ankerman
Time we had a chat. A good ‘ol face to face.
You know we have a few things in common, right?
First, we both have multiple sclerosis. Me, since 1996. An MS diagnosis can be difficult to accept but over time you realize you can’t change the past so you must work to positively improve the future.
Which leads me to the second thing we have in common…muscles.
Did you know we have around 640 muscles in our bodies? That’s not 640 between us, you have 640 muscles and I have 640 muscles. (Although looking at me one might think I left a few hundred muscles in my other shirt!)
And those muscles…your muscles, my muscles, our muscles…want to move! They want to be stretched, strengthened, and energized.
Meanwhile, multiple sclerosis wants to painfully wretch, tighten, and shorten your muscles till they cry “Uncle.”
So we must have a plan to keep that from happening. We must prioritize our needs to keep our bodies strong, loose, and resilient.
We must make our health the number-one, numero-uno priority. We must give our body what it needs and craves. Give it movement. As much as you can. Reach. Reach further. Now to the other side. Twist. Turn. Then do it again. Get up. Walk if you can. Extend your arms. Move your legs. Wiggle your feet. Do it standing or sitting – it doesn’t matter how because anything counts. Every little movement helps. It doesn’t have to be intense. And you don’t need a gym membership. You just need to keep moving those muscles. All 640 of them. The more your muscles move – the better they move.
MS is a bugger that doesn’t give up. So neither must you.
Make time for you and your muscles. Two minute here, ten minutes there. Move during the commercials while watching television (You never like them anyway!).
Make it your first priority. You will feel better. Feel positive. Muscles will loosen and let the energy flow throughout the body.
Remember, movement means mobility.
I’m so glad we had a chance to talk. Now we know what we need to do. So go ahead. Get started. Get going and move!
*Doug writes about MS and other nonsense with a humorous twist at myoddsock.com.
By Stacie Prada
I learned about Black Swan events recently as they relate to investing. Multiple sclerosis symptoms and progression seem to me to be personal Black Swan events. Nassim Nicholas Taleb developed the theory based on the history of black swans being thought of as an impossibility. It was a known fact that they didn’t exist. So when black swans were discovered it was a surprise and significant, and in hindsight black swans seemed like something that people could have predicted or should have expected.
Being diagnosed with MS was an enormous Black Swan event in my life. Suddenly the extreme fatigue, numbness and bowel issues that held no explanation for many years were obviously indications that something was wrong with my body. The signs were there, but I didn’t recognize them as related to each other or of any significance. Given how much these symptoms impacted my life, hindsight makes me seem foolish for not connecting them to a major health issue.
Most recently, my feet started buckling more frequently with a frustrating experience of losing the ability to walk temporarily. It surprised me. It made me realize that MS is affecting my legs much more than I’d thought. And in hindsight I remember all of the dismissible moments when my feet would buckle. There were times when one foot would stop supporting me while standing among friends. Other times while walking, one foot would shift so that I lost my footing on flat ground and needed to catch myself. I just thought they were odd, one-off unexplainable experiences. Now I recognize them as a very common MS symptom that I already knew about – spasticity. What is obvious to me now seems like it should have been obvious to me then. In my defense, the frequency and impact previously had been low. Now that they’ve increased, I see a pattern and progression.
Now that I know what’s happening, I can work with my doctor to try to offset how my body is behaving. I’m continuing to do stretching, strengthening and movement activities, and I’m adding medication, massage and physical therapy. My shoe choices are also changing to reduce embarrassment and possible injury. It’ll take time and effort to see if I can change the course of how MS affects me.
It’s like reading a book or watching a movie where all will be revealed at the end. I’m living in the middle of my story, and by the end the mysteries of my body will be pieced together, explained and understood.
*Stacie Prada was diagnosed with RRMS in 2008 at the age of 38. Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at stacieprada.blogspot.com
By Penelope Conway
We all have one – that infamous junk drawer that collects a little bit of everything from spare keys, to half used chapstick, to pens, to some unknown mechanical looking thing that nobody is quite sure what it is, to just plain junk. There seems to be at least one drawer like that in every person’s house. Even the most put together house has lurking somewhere in the kitchen, office or bathroom, a junk drawer.
It goes unnoticed until a pen is needed to jot down a quick note, then almost as if by habit you go to the junk drawer. Immediately you open the drawer and begin tossing items back and forth as you rummage through the contents in search of that much needed pen.
You keep telling yourself that someday you’ll clean that drawer out. Someday, you’ll organize it. But every time you open the drawer, the task seems too overwhelming, too time consuming and just plain hard.
Does this sound familiar?
Just like that junk drawer, we have places in our heart where we hide away bits and pieces of the brokenness we have experienced because of multiple sclerosis and other painful life events. It’s messy in there.
I know I stuffed away my own share of hurts, fears and difficulties. Things like the anger I felt because I had to end my career due to my MS progression, the defeat I encountered when I started using a wheelchair, the abandonment I went through due to lost friendships, the fear I experienced because I found I was no longer able to be as independent as I was before MS came along, and the disappointment I felt because I could no longer wear heels. Yes, even my shoe choice was a difficult thing to face.
I kept telling myself I would face those fears, disappointments and pain someday. Someday, I’ll address those things head on. But every time I opened that drawer in my heart, the task seemed too overwhelming, too time consuming, and just plain hard. So what did I do? I ignored it.
Every once in a while I would forget it was there and accidentally open it up. The emotions would start spilling out and I would shut it as quickly as I could.
“Nope, I’m not dealing with that. I’m not ready,” I would say.
But I knew I needed to take some time to dump everything out, sort through what should stay and what should go, and then take the trash out. It wasn’t easy. I actually think it’s one of the hardest things in life to do, but it was time I let go of the hurts and fears weighing me down.
Today is a new day and you are worth too much to hold onto all those weighty emotions tucked away in your junk drawer. Set some time aside and start clearing out the clutter so you can make room for the beautiful things that you deserve in life. You are worth it.
*Penelope Conway was diagnosed with Multiple Sclerosis in November 2011. She is the author and founder of Positive Living with MS (positivelivingwithms.com) where she uses humor and her own life experiences with MS to help others navigate this unpredictable journey. She believes that staying positive and holding onto hope is the key to waking up each morning with the strength to get through the day.
Find Out What “Moves” Joe Revello
Joe Revello tests out his new Alinker, with its inventor Barbara Alink
“It’s all about helping people,” noted MSAA volunteer Joe Revello of Plainfield, NJ. “Whether it’s raising funds, helping at an event or just having that conversation to build awareness, any effort in the fight against MS is critically important.”
Joe, who was diagnosed with MS in 1995, has been an active volunteer in the MS community for more than a decade. Recently, with the help of his sister-in-law, Joe organized a very successful school walk for MSAA and has now joined our newly formed volunteer task force aimed at expanding local, grass-roots fundraising efforts to support our signature programs and services.
But beyond his fundraising successes, Joe’s commitment to helping people with MS continues to grow as he now embarks on a much different and very personal crusade. In fact, you can say it literally “moves” him toward a new level of advocacy.
“Walking has been my biggest challenge over the years,” said Joe. “I can’t walk unassisted, my balance is horrible, and I experience pain in my hands and wrists when using crutches. Using a walker has me bent over, tightens my back and doesn’t allow me to walk as far as I want to. I also tried using a scooter but it wasn’t for me as I wasn’t moving and I didn’t want my physical condition to decline.”
Never shying away from a challenge, Joe knew there had to be a better option to help meet his mobility needs, so he turned to … the Internet – of course! “Believe it or not I typed in the words: ‘Futuristic Walking Devices’ and up came this product called the Alinker. I was immediately impressed by its design and function. The more I read about it, the more I knew this could be something that could change my life.”
Produced in the Netherlands, the Alinker is described as a walking-bike that allows users to sit upright so they are eye-level with their environment. Although excited by his discovery, Joe’s enthusiasm was soon tempered when he spoke to the inventor, Barbara Alink, and learned the product was not yet in production and only available as a prototype. However, Joe and his wife Denise didn’t want this possible opportunity to pass them by and ventured off to the Netherlands to meet Barbara and test out the prototype.
“I was on the Alinker that day for four hours and walked two miles,” noted Joe. “I was not fatigued. I moved at my own pace, independently and could stay connected with my companion. I could have never done that with a walker or crutches.”
Unfortunately, Joe and his wife had to leave the Netherlands without the Alinker. A short time later, Joe obtained his own prototype to use temporarily until the company, Alinker Inventions, could begin the manufacturing process. Through a grass-roots crowdfunding campaign in the Netherlands, the company was able to produce a limited number of Alinkers and Joe became the first United States citizen to own a finished walking bike, at a cost of $2,000 US. When hearing about the company’s plans to establish a similar fundraising campaign to help bring this mobility device to people in the United States, Joe immediately put on his MS advocacy hat and went to work.
“My goal is to make the entire MS community aware of this product,” said Joe. “Obviously everyone’s MS is different and people have their own, unique mobility needs. But I would like to see people who are mobility challenged like me have the same life changing experience as I have had with the use of the Alinker.”
“After training, I can walk using both legs more symmetrically on the Alinker and I have built up muscle where I hadn’t before when using other mobility devices. Plus people now call me the cool guy on the yellow bike!”
Editor’s Note: Please know MSAA does not recommend or endorse any particular product or service. This article is intended for general informational purposes only, and it does not constitute medical advice. For diagnosis and treatment options, you are urged to consult your physician.
To learn more about this product, please visit http://www.thealinker.com/.
By: Jeri Burtchell
I remember my first relapse. Early in 1999 my legs had gradually gone numb from the bottoms of my feet up to my waist over a period of two weeks. By the time I decided it wasn’t just a pinched nerve or something else that would go away on its own, I could barely walk. Every step felt like I was waist-deep in quicksand trying to push my way forward and sinking fast.
That was 17 years ago, and all but a few of my subsequent relapses have also affected my legs. Before I began my current MS therapy in 2007, I would often spend some of my time in a wheelchair during the recovery phase of the more intense relapses.
Although I have only had two mild relapses in the past eight years, it doesn’t mean I am living symptom-free. My legs have betrayed me many times over the course of the years, and my face has become intimately familiar with all sorts of things one’s face shouldn’t see up close — asphalt, dirt, and even kitty litter on one occasion when I tripped and did a faceplant right in the cat box.
So when writing on the perils of walking, I draw from firsthand experience (much to my chagrin).
Besides legs that tire easily, I’ve also developed drop foot. Drop foot is like having your kickstand come down on your bike unexpectedly. You’re tooling along fine when your foot drops mid-stride and causes you to trip over your own two feet, like flying over your handlebars.
So I’m terrified of walking without holding someone’s arm or using a cane, rollator, grocery cart or assistive device — especially when I’m traveling. In my mind my wheels are constantly turning, assessing the terrain, the angle of incline. Judging the surface for the traction I’ll get in the type of shoes I’m wearing. It’s mentally exhausting. I literally cannot walk and chew gum if I want to be competent at either task.
The Doozie of All Faceplants
It was 2010 and my best friend Karen and I decided to take the kids to the county fair. She had her niece and nephew, and I had my youngest boy, Alix, with me. I was wearing sensible walking shoes and told all the kids I’d just watch them ride the rides so I wouldn’t get dizzy and fall. I thought I had covered all my MS safety angles.
It was the perfect day. Laughter and screams of delight filled the blue skies. We ate popcorn and cotton candy, and strolled around until the sun began to set. By that time the kids had ridden every ride except for the Zipper.
The Zipper was halfway across the fairgrounds and as we headed over there for the final ride of the day, I began digging in my purse for the rest of the tickets. With both hands occupied, my feet decided they’d had enough. My left foot dropped, scraping the asphalt pathway we were walking on and I was catapulted into the air.
I landed Tim Tebow style, on one knee for a brief second before launching face first into the pavement. I heard my sunglasses scrape the ground before flying off and skittering away. My initial reaction was “Crap! Those glasses were prescription!”, but I calmed when I remember they were just $5 drug store sunglasses. Then I could focus on what really mattered — the bloody egg-sized bump growing over my left eyebrow.
Alix and Karen came rushing to my side and helped me to a nearby bench, then ran to get some ice. I just kept asking for someone to call an ambulance. With the ice bag pressed firmly to my head, I leaned over my knees trying my best to ward off the nausea that was overcoming me.
Before long I heard a voice.
“Ma’am, can you stand up and get into the vehicle for me?”
I’m thinking to myself, “What kind of an EMT would ask me to do that without even a cursory exam?”
“Can you hear me, ma’am?”
Finally I take the ice from my forehead and look up to see it’s a clown with a big red nose and a huge upturned white grin who is asking me to step into a golf cart. I was certain I’d knocked my brain loose.
After several confusing moments while we discussed the lack of foresight or budget allocated to their first aid preparation, he convinced me an ambulance was waiting at the perimeter gate.
Karen followed behind with all the kids in tow as we rushed to the hospital.
They ran a battery of tests that included everything but shaking a Magic 8 Ball. In the end, all signs pointed to a concussion. I have never felt so sick in all my life. I had two black eyes and a huge knot on my head. When I saw the eye doctor a few days later, he speculated that my sunglasses saved me from breaking my orbital bones.
I managed to come away from that experience without any residual physical effects, but one thing is certain: I had developed a newfound fear of walking. I never leave town without my cane, and if I go to a store for a loaf of bread I’ll be pushing it around in a grocery cart. It’s not that I need an assistive device to be upright, I just can’t trust my feet.
I used to fear balance issues as my body’s greatest source of betrayal, but drop foot has taken its place. When I begin to tire or know I will have to walk for more than 25 feet unaided, I deliberately high step, figuring if I pick my legs way up in the air, my toes have less chance of tripping me up. While it might look silly, I believe it has saved me from kissing the concrete on numerous occasions.
If it gets worse I think I’ll look into a brace, but for now I’m taking MS one (careful) step at a time.
*Jeri Burtchell was diagnosed with multiple sclerosis in 1999. She has spoken from a patient perspective at conferences around the country, addressing social media and the role it plays in designing clinical trials. Jeri is a MS blogger, patient activist, and freelance writer for the MS News Beat of Healthline.com. She lives in northeast Florida with her youngest son and elderly mother. When not writing or speaking, she enjoys crafting and photography.
By: Amy McKay, M Ed, CSCS, CES
Revisit Part 1 of this two part series by Amy McKay, certified Strength and Conditioning Specialist providing “useful tips on how to improve each part of every step you take”.
FLEXIBILITY
Let’s face it, as we age our bodies lose their flexibility and elasticity. Before you know it, what used to just be a stretch, is now a strain! Flexibility is known as the quality of bending without breaking. As it pertains to walking, flexibility of the knees, ankles, feet, and toes is critical to a successful stride. Here are a few things to try to keep your feet feeling sweet.
TORSO STABILITY
Torso stability is a vital factor in taking a successful stroll. Without a stable torso, the low back carries more than its share of body weight causing pain and discomfort. Stability is defined as having the strength to stand or endure. Experiment with the following activities to add strength and stamina to your torso.
Tying it up…
So, whether you are stepping out on the town or still shuffling through the grocery store, building efficient walking patterns can allow your body to move more with less effort. These new ideas about the complex skill of walking may allow you to move throughout your day with less fatigue and more energy to do the things you enjoy. This could add to your overall quality of life and improve your life today. Keep learning and keep practicing these exercises. So, put a smile on your face and just take it one step at a time.
*Amy McKay is an Assistant Professor at Tarleton State University in Stephenville, Texas. She is a certified Strength and Conditioning Specialist for the National Strength and Conditioning Association, a certified Corrective Exercise Specialist with the National Association of Sports Medicine, a certified Sports Nutritionist and Specialist in Exercise Therapies with the International Sports Science Association, a certified Personal Trainer with the Aerobics and Fitness Association of America, and a Youth Nutrition Specialist with the International Youth Conditioning Association. She is an avid marathoner and tri-athlete. Amy believes that modifying exercise is necessary for everyone and strives to “find a way” for all to be involved. Her personal motto is to make every day “the best day ever!”
By: Amy McKay, M Ed, CSCS, CES
When was the last time that you actually stopped and thought about the process of walking? Did you know that you could actually improve the efficiency and effectiveness of each step you take with a few simple changes? Put your best foot forward as we explore ways to create a great gait pattern.
Efficient walking starts with your brain. Begin to start thinking about walking. Walking is a complex motor skill. It involves balance, coordination, flexibility, and torso stability. As we stop and study each of these topics, I will provide a few useful tips on how to improve each part of every step you take.
BALANCE
Balance is a very important part of walking. With each step taken, there is a brief moment of balance on the foot that is in contact with the ground. Balance is a skill related component of fitness and can be improved with practice. Balance is defined as an even distribution of weight enabling someone or something to remain upright and steady. When balance skills are compromised, the typical compensation is to shuffle the feet, instead of actually placing one foot in front of the other.
Try adding this simple exercise to your daily life to improve your balance.
COORDINATION
Are you one of those people that can walk and chew bubble gum at the same time? That seems to be our society’s check point for coordination. Coordination is defined as the organization of the different elements of a complex body or activity that enables them to work together effectively. Our bodies are complex machines that are made for movement. When they are properly tuned up, all of our daily activities, including walking, happen with less effort and more ease. Activities that cross the midline of the body have been shown to enhance coordination skills. Add these activities to daily routine.
Check back on Wednesday, March 9th for part 2 of Amy’s Just Take It One Step at a Time post.
*Amy McKay is an Assistant Professor at Tarleton State University in Stephenville, Texas. She is a certified Strength and Conditioning Specialist for the National Strength and Conditioning Association, a certified Corrective Exercise Specialist with the National Association of Sports Medicine, a certified Sports Nutritionist and Specialist in Exercise Therapies with the International Sports Science Association, a certified Personal Trainer with the Aerobics and Fitness Association of America, and a Youth Nutrition Specialist with the International Youth Conditioning Association. She is an avid marathoner and tri-athlete. Amy believes that modifying exercise is necessary for everyone and strives to “find a way” for all to be involved. Her personal motto is to make every day “the best day ever!”
While every day here at MSAA we strive to improve lives today through vital services and support; March is a very important time of the year. MSAA is proud to launch the March is MS Awareness Month campaign. Throughout the month of March, MSAA will heighten awareness around MS symptom and relapse management, dedicating each week to a particular MS symptom or issue.
Walking Awareness and MS (week of March 7th) – featuring comprehensive information on walking and MS with a newly developed awareness survey, a video provided by Acorda Therapeutics, blog posts by our guest bloggers, and social media posts. Content posted to www.mymsaa.org/walking.
Pseudobulbar Affect (PBA) Awareness (week of March 14th) – featuring MSAA’s new MSi video on PBA with Dr. Kantor, a patient-focused awareness survey, blog and social media posts. Content posted to www.mymsaa.org/pba.
MS Relapse Awareness (week of March 21st) in collaboration with the Multiple Sclerosis Foundation – featuring a newly developed Relapse Awareness Quiz, an updated version of our Understanding and Treating MS Relapses brochure, and blog and social media posts. Content posted to our MS Relapse Resource Center – www.relapses.mymsaa.org.
Have you visited our new website yet?
MSAA recently unveiled our newly redesigned website, MyMSAA.org. With a clean, mobile-friendly design, the new mymsaa.org features enhanced graphic images, links to important topics including MS Symptoms, Treatments, and information specifically for the Newly Diagnosed.
Check out all of the enhancements and features at mymsaa.org and let us know your thoughts!