Tracking Symptoms and Treatments with Compassion and Encouragement

By Stacie Prada 

With each new year, I think about what’s ahead, what I can control, and what will make the next 12 months fulfilling for me.  Instead of pushing myself to do more or be better, my approach this year for health management is to track what helps me manage my health with methods that are easy to use and visually informative.  

Knowing what my body needs is an ever-changing puzzle, and tracking provides clues for what could be the cause or remedy for things contributing to health challenges. Add aging and menopause to living with Multiple Sclerosis, and knowing how to best manage my changing body is not easy.  

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Seasonal Well-Being Checklists

By Stacie Prada 

For me, autumn elicits memories of a new school year, football games, raking leaves, carving pumpkins, and pressing apples for cider. Prepare for winter with home tasks and wardrobe shifts. Move sweaters, boots and winter wear from boxes or the back of the closet to the front for easier access. Suggestions for weatherizing homes and belongings are prevalent and specific, but they are less so for personal health and well-being.   

Often, I experience recurring and seasonal symptoms before I realize I have a method that helps me cope.  I’d love to be able to avoid the suffering it causes if at all possible. I decided to create and follow a seasonal list of tasks to proactively address my health needs. It has an emphasis on issues that Multiple Sclerosis challenges or creates for me each year.  

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Fall — Season of Revival? 

By Doug Ankerman

Step outside and you’ll notice the change.  Temperatures beginning to dip.  Breezes blowing a tad harder.  Trees morphing from green to an artist’s palate of reds & yellows. 

My once vibrant flowers now pots of muddled blandness.  Fall sucks the life out of everything once bright and lively.  A looming forecast of what’s to come. 

Fall is gnarly…Err wait, what?  No, no fall is good!   

Fall is when I, as an MSer, come back to life! 

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From Junk Food Junkie to Health Food Nut: My New Year’s Resolution

By: Jeri Burtchell

Happy New Year! I don’t know about you, but I’m starting fresh, determined to make this year better than the one before.

I try not to make unrealistic promises to myself in January since I’m not so “resolute” when it comes to my resolutions. Instead, I set the bar low so I can cross it–even if I have to trip and fall to make it over.

This year I chose only one goal: to eat better. I figured if I can do that, maybe there will be side benefits like losing weight or feeling better.

I confess I’ve been a junk foodie in the past. I use air quotes when I say the word “food” as some people would beg to differ. Yes, I’ve eaten leftover french fries from the bottom of a McDonalds bag a day later. Am I ashamed of that? You bet.

It’s hard to be a freelance writer covering MS and ignore my own bad habits. The latest news regarding the gut microbiome and how it can influence a whole host of diseases has been in the news and on the internet so much I can’t help but feel guilty hoisting a Coke to my lips as I look on and take it all in. Maybe there’s no definitive proof that diet influences MS, but if I can control what goes in my mouth on the off chance I might feel better, don’t I have an obligation to do that?

So enough was enough. I slurped up the rest of my Wendys frosty and pledged to tighten up my definition of food. I mentally stationed a miniature bouncer at the corner of my mouth who only lets the good foods pass.

I wish this bouncer had a wallet full of cash, though. My first stop after I (loosely) defined my resolution was the grocery store. Who knew eating only organic whole foods and raw honey or cold-pressed virgin coconut oil was only a pastime the rich and famous could afford?

The upside to taking out another mortgage in order to eat right is that you are hyper-aware of expiration dates and the gradual decomposition of your quality fruits and veggies. If I wanted everything to turn to compost in the vegetable drawer I would have cut out the middleman and simply buried my hard earned dollars in the back yard.

Not everyone in the house is on this health food bandwagon, however.

My teenager hates vegetables and my 91 year old mother is set in her routine, and she’s in great shape. “She’s earned the right to eat what she likes,” said her doctor, and I swear I saw Mom stick her tongue out at me.

Even though this is my resolution, I’ve found myself asking “every day??” when I think about how often a person is supposed to eat like this. For a terrible cook (another confession), eating things that aren’t ready to “microwave and enjoy” has been a huge challenge.

So I started out with something easy. We all like shakes, and smoothies are like shakes, right?

I got out the old Hamilton-Beach blender and blew the dust off. I looked at all the fancy stuff I’d bought at the grocery store and began flinging in a handful of this, a spoonful of that. I topped it all off with a generous heap of kale (because you can’t toss an Oreo cookie without hitting a story about how good kale is for you), and I set the blender spinning.

It looked…disgusting! The green of the kale, combined with the red of the strawberries gave the concoction an overall brown color. Even though it looked kind of like a chocolate shake, my teenager wrinkled his nose, well aware there had been no chocolate involved in the making of his mom’s new drink.

Ignoring my own urge to pinch my nose closed before gulping it down, I sipped mine and smiled, nodding to him to give his a try.

It turns out we both loved it so much it has become our daily ritual–and the uglier the better. We throw every healthy thing we can find in there.

Besides the smoothies, I cut out processed foods, refined sugar, and carbs. I have no clue how–or if–it affects my MS, but I can tell you this: in the 22 days since I began, I’ve lost 5 lbs., I don’t need afternoon naps, and my brain fog seems to be lifting.

I can’t wait to see how I feel a month from now. Unlike past resolutions, I think I just might be able to keep this one!

*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.

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I’m being followed by a Moon Shadow

By: Matt Cavallo

When I was diagnosed with MS in the spring of 2005, I was completely devastated. In my darkest hours, I believed that my hopes and dreams were over. I was convinced that I was going to lose my job and wouldn’t be able to pay any of my bills. I thought that Jocelyn, who was only 27 at the time, should leave me and start over with someone who didn’t have a chronic illness. I didn’t think it was fair for her to care for a sick man at such a young age. I also didn’t think that we would be able to have children. Not only was being a dad a dream of mine, but I didn’t want to deprive Jocelyn of the joys of motherhood. Or if we were able to have children, I didn’t want to be a burden on the family and have my kids growing up with a disabled father.

I stayed in this depression for months after my diagnosis. I built a wall around me and pushed everyone out to the periphery. Multiple sclerosis had changed me. The man in the mirror no longer looked like me. My spirit had been drained and replaced by a pale, sad man with raccoon eyes. Not only did I not look like myself, I wasn’t acting like myself either. I was becoming short with people and increasingly negative. Other times I would be quiet and retreat within myself. Being an extroverted conversationalist, those around me at the time couldn’t figure out why I wouldn’t carry on a simple conversation.

A lot of it had to do with how I felt the world around me perceived me. Many people who talked to me after my diagnosis weren’t sure what multiple sclerosis was and expected me to be in a wheelchair when they saw me. Others would say positive things like, “you look great” or “it could be worse”. Most compliments ended up making me feel worse and more isolated. I felt like no one, not even Jocelyn, understood me. I felt like I was alone on an island and that no one else on the planet knew what it felt like to be me.

As soon as I was able to operate a car again on my own, I drove by myself to a beach I had often frequented as a child.  I needed to be there by myself, alone with my thoughts.  I sat behind the wheel of my Ford Ranger in a parking space near the beach wall and looked out towards the ocean. Trying to make sense of my diagnosis, I watched the waves crash.

Between the sound of the waves, a song popped into the jukebox of my mind. It was a familiar song, one from my youth: Moon Shadow, by Cat Stevens. I started humming the lyrics to the chorus, but couldn’t remember the words. I needed to know why I was thinking about that song at that moment. I sped off toward my parent’s house and grabbed the Cat Steven’s Great Hits CD from their collection. I then got back in the truck and drove with Moon Shadow on repeat.

I listened intently to the song and concentrated on the message behind the lyrics. The lyrics spun a story of a man who lost his legs, eyes, hands and mouth. It struck me that I could lose these same functions because of MS. I realized that the initials of Moon Shadow were MS. Then it hit me: I was being followed by a Moon Shadow. A wave of emotion hit me. I was too young to be disabled. There was so much I still wanted to accomplish in life. I felt lost and scared for what my future held.

As I listened to Moon Shadow for the seventh time in a row, my panic turned to calm.  Although the man in the song knew he could lose all these physical functions, he was going to be alright.  That was the first time I realized I’m going to be alright too.

I was still too overwhelmed at that time to communicate my fears and feelings to others, but I did start to journal and capture my emotions on paper.  Slowly over time my notebook of blue-lined paper transferred into my memoir, The Dog Story. The Dog Story gave me a voice and the confidence to help others who were living with a chronic illness and experiencing the same things that I did. I want other patients to know that they are not alone. Most importantly, I want to share a message about hope, the powers of love and finding strength in your darkest hour.

Today, I no longer feel ugly, isolated or alone. I am living a life that I never dreamed possible. Jocelyn never left me despite my attempts of pushing her away. Now, we have two beautiful boys that our world revolves around. I am the dad that I always wanted to be coaching their baseball teams and doing normal dad stuff. My career is helping other people like me and using the story that I was once ashamed to tell to inspire others that if I can do it, they can too. I still walk my dog every day, whether I feel that I am strong enough or not.  And while driving during time of quiet reflection, I still find myself humming along to Moon Shadow. And I am thankful.

*Matt Cavallo was diagnosed with multiple sclerosis in 2005. Matt is an MS blogger, author, patient advocate, and motivational speaker. Matt also has his Master’s degree in Public Health Administration. Matt is the proud father of his two sons, loving husband to his wife, Jocelyn, and best friend to his dog, Teddy. Originally from the Boston suburbs, Matt currently resides in Arizona with his family. To learn more about Matt, please visit him at : http://mattcavallo.com/blog/

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