Meet New MSAA Guest Blogger Lauren

By: Lauren Kovacs

My name is Lauren Kovacs and I am 41. The stress of moving from California to rural Virginia poked the MS monster for the first time at age 16. My official diagnosis didn’t show up on stage until I was 21.

I was a pediatric patient with optic neuritis. This meant no learning to drive, no depth perception in gymnastic, and crashing into hall walls at school. I was not in a good place, but the MS monster had only stirred.

After nine months, my vision returned. Life went on. I went to college and made the university’s cheer team. MS was never the diagnosis at 16.

I worked part-time, took a full load of classes, and was a college athlete. The summer before my senior year, after a very tiring and hot week at cheer camp, I got sick. I rode home on the floor of the student-athlete van. I unknowingly had poked the monster again.

The next day, I went numb from the neck down. So began my quest for an answer. Some thought it was a virus and others thought I had been dropped in cheerleading camp and had a slip disc. I stumped all the athletic doctors for the university’s athletes. Cool. The best was a civilian doctor who told me I had a stroke and sent me back to campus with muscle relaxers.

I went back to my original neurologist. An MRI and other tests came back showing MS. The doctor told me not to research it. I was sent back to school. Confused, alone, angry, and tired was the casserole I was served. Newly diagnosed and alone, questions swam in my head and some chocolate in hand, as comfort.

I didn’t make it to nationals for UCA and I felt my teammates were more worried about re-doing the routine without me than my devastating diagnosis. Some even accused me of faking in order to skirt practice.

I kept going. I pushed on. I graduated, got a job, and married my sweet heart. I saw a new doctor who put me on Avonex. I had baby boy one. Four months later, I was hit with a horrible flare leaving me numb from the neck down again. After slithering around on the floor with a new baby, IV steroids were prescribed. Life went on. I did Appalachian clogging and was very active. I started figure skating instead to combat the heat.

Baby boy two arrived without any MS issues at all, except my fall down the stairs, which I can blame on MS. He was premature with health issue. A toddler and a sick infant meant stress. I finally changed doctors, after five years, because he refused to prescribe anything, but Avonex. He kept telling me I would get used to it.

The new doctor prescribed Copaxone, not long before we moved to North Carolina. I took Irish dance lessons, once we moved. The two boys were doing well. Heat, fatigue, and stress were manageable. The monster appeared to be contained.

Baby boy number three arrived and that began my slow decent. The monster was waking up. I was able to nurse for eight months. I was thrilled. IV steroids forced me to end that scene. However, they did their job and I changed doctors again. That is five neurological, if you are counting.

I had a new doctor who finally believed three healthy boys and me. Life was good, too smooth really. When my youngest was four, rocks were being thrown onto my path. The Betaseron was no longer working and I began sporting a cane. The monster was fully awake.

No worries, I can adapt, I thought. We took a Disney cruise with friends and when I had trouble walking onto the boat, I knew things were changing. I sat and waited for a cast-member to get a wheelchair. I held back tears, but the cast-member said I would enjoy my trip more. I did, but I felt crushed.

By the time my youngest was in first grade, I used a walker. I was also head cheerleading coach at their school. I was officially handicapped and life was getting tougher.

Here I sit, now. I only use a walker in the house. I crawl on my hands and knees, if I am not steady. I have the kids make dinner and there have been times I instruct from face down on the floor. But, I do it and I fight.

MS is a battle and you must never give in. Being realistic and humor go hand in hand with MS.

Share

Making and Preserving Memories

By: Stacie Prada

As we embark on a new year, I think about the highlights of the past year. What makes me grin, what am I proud of accomplishing, and what was meaningful to me? How can I memorialize these things so that I can enjoy them in the future? I think it’s important to mark the passage of time, celebrate our successes, and keep our years from merging into each other without distinction.

When asked what one thing people would save in case of fire, they often say their photographs. I think this is telling for how important memories are to us, and I think this is helpful information for us to proactively add joy and meaning to our lives.

If we lose our photos, we will hopefully still have our memories. But what if we lose them with MS disease progression or aging? I may never reach a point in my life where I experience the extent of memory loss that people with Alzheimer’s and dementia experience. Still I think it’s helpful to look at the extreme cases and learn from them. People with dementia are sometimes able to recoup some memories through music, stories, and photographs, and this can improve their quality of life.

Creating Memory Triggers: We can work to improve our memory, but I also think it serves us well to create memory triggers that help us retrieve memories. I like to preserve memories physically through photographs and mentally through tying them to other things like music, people, food, and aromas. I try to enjoy the moment, feel it, and store it away in the subconscious. These are some ways I enhance my experiences and create memory cues:

• Take photographs. I love my camera and tripod attachment that will allow me to take a time delay photograph of everyone in the room – no need to have one person take the photograph and be left out of the photo. Have someone take action shots of you doing things you love. These will help you remember how you felt while doing them.

• Put photos in an album either in hard copy or digital format. Just make sure they’re accessible to look at. If you can add notes about the photo, all the better.

blog_memories_IMG_4455 (2) (2)
• Pay attention to music. Buy the soundtrack to a movie you enjoyed. Make a playlist of the songs you heard for the first time this year or are meaningful to you at this time in your life.

• Journal about things you care about. This is a terrific way to remember your thoughts and how you felt at a specific time in your life.

• Relish the taste of foods you love. Tell people in your life your favorite foods. It’s pretty incredible how people tend to remember other people’s favorite foods.

• Take time to smell things and register them. Think about how a baby smells fresh from a bath, how a forest smells after a rain, or how baked goods smell fresh from the oven. Take a big whiff if you like something, and pause to appreciate it.

Preserving my memories is not a solely selfish endeavor. My memories involve my friends and family, and compiling them is a gift for them to share with or without me. My mother kept a scrapbook for our family when I was young, and the stories she wrote to accompany photographs truly tell a lot more beyond the photographs. She’s been gone many years now, but seeing her thoughts preserved in her handwriting brings her back to us in a special way. My sisters and I treasure them, and things we may have known at one time but hadn’t remembered are available to us now.

With MS, other neurological diseases, and just aging in general, cognition and memory can be something that declines. The idea of losing my memory is scary, but it’s less so when I can actively do things that may improve my life now and for years to come.

Resources:
• Music & memory is an organization that provides iPods with personalized playlists to people with Alzheimer’s and dementia that improves those people’s quality of life. https://musicandmemory.org

StoryCorps’ mission is to provide people of all backgrounds and beliefs with the opportunity to record, share and preserve the stories of our lives. They have an app that allows anyone to record their stories. https://storycorps.org/

*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 http://stacieprada.blogspot.com/

Share

Finding the Strength to Fight MS for the Holidays

By: Matt Cavallo

In September of 2010, I was faced with a devastating decision. I was experiencing severe spinal stenosis and a fractured C6 vertebra, which my doctors believed was a result of complications due to my initial onset of transverse myelitis five years earlier. My decision was to have an emergency cervical fusion to address the problem before it became more complicated. At the time, my kids were only three and one years old and I was worried that if I didn’t have the surgery I wouldn’t be able to participate in their lives the way that I wanted too.

Fast forward to December of 2010, I was out of the neck brace and going through physical therapy. I was weak, tired and had lost a lot of weight. The surgery was another in a long string of MS events that rendered me in a depressed state. I didn’t want to see friends or family and had become a shell of my former self at the house. The blinking of Christmas lights and singing of carolers was not enough to get me in the Christmas spirit.

I was working at the hospital at the time and my practice manager was throwing a holiday party. She insisted that I be there. I was feeling like Ebenezer Scrooge and issued a, “Bah Humbug” at the thought of kibitzing with my coworkers (even though they were doctors, nurses and therapists). My wife convinced me to go to the holiday party and I parked myself in a chair by the fire pit in the back yard for a couple of hours. My coworkers brought me food, drink and merriment, but I still could not find the spirit.

Was this going to be the year I gave up on Christmas? Was this the year that MS had finally won the battle?

My parents flew into town just before Christmas. My dad is a great Italian chef and the familiar aromas of my grandmother’s recipes were not enough to snap me out of my funk. His food smelled and tasted like memories of Christmas past. Now, here I am, Tiny Tim wondering how long I could feign a smile despite the depression and ill feelings MS had saddled me with this holiday season. I went to bed believing that maybe I did deserve a lump of coal in my stocking.

Then it happened.

Christmas morning 2010, two wild-eyed and blonde-haired boys rounded the steps to see the gifts that Santa had left for them. Their spirit and enthusiasm sparked a flame inside me. I knew that no matter how bad I was feeling or wanting to give up that these two boys needed me to be there in the moment with them. So I donned my Santa hat and let them sit on my lap on the floor as they ripped open the wrapped Christmas presents with delight. It was then that I realized the true meaning of Christmas was to find joy and be thankful for my many blessings despite difficult times. Regardless of what holiday you celebrate, I hope your season is filled with hope, joy and love.

Happy holidays everyone and a happy New Year, from my family to yours!
matt

Figure 1: Matt and Colby putting together a Christmas toy 2010

*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/

Share

No Routine Schedule with MS

By: Matt Cavallo 

There has been nothing routine about my schedule lately. Between traveling for work, the kids going back to school and everyday stress of life with multiple sclerosis, I am wiped out. My last flight was particularly exhausting. It seems that every time I travel, the airlines come up with new ways to delay my flights. This past one last week was a flat tire. Yes, a flat tire delayed me for two hours on a one hour flight to Santa Barbara.

That is the thing about life. There is relatively low predictability. Those of us living with MS love a predictable schedule, but the truth is that circumstances outside our control force us to adjust on the fly. The problem is that if we don’t keep up, we get left behind. So how do I manage to keep up with a busy schedule while dealing with a chronically fatiguing disease? Here are some tips that I use to make my hectic schedule a little more manageable.

3 Tips for Managing a Schedule with Multiple Sclerosis

1. Prioritize and Plan Ahead – Prioritize neurology, other doctor appointments or medical procedures ahead of time. There is limited availability for these medical services and spots fill up fast. If you know that you need a neurology follow-up, MRI, etc., plan six months ahead of time and book it. This will reduce the stress of trying to get an appointment at the last minute, which may cause the extra stress of having to juggle other items on your calendar.

2. Keep a Calendar – Whether electronic or paper, you need to have access to calendar reminders when planning your schedule. I cannot tell you how many times I have double booked myself because I did not refer to the calendar in my pocket. Using today’s technology will allow you to be prompted for important events or forecast possible conflicts. With MS you have enough to worry about, let the calendar manage your time, so you don’t have too. I know once I did, my stress of wondering what I had next was gone.

3. Let Go of what you can’t Control – This is perhaps the hardest lessen to learn. So you have prioritized, planned ahead and calendared an event. Then something unexpectedly flares up derailing your schedule. This is OK. It is bound to happen. Last week, there was nothing I could do about the flat tire on the plane. Some in the crowd went to customer service. Others went up to the gate agent. Most waited in some line for two hours asking questions about an event they couldn’t control. I sat in my seat and waited for the tire to be changed. After all, I would rather be a little late then try to land on a flat tire.

Living with multiple sclerosis is tough. It can be a chronically fatiguing condition that makes you feel like you are constantly trying to catch up with those around you. Don’t let your schedule contribute to your MS fatigue. Use my 3 tips for managing a schedule with multiple sclerosis. Remember to prioritize and plan ahead, keep an up-to-date calendar and let go of what you can’t control and you will find the everyday stress of keeping your time melt away.

*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/

Share

Back to School: The Importance of Rest and Recovery

By: Meagan Freeman 

As a mother of 5, I have always looked forward to that special time of year when my children head back to school! It was a long, hot summer this year, and I spent my days without the usual daytime break I always need during the school year. Summer can be incredibly difficult for parents with MS, and children are often left bored at home, looking for entertainment. Temperatures often hit the 90s-100s in my area, and on those very hot days I was left a virtual prisoner, trapped at home in the A/C with children who were not often pleased. Most MS patients require a certain amount of rest during the day, and noise can become a tremendous irritant. Without a break, we often become fatigued and emotionally spent.

My children returned to school early this year, on August 24th. My oldest left for college this year, and it was surreal to help him pack up his things and head out. Though I was saddened a bit, I also thought to myself with a twinge of guilt: “Check one off the list!” The first day back was chaotic, dragging exhausted children out of bed early and forcing them to dress, eat breakfast, and get out the door begrudgingly by 7:45 AM. I have found that planning ahead and organization are the keys to success with a large family, and I always spend the evenings preparing everything needed for the morning. Lunches and snacks are packed ahead of time, clothes are in piles according to child, and backpacks are in a neat line ready to be carried out. I have issues with memory loss at times, and I find that failure to plan ahead leads to disaster. I recommend using electronic devices to plan out calendars for the week, setting “alerts” for important times and events. After forgetting to pick children up on early dismissal days several times last year, I have learned to mark out the important pick up times well in advance.

We jumped in the car on that first day of school, everyone in new outfits and excitement in the air, and made our way around town to multiple schools, into new classrooms and new adventures. After the last child left the car, I drove home slowly, sipping my coffee with a sense of great relief. I walked in the door of my home, to a quiet and peaceful spot for the first time in months. I took a deep breath, and realized that at last, I had some free time for myself.

Through these yearly experiences, I have come to understand that I need time for rest and rejuvenation. It is not a luxury for me, but rather a medical necessity. Without a chance to “recharge the batteries,” we just don’t function well as mothers and fathers with MS. Though childcare can be incredibly expensive during the summer, I would advise all parents with MS to factor in some time to rest. Those precious quiet moments are exactly what the doctor ordered, and we should all begin to see rest as a medication or a treatment, something that our disease demands. Even if a friend or family member might give you a bit of respite and take the kids for a few hours occasionally, this would be of great benefit. We should all take a bit of time to care for ourselves, so that we might care for our families in the best possible way. Happy Back to School!

*Meagan Freeman was diagnosed with RRMS in 2009, at the age of 34, in the midst of her graduate education. She is a Family Nurse Practitioner in Northern California, and is raising her 6 children (ranging from 6–17 years of age) with her husband, Wayne. She has been involved in healthcare since the age of 19, working as an Emergency Medical Technician, an Emergency Room RN, and now a Nurse Practitioner. Writing has always been her passion, and she is now able to spend more time blogging and raising MS awareness. She guest blogs for Race to Erase MS, Modern Day MS, and now MSAA. Please visit her at: http://www.motherhoodandmultiplesclerosis.com.

Share

Do the Patient Billing Double Check

By: Matt Cavallo

Raise your hand if you went to school to understand medical billing? My best guess is that the majority of you did not raise your hands.

Alright, this time raise your hand if you understand the difference between a medical bill and explanation of benefits. Again, my best guess is that most of you did not raise your hand.

An explanation of benefits (EOB) is a statement summary of charges sent by your insurance company about an episode of care. The EOB is an FYI of what is covered or not covered, but it is not necessarily an accurate reflection of your medical bill.

Your medical bill will always come from the facility that you received the medical service. These bills will state the billed cost (what the facility charged your insurance), insurance reimbursement amount (what insurance paid to the claim generated by the facility) and the patient responsibility (the amount you owe).

Now, the patient responsibility part of the medical bill requires you to do a double check to ensure that you are paying the correct amount. Often times the patient responsibility can be inaccurate if it wasn’t coded properly. This is especially true if you have some special situation like financial assistance for a specialty treatment.

Take me for example. For my MS medication, I have a financial assistance program offered from the pharmaceutical company that manufactures my treatment.

As an aside, if you are not aware whether or not your pharma company offers a copayment assistance program or if you qualify, that information is generally listed on the pharmaceutical company’s website.

Back to my story. So, the terms of my financial assistance program state that I am responsible for a $10 copayment for each treatment. Therefore, if I am billed $10.01, the medical billers are off by a penny and I can dispute the charge.

I started receiving bills that were over $100 per treatment. These bills also matched the responsibility on my EOB, so it stands to reason that I would be responsible right? Wrong.

I do have a background in medical billing. I used to manage a hospital clinic and we had this problem all of the time. The problem is that the financial assistance programs require a different workflow than traditional medical billing. A lot of time the billers are unaware of how to apply these financial assistance programs or they are not marked properly in the medical chart.

If the medical biller does not apply the financial assistance program to the bill, then an erroneous charge is generated. As a patient with a financial assistance program, you are not responsible for this error. The problem is that you may not always know that you are not responsible. You think that since the bill matches the EOB that it must be right. This is not always the case and it is contingent upon you to be your own advocate.

When I started getting these billing errors, I took action. I called the 1-800 number on the bill and I contacted my pharmaceutical company to let them know. My pharma company reached out to the medical billers and that bill was resent stating that I only owed $10!

Doing a double check, I saved myself $90. This has happened to me a couple times after the initial erroneous bill. Each time I called and each time I was only responsible for $10 per visit. By now, I have saved over $500 this year by doing my double check and not being afraid to pick up the phone and question the bill.

From my time managing the clinic to situations with me and my family, to helping friends of mine, there are any number of reasons why double checking your bill can be beneficial. One last story, my wife got billed an out-of-network lab draw for a well woman exam at an in-network facility, generating an over $700 bill. Bills are generated by computers, but people are in place if you have any questions regarding the bill. After we got over the sticker shock, I said let’s call. We were responsible for our $25 copay and that was all!

Being a patient with multiple sclerosis is tough. Don’t let medical billing errors make it any tougher. Remember to be your own advocate and if you are questioning a bill, don’t be afraid to pick up the phone and do the patient billing double check!

*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/

Share

Journaling My Story (MS)

By: Matt Cavallo

In July of 2005, I was in a deep depression. I had just been diagnosed with multiple sclerosis in June of 2005 and I was in the midst of an internal struggle trying to come to terms with being newly diagnosed.

I have a family history of MS. My aunt had MS and died when I was only four years old. Her MS progressed quickly and she left us at a young age. Watching me lose my ability to walk was particularly hard on my family who couldn’t help but think of my Aunt Loretta when looking at me. It was like they were reliving a scene from my aunt’s life that did not end well.

Those emotions that my family experienced in watching my aunt progress through her disease were awakened as I started to progress. Unintentionally, those emotions were transferred to me making it impossible to cope or come to terms with my diagnosis. So, I did what I always do, and turned to the pen.

You see, I’ve been writing since I was a small boy. Whether it was poems or short stories, writing was always therapeutic for me. So when my symptoms first presented themselves, I started keeping a journal of what I was experiencing.

At first, the journaling was very helpful for my memory. Then, as I got admitted to the hospital, I used my journaling to capture the patient experience. I had never been in the hospital before and between the pain meds and all of the tests, I wanted to capture all of this information in my journal so that I could refer back to it when I was discharged.

Little by little, my journal began to grow. I had captured my symptoms, my hospital stay, follow-up doctor’s appointments and now I was capturing my depressive thoughts as I struggled coming to terms with my new fate. I just had no idea what path in my life my journaling would take me on.

Then it happened. I found myself sitting in my pick-up truck at the beach, listening to the waves crash. All of a sudden, the song Moonshadow by Cat Stevens, popped into my head. I used the inspiration from that moment to carry me to Barnes and Noble.

At Barnes and Noble, I wanted to find a personal story of the diagnosis that I went through. I wanted to hear another person’s story, so that I would know that I was not alone. However, the books on the shelf were all technical or diet manuals about MS. Disappointed, I returned home and pulled out my journal.

As I flipped through the pages of my journal, I could recall my symptoms, my emotions, my fears. It was at that moment that I realized I was reading the story I was searching for. It was all in my journal. I would spend the next couple of years transforming my journal, into my memoir. Now, in an ironic twist of fate, Barnes and Noble carries The Dog Story: A Journey into a New Life with Multiple Sclerosis.

My journal has been transformed into the very thing I was seeking. Now it is a resource for other people who are experiencing the diagnosis I had faced all those years ago. Today, I continue sharing my journal though my books and my blogs. Sharing my story with the world has been the most rewarding and humbling experience for me. My best days are always when a reader reaches out to me and lets me know that my story helped.

Journaling doesn’t have to lead to writing a book or blog, but it is an important way to remember how you were feeling at a certain place or time in your life. How are you sharing your story? There is someone in your life right now who may not understand what you are going through. When words fail you, write down your thoughts and feelings and share with that person. If you can’t write, keep a picture journal or scrapbook. You will both be glad you did.

*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/

Share

Life with MS: My 5 Ways to Stay Happy, Lollipops and All

By: Jeri Burtchell

Let’s face it, even days that start out all “sunshine and lollipops” sometimes wind up with you getting sunburned and the lollipop stuck in your hair. You can’t prepare for the negative things that happen in life and those with MS know what I mean when I say we have our fair share of them.

Whether it’s awakening to an unruly new symptom, or spilling all your medicine on the floor when the top finally gives, you know what I’m talking about. Some days it seems like Murphy’s is the law of the kingdom.

jeri blogBut what can you do? Well if you sense an impending bad mood brought on by circumstances beyond your control, I say put yourself in time out…on the beach…in a hammock. And don’t come back until your attitude is better. If that were possible we’d all be heading for the white sands and drinks with umbrellas.

Okay so that advice was just wishful thinking and not exactly helpful, so I’ll make it up to you before I ruin your day and risk your wrath. Here are five sure-fire ways to happy-up your day.*

  1. Laugh at it. When circumstances threaten to punch a hole in your life raft, hang on. Take a step back (provided it was a symbolic life raft we’re talking about) and look at the big picture. Surely there has to be something funny about this that you’re really going to laugh at later. Granted sometimes it’s years later, but you’ll laugh. Try to recognize it now.
  2. Take a nap. Seriously. Sometimes it seems like everything is going wrong, and maybe it is. But it could just be that fatigue has made life temporarily insurmountable. Just rest a while and sleep on it. Most of the time, for me anyhow, I will awaken feeling like I’ve got a fresh start (and even thinking it’s morning again when it’s actually 3 in the afternoon).
  3. Hug a pet. Unless it was your awkward doberman who knocked the pill bottle out of your hands to begin with, our pets have a way of making it all better. A furry snuggle can drain the negativity and stress from your body and has even been proven to lower blood pressure.
  4. Get back to nature. No pets to hug? Next time you trip over a laundry pile or discover the leftovers were out all night, try finding a quiet spot outside to commune with nature and reflect on something that redirects your mind and brings you happiness. A little sunshine (with proper sunscreen) does wonders for elevating your mood. And bird songs don’t hurt either.
  5. Phone a friend. Make sure you have that one go-to friend on speed dial. Someone whose voice brings you joy even if they’re reciting the alphabet. You know the person. But DON’T talk about your problems–that’s not the point! Distract yourself by asking them how things are going. Then really listen. By focusing outward you stop dwelling on your own negatives and before long you will be happy again.

You probably think much of this is silly nonsense, but just trust me. Give it a try. Life’s too short to stay down in the dumps and you really do have the power to create your own positivity. We might not be able to choose what life throws at us, but we don’t have to keep going around with lollipops stuck in our hair either.

*Your mileage may vary. Batteries not included. Some assembly required. 🙂

*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.

Share

Never an Easy Season with MS

By: Matt Cavallo

I was really excited. My allergies were horrible and I was feeling absolutely miserable. Why does this excite me you ask? When I feel horrible, I get inspired to write and was going to write a piece on allergies and MS as a follow-up to last year’s, Is There a Relationship between MS, Allergies and Histamine blog.

Then, this happened to my local weather in Arizona:

matt blog

Out here in Arizona, we say that three straight days over 100 degrees kills all the pollen. I don’t know if this is true or not, but my allergies certainly haven’t been bothering me since it got into the 100’s at about Friday of last week.

But guess what? The heat has been killing me!

Luckily, I got a Kool-Max cooling vest, similar to those in the MSAA’s Cooling Program. Now, even in the dog-days of summer, I can still participate in activities or chores and not feel trapped inside by the summer heat.

This got me to thinking, is there ever a perfect season to have MS? We all know that the summer heat, no matter where you live, is not good for MS. The symptoms of heat exposure can cause a pseudoexacerbation, or brief episode of neurological symptoms not classified as a relapse. These pseudoexacerbations can come and go all summer long as the heat and humidity persist.

However, during the cold dark of winter, us MSers yearn for a hot summer day. The low light of winter is not generally considered good for people with a Vitamin D deficiency, as most of us living with MS may experience. Winter also presents trip hazards with ice and snowy conditions, so those of us more prone to falls have a harder time getting outdoors and staying active during the winter.

Fall presents many of the same trip hazards. As soon as the leaves turn colors, they drop to the ground and become slippery to walk on. Fall also has dramatic temperature fluctuations where it can be summer hot one day and then brutally cold the next. This is where cold and flu season start to come into play along with the pseudoexacerbation possibility from those really gorgeous summer-like fall days.

That leaves spring as the only possibility for an easy season living with MS, am I right? Wrong. Spring is the reason I started writing this blog. It was nice this year, but the pollen kept me from enjoying it. I could not differentiate from an MS day or a sick-with-allergy day. The inability to breathe really caused excess fatigue rendering me unable to discern the difference between allergies and MS symptoms.

The truth is there is no easy season when you live with multiple sclerosis. However, each day is what you make of it. Don’t let the changing seasons stop you from living your life, rather adapt with the seasons and plan accordingly. Wear sunscreen, stay cool and don’t let MS stop you from having the best summer ever!

*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/

Share

Summer Heat: The Enemy of the MS Patient?

By: Meagan Freeman

Before my diagnosis, the blistering sun of the summer season was my best friend. I was a swimmer, wake-boarder, and sun worshipper. I enjoyed my teen years, soaking up the rays in the California sun, trying to get a nice tan and reading magazines with friends. The hotter the better was my attitude! Boy, have things changed since my diagnosis in 2009.

Now, I have had to accept that the heat is no longer my best friend, but rather, my worst enemy. The heat of summer can be an incredibly challenging thing for those with MS, and it can lead to staying home alone while the rest of the family enjoys the beach, pool, and outdoor summer activities. For several years, I felt depressed about my situation. I had several relapses each summer, and my family members were enjoying my formerly favorite activities while I stayed home on the couch in my air-conditioned home, a virtual prisoner.

After several years of this seasonal imprisonment, I began to search for ways to beat the heat, and still enjoy family time outdoors. There are many options for combatting the summer heat, and I want to share some ideas for other individuals struggling with this issue. Fortunately for us, cooling technology has dramatically improved over the years. I always avoided cooling vests, merely because of vanity. I did not want to be seen with a bulky, unattractive cooling vest; but fortunately we have some wonderful, stealth options now.

The key is to keep the core temperature at a normal level, and through cooling technology, individuals can enjoy the summer days without experiencing flares and relapses caused by the heat. Heat leads to increased inflammation, which we need to avoid at all costs. Fortunately, simple cooling products can achieve the goal of maintaining a normal core body temperature, despite warm days.

MSAA has a wonderful program, offering free vests and cooling products to individuals who qualify for the program. The link for the MSAA cooling vest program is: http://mymsaa.org/msaa-help/cooling/. There is a short application to fill out, and this program can offer a vest to qualified patients at no cost. For those who may not be financially eligible, there are several other companies offering these types of cooling products. A good cooling vest can mean the difference between missing out on family activities, to being an active participant.

In addition to these products, I have found several MS vacation organizations, including the “MS Cruisers.” This organization offers cruises to many ports of call around the world, specifically tailored to meet the needs of MS patients. “This cruise is open to all MS patients, family members and friends who share an interest in the MS community, believe that health and fitness are powerful tools for overall well-being and independence, want to travel and interact with others who are facing the same challenges; and are aiming for the same goal of enjoying life to its fullest as they go through the process of adjusting their lifestyle to best suit their constantly changing needs.” (MS Cruisers.com, 2015.) Consider checking out this site for many options for amazing summer cruises. The site is located at: http://mscruisers.com.

I believe that the key to finding happiness and acceptance during a life with MS is to continue to enjoy all of the activities we enjoyed before our diagnosis. Through the use of simple cooling technology, and finding the right vacation options, we can continue to participate in life, enjoy the sun, and feel as “normal” as possible. If you find yourself imprisoned at home in the AC all summer, consider reaching out and trying one of these amazing programs. This can be your ticket to a wonderful, active summer season. Go enjoy it!

*Meagan Freeman was diagnosed with RRMS in 2009, at the age of 34, in the midst of her graduate education. She is a Family Nurse Practitioner in Northern California, and is raising her 6 children (ranging from 6–17 years of age) with her husband, Wayne. She has been involved in healthcare since the age of 19, working as an Emergency Medical Technician, an Emergency Room RN, and now a Nurse Practitioner. Writing has always been her passion, and she is now able to spend more time blogging and raising MS awareness. She guest blogs for Race to Erase MS, Modern Day MS, and now MSAA. Please visit her at: http://www.motherhoodandmultiplesclerosis.com.

Share