New Year’s Resolution Follow Up

By: Matt Cavallo 

Raise your hand if you have stuck to your New Year’s resolution. Believe it or not, we are a quarter of the way through 2014 and reserving the right to recycle our resolutions for next year. I’ll be the first to throw myself under that bus! Seeing as we are a quarter of the way through the year, I wanted to follow up on some of the goals that I set and challenge myself to recommit to my original 2014 goals.

In January, I wrote that I was carrying about twenty one pounds of extra weight. This extra weight was making my legs weak and numb, my fatigue levels were high, and my clothes were uncomfortable. I resolved to lose twenty one pounds. My thinking was that in addition to my multiple sclerosis, the extra weight was contributing to the weakness in my legs and fatigue. My plan was to eat right, eat less and exercise more.

Eating right is a challenge to me. My line of work has me traveling the country almost every week. Seven out of eight weeks between January and February, I traveled. In fact, I am writing this right now on a flight from St. Louis back home to Phoenix. Between living in hotel rooms and the demands of my job, I didn’t have the strength or energy to get a healthy meal when there was a convenient drive-thru option. These eating decisions were the reason that I was struggling to button my pants!

Despite traveling extensively, I was determined to not have to buy new pants. I made the decision that I was going to lose weight on the road by changing my habits. First, I started with breakfast. The hotels that I stay at always have a breakfast buffet. There is an endless supply of bacon, eggs, toast and pastries. Most mornings I can smell the bacon long before I reach the buffet. As much as it pains me, the first change I made was skipping out of the buffet line and heading right to the yogurt and fruit. This change has been hard for me, and there are some days that I can’t resist a big breakfast, but I find that starting the day on the road with yogurt, fruit and a glass of water can be fulfilling and helps my digestive process.

For lunch, I have also been eating lighter. I work in hospitals, so I generally eat lunch at the cafeteria. The cafeterias generally tempt me with yummy burger, pizza or fried chicken options. Again I hold my nose and walk past temptation to the salad bar. I typically eat a salad and top it with some chicken. In the past, however, I would have smothered my healthy salad with a nice creamy ranch dressing, but lately I have opted for the lighter vinaigrettes. These dressings coat the salad easier, so you use less, and they are typically fewer calories than the creamy dressings I prefer.

These decisions that I make for breakfast and lunch afford me some slack at dinner. While my preference at the end of a long day of work on the road is for a double-stacked greasy drive-thru burger, large fries, and chocolate shake, I have been choosing healthier options. Instead of driving through, I place orders that force me to get out of the car. Instead of greasy, fried goodness, I have also been choosing lighter, grilled options.

The other thing that I am doing is consuming smaller portions. Part of it has to do with the fact that I don’t want to buy new pants, but I have found that once I cut back on my portion size, my body got used to it pretty fast. When I was consistently eating heavy meals, I needed more food. Now that I am eating less, I find that I get fuller faster. I am by nature a fast eater, who in the past would clean my plate before others around me had barely started. I now make a conscious effort to slow down and enjoy the food. By doing this, I don’t always have to clean my plate. Drinking more water throughout the day has also been a daily goal of mine. I found that some of my hunger may have been more related to being dehydrated than actually hungry.

With all of these changes, I have lost eleven pounds, which is halfway to my goal weight. My legs feel lighter, and I am less fatigued. And yes, my pants are now less of a struggle to button!

While I am winning the battle with diet, I am losing with exercise. I have made my annual post-resolution trip to the gym. I worked out, felt great and haven’t been back since! There is a free gym in every hotel where I stay, but I find myself alone in my room catching up TV shows or movies that I can’t watch at home because of the kids. I do tend to take the stairs instead of the elevator and keep true to my daily walks, but I know that I would feel so much better if I could just commit to working out.

So, a quarter into the year, and I am doing OK with my resolutions. I have lost half of my goal weight by making better eating decisions which included eating healthier and having smaller portion sizes. It was a struggle at first, but I feel better only ninety days into this year than I did last year. While I am doing well with diet, I have not followed through with exercise. Much like diet, once I establish a routine, I’ll be used to it and it will become natural. I am not there yet. However, New Year’s is not the only time for resolutions. You can recommit to feeling healthier anytime during the year. Are you accomplishing your resolutions? What are you going to do to get back on track? Invest in yourself because you are worth it, and be the change you want to be.

*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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Is There a Relationship Between MS, Allergies and Histamine?

By: Matt Cavallo 

Spring is in the air. So is pollen. With the pollen, my seasonal allergies are in full bloom. I am still sneezing from the last time I stopped to smell the roses. With my seasonal allergies at their peak, I wondered: is there a correlation between multiple sclerosis and allergies?

When I started my research, I was instantly disappointed. All of the initial research pointed to no correlation between MS and allergies. In fact, a 2011 study by the National Center for Biotechnology Information (NCBI) titled, Association between allergies and multiple sclerosis: a systematic review and meta-analysis, concluded that there was no connection between allergic diseases and MS.

While the initial research suggested no direct correlation between MS and allergies, the deeper I dug, a relationship between histamine and multiple sclerosis started to evolve. According to the Encyclopedia Britannica, histamine is a “biologically active substance found in a great variety of living organisms…In an allergic reaction—the immune system’s hypersensitivity reaction to usually harmless foreign substances (called antigens in this context) that enter the body—mast cells release histamine in inordinate amounts.” The definition goes on to explain that the antigens can cause inflammation. After reading this research, my questions became: Does the inflammation caused by these antigens contribute to MS symptoms? And is this partly why I feel worse when my allergies are at their peak?

My questions lead me to research more about histamine and MS. As it turns out there are research studies ongoing exploring the relationship between MS and histamine. A study of histamines and MS on Science Daily found an “unexpected connection between pathways involved in autoimmunity and allergy and suggests previously unrecognized connections between these very different types of immune responses.” The NCBI concluded in a 2013 study, Elevated CSF histamine levels in multiple sclerosis patients, that MS patients had higher histamine levels than the control group and that further exploration was needed.

I am not a scientist, nor am I a doctor. I’m just a guy with MS and bad seasonal allergies. I know that when I feel crummy due to my allergies, that my MS symptoms seem to flare. There are two sides to the argument: one suggests no relationship between MS and allergies, the other suggests that a key immune response to allergies, histamine, may play a role in multiple sclerosis. Until they are able to figure it out, I’m still not going to stop and smell the roses. Hopefully with science and research, one day I will be able to.

Resources:
http://www.ncbi.nlm.nih.gov/pubmed/20456246
http://www.britannica.com/EBchecked/topic/267004/histamine
http://www.sciencedaily.com/releases/2011/01/110131133317.htm
http://www.ncbi.nlm.nih.gov/pubmed/23659456

*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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Commonly Missed Medical Expenses for Tax Deductions

By Matt Cavallo:

The change of the season can only mean one thing: taxes! I can’t turn on my TV or radio right now without hearing an advertisement for tax preparation. Whether you prepare your own taxes or use a tax preparation service, one of the most overlooked areas for tax deductions are medical expenses. In this blog, I will provide a list of deductions that you may have overlooked in previous years.

As a person living with multiple sclerosis, your out-of-pocket medical expenses can be extremely high in any given year. You probably know that your out-of-pocket medical expenses are deductible, but do you know what is considered a medical expense? For example, did you know that the mileage for all the trips you made back and forth to the neurologist, MRI scan or other doctor appointments are tax deductible? If you did not record the mileage during the appointments, don’t worry. Your explanation of benefits from your insurance company will list of all the appointments that you would have traveled for. You can then calculate the mileage to and from your appointment online at Google or Mapquest, and then add up total mileage for all of your doctor visits and you’ll get your deduction amount.

This is just one example of many tax deductions that people living with MS miss every year. Other items that you can write off as a tax deduction include items that insurance may not cover, such as acupuncture and chiropractic care; medical equipment; medications; and smoking cessation programs. There are also health expenses that may not be deducted. Health Savings Accounts (HSA), Flexible Spending Accounts (FSA) and Medical Savings Accounts (MSA) are all bought with pretax dollars, so your contributions cannot be tax deductible. Also non-prescription medications, medications from other countries and nutritional supplements cannot be deducted.

There are certain items that can be viewed as either deducible or not deductible. While you cannot write off visits that insurance did pay for, did you know that you can write off your self-funded medical insurance premium as a tax deduction? For example, if you pay $400 per month for medical insurance, then that is an additional $4,800 for the year that can go towards your itemized deductions! However, while insurance paid for medical care can be deducted, you cannot write off any premium for extra insurance like life, supplemental or employer-sponsored program paid with pre-tax dollars. Also gym memberships may be a write off – if the doctor writes a letter of medical necessity stating that you need the membership for health reasons, but a gym membership for personal fitness or stress reduction is not considered a write-off.

Life with MS can be expensive. Make sure that you take advantage of tax deductions for all expenses related to your illness. Please note that I am not a tax expert and these tips are to be used for informational purposes only.  Before filling out your medical deductions, please read about all of the deductions that are acceptable and not acceptable located in form IRS Publication 502 – Medical and Dental Expenses. IRS Publication 502 breaks down all of the items that may or may not be deducted. Start spring out right and maximize those healthcare deductions!

Resource:

http://www.irs.gov/pub/irs-pdf/p502.pdf

*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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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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Connecting through Storytelling

By: Matt Cavallo

When I was first diagnosed with multiple sclerosis, I was afraid. I didn’t want anyone to know that I had this potentially disabling disease. I was afraid to tell my boss for fear of losing my job, and I was afraid to tell my friends because I didn’t want them to think of me differently. I started pushing away the few people in my life who did know what I was dealing with, because I was afraid of them seeing my condition progress. This included my wife. I was stuck in a deep depression. For all intents and purposes, my life post-diagnosis was being spent lying in my bed watching daytime reruns.

This all changed when my neurologist at the time in Boston asked me to come out and speak at a patient event. She wanted me to tell them the story that I had shared with her about how I got my dog. I was nervous. Not only had I not been telling people about my MS, but now I was going to be up on a stage talking to a big group of strangers about an intensely personal struggle that was raging inside me. That night came, and it changed my life forever.

In an instant, surrounded by a group of my peers living with multiple sclerosis, I realized that I wasn’t alone. By sharing my story that night, I felt a weight lift from me, as the people around me opened up and started sharing their story, too. I was no longer ashamed, embarrassed or depressed that I had MS and was not the man I used to be. Instead, I felt empowered and was embracing the opportunity to connect with others on the most personal of levels, united by this MS tie that binds us.

Sharing my story has opened up doors to places that I had never dreamed of before. It has taken me from coast to coast, putting me on TV, exercise DVDs, newspapers, radio shows, and even onstage in Las Vegas. Had I given up on myself back when I was diagnosed in 2005, I wouldn’t be living these dreams and ambitions that I never knew I had. While there have been many personal accomplishments since my diagnosis, it is always the personal encounters that I value the most.

This is just one example of thousands I have experienced on my journey:

At a restaurant next to the Savannah airport on one of my recent trips, I sat down next to a man who I would say was probably in his twenties. I turned and looked at him and asked, “What is good here?”

“Try the Tybee Island, and you can’t go wrong with a burger,” he replied.

I took his advice and complimented him on the local beer recommendation as we started talking. He was a pipefitter on a job assignment from South Carolina. He was missing his wife and little boy, but still had some time left on his job.

“What brings you to Savannah?” he asked.

“Storytelling,” I replied.

He was intrigued by my answer, so I explained to him that I go around to hospitals and talk to doctors, nurses, therapists, and other clinical staff about the patient experience-and that I also speak to patient and caregiver groups.

“So,” he says, “what kind of doctor are you?”

“I’m not,” I replied, “I’m a patient. I tell them the story of how I got my dog.”

He was captivated and wanted to hear the dog story. So, I told him the story of my symptoms, that I lost my ability to walk and go to the bathroom on my own, and how my diagnosis of MS led to my wife getting me a dog for my birthday, and ultimately my promise to walk him every day. I told him that it had been eight years since then, and I have still kept my promise. I could tell by the look in his eyes that he needed a story like mine on that night.

My food comes, and I order another beer. We go on to talk about the kids. He settles up his tab, shakes my hand and pats me on the back.

“It was great meeting you,” I said. He returned the sentiment.

I finish my burger and beer, then I ask the bartender for my bill. She turned and looked at me and said, “That man that just walked out paid for you and the tip.”

My jaw dropped. I wanted to thank him and say that it wasn’t necessary. I ran out to the parking lot, but he was gone. I couldn’t believe that a complete stranger, a kid in his twenties and someone who had never heard of MS, would surprise me with that selfless gesture. All I did was share my story with him.

Encounters such as this have reinforced to me the power of storytelling. Your story is your power. Many of us living with multiple sclerosis get stuck in the same depressive rut that I experienced when I was first diagnosed. When you are able to open up and share your story with others, you will realize that you are not alone. Each one of us living on this planet has some cross to bear. Ours just happens to have a name: MS. Sharing may make you vulnerable, but you’ll also find that when you open yourself up to others, you truly see the good in people. To the stranger in Savannah, thanks again for the burger and the beer. I will pay it forward.

*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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Tips for Avoiding a Post-Holiday Multiple Sclerosis Flare

By: Matt Cavallo

The holiday season is behind us. Packed away in the garage are all the ornamental memories of the season. Driving around the neighborhood at night no longer is decorated by blinking bright lights. And while the majority of people are resuming their day-to-day routine, those of us living with Multiple Sclerosis are unknowingly entering the danger zone.

While the holidays are a magical time of year, they also impose emotional and financial stresses upon us. Many of us are looking at our December statements wondering how we spent so much or how we are going to pay off the bills. We are probably also feeling the after effects of all those great holiday dinners and desserts.

As the stress of paying the bills or trying to lose weight begins to build, we are at a greater risk for triggering a Multiple Sclerosis Exacerbation. According to the National MS Society, “an exacerbation of MS (also known as a relapse, attack, or flare-up) causes new symptoms or the worsening of old symptoms.” A 2003 research study concluded that, “stressful events were associated with increased exacerbations in relapsing-remitting multiple sclerosis.” Furthermore, according to Healthline.com, “researchers considered the four weeks following a stressful event to be a high-risk time for exacerbations.”

Considering that the holidays are a stressful event, for those of us living with MS, this stress can lead to an exacerbation. Here are some tips to help minimize the stress from the holidays:

Tips for Minimizing Post-Holiday Stress

  1. Develop a financial plan – as the bills mount from the holidays, create a financial plan to help successfully budget your expenses. You may not be able to pay off the bills right away, but having a plan to pay off debt can help reduce stress associated with financial obligations.
  2. Change eating habits – the holidays include a lot of emotional eating. Not only do we eat larger portion sizes during the holiday, but we also eat more desserts. Use the time after the holiday to get back on track in terms of eating healthy.
  3. Exercise – the stress of holidays and the shorter days of winter make it easy to skip exercising. Exercising reduces stress and can help with symptom management.
  4. Get back on schedule – the holidays force you out of your routine. The stress of getting to these holiday events or finding the energy to participate in these events can be draining for people living with Multiple Sclerosis. Getting back on your established routine can help reduce stress.
  5. Set attainable goals – two weeks after the holidays and some of us have already broken our New Year’s resolutions. Revisit the goals that you had to start the year and make sure that the goals are attainable. Setting too high goal expectations can bring about unnecessary stress whereas goals that you can achieve could reduce stress.

As a person living with Multiple Sclerosis, understand that the stress of the holidays can leave you at a greater risk for an MS flare up. Managing that stress can help reduce the risk of an MS exacerbation. Exercising, eating right and developing a financial plan are some of the ways that you can manage stress. Following these tips and reducing stress in your life will help you avoid a post-holiday MS flare.

Resources

*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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Sticking to My Resolution for Better Health and MS Symptom Management

By: Matt Cavallo

I’ll admit it. The holidays were not good to my waistline. My pants are tight and hard to button, and it is uncomfortable to reach down to put on my socks and shoes. At the end of the summer, I weighed in at 190lbs. I just got off the scale and I was exactly 211 lbs. With the weight gain, my New Year’s resolution was to start exercising more and eating less.

The extra weight is a problem for me and my MS. That 21 pounds has definitely made a difference in the way I feel. At 6’2”tall I don’t look that much heavier, I feel like a completely different person. The extra weight also seems to increase weakness and tingling in my legs. Also, my energy levels have dropped and my fatigue has increased. I find myself waking up later and later to walk my dog and the walks are becoming shorter. It is already halfway through January and I am not making progress on my goals.

I was talking with my wife who told me that it takes 21 days to change a behavior. Often with resolutions, we start with the best of intentions, but don’t stick with it long enough to change our behaviors. This has been the case with my diet and exercise resolution. I started out strong for the first couple of days, but have regressed to my old ways.

However, my old ways are not good enough for me. In living with Multiple Sclerosis, it is important for me to take charge of the areas of my health that I can control, like diet and exercise. If extra weight is going to make my MS symptoms flare up, I need to fight through the fatigue and get control. To do this, I am going to create a Wellness Journal. This journal is going to track my daily exercise routine and food intake. The reason for keeping these journals is to keep myself accountable. If I keep a record of my progress everyday then I will be more likely to stick to my resolution. New Year’s doesn’t have to be the only time of year we reassess life and develop goals.

Successful Goal Setting Tips

  1. Keep goals realistic: Don’t set yourself up for failure by aiming for something that is completely unachievable.  It is best to start with a small goal and work towards bigger goals as you accomplish them.
  2. Create a plan that works for you: Figure out exactly how you can accomplish your goal and write down specific actions that you will take.
  3. Stick to your plan: Since changing a habit takes about 21 days, perform that habit every day to make it a conscious part of your day.
  4. Keep a daily journal: Write down what you do every day to hold you accountable.  This will also help you identify obstacles that may be holding you back.
  5. Don’t give up: Even if you slip up on your journey, forgive yourself and start fresh they next day.

I am also going to post my 21 day journey on my personal blog at www.mattcavallo.com/blog. By making my journey public, I am holding myself accountable to all of my readers, as well. My hope is that my story will also motivate others struggling with sticking to their New Year’s Resolutions or any goals for that matter to get back on track.

 

*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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Embracing New Traditions When You Have MS

By: Matt Cavallo 

Some of my favorite childhood memories stem from the holidays. On Christmas Eve,  my Grandmother prepared a wonderful homemade Italian feast followed by a bonfire in the front yard where the whole neighborhood would gather to sing Christmas carols. Although the weather was never above freezing, we were warmed with a sense of unity in song accompanied by the melodic sound of my cousin’s saxophone.

When my wife and I decided that we were going to move away from my hometown in Massachusetts for a new life in Arizona, I knew that I was leaving behind those traditions that I cherished. I also knew that my boys wouldn’t have the same experience that I did growing up. I was worried that I would be depriving my children of those memories that I held so dear.

I had  more pertinent factors to consider in my decision, however. My MS was progressing and I no longer wanted to fight the elements that go hand in hand with living in the Northeast. I love the colors of fall, but I no longer wanted to rake the leaves. There is something so peaceful about looking out the window and seeing the first snow falling, however, the strain of shoveling the driveway and front steps after the snowfall was no longer worth the pain. Life seemed to be becoming too physically draining to really enjoy it.  I knew I was ready for a change but wasn’t sure how to start over. Would a change mean robbing my kids of childhood memories? Was I being selfish by putting my health before my family?

The first winter in Arizona was sunny, warm and free of snow.  Despite the health improvements and ease of my new lifestyle, I was still missing the Christmas ritual and traditions that I grew up with. I decided that I had two choices: revel in the sadness of what I was “missing” or create new traditions to enjoy. I chose the latter.

Maybe this isn’t the case for you. Maybe you have lived in the same place your entire life, but are experiencing limitations due to your disability. Although you didn’t move, you may no longer feel that you can participate in the holiday season the way you used to.  Don’t let these limitations take the joy out of the season you once loved. If this rings true for you, here are some steps to help you embrace new traditions:

  1. Set new expectations – If your disability is affecting your ability to participate in events, try not to relive how you used to participate.  Instead, create new expectations for how to enjoy the same events. For example, if you used to stand up and lead the band, pass the baton. You can still enjoy the music if you sit and listen.
  2. Focus on the positive – It is easy to get down on yourself during this time of year remembering days before your disability. There is an old saying that I love, “Whether you think you can or you can’t, you are right!” Be positive, believe in yourself, and you will enjoy the holidays even if it is different than it used to be.
  3. Take advantage of new technology – If you can’t be there in person, take advantage of new technology to bring you as close as possible to friends and loved ones. Skype or Google+ Hangouts are a great way to participate in an event without physically being there.
  4. Keep your memories alive but update the tradition to fit into your current life – There are certain foods that take me right back to those old days at my Grandma’s house. Learning those recipes and recreating those dinners have been a way for me to remember the past while living in the present.
  5. Tell your story – People around you view you as a fighter for battling your illness. Use this time of togetherness as a way to share your story, allowing the people you are closest to a better understanding of who you are today.

Four years later, our new family traditions are every bit as meaningful as my childhood memories. We have made great friends in Arizona, and we get together to form our own lasting memories for our children. Whether it is taking the kids up to Santa’s Village in Flagstaff or watching a parade of boats decorated in Christmas lights at the lake, these new traditions are every bit as meaningful as singing in my Grandma’s front yard, minus the frostbite.

In many ways, these new traditions make the holidays more meaningful to me. I have experienced a lot of loss with my MS. With that loss, I realize how precious each moment in life can be and have begun to live in the moment and enjoy it. Embracing these new traditions has taught me that this season is still the most wonderful time of the year despite having MS.

Happy Holidays everyone!

Please note, MSAA offices will be closed December 25th through December 30th.  We apologize for any inconvenience this may cause, and will respond to all comments and inquiries upon our return.    

*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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MS Education – A 2014 Resolution

By Matt Cavallo

I have been living with Multiple Sclerosis for eight years now. I have not had a major relapse since 2010. Today, I am living the life that I always wanted despite having MS. I am able to work fulltime, have a loving home life with my wife and kids and participate in activities like coaching my son’s baseball team. One of the reasons that I believe I am doing well battling this disease is because I am always seeking to increase my education and understanding of the disease.

Understanding Multiple Sclerosis and all the available options for chronic illness management is paramount to being successful despite having MS. Now, more than ever, the landscape of available options is changing due to advances in medicine and tireless research. Educating yourself on the MS pipeline will make you better equipped to continue your fight.

So, where should you go for resources? Your first and best resource is your neurologist. Each MS patient is different and your neurologist knows your story better than anyone else. I see a neurologist who specializes in Multiple Sclerosis and stays up to date on all the latest MS breakthroughs and research studies.

Second, get involved in community events. Patient education events are held all over the country and have excellent information for patients. For example, the MSAA has a calendar of community events. Other organizations like the National MS Society or pharmaceutical companies also hold similar patient educational events.

Third, seek out evidence-based printed material. The Internet can be a great source of information, but how do you know that what you are reading is coming from a credible source? I frequent support groups on Facebook, Twitter and other online outlets, but how do you know that the information that you are receiving in those groups is valid? Sadly, there is a lot of misinformation on the Internet and social media sites.  Listening to advice from unreliable or irresponsible sources can actually be detrimental to your health.  My favorite online reference for MS is Healthline.com, What do you want to know about Multiple Sclerosis?This is a one stop shop to get high level information on the cause, types and treatments for MS.

Another publication that I love is The Motivator. The Motivator is published twice a year by the MSAA and covers vital issues for people living with MS. You can have the print version of The Motivator mailed to you or read it online.

Staying educated about Multiple Sclerosis will put you in a position to live well despite your condition. Taking advantage of the resources available to you will ensure that you are up-to-date with the latest, most accurate information.  Establishing an open, honest and trusting relationship with your neurologist is vital to your overall health.  They should be your go-to before making any health-related decisions. Patient events and literature can provide you with useful information as long as they are from credible sources.  If your resolution for 2014 is to take control of MS then it all starts with educating yourself on how to fight the disease.

Happy Holidays Everyone!

Resources

http://support.mymsaa.org/site/PageServer?pagename=Calendar_of_Events

http://www.healthline.com/health/multiple-sclerosis

http://mymsaa.org/publications/motivator/

*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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2010 – An MS Relapse for the Holidays Part Two – Recovery

By Matt Cavallo

As I sat in an infusion suite chair to treat my holiday relapse, I started to feel really sorry for myself.  I wasn’t sure what I had done to deserve this MS fate. I thought about my young boys and how unfair it was to them that their dad was having another relapse. I thought about the additional burden that this relapse was putting on my wife, having to care for two toddlers on her own.  All this was happening during the holidays, just two months after I had gone through an anterior cervical fusion. To top it off, I was experiencing these uncontrollable emotional outbursts, or PBA as my neurologist called it, which were embarrassing me to the point of not wanting to go out in public.

Then my thoughts changed. I knew at that moment that instead of feeling bad for myself that I was going to have to reach deep down and pull myself together for my wife and kids. My wife is a stay-at- home mom and I am the sole provider, so I knew that if I didn’t get my act together, our quality of life as a family was going to go downhill and fast. I needed a plan.

Steps to Recovery

  1. Be honest – During this relapse, I had convinced myself that it was every factor besides MS. I let the symptoms go on for too long and they were affecting my home and work life. I was going to have to be honest with myself and others about what I was experiencing and that it was related to my MS.
  2. Reduce additional holiday stress – The holidays add stress to an already stressful life. If I had to go food shopping or present shopping, I would go at off hours like late at night to avoid the stress of a crowd. I made lists to prioritize my tasks and would check items off the list. For a list of more ways to reduce holiday stress, check out Angel’s Holiday Hustle Blog.
  3. Gain control – When my emotions began to get the best of me, I would take a break. MS emotional outbursts can come on at any time. A good way to manage emotional outbursts is to remove yourself from the situation, take deep breaths or find a distraction. My favorite distraction is to walk my dog.
  4. Do not take on too much – I have a habit of overdoing. During the 2010 holiday relapse, I learned to enjoy the simple things. Holidays are about spending time with family and friends;try to relax and enjoy that time without overdoing it.
  5. Talk to your doctor – I waited too long to see my doctor. If you are experiencing symptoms, you should contact your doctor as soon as possible.

As the calendar turned to December in 2010, I was feeling like the worst was over. The medicine had run its course. I was feeling back to my normal self. Gone were the emotional outbursts, weakness and fatigue. I was back to normal at work and home life now returned to the joy of watching my boys. I didn’t bother with the stress of trying to compete for deals on Black Friday or hanging Christmas lights from the rafters. Instead, I realized that the true meaning of the holidays was to be there in good spirits for the ones you love. As Thanksgiving 2013 approaches, I am thankful for everyone in my life and continue to enjoy simple stress-free holidays with the ones I love.

Happy Thanksgiving, everyone!!!

References:

http://blog.mymsaa.org/holiday-hustle-and-bustle-tips-for-people-living-with-multiple-sclerosis/

http://www.healthline.com/health-slideshow/pseudobulbar-affect-multiple-sclerosis

*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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