Breaking the Chain of Toxic Relationships with MS

By: Matt Cavallo 

I come from a large, close-knit Italian family that lives in a small town about eighteen miles south of Boston. When I was first being diagnosed with MS, my little brother was on a downward spiral into the world of drug addiction. He is only eighteen months younger than me and as a result we have a lot of common friends. During this time, my friends were telling me about his erratic behavior that was putting himself and others in danger. I decided, as the big brother, that I needed to talk to my parents about his condition and as a family we needed to intervene.

The reaction I got from my family was unpredictable. My entire family turned on me. My mom and dad told family, friends, as well as, people at church and at the country club what a horrible person I was. They were spreading lies about me which was turning people in the community against me. My mother eventually wrote a letter to me disowning me from the family.

My family’s public smear campaign deeply impacted me. The stress of being disowned was exacerbating my MS symptoms. In a small town, gossip travels fast. I was uncomfortable going to public places in my hometown because of the stares and judgment that I felt when I ran into former family friends. The problem still remained that my brother’s addiction was progressing and no one was doing anything to stop it. Rather, they were doing everything to enable it.

As my family relationships deteriorated, the tolls on my health were evident. Even though I loved my family enough to tell the truth about my brother, it was apparent that my decision to do so cost me most of my life-long relationships that I had in my hometown. The only way I was going to be able to stop the stress that was killing me was to eliminate these toxic relationships. I had to come to terms with the fact that I had done all that I could do and that their reaction wasn’t about me, rather it was their denial about my brother.

With my family bonds destroyed, so were my ties to my hometown. Jocelyn and I decided to move back to Arizona, where we met during our college years. About that time, my brother’s drug problem had boiled to the surface. He was now an intravenous drug user entering rehab. It was at this time that my mother realized what she had done.

Right before we left for Arizona, she came and apologized. After that, my dad came and apologized, as well. They both claimed that they didn’t know how bad it had gotten with my brother and that they were in denial. They said that they didn’t mean to destroy their relationship with me and pleaded for me to let them back into their lives. I forgave them and let them back into my life and let them establish a relationship with our children.

The broken chains of our family would not be fixed overnight. My brother’s heroin addiction has now taken an emotional and financial toll on my parents. My brother also contracted Hepatitis from sharing dirty needles. During one of his rehab stints in Arizona, he apologized to me for everything that the family did to me in order to protect him. He was broken hearted that I had been cast aside for trying to stop him from destroying his life. He said that I was the only one who ever tried to help him before it was too late.

Working on these toxic relationships has reduced my overall stress level and has been beneficial to my health. While it was hard to cut the ties, the decision to do so has put me in a better place overall. In my case the old adage was true. I loved them so I let them go and the ones who truly loved me returned. The ones who didn’t are no longer a part of my life. As a result, my life is happier, healthier with a greater sense of self-worth than when I was fostering those toxic relationships.

This was adapted from a passage in my second book, 7 Steps to Living Well with a Chronic Illness. It is accompanied by a Toxic Relationship Exercise and strategies for how to reevaluate toxic relationships in your life. If you are interested in my brother’s story you can learn more on my blog.

*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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2016 – A Work-in-Progress

By: Matt Cavallo

Last year at this time I wrote about how small changes can make a big difference in the New Year. Some of the advice from that post included: developing a financial plan, changing eating habits, exercising, getting back on your schedule and setting attainable goals. I used this advice to make major changes in my life which led to a year of self-renewal. This doesn’t mean that I achieved all of my goals. Rather, I found that at the start of 2016, I am still a work in progress. Let me explain.

Exercising was one small change in 2015 that led to a big difference in how I felt. Let me first state that I am no workout warrior and have spent a lifetime of avoiding working out, but I knew that it would make me feel better so I took the leap. I started going to the gym three days a week. Not only that, but I was riding my bike back in forth to the gym to get in 10 miles of cardio each day. I started to see real results in about three months. Then, during a routine work out I felt that I tweaked my neck a little bit. Because of my past multiple sclerosis episodes and ensuing cervical fusion, I wasn’t about to risk further injury. So, I called my neurologist who scheduled an MRI and referred me to physical therapy. My goal for 2016 now include starting physical therapy to strengthen my neck so I can return to the gym and resume my previous work out plan.

Developing a financial plan, setting attainable goals and sticking to a schedule were also critical to my 2015 success. My wife and I set a goal of being able to quit my day job and pursue my writing, speaking and clinical education full time by 2016. In order to do this we needed to get our finances in order and create a schedule that allowed me to build my business while still completing my full-time commitments. This required a lot of work and sacrifices. However, careful planning allowed me to make sure that I fulfilled all my commitments while remaining balanced with family life. In December of 2015, I was able to leave my full-time job and pursue to my business full time. We knew that starting a business while having multiple sclerosis and a family is a big risk but now I am living the life that I always wanted to and my multiple sclerosis is not getting in my way.

The one resolution for 2015 that I failed was controlling my eating habits. It is hard to eat right, especially with traveling for work and raising young boys. As I celebrated my last birthday this past summer, I realized that the pounds were not melting off the way that they had in the past. The holidays added some extra weight and as I am writing this I am ten pounds heavier than I was last year. Those extra ten pounds create fatigue and numbness for me and my multiple sclerosis. Now in the New Year, I have started eating salads for lunch each day and cutting back on refined carbohydrates. I am also riding my bike again. I realize now that the metabolism of my youth is not coming back and that my eating decision can affect my MS symptoms. In 2016, I am making a commitment to make change in my diet for my health and well being.

The thing about it is I have realized that I am in charge of all decisions I make in life. Some of the risks I have taken or the changes that I have made have been tough. The easy thing would have been to do nothing. With hard work and determination I took control of my life and you can do the same with yours. If you are reading this post maybe you want to make changes but don’t know how. The MSAA has great resources in all of these areas from financial planning and fitness to goal-setting and diet.

To start 2016, I am still a work in progress and that is OK. The first step in change is making the decision to do so. Once you have, you’ll be glad you did. From my family to yours, Happy New Year’s. Believe that you can be the change you want in 2016!

*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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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!
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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/

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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/

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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/

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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:

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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/

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Summer Planning and Travel Resources: An MSAA Blog Re-cap

As planning begins for summer vacations or trips, many are left searching or wondering what resources may be available to help with planning. MSAA guest bloggers Matt Cavallo and Jeri Burtchell have written over the years to provide some helpful tips for the travelling MS community.

In Air Travel Tips for the MS Community; Matt, a seasoned traveler, provides his Five Steps to Stress-Free Air Travel for People Living with MS. Matt writes, “Travel is stressful for everyone. Airports are big, busy and fast-paced. Security lines can be long and the thought of standing, unpacking, and repacking at TSA is enough to unravel even the most seasoned traveler”.

Often times the smaller details are those which are overlooked when planning a trip. Those small details such as the size of your carry-on, or the snacks packed in your bag can often make or break a trip. In Jeri’s Summer Travel Tips for Flying with MS Part 1 and Part 2, she identifies some of those smaller details that should be thought of ahead of time in order for smooth sailing….or flying in that matter.

We often learn through the experiences of others. Please share your flying or travel tips in the comments below.

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Worth Fighting For

By: Matt Cavallo

There was a touching moment at my last neurology appointment. You see, I have been with my same neurologist since moving to Arizona in 2009. Throughout the years, he has been by my side through good and bad times. This time was different. He seemed less like my neurologist and more like he was proud of me.

In 2010, I was suffering from severe spinal stenosis due to a bone fragment that had chipped from my C6 vertebra. I required emergency neck surgery or faced the risk of being quadriplegic. After surgery, I fell into a state of depression. Relapse after MS relapse building to a surgical climax, I just felt like my quality of life was never going to be what it was before having MS.

I was ready to give up on myself. Not only that, but I was ready to give up on my MS treatment, as well. And I did. I was required to stop my treatment prior to surgery. Post-surgery, I didn’t want to restart my treatment. I had had enough. I was sick of feeling like a science experiment or a pin cushion. It seemed like even though I was on a treatment that another debilitating relapse could strike at any moment.

One month passed post-surgery and I was feeling OK. A little tired, but OK. Then a second month passed with no treatment. Now, unbeknownst to me, I started to forget simple tasks around the home and office. A third month passed and I was dragging my left leg, had blurry vision in my right eye and couldn’t follow simple instructions. However, due to the brain fog I was in, I convinced myself that nothing was wrong.

That’s when my neurologist stepped in. I didn’t tell him anything, but you see I worked for a neuroscience clinic that was associated with his practice. One of the nurses called him and he made a special trip down to the neuroscience clinic to check on me at work one day. As a result of his visit, I found myself in an MRI followed by the news that my brain and spine were blossoming with active lesions. He ordered me a round of solu-medrol and a follow up with him the next week.

During that follow up, he wanted to know why I was acting the way I was. Why was I going against medical advice? I told him I was done fighting and that I had already been through too much. He spent the rest of the appointment helping me decide that I was worth fighting for. That my multiple sclerosis would have periods of relapse followed by periods of remission and that I needed to use the available tools to fight it with all I could. And I did.

Good Times: Last week, I walked into his office feeling like Norm on Cheers. I got to visit with old coworkers and acquaintances and catch up with old friends. Then, it was time for the appointment and this appointment felt a little different. He did his protocol tests and talked to me about lab results from a recent blood draw. Then he took the conversation in a different direction.

“Matt,” he said, “How are your travels? I worry some time that your life on the road is going to wear you down.”

“You know me,” I responded. “I want to use my story to go make a difference in the world.”

“When I think back to when I first saw you, to where you have come, despite the challenges.” He paused. “I’m just…I’m proud of you.”

Given where we have been and reflecting back on the past five years together, the good and the bad, I was speechless. This is a revered neurologist, that has been practicing MS in Phoenix since 1978 and he is proud of me.

At first, I was speechless then I responded, “Remember when you told me I was worth fighting for? Well, I believed you.”

I believe that all of you who are reading this are also worth fighting for. The question is, do you believe it too?

*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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Runaway MS Train

By: Matt Cavallo

I remember as if it were yesterday: January, 2007. I was sitting in my neurologist’s office after suffering my third relapse in eighteen months. At that moment, I felt that my MS was a runaway locomotive barreling down the tracks and I needed to somehow find the emergency brake.

My neurologist at the time was new to my case because my previous neurologist took a new position as a stroke specialist at a Boston hospital. I was in to see my new neurologist because I needed to switch medicines due to an allergy I had developed to interferon.

Prior to this visit, I had researched a breakthrough new treatment that had only been on the market for six months. This treatment had been voluntarily removed from the market due to unforeseen deaths during clinical trials and had just received FDA approval for a re-launch in the summer of 2006. Despite the risk associated with this treatment, it showed potential to be the emergency brake that I needed to stop the runaway MS train.

I took control of the conversation in my neurologist’s office right away, “Doctor, I have been reading online about the available options now that I can’t take interferon treatments. After comparing the two other options, I want to try Tysabri.”

There was a long, uncomfortable pause. Then he leaned forward and pushed his glasses up his nose towards his brow and said, “Matt, while I appreciate your research there is not enough published data on this new treatment. There were complications during clinical trials. I am not comfortable prescribing this treatment at this time. Not when there is a safe treatment option with a proven track record still available to you.”

I felt like I just took a gut punch and got my wind knocked out. I sat slumped for a minute in disbelief. He leaned back in his chair and continued, “I am going to write you a prescription.”

“Doctor,” I interrupted, “with all due respect, it is my body. I am in charge of what I put into it. This new treatment is showing great promise and I want to try it.”

“Well Matthew, I am not going to write you a script for it. You still have a platform option that may work equally well. Let’s start you on that.”

“Doctor, I am not going to start that treatment until I get a second opinion.”

Now, his demeanor changed. I could tell he wasn’t used to that kind of patient response. He recoiled, “Very well Matthew, if that is your decision I respect your wishes.”

With that, I left his office and after some more research, I found an MS specialist in Boston. I called her office and she said that she wanted to evaluate my case. I just needed a referral from my primary doctor to go and see her. So, I went to visit my primary care doctor and asked her for a referral.

“No,” snapped my primary doctor. “Our doctors, in our system on the South Shore are every bit as good as the ones in Boston.”

No? Why was everyone making this so hard on me? I didn’t understand what I had to do to get the treatment I wanted and was frustrated that everyone in the healthcare system was seemingly against me.

I called up the Boston MS Specialist again and broke the news that I couldn’t get a referral.

“Matt,” said the MS Specialist, “I am going to reach out to your primary doctor directly and ask for a one-time second opinion referral. Then, you are going to come in and see me and we will find you a new primary doctor that will refer you to me.”

This was eight years ago this month in February of 2007. That month, I started that new treatment and applied the emergency brake to my runaway MS train. This eight year anniversary also marked my decision to be my own healthcare advocate. It took a lot of courage to say no to the doctors, but in the end I felt like I took control of my own health. Today, I have great open relationships with my healthcare providers and we make decisions together as a team.

**Disclaimer**
The previous blog is the author’s real life experience and his personal treatment decision. This is not an advertisement for any particular treatment. What works for one person may not necessarily work for another person. Please consult with your doctor to decide as a team what treatment option works best for you.

*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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Hard Family Conversations and MS

By: Matt Cavallo

During my initial hospital stay and subsequent diagnosis of MS, one of the biggest challenges that I faced was talking to my family. We had a history of multiple sclerosis in my family. My dad’s sister, Loretta, was diagnosed with MS in the 70’s and she passed away in 1981 due to complications of the disease. During that time, there was little in the way of treatment available to help her. Not only that, but the disease progressed very quickly. She passed when I was only four, but I still can remember her. She was in a wheelchair and she couldn’t talk, she could only mumble and moan.

While I was laying in my hospital bed contemplating my diagnosis, I was thinking that I shared the same fate as my Aunt Loretta. The whispers around my bed from my family members supported my fears. As a result of these fears, the conversations changed. Family members started treating me differently. They were walking on eggshells around me, careful not to divulge any of their true fears of my future. Even with treatment, as my functionality returned, everyone held their breath for MS to strike again.

Six months later I had another drastic exacerbation. Then, twelve months after that another one. It seemed like I was following Aunt Loretta down a perilous track. And my family treated me that way. It was to the point where I didn’t want to have conversations with them because I wanted them to remember the person I was and not the person I had become with MS.

However, there were a couple of things I had going for me that my aunt didn’t have. One was timing. In 2005 there was a lot more knowledge about the disease and many more treatment options available than when she had it in the 70s. The second thing was history. I knew my Aunt Loretta’s story and I didn’t want mine to end the same way. Family members told me that she didn’t like the advice she received from a doctor, so she never went back to that doctor. I used that information to motivate myself to learn as much as I could no matter if the news was good or bad, scary or hopeful. I just wanted to get the most objective, up-to-date information available to fight. Lastly, I had hope. In the seventies there was little known about the disease. Today, there is research and scientific breakthroughs, social support networks, and hope.

If I could go back in time with all I know today about living with multiple sclerosis, the fear and egg-shell conversations with my family would be dramatically different. I would use the resources around me, like My MS Journey, to educate myself and ease my family’s fears instead of staying silent.

Today my family conversations are no longer about the horrors of MS. My family and I now talk about my future and my kids and all of the awesome stuff that normal people talk to their family about. Today we are a normal family and I just happen to carry the torch of multiple sclerosis. I have had it for approaching ten years now and I am still working, playing, being a dad and living the life I always wanted to live. That makes me proud to talk about my MS journey and how I have lived a great life despite my diagnosis.

Resource:
http://mymsaa.org/journey/

*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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