Sticking to My Resolution for Better Health and MS Symptom Management

Posted on January 13, 2014 by MSAA

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

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.
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.
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.
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.
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/

Embracing New Traditions When You Have MS

Posted on December 23, 2013 by MSAA

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:

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.
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.
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.
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.
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.

MS Education – A 2014 Resolution

Posted on December 9, 2013 by MSAA

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

https://mymsaa.org/publications/motivator/

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

Posted on November 15, 2013 by MSAA

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

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.
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.
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.
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.
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:

https://msaablog.wpengine.com/holiday-hustle-and-bustle-tips-for-people-living-with-multiple-sclerosis/

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

2010 – An MS Relapse for the Holidays Part One – Relapse

Posted on November 13, 2013 by MSAA

By Matt Cavallo

In November of 2010, I was still recovering from neck surgery. My neck had been a problem since 2005, when Transverse Myelitis made my spine swell up. The swelling pushed my vertebrae and discs out of alignment. Eventually, just the stress of daily activities caused a piece of vertebrae to fracture causing severe stenosis of the spine. My neurologist told me that if I didn’t consider surgery that there was a pretty good chance that I might become quadriplegic.

I worked for a Neuroscience clinic at the time and was friends with the neurologists at the clinic. I had them each independently look at my MRI films. All of them agreed with my neurologist- surgery was inevitable. I had my cervical spinal fusion surgery in early September of 2010. In order to prepare for the surgery, I had to stop taking my MS medicine. I was also instructed to stay off my medication after the surgery while my body was recovering. During my recovery period, I became less concerned with getting back on my medication and continuing treatment. I had hit my breaking point, and I just didn’t feel like fighting anymore.

As the calendar approached Thanksgiving, I started to become symptomatic. I hadn’t been on any MS treatment for ninety days and was noticing increased fatigue and weakness. At the time, I attributed my symptoms to working fulltime while enrolled in a Master’s program along with raising two boys, ages three and one, who weren’t exactly allowing for a full night’s sleep.

While the weakness and fatigue were troubling, I also started experiencing uncontrollable mood swings. I would break into hysterical laughter at inappropriate times and then break down and start crying and become inconsolable. I am not a person who typically shows intense emotion, so these kinds of outbursts were completely out of character for me.

Still, I didn’t think that anything was seriously wrong with me. I thought that the lack of sleep with a teething one-year old coupled with my ongoing recovery from spinal cord surgery was why my emotions wer running rampant. Then I started forgetting tasks at work that I typically would complete automatically. I was also dragging my leg and having problems with vision in my right eye.

During the week of Thanksgiving, the clinic was slow. The nurses had become worried about me. The day before Thanksgiving, we had very few patients and my practice manager called my neurologist and got me an order for an MRI. I was resistant. I attributed my symptoms to the stress that I was experiencing at work and at home, saying that having to prepare Thanksgiving dinner tomorrow was the cherry on top of the cake. Still, she persisted and took me over to radiology at the hospital and got me a follow up appointment with my neurologist the following Monday.

My MRI studies came back with my lesions glowing like lights on a Christmas tree. I was defeated. When was MS going to let up? Now, I had to tell my wife on the day before Thanksgiving that I was having yet another relapse. However, when I talked to her about it, instead of crying, I started to laugh uncontrollably. During Thanksgiving dinner with her family, I was having emotional outbursts and crying about how beautiful the Turkey and potatoes looked. After dinner, Jocelyn talked to me and she wanted me to talk to my neurologist about my emotions, along with my other symptoms.

That following Monday, I found myself in the familiar chair of my neurologist’s office. He confirmed that I was having a relapse. He prescribed three days’ IV Solu-medrol to help with the exacerbation. I told the doctor that I was having these weird emotional outbursts and was concerned that the IV steroids would further complicate my already emotionally unstable state.

He told me that it sounded like I was having something called Pseudobulbar affect or PBA. According to a Healthline article, “Pseudobulbar affect (PBA) is a condition in which you suddenly start to laugh or cry. The reaction isn’t triggered by anything—like a funny joke or sad movie. You just burst into laughter or tears without any real cause, and you can’t stop laughing or crying.” He wanted to stay on course with the treatment because the PBA seemed to be related to my MS relapse, but to call him if I started to feel out of control.

Tune in for my next blog to find out how I was able to recover from my holiday relapse and strategies I used to gain control of my emotions and stress levels.

Reference:

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

Losing My Mind Part Two: Overcoming an MS Cognitive Relapse

Posted on October 16, 2013 by MSAA

By Matt Cavallo

In my last bog, I was in the throes of severe MS cognitive relapse. My short term memory was shot. My word association was gone. Everyday situations confused me. I was a danger to myself and those around me and yet I couldn’t comprehend that something was wrong with me. It took an intervention by my wife, Jocelyn, to get me to schedule a neurologist appointment.

The neurologist immediately sent me for MRI studies. Fitting for the holiday season, the contrast dye administered during the studies lit up the active brain lesions on my films like a Christmas tree. It was recommended that I started a course of treatment immediately.

I found myself isolated in an infusion clinic, depressed that MS had caught up to me again. I was scared. This relapse had affected my ability to work. I had missed time with my mobility and vision relapses, so I was afraid that this would be the final straw at my company. I couldn’t afford to lose my job, not around the holidays. Not because of MS. I also needed to get my mind back. In order to do so, I needed a plan. Here is what I did:

Get a doctor’s note: I had my neurologist write a letter to my boss explaining my limitations. I also had the doctor talk with my wife to help convey my situation.
Meet with your boss: I dropped the letter off at the office and had an honest conversation with him about my relapse.
Create task lists: I got a notebook and listed the things I needed to do each day. I would cross things off the lists as I accomplished them.
Leave sticky notes: I put sticky notes around the house that said “TURN OFF”, “CLOSE ME” or “FLUSH”.
Keep your mind active: I found that reading, writing, crossword puzzles, Sudoku’s or any kind of thinking activities helped with my word association, recollection and memory.

It was early January 2007 and I was two months past my cognitive relapse. Things were becoming crystal clear again in my mind. I was back at work and benefited from a slow holiday season. My boss made accommodations for me and kept me on light duty until I was able to perform all the tasks of my fulltime job. I had made some delicious holiday meals without burning down the house and was able to have an intelligible conversation.

Jocelyn comes home from work, smiles and says, “I’m pregnant!” She grabs me and hugs me in the joy of all we had to overcome to conceive. I knew then that I was going to have to work harder than ever because I never knew when MS was going to strike again. So I set goals for myself that I wanted to accomplish and set out to accomplish them, despite the cognitive issues.

I dusted off an incomplete first draft of my memoir and spent hour after hour writing the story of my MS. My wife and I worked on it together. The writing and the conversations I felt helped rebuild my cognition and my mind was coming back with each page I wrote. Finally, the goal of being published happened in June of 2012 on my seventh anniversary of my MS diagnosis.

During that same month, I graduated with my Master’s in Public Health Administration. I had returned back to school to better understand the health care system to help make a difference in the lives of patients like me. I graduated with a 3.98 GPA, which was the highest in the program.

To realize these goals despite the challenges I’ve experienced with MS is incredibly meaningful. I cannot control what MS does to me, but I can do the best I can with what I’ve got. With my Master’s degree and published memoir, I have accomplished things that I never intended on doing prior to MS. Whatever your goals are if you set your mind to it you will be surprised at the results. If I can do it, you can too!

Losing My Mind, Part One: Experiencing an MS Cognitive Relapse

Posted on October 9, 2013 by MSAA

By Matt Cavallo

Back in October of 2006, I was feeling like I had MS beat. My mobility was seemingly back to normal after losing function the previous year due to an acute onset of Transverse Myelitis. It had also been eight months since a bout of Optic Neuritis had claimed the vision in my right eye. Since then, all symptoms had resolved and I was living a normal, symptom free life. Little did I know that I was about to be thrown into the depths of my scariest relapse, losing my mind.

As the calendar approached the holiday season, I started forgetting things. It was simple things at first, like leaving my keys, wallet and phone on the counter as I walked out of the house for work and locking the front door behind me. While everyone shares these experiences, mine were scary because of the lack of cognitive association. I would look at my keys, wallet and phone on the counter, but couldn’t draw the association in my mind that I needed those things to get to work.

On several occasions, I knocked on my neighbor’s door to use their phone to call Jocelyn at work so she could come home and unlock the door for me. Luckily she worked only a mile away, so she was always able to save me. Even though she was having to save me from situations like this more and more often, I didn’t think I was having a problem.

Next my word association started to fail. I would say things like, “Jocelyn did you put the laundry in the dishwasher?” I would look at a common item like a refrigerator and was unable to call it by name. Instead I would say things like, “you know that thing that keeps food cold.” I was also repeating myself over and over. I remember going out to dinner with another couple and asked ten times in ten minutes whether my friend, John, had heard that our mutual friend, Marc, had his baby. My friend John was getting visibly irritated with me, but I was unaware that I had just repeated myself ten times. Jocelyn spoke up to say that I was having one of my MS episodes.

Still, I didn’t think anything was wrong. I didn’t realize that my work was suffering. I was missing deadlines and turning in incoherent reports. My friends and family were concerned because I couldn’t have a regular conversation. It was like I was there in the room with them, but my mind was locked inside my head and my thoughts couldn’t come out.

Then my cognition started to become dangerous. I love to cook, but I was starting meals and forgetting that I left the oven or stove on. There was one time when I was boiling chicken to make soup, left the house and came back later to have the entire house filled with smoke and the smoke alarm blaring. It was this time when Jocelyn confronted me by saying that I needed help before I hurt myself or others.

This hit me hard. Up until this point, MS had affected me physically but I wasn’t ready to cope with a cognitive loss. I also was not able to comprehend the magnitude of what this relapse was doing to my work and personal relationships or how my inability to process things was putting me in harm’s way. When my wife intervened and told me that I needed help, I didn’t want to believe her. I said that I felt fine and while I was a little forgetful, I was still in control of my faculties. She then pointed out that I almost burned the house down while making soup.

As Jocelyn told me about all my symptoms, I broke down. I realized that I was having another MS relapse, only this time I was losing my mind. If I didn’t see my neurologist, I was liable to lose my job, my friends and possibly hurt myself or others. This was a reality I didn’t want to face. This relapse was by far the scariest because I wasn’t fully aware that it was going on and there were no visual signs of disability. I agreed with Jocelyn and set an appointment for the next available time with the neurologist.

Tune in on October 16 for my next blog about how I was able to cope with and overcome this devastating cognitive relapse.

Preparing for the Change of Seasons

Posted on September 25, 2013 by MSAA

By Matt Cavallo

Many of us living with Multiple Sclerosis welcome the change of seasons. Gone are the dog days of summer and the pseudo-exacerbations (brief flare-up) associated with heat. While the heat is no longer a factor, the change of seasons can present other challenges to those of us living with MS. In a speech to the University of Lille (7 December 1854), Louis Pasteur said one of my favorite quotes, “Chance favors the prepared mind.” The following self-management techniques will help you prepare for the challenges that the change of season present for those of us living with MS:

Self-Management Tips for Change of Season Issues

1. Eating healthy: Fall and Winter are associated with a lot of festive eating. Halloween candy, Thanksgiving dinner and all the holiday parties, provide lots of yummy food and treats but also provide many opportunities for us to overeat. Some ways to keep your diet in check:

Eat three meals a day. Breakfast is the most important meal of the day. Skipping breakfast may lead to overeating later.
Eat smaller, more frequent meals to keep your energy up.
Avoid large portions and desserts that can increase fatigue.
Keep a food diary and write down everything you are eating to stay on track and keep you accountable for healthy choices.
Drink plenty of water. Dehydration can be confused with hunger.

2. Preventing falls: Rain and snow in fall and winter can lead to an increased risk of falls.

Safeguard your entrance and exits with mats to absorb moisture.
Wear appropriate shoes with proper treads to provide more grip on slippery floors and sidewalks.
Stock up on the supplies you need to weather any storm that hits, so that you don’t have to run out during a storm.

3. Exercise: Cooler months can mean less opportunities for outdoor activities, leaving some less active.

Find ways to fit in exercise despite the weather.
Work out indoors at a local gym or in your own living room with exercise DVDs.
Many local gyms, like the YMCA, have indoor pools. Aquatic exercise is good for those with limited mobility.
You can also use swimming to raise awareness for MS through the MSAA’s Swim for MS program.
Mall walking is a good way to get in exercise on a rainy day.
The key is to keep moving!

4. Managing stress: Fall and winter months can increase stress from increased holiday parties, financial expenses and family obligations.

Don’t overextend yourself.
Set a realistic plan for what you can commit to and stick to it.
Take time for yourself to relax and decompress.
Exercise and eating healthy will play a vital role in helping to keep your stress levels at a minimum.

Each season can bring a unique set of challenges for persons with disabilities, but preparation and knowledge of self-management skills will help you anticipate and overcome those challenges to enjoy the best of what the season has to offer.

Parenting with MS

Posted on September 6, 2013 by MSAA

By Matt Cavallo

Watching my oldest son, Mason, turn and walk into Kindergarten for the first time sent a flurry of emotions through my soul. I was feeling both proud and incredibly sad knowing that my baby was now a schoolboy. The sadness came from deep inside remembering back to how hard it was for my wife to conceive due to issues I was having as a result of my Transverse Myelitis and MS.

The pride came from thinking back to a childhood friend. When I was in Kindergarten, I had a friend in my neighborhood named Conner. His mother had Multiple Sclerosis and she was confined to a wheelchair. Even now, I remember Conner’s strength and the sacrifices he made as a five year old to care for his mother.

When I was diagnosed with MS, my biggest fear was that I was not going to be able to be the dad I had always dreamt of being. Deep down, I didn’t want my child to have to care for me in the way that Conner had to care for his mom. Now, eight years after my initial diagnosis of Multiple Sclerosis, I proudly walked my Mason to his classroom, hand in hand.

As he let go of my hand and I watched him walk into a new chapter of life, I knew that his understanding of the world was going to grow each and every day. With his new understanding of the world, comes a new fear. How do I explain to him that his daddy is different from the other dads? How do I tell him that I have a neurodegenerative disease and that the big, strong guy he knows might not be that way forever?

As a young dad with a chronic disease, I have been looking for a way to talk to my boys in words they can understand. Especially for Mason who now has more questions than ever before. One of this resources that I have found in my search is, Daddy’s Story: An Introduction for Younger Children to Learn about a Parent’s MS. This is an illustration book for younger children that helps explain MS in words they can understand (don’t worry, moms – there is a Mommy’s Story too). With this resource, I am able to have a conversation with my boys and answer the questions that they have about my condition.

Knowing that there are resources to help me talk to my kids about my MS in a way that they can understand has helped to mitigate my fears and focus on the pride I have in raising two people who are loving and caring individuals.

Caregiver Recognition

Posted on August 12, 2013 by MSAA

By Matt Cavallo

I remember the feeling to this day. You know that sinking feeling in the pit of your stomach when something is happening that is outside your control. I was lying in my hospital bed, my wife and family surrounding me looking hopelessly as I drifted in and out of consciousness. The entire time I was thinking, “What did they do to deserve this?”

Everyone was handling the news differently. My dad told me that he met some people with MS that were hiking mountains and playing tennis. My mom was at church everyday holding community prayer to find a cure for her son. I even had a friend tell me that drinking Pedialite would regenerate spinal fluid after the spinal puncture somehow.

Then there was my wife, Jocelyn, standing steadfast by my side. Friends and family came and left the hospital, but she stayed each minute. As I looked at her, I believed that the hopes and dreams we had for raising kids and enjoying the family life were dashed at twenty eight years old. I was wondering if I was even capable of having children with the Transverse Myelitis rendering me without function from the waist down.

Eight years later, Jocelyn is still by my side. Through each MS exacerbation, treatment and therapy she has been there always. At times, her role as my caregiver has been a challenge. When I had my cervical fusion, she had to help me with things like bathing and getting dressed. She was providing my care while taking care of a two year old toddler and a newborn.

There will always be challenges for those who care for a person with a chronic illness. There are also resources that can help. Even though Jocelyn and I have achieved a pretty normal life despite living with MS, we are always looking for information to ensure this quality of life continues. A great resource for care givers is the Spring 2004 Motivator article, Caring. Caring provides helpful tips and resources such as safety, diet and stress for those caring for a person living with a chronic illness like Multiple Sclerosis.

Last week, my wife celebrated her birthday and each year I am more and more amazed with her. All my fears back in that hospital bed have disappeared because I know that she is there for me. We were able to accomplish all our hopes and dreams and today are living the family life we always wanted.

Happy birthday, Jocelyn! You are an amazing mother and caregiver. I don’t know where I’d be without you! Thank you so much for being there every day and providing the support and care I need to help me in my fight against MS.

At the MSAA, we would like to hear from you. Please take this time to comment and thank the person in your life that has been there for you on your journey.

Matt Cavallo

For more information about My Story, please visit me at:

http://mattcavallo.com/blog/

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