Celebrating My Birthday Despite MS

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By: Matt Cavallo 

This weekend we were celebrating my birthday. A birthday is generally a cause for celebration, but when you are living with multiple sclerosis, sometimes you don’t feel like celebrating. Especially if you live near Phoenix and high temperature on the day of your celebration was 111 degrees. I was feeling fatigued, overheated, and wanted to stay in bed all day. I was considering cancelling the dinner, but there was one party guest that had been waiting months for this night.

I had promised my son that we would go to Rustler’s Rooste, a famous Phoenix steakhouse, known for serving Rattlesnake. My oldest son is currently obsessed with snakes. A couple months back, he attended a birthday party that had an entertainer with exotic animals. At that party, he got to handle a snake and has wanted one ever since. I made the mistake of mentioning to him that a Phoenix steak house served Rattlesnake as an appetizer. He made me promise that I would take him for Rattlesnake. Even though I didn’t feel like going out, he needed me to live up to that promise.

As I laid in bed before I needed to get up and get ready to go to the steakhouse, I contemplated how MS had stopped me from going to other social events in the past. For a period of time, I had isolated myself from my friends and family because of how I felt. It got to the point where people stopped inviting me to events because they knew I wasn’t going to show. Now, here I was on the verge of letting MS fatigue and heat intolerance affect celebrating my own birthday and sacrifice the promise I made to my son.

As the clock ticked closer to our reservations, my fatigue and heat intolerance were not letting up. Neither was my son’s talk of finally getting to live his dream of eating Rattlesnake. I had a decision to make: was I going to let MS win and stay home, or was I going to fulfill my promise to my son?

Despite the MS fatigue and heat, I rose to the occasion. I took an ice cold shower, and we went over to the steakhouse. The boys had a great time, and so did I. I was happy that I had forced myself to go. Cooling myself down helped me handle the heat. More importantly, I didn’t let my MS keep me from making memories with my boys. The biggest surprise was that my boys liked eating the Rattlesnake. My oldest said it tasted liked fried chicken!

*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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Just Do It, pushing past the fear

In my attempt to become more physically active this year and try something new, I found myself curious to adventure out into the “exercise class” realm of the fitness world. Historically, I have always been a very strong person, weight lifting and cardio training on a machine has always come fairly easy. I can maneuver through a gym and get my routine done pretty easily. But needless to say, I am not the most coordinated person, I could never visualize myself taking a class where following a routine was required.

For the longest time I have wanted to try a Zumba class, but the fear of other’s judgment has held me back. In my strive to be perfect, it was hard for me to imagine not being good at something. I could just imagine myself surrounded by a group of women who can seamlessly follow the direction of the instructor and dance their hearts out for an hour. Not to mention, the room is encased in mirrors, adding to my fear of seeing myself look ridiculous.

Last week I made the call to a local fitness studio to inquire about their classes, I spoke with the owner and told her how I had wanted to join for a while now, but hadn’t come around to it. Her immediate response was “what’s taken you so long, get your butt in here”! It didn’t take long to persuade me, and the next day there I was.

I have to admit, I did think about chickening out at least a dozen times, but I pushed myself to move past my fear and go to the class. It is easier said than done, but we should not allow ourselves to miss out on life’s great opportunities because of fear, especially fear around the perceived thoughts of others. My fear of not being perfect and that everyone in the class would laugh at me almost prevented me from enjoying myself.

Although the class was hard and I was behind on almost every step, I wasn’t the only person. Looking around, the majority of the women were not the Britney Spears backup dancers I had imagined. We were all there for the sole purpose, to dance, have fun, and burn some calories.

The moral of this story is, we all have things we are afraid of but every once in a while we have to push past the fear to give things a chance. Maybe it works out, maybe it doesn’t but at least we would know for a fact instead of imagining a scenario in our heads.

Is there anything that you have wanted to do, or try, or ask, but have been held back because of fear? How do you plan to move past it?

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I Got a FitBit to Get a Bit Fit

By: Jeri Burtchell

Like that commercial for cassette tapes from the 70s wondered, “is it live or is it Memorex?” I’m becoming unsure of what symptoms are due to my MS, and which ones I would have had anyhow. Now that I’m a quinquagenarian (who knew people in their fifties had a name?), I’m realizing not everything can be blamed on MS.

There’s new research that shows exercise can help MS fatigue which to me seems counter-intuitive. If I can’t even stay awake in the afternoon, how am I expected to exercise?

Inspired by friends who are losing weight and exercising, I have decided to become more fit. My goal was simple: I just want to get up in the morning and not hobble about like a wooden marionette. Maybe stretching and walking would be good for me.

It turns out that I’m one of those people who needs to measure progress and see rewards. I needed a tracker. While researching the various gadgets I happened on FitBit and I fell in love with the Flex. It’s a wristband that tracks steps, miles, calories burned, and even tracks your sleep. It seemed like the perfect solution.

If you are in your fifties and have MS and decide to buy one of these, do NOT leave the default settings in place. The daily step count goal is 10,000 steps. If you’ve never paid attention to how many steps you take in an average day, you’d be surprised, but you might also already know that 10K steps is pushing it for a 50something, otherwise inert person.

The package came on a Saturday so I gathered the kids and we headed off to nearby Ravine Gardens State Park where the azaleas were in full bloom. Criss-crossed with trails for the physically fit, the park is circled by a paved road so you can also enjoy it from the comfort of your Honda. In retrospect, that’s probably where I should have been.

The energy and excitement the kids were feeling was contagious. I was excited to start getting fit by becoming more active and I planned to do it by walking. I knew I couldn’t keep up with their pace however, so I let the kids go on ahead planning to meet back in the parking lot.

This ravine was not new to me. Thirty years earlier I had walked it often when my oldest son was small. I remember pushing a stroller and casually communing with nature. So the sign at the park entrance that clearly stated the drive measured 1.8 miles had to be wrong… or maybe 1.8 miles was nothing, since my FitBit also said I should be able to walk 5 miles in a day.

I started out strong, pacing myself and walking confidently, breathing in the fresh air and appreciating the sun-dappled flowers.

But before long I found myself wilting, and searching out the nearest bench to rest on. That’s okay, I thought to myself, there’s no hurry. I can rest as often as I like.

Soon, however, I was about halfway around the circumference of the park when panic set in. I really didn’t think I could make it out of the park. I dialed my son’s cell phone to let him know maybe he should send one of the many park employees for me, riding one of those golf carts.

His number went straight to voicemail and my texts went unanswered. As usual, he’d forgotten to charge it.

Sitting on a bench I weighed my options. Walk until I fell on my face, stay on the bench until someone came looking for me, or take my time and make slow progress, sitting often on benches along the way.

I opted for the latter. My fun excursion into the world of the fit became a fight to make it to the next bench where I could collapse and wait until my poor legs felt they could try again.

A good two hours after our trip to the park began I finally straggled into the parking lot where both kids ran up to see if I was okay.

That was four weeks ago and since then I have learned a lot. I have learned that while I’m not a teenager any more, I can walk a mile working out to exercise videos. That way, if I get exhausted I’m already home. I’ve also learned I need to listen to my MS.

I may have overdone it that first day in the park, but I haven’t given up. In the month since I started, I have lost almost five pounds, I no longer need to nap, and I have more strength. There’s no denying that my FitBit is helping me to get fit — one little bit at a time.

References:
http://contributors.healthline.com/mind/listen-your-body-msers

*Jeri Burtchell was diagnosed with multiple sclerosis in 1999. She has spoken from a patient perspective at conferences around the country, addressing social media and the role it plays in designing clinical trials. Jeri is a MS blogger, patient activist, and freelance writer for the MS News Beat of Healthline.com. She lives in northeast Florida with her youngest son and elderly mother. When not writing or speaking, she enjoys crafting and photography.

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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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Multiple Sclerosis Awareness (when you might not want people to be aware)…

Diagnosis Awareness Blog Post Image

March is MS Awareness Month. As an advocacy group, you will hear MSAA discuss our available resources, and encourage you to get out and be active about raising awareness for MS and supporting programs which benefit individuals with MS. We will promote and support expanding knowledge and information about MS. With all of that going on, it might feel like you need to wave a flag shouting, “HERE I AM. I HAVE MS!!!”

As the Manager of Client Services at MSAA, I wanted to acknowledge that there are times when you (or your friend or family member) may not want others to know about a diagnosis. While you may want to be an advocate to spread awareness and information to help people understand about MS, you may not want certain people (i.e. an employer, a new boyfriend, or a casual acquaintance) to know you or a loved one has MS.

There is nothing secretive about a diagnosis, but it is your (or your loved one’s) own personal health information. While some people might share that they had a heart attack or stroke with anyone they meet, others might feel medical information is no one else’s business and only talk about it with a doctor or close family member.

So, if you want to be an advocate but not shout a diagnosis from the rooftops, what can you do?

Infographic for blog

On social media sites:

Think before you post. Are you comfortable with everyone seeing your update or picture? If not, make sure to check your privacy settings before sharing personal (health-related) information so that only people you want to learn about your private information, such as close family or friends, can see your updates and pictures.

In person:

If you want to talk about MS in the community, know that not everyone who spreads information and encourages activity for a cause will be personally affected by it. If you don’t feel comfortable sharing your diagnosis, make it general: “ I’m helping out with a cause… Can you help too?” or: “There is a charity I support, and I wanted you to know about them and what they do” are generic ways to introduce information about “your cause,” even if you don’t want anyone to know it is personal.

In many of these situations, there may be a future point in time where you might want to share a diagnosis. On the job, you may decide to ask for a reasonable accommodation and share a diagnosis when needed. When your boyfriend goes from being casual to serious, you might feel comfortable disclosing. Likewise, if a casual acquaintance becomes a good friend, you may want to share. If not, there is no pressure. You can still be an advocate for MS without disclosing a diagnosis.

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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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Comprehensive MS Research Update Now Available from MSAA

MS Research Update

The 2014 edition of MSAA’s MS Research Update is a comprehensive overview of the latest research findings on the FDA-approved disease-modifying therapies, as well as many e,perimental treatments. This update features ground-breaking studies not only with medications, but also in areas such as stem-cell research, therapies for myelin repair and protection, biomarkers, genetic studies, and more.

In addition to the e,citing research aimed at relapsing forms of MS, a number of studies are also looking into the treatment of progressive forms of MS. To assist individuals interested in learning more, studies involving progressive MS have been highlighted.

Read MSAA’s latest MS Research Update here.

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Wait a second, did you get that?

Closeup portrait of cute young business woman

Being able to effectively communicate with others is one of the most basic human needs and functions. Babies and young children cry or throw tantrums when they don’t get what they want or need because they haven’t discovered any better ways to express their concerns or desires. They need to be heard, but they can’t express their concerns directly so they resort to raw emotion and yelling to get their needs met.

As we grow older, we are taught that there is a time and place for everything and that generally when speaking in public (school, work, etc.), you need to do your best to control your emotions and try to calmly verbally address your needs or concerns. For example, in a business meeting while you might feel like rolling your eyes at an inane comment, or may even feel like yelling when your point hasn’t been heard or addressed after asking for the 100th time, responding in either of those ways in a work setting is likely to get you a reprimand at best and unlikely to get you what you really wanted (for example a shorter meeting with highlighted objectives, or a specific problem or concern to be addressed).

These communication issues don’t only happen in the workplace setting as you might have times where you feel like your doctor is just not hearing what you are saying or a relative is being insensitive or un-relatable. When you end up in these frustrating situations, you might have the impulse to cry or yell, and sometimes that might supersede your public decorum, but these also may be good times to evaluate your situation and how you could better try to communicate your need.

So how do you take a step back when you need to make sure something is heard?

You may need to take five minutes before speaking to give yourself time to process a more tactful response. You might pretend you are re-explaining the situation to a totally
Older male doctor with laptop talking to middle-age male patientdifferent person. You may also ask the other person to repeat back to you your concern in their own words, so you can make sure they “got it.”

Feeling misunderstood or like no one is listening can heighten your anxiety, stress, and frustration around a situation. Others can contribute to misunderstandings and miscommunications if they are not being active listeners and receptive participants in the conversation, but try to do your part. Try and emote effective communication. If the other party really is not listening, or you can’t overcome personal barriers, you can try to remediate the situation by going to others with your concerns (in the worst case scenario finding a new doctor or changing jobs…. although I’m told you can’t get a new family).

Can you share your tips for how to communicate better in difficult situations?

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MS & Management of Cognitive Symptoms

Have you struggled with memory loss? Is it challenging to concentrate on certain tasks? You’re certainly not alone.  It’s not unusual for individuals with multiple sclerosis to struggle with a variety of cognitive issues.  Although severe cognitive impairment only affects a small percentage of MS patients, 66% of respondents in the MS in America survey noted experiencing cognitive dysfunction.  Additionally, 49% of participants identified cognitive dysfunction as a symptom they experienced frequently (n=3,135).

frequentsymptoms

Among individuals experiencing frequent cognitive symptoms, more than 80% struggled with memory loss, concentration/attention span, information processing, and verbal fluency:

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We recently asked our Facebook community to share their techniques for managing frustrating cognitive symptoms.   Here are some of the top tips:

    • Keep lots of lists that you can take with you, either on paper (post-its, etc) or on your phone
    • Use a calendar (paper or electronic) and update it on a regular schedule to keep track of important dates/events
    • Utilize alarms for reminders – even for simple things that you might forget
    • Avoid procrastination since you’re more likely to forget
    • Keep important things in the same place so you’ll always know where to find them
    • Label storage areas (drawers, boxes, bins, folders) so it’s easier to find things
    • Stay mentally active by learning new things, picking up hobbies, meditating, or completing crossword puzzles
    • Visualize the topic you’re talking about, it may help your mind stay focused
    • Use written communication
    • Be honest and ask for help from others, including your doctors

Don’t forget – recent research has suggested that aerobic exercise and cognitive leisure activities can also help improve memory and protect against cognitive decline.

Do you experience cognitive symptoms? How do you manage them?

The MS in America Study was conducted over the Internet from November 2012 until January 2013. The primary goal of the study was to establish an understanding of the current state and trends of patients affected by Multiple Sclerosis. The survey included over 100 questions on a broad range of topics. A total of 3,437 people started the survey while 2,562 people completed the survey resulting in a high completion rate of 74.5%. To qualify for the survey, participants had to be MS patients over 18 years old and a US resident or US citizen living abroad.

The study was solely developed and funded by Health Union, LLC which does not manufacture, sell nor market any product to diagnose, prevent or treat MS or any other disease.

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An Early Look at the Year in Review

2013The year 2013 has been a substantial one in the world of MS. As each year passes, more and more developments and improvements are made to the ever-changing MS landscape, and it looks like we can add 2013 to that picture. The year saw the approval of a new MS treatment, the initiation of health insurance changes and availability, and increased information pertaining to upcoming trials and experimental medications for treating the disease.
2013 in review

As changes occur within the MS community, the MSAA continues to play a role in providing updated information and educational resources portraying these changes. Through educational webinars, shared-management and informational programs, the MSAA was able to provide support to those in the MS environment in learning of these developments. And as changes continue to unfold in the future, MSAA will continue to increase awareness of these developments within the MS community.

 

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