Getting Graphic When You Have Multiple Sclerosis

Young couple looking distressed or angry

Sometimes when you try to communicate with others, your point may be misconstrued, or something may be lost in translation, or you feel that no matter what you are saying the other person just doesn’t “get it.”

In my role here at MSAA, I have heard from many people who are frustrated or disappointed that someone close to them, be it a family member, a friend, or even a close co-worker (someone who they know cares about them), just doesn’t “get” MS. They may not understand the daily or even hourly ups and downs of MS, or the invisible or hidden symptoms you are trying your utmost to manage, or maybe it’s just an expectation that everything should be the same as before your diagnosis, when for you it feels like the whole world has shifted.

No one wants to feel that our friends, family, and supporters are clueless, unhelpful, or uncaring…after all you KNOW they care about you, and that’s why you include them and want them to be a part of your life, and that’s why it feels so wrong when you can’t express your needs or they don’t seem to “get” what it is you are dealing with, or struggling with, or needing.

When words aren’t enough, get graphic…and not in the style of an R-rated movie, but instead embracing that sometimes a photograph, picture, or artwork can help support what you are saying. Even a visualization can sometimes be helpful, for example, “Sarah, I know that you are trying to help, but when you say that it makes me feel like you’re asking me to put a bag with a smiley face on my head…can you picture that? ” If you picture it, a person with a smiley face bag is being asked to hide their true emotions, or even if they express those emotions they cannot be seen by others. Sarah may picture that bag the next time she wants you to turn your frown upside down and be more empathetic to your needs.

So, the next time you feel like words are just not enough: snap a photo of how you are feeling, draw a picture of your thoughts, or give a visual depiction of your concerns. You may find that a visual display is sometimes the bridge that is needed to help your support person really “get it.”

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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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Doing What Makes YOU Feel Good When You Have MS

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Multiple sclerosis in itself is a complicated and often unpredictable disease. We here at MSAA hear on a daily basis about some of the trials and tribulations that our clients with MS face. One of the most valuable lessons that I have learned in trying to understand the whirlwind of information provided about MS is to find something that is meaningful to you and to your unique situation. With all of the information available, finding something that will make YOU feel good is a priority.

Through social media, websites, and support groups, information is provided about a number of hints, tips, or things that one person may have done to alleviate their symptom, which is wonderful, but unfortunately may not work for everyone. Not every individual with MS will experience the same symptoms and even for those who may, those symptoms may appear incredibly differently.

The point behind the story and the reason for the title is that everyone has their own needs, and each person understands and knows their body better than anyone else. These experiences and feelings are unique to you and should be treated independently to others’ beliefs and thoughts. Focusing and developing ways that make YOU feel good may help to improve your overall day to day.

Explore yourself; perhaps through journaling you can identify some needs that could be met in order to make you feel good. Guided meditation is another way to explore your inner thoughts and feelings. Sitting in a quiet space with yourself and learning about your body and the way that it feels at any point throughout the day can help to center you and focus on what your body needs.

What can you do for yourself today that will make YOU feel good?

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Latest Issue of The Motivator Now Available for the MS Community

savas2The Motivator is MSAA’s award-winning magazine provided to the MS community and to our generous supporters. Distributed twice per year, this publication addresses the physical, emotional, and social issues that arise with MS, and provides information and support to many individuals affected by this disorder.

We’re pleased to announce that the Winter/Spring 2014 issue of The Motivator is now available to read!

savas

Cover Story:
The Emotional and Psychological Symptoms of MS
… The symptoms of depression, anxiety, and pseudobulbar affect (PBA) are described, along with effective treatment strategies. Important information is also given on how these symptoms affect roles and relationships, sexual function, and self-image.
Read the full story

Feature Story:
…Competitive “biosimilar” drugs may soon be considered for approval. Read about how these “highly similar” drugs may affect procedure, treatment, and cost.
Read the full story

AquaticCenter-Screen

Program Notes:
…Details on MSAA’s new Swim for MS online Aquatic Center are highlighted. This national program initiative supports the awareness, understanding, and availability of swimming and aquatic exercise as a positive wellness opportunity for the MS community.
Read the full story

Read the latest issue of The Motivator

 

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April Artist of the Month: Celebrating the Work of Artists Affected by Multiple Sclerosis

MSAA is very proud to present our 2014 Art Showcase - celebrating the work of artists affected by MS.

We have received many wonderful submissions from across the country and are delighted to share their work and their stories with you. Please visit our online gallery to view all of the new submissions.

April Artist of the Month:
Carolyn Bowlus – Los Osos, CA

 View of Puget Sound by Carolyn Bowlus

“I grew up in a family of amateur artists, so it seemed natural to try my hand in the art world. I dabbled in acrylics and watercolors with a few art classes along the way.

When I was diagnosed with MS in 2000, I had visual and migraine issues which now come and go. When I am in remission I go back to my art hobbies with great enthusiasm. It is something I have to look forward to during the “down” times.”
Read more

Be inspired – please send an online card featuring artwork by MS artist Carolyn Bowlus and spread awareness of MS and MSAA.

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My Journey with MS Injections and Others’ Perceptions

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Sometimes like this weekend, for example, things will get to me. I attended a wedding weekend in paradise, bikini-clad in the Florida Keys, spending time with really great people, many of whom I’m meeting for the first time. And moreover, they’re meeting me for the first time. I was the best man’s date; his younger brother was getting married. I love social environments and enjoy meeting new people, especially those close to the people I love.

I was diagnosed at 23 years old. Beginning then, I decided it was all I could do to keep my life and my health in control where I could. I value keeping up on my treatment, staying healthy, and taking the disease seriously. It puts me at ease knowing I am actively doing all I can, and I’m proud of that. After locking down the “controllable” details (regimenting injections, exercise, diet, keeping up with friends and relationships, living in a positive environment, and embracing happiness), I’m freed up then to make the best choices possible when confronted with “life.” In this way, I am generally relaxed and comfortable in my own skin, navigating situations with conscious control and attention. When I’m walking around with injection site spots at a beautiful beach resort, that’s a time it’s a little easier to forget to be sensitive to the topic.

I’ve been able to stay healthy without experiencing too many symptoms too often. So for an otherwise healthy 27 year-old girl, it’s the (we’ll call them) “little things” that I’ll forget about. And truthfully, to me it seems those things can affect everyone else before they affect me. I attribute it to fear of the unknown. “Anna, you are SO sunburned on the top of your leg and on your hips! How does that even happen? Or is that a bruise? Hey, is your man beating you!?” (Referring to the best man.) Bless his heart…

Living with MS and injection site reactions and red welts, those marks and bruises from the shots that slow down the disease, I’ll forget about them unless they hurt or become somehow more inflamed. My boyfriend is mostly used to them, but I know it makes him sad that they’re even there at all; it’s just another reminder of the MS. When people see bruises in weird places, they’ll assume the man you’re with is probably the one beating you… You notice those looks and darting eyes. We talk about it and how he feels, and sometimes if I do something clumsy or forgetful, he’ll think, “Is that the MS?” and then he’ll go, “Do I have MS?” (Referring to himself.) Adorable.

Bottom line is, I don’t worry about people feeling awkward when I tell them that I have MS, I’m not embarrassed, and I’ll talk about it to anyone who’s curious. Once the unknown becomes understood, nothing’s a big deal, and in some strange way, it can make the connection deeper and easier. The whole thing seems to make me a more compassionate and happier person. The reactions when I tell a concerned party not to worry, are something between a quizzical look and concern, so then I’ll go on, “I have MS.” And then the, “Oh I’m so sorry,” etc. I guess why it gets to me, really, is because I feel like some people are condescending, or something even more cavalier. I’m doing everything I can do to control what I can and be the healthiest I can be, but those red spots are a blessing, and I’ve grown to learn to see them that way.

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How do you treat your MS?

Multiple sclerosis symptoms can vary greatly between different individuals, as can the progression of the disease.  Therefore it’s no surprise that treatment strategies also vary from person to person. Since there is no known cure or “easy fix” for MS, the primary goal of treatment is to manage the disease while maintaining quality of life. There are currently a number of treatment strategies to help alter the disease course, manage symptoms, manage relapses, and support your overall physical and mental health.

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In the MS in America study, 95.5% of respondents indicated that they had tried prescription medications while 85.3% were currently using prescription treatments. Although prescription and over-the-counter medications were the most frequently used treatments, a variety of Complementary and Alternative therapies were also utilized.

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Nearly 80% of survey participants had tried Vitamin D and 62% tried exercise. Almost half of respondents tried changes in diet to help manage their MS and just over 10% of survey participants indicated that they were currently using rehabilitation therapies including physical therapy, occupational therapy, speech/swallowing therapy, cognitive rehabilitation, and vocational therapy.

Of these respondents, 57% were satisfied with their current treatment plan and 12.8% were dissatisfied with their current regimen (30% were neutral; n=2,854).

What treatment and management strategies have you tried for your MS? What’s worked and what hasn’t? 

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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Tips for Avoiding a Post-Holiday Multiple Sclerosis Flare

By: Matt Cavallo

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

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

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

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

Tips for Minimizing Post-Holiday Stress

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

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

Resources

*Matt Cavallo was diagnosed with multiple sclerosis in 2005. Matt is an MS blogger, author, patient advocate, and motivational speaker. Matt also has his Master’s degree in Public Health Administration. Matt is the proud father of his two sons, loving husband to his wife, Jocelyn, and best friend to his dog, Teddy. Originally from the Boston suburbs, Matt currently resides in Arizona with his family. To learn more about Matt, please visit him at : http://mattcavallo.com/blog/

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Sticking to My Resolution for Better Health and MS Symptom Management

By: Matt Cavallo

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

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

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

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

Successful Goal Setting Tips

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

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

 

*Matt Cavallo was diagnosed with multiple sclerosis in 2005. Matt is an MS blogger, author, patient advocate, and motivational speaker. Matt also has his Master’s degree in Public Health Administration. Matt is the proud father of his two sons, loving husband to his wife, Jocelyn, and best friend to his dog, Teddy. Originally from the Boston suburbs, Matt currently resides in Arizona with his family. To learn more about Matt, please visit him at : http://mattcavallo.com/blog/

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

By Matt Cavallo

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

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

Steps to Recovery

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

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

Happy Thanksgiving, everyone!!!

References:

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

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

*Matt Cavallo was diagnosed with multiple sclerosis in 2005. Matt is an MS blogger, author, patient advocate, and motivational speaker. Matt also has his Master’s degree in Public Health Administration. Matt is the proud father of his two sons, loving husband to his wife, Jocelyn, and best friend to his dog, Teddy. Originally from the Boston suburbs, Matt currently resides in Arizona with his family. To learn more about Matt, please visit him at : http://mattcavallo.com/blog/

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