Communicating Effectively with MS

Posted on July 30, 2014 by Samantha Schech

By: Matt Cavallo

One barrier to accepting that you are now a person living with multiple sclerosis is communication. When I was diagnosed with multiple sclerosis, it seemed that every conversation I had ended up being about my MS. Whether it was family, friends or co-workers, inevitably during the conversation the person I was talking to would pause and ask, “So, how do you feel? You look great.”

While these conversations were well-intentioned, no one picked up on the fact that I didn’t want to talk about my disease. All I wanted was to do was have regular conversations about sports, work or the weather. The kind of conversations we would have before I was diagnosed. More and more I found myself avoiding conversations rather than reliving my diagnosis over and over again.

This was causing a tremendous amount of stress in my life and that stress was affecting all the relationships in my life. Whether it was at work, friends, family or my wife, all these relationships were suffering as a result of the breakdown in communication. I then realized that I wasn’t going to be able to control the way the people talked to me about my disease. If I wanted to end the stress of talking to people about MS, I was either going to have to cut everyone out of my life or change how I communicated my illness.

For me, change does not come easy. One of my 7 Steps to Living Well with a Chronic Illness, is Learning to Communicate Effectively. I believe that when you are diagnosed with a chronic illness, like MS, you go through five stages of grieving: denial, anger, fear, grief and finally, acceptance. Learning how to communicate effectively is what helped me go through these stages. Instead of losing relationships because of my MS I started to make changes that allowed me to accept my MS.

Excerpt from 7 Steps to Living Well with a Chronic Illness
Rediscovering My Purpose

I remember sitting in my doctor’s office in the spring on 2007. I had previously shared with her a draft of my memoir, The Dog Story: A Journey into a New Life with Multiple Sclerosis. She loved the passion in which I describe my writing. She said that I had an articulate, succinct way of telling my patient experience story. She also said that there was an opportunity to share my story at an upcoming patient support group meeting. Without thinking about it, I agreed to speak at the meeting.

Then on my way home, a rush of anxiety and fear overwhelmed me. What had I agreed to? I had never given a speech. I didn’t know what to say or where to start. When I got home, I talked to Jocelyn about the upcoming speech. Given all that I had been through with my disease process, she thought that it would be good for me to attend the support group in general. She also thought that I would be good as a speaker. I was skeptical…

… I put on a blue blazer, a button down white shirt, a pair of jeans and some blue tennis shoes. My cousin came with me to film the event. As we drove, the butterflies started to mount in my stomach. I walked into the hotel lobby and followed the signs to the meeting room for the support group.

In an instant I had forgotten everything that I was going to say. I started sweating and paused for what seemed like an eternity. All eyes were on me and the projector beam was like a white hot piercing spotlight in an interrogation room. The doctor introduced me and I walked to the front of the room, raised my right hand and waved.

“Good afternoon everyone!”

I collected myself and began again. Eventually I started to feel my rhythm. The sweat was no longer pouring and I found my confidence and timing. The crowd even erupted with laughter when I interjected a joke. I was surprised. It was a subtle joke, but they got it. When that happened, the words started rolling off my tongue and I told my story better than I ever had rehearsed it. The audience loved it. Everyone came up to me afterwards and said how much my talk meant to them. I was touched.

Looking back, standing up in front of that crowd and sharing my story changed the way I felt about communicating my MS. Up until that point, I was not comfortable talking about MS at all. And it wasn’t because I was sharing my story in a front of a room full of people that caused the change in me. It was everyone in the audience who shared their story with me after the talk that helped me understand that I wasn’t alone. People shared similar experiences and how hard it was to talk about their illness. Since that day, I have made it my mission to spread the word about living with MS.

If you are going through difficulty with you MS or having a hard time accepting your diagnosis, it is OK. You are not alone. Learning to communicate your story of living with MS will help you in accepting your condition. Once you learn how to effectively communicate your story with MS you will find that you are not alone and that you really do look great!

*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/

Let Us Help You Help Others.

Posted on July 28, 2014 by MSAA

by Kimberly Goodrich, CFRE, Senior Director of Development

In previous blog posts and articles in our magazine The Motivator, I have addressed the controversy over whether charity ratings are really helpful in giving a true picture of an organization’s effectiveness in meeting their mission.

Earlier this month, I attended a luncheon on this topic with Steve Nardizzi, CEO of Wounded Warrior Project (WWP). Nardizzi gave several examples where ratings from charity watchdogs were not helpful in determining if an organization is meeting its mission. In some cases the ratings were even misleading. One example was the Central Asia Institute, formerly run by Greg Mortenson co-author of Three Cups of Tea. When Mortenson was ordered to pay back over one million dollars in misused funds, his organization had a four star rating. How does this help us decide where our dollars should go?

This makes it harder for the donor. There is no one single number that tells us if an organization is doing a good job or not. We need to dig deeper and ask questions about goals and impact – not ratios. Ask about the people they help. Is that number growing? Are they feeding more people? Saving more forests?

WWP continues to grow despite mediocre ratings. Why? Because its supporters see the incredible impact they are having on the lives of wounded veterans. Eight years ago they had higher ratings, but only 10 million to spend on programs. By making a conscious effort to invest in fundraising, marketing, and staff, they now have lower ratings, but spend 176 million on programs for veterans. By ignoring the ratings and focusing their resources on their mission, more veterans are helped. And really, isn’t that what it’s all about?

At MSAA our mission is to improve the lives of those living with MS. Like WWP, the amount we spent on fundraising went up. Some think this is bad. However, this increased fundraising helped our overall rating to go up. This increase in fundraising led to a significant increase in revenue (16.5% growth last year). This increased revenue in turn allowed us to help more people living with MS. Our toll-free Helpline assisted 6% more people. We provided ongoing MRI assistance to 9% more people, and diagnostic MRI assistance to 70% more people than the year before. Our mobile phone app was downloaded by an additional 7,000 people who now use it to track their symptoms and improve their daily lives. These are increases we are proud of and that make the decision to invest in additional fundraising streams worthwhile.

What numbers would mean the most to you? How do you think we should decide if an organization is meeting its mission and therefore worthy of our donations? We’d like to hear your thoughts. Help us help you to help others.

*About Kimberly

I am the Senior Director of Development at MSAA and have worked in the nonprofit arena for over 15 years. I love reading, running, theatre and the Green Bay Packers. I volunteer with the Disabled American Veterans teaching outdoor sports like skiing and kayaking to injured veterans and find that I receive much more from them than I am able to give.

You Know You Have MS When…

Posted on July 25, 2014 by MultipleSclerosis.net

People with MS tend to be very familiar with the typical symptoms associated with having this condition, like pain, fatigue, difficulties with mobility, numbness, tingling, bowel and bladder problems, among others. However, there’s so much more to having MS than what anyone could find in a textbook or a pamphlet at the doctor’s office. We wanted to know more about the everyday life of those with MS, so we asked our Facebook community to respond to the statement, “You know you have MS when____.” More than 150 people replied! Below is a summary of the feedback we received.

You just feel exhausted

After sleeping a full 8 hours, you still feel like someone used your body to run a marathon
The simple task of washing your hair is exhausting
Your kids think that all you do is sleep and that you’re sick all the time
You are so tired that you cry, and no amount of sleep helps
Everyone says, “You look tired – what did you do last night?” and you respond, “Nothing”
You’re too tired to get up, but you just end up lying around in bed thinking about what you should be doing
You wake up with a little bit of energy, bounce upstairs and fix breakfast, only to end up exhausted and needing a rest
You are tired or fatigued all the time, and you can’t find the energy to take a shower
Your battery depletes after 45 minutes of walking, and you become a complete physical mess on your feet
Feeling well-rested is a thing of the past
You must have a plan B, C, D, etc.
You need a nap before you go to the store to get coffee, and then need a nap again before you put it away
It takes HOURS to pay bills and organize your family calendar when, in the past, you were a successful nurse manager and an expert at multitasking

The weatherman is not your friend

Summer used to be your favorite time of year, but now sunlight, heat, and humidity keep you inside like a vampire
You’re the only one in the room saying, ‘Is it hot in here?’
When 70 degrees feels like you’re standing inside of an oven
When you can’t do any outdoor activities due to the heat
When summer heat hits the triple digits, and you can barely breathe
Your body is better at predicting the weather than the actual weather man

Getting around and maintaining control of your body is challenging

You can’t play with your kids or take a walk with your husband
You fall over when standing still
Your upper body starts to walk, and your legs don’t get the memo in time
You don’t even realize it when your legs go out from under you
You wonder if you’ll be able to climb the four stairs it takes to get into your office at work
You just tip over when standing still on level ground
When you wake up one morning, and you’re paralyzed on one side of your whole body
You keep tripping up over nothing
You are always dropping things
You are in the market shopping for groceries, and a fireman stops you because your face is drooping and you are confused, and they think you have had a stroke
Your hands are asleep and they don’t wake up
You are eating dinner and your arm suddenly jerks and your food goes flying across the table
You walk like you’ve had a few cocktails, but you haven’t had a sip
You find that no one around you realizes how hard you have to work to keep up, and you just end up getting left behind
You have to stop mid sentence because you’ve lost your train of thought
You take the dog for a walk around the block,and your legs feel like they are encased in cement
You walk like you are dancing to Michael Jackson’s “Thriller”
When your knees are locked as though there’s a magnet holding them together
When you go from 0 to pee in two seconds flat
You have to hold on to walls because you lack balance
You trip over something earlier in the day because of ‘drop foot’ and later that day you look at your scraped toes and wonder what happened
You decide being an unwitting participant in a wet t-shirt contest is better than running for cover during a surprise rain storm at an amusement park
You can’t stand without assistance
Your head goes one way and your legs another
You have to look at your hand and tell it to move
When you can’t pass a field sobriety test while sober
Despite only being 41, you walk like your 76 year-old mother
You have to lean your elbows against the shower wall to wash your hair

Your mind isn’t as sharp as it used to be

You lose your train of thought while mid-sentence
You walk into a room and forgot why you went in there in the first place
You have the hardest time trying to say what you want to say, and your words come out making no sense
You describe your symptoms, and your neurologist looks at you as if you were speaking Greek
You get confused when there is too much going on around you; you can’t even place an order at a fast food restaurant
What was the question?

Pain and numbness become a part of everyday life

Your feet feel like they are on fire or you have frostbite
You are numb and tingly and have burning sensations all over
You get unexpected zaps of excruciating pain in your face, arm, leg, and you try not to scream
You are screaming from pain as what feels like loose electric wires whip out of control at the base of your spine
You feel like you are being stabbed, and you have a tingling feeling all over your body
You can’t feel your fingers, but you feel like you’re walking on rocks, barefoot
You feel continual electric shocks down one whole side of your body that are strong enough to make you gasp out loud
You “feel” noises that go straight to the bone with subsequent weird pain!
Your body feels like you got into a fight with Mike Tyson, then got run over by a semi, and then kicked to the side of the road
You feel like you are sitting in a wet bathing suit because your butt is numb

People assume that you are fine

When everyone assumes you are normal and they say, ‘Let’s go – get with it’
Your friends and family think you are fine because you look the same, so they think you are just being anti-social
You get angry hearing, “Gee, you can’t be feeling bad … you look too good”

Does any of this resonate with you? How would you complete the statement, “You know you have MS when ____”?

Change and the Impacts on Your “Self” When You Have MS

Posted on July 23, 2014 by Samantha Schech

“Change is the law of life. And those who look only to the past or present are certain to miss the future.”
-John F. Kennedy

By definition, the word change means to make or become different. But in what ways do we change? When I reflect on my life, I don’t think of my current self as any different from my past self. Certainly I have learned from my mistakes and have adapted, but I still think of myself as the same person I was many years ago. Maybe my taste in music or my physical appearance has changed, but morally and ethically I don’t think I have changed much.

Sometimes a chronic illness like MS may impact an individual’s views of themselves. By focusing only on the past and how MS may be impacting the present, like John F. Kennedy stated, you may “miss the future.”

I think that this quote is pretty powerful and allows for the opportunity to really think of who we are and what attributes of our “self” we consider important. In certain ways, all people may change over time, but focusing on the positive attributes of your life allows you to honor them and your sense of “self” and will guide you into the future.

What parts of your self have remained un-changed? In what ways are you honoring your self?

Getting Graphic When You Have Multiple Sclerosis

Posted on July 21, 2014 by MSAA

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.”

You’re My Person…

Posted on July 18, 2014 by Angel Blair

So in our day to day we sometimes overlook things that are important to us. It’s not done on purpose or due to an act of spite; it’s realistic that things get pushed to the side when we have so many other things going on. In a world such as ours with life going a mile a minute, how can things not go unnoticed? But when you do have time to talk, to listen, and be with someone else, who brings out the best of who you are? Who’s your person? Who is that being you turn to when you need someone to confide in? What is it about this person that makes you feel so comforted in communicating with them?

Every individual is different; thank goodness for that! It’s a person’s quirks, attributes, and strengths that attract us to them in the first place. We like when someone is different from us so they can offer new perspectives on things, but we also like when we share the same interests and personality traits that make the relationship flow so well. We tend to look for connections that will hopefully bring out the best in us – someone to complement our traits and allow the best part of us to shine through. We confide in others when we need to vent, discuss things out loud, and find validation for what we’re going through. It’s comforting to know that someone else is there when we need to reach out.

Your go-to person may be a family member, friend, significant other, or someone else – the relationship title doesn’t make a difference. It’s the communication and bond you share that matters. Family members may drive you crazy at times, but sometimes they’re the ones you’re closest to, without even realizing it. If you are still looking for your ‘person,’ that one who you can confide in and turn to in times of need, take another look; they may already be a part of your life…..

Who’s your person?

Identifying Communication Barriers

Posted on July 16, 2014 by Samantha Schech

Throughout our lives we have all experienced a time or two where a complete lack of communication has occurred and something has gone wrong, whether someone didn’t get the toilet paper at the store, or someone forgot to pick the kids up at daycare. It’s often easy to say that there is a communication problem, but finding a solution or working towards improving communication is a whole other beast to try and tackle.

Identifying that there is a communication problem is the first step in correcting it. It may also be helpful to try and determine the type of communication problem you are having. When specifically talking about relationships and communication, the following are some of the more common communication problems that can be seen:

The “assumers”: those who think they know what the other person is saying or thinking, but don’t ask how they are feeling. Most commonly you will hear from these individuals something along the lines of, “Oh, I don’t have to ask him/her, I know what they will say.”

Those that “read between the lines”: these individuals create false scenarios about every possible answer, thought, or feeling that could be occurring in the other individual. Most commonly, these are the “what if” individuals, who you will hear say things along the lines of “when he/she says ____, do you think they mean ___ what if they really think____?”.

The “keep quiet and this will pass” type: for this type of individual, it is the complete lack of communication that leads to more issues in the relationship. These individuals choose not to pose questions or speak to their partners in hopes that things will get better on their own.

These are just a few examples of some of the communication challenges that individuals may face. It can be difficult to think of ourselves as doing something bad or wrong, or in any way hindering our relationships. But I encourage you to look at your current relationships and think about how your communication styles may be influencing the relationship. In what ways can you see yourself making changes? Have you found something that works for you and your partner?

Celebrating My Birthday Despite MS

Posted on July 14, 2014 by MSAA

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!

6 Ways to Support the Multiple Sclerosis Community

Posted on July 11, 2014 by MSAA

Looking for some creative ways to support individuals living with multiple sclerosis (MS)? In the following list, we’ll show you six different ways you can help MSAA improve lives today—without breaking the bank.

1. AmazonSmile— AmazonSmile is a great way to support the multiple sclerosis community without spending extra money. Simply select the Multiple Sclerosis Association of America as your charity of choice, and Amazon will donate 0.5% of the price of your eligible purchase to MSAA! Click here to learn more or to make a purchase.

2. eBay Giving Works— Do you have some things lying around the house that you’d love to sell on eBay? If so, you can choose to donate a portion of your sales to MSAA. Visit eBay’s Giving Works website to learn more.

3. Counter Punch Wine— Calling all wine lovers! Purchase wine bottles by using MSAA’s promotional code and receive a 10% discount! The best part? MSAA will also receive 10% of your purchase—helping us to continue improving lives today for people living with MS. Please visit www.counterpunchwines.com and enter the promo code: MSAA

4. CafePress— Get all your MSAA and Swim for MS swag here. Everything from bags and water bottles to t-shirts and bracelets make great gifts. Check out the full inventory.

*We’re sure you’ll love our shirts, but we can’t promise you’ll look this cute wearing them.

5. PuraVida Bracelets— Help us raise awareness of multiple sclerosis by purchasing an MSAA bracelet from PuraVida. $1 of each bracelet purchased will go directly to MSAA. Visit PuraVida’s site to learn more.

6. Host a Pool Party— Now that summer’s here, invite your friends and family to the pool and have a Swim for MS themed pool party! Provide games, snacks, music, and ask for donations at the door. Your only pool party requirements for this easy event are fun & sun! Email swim@mymsaa.org to start planning your event.

However you choose to show your support for the MS community, MSAA would like to wish you and yours a safe and enjoyable summer. If you or a loved one struggle with MS symptoms during the summer heat, please visit our website to learn more about MSAA’s Cooling Program or call MSAA’s Helpline at (800) 532-7667 ext. 154.

The Time is Ripe…Despite Multiple Sclerosis

Posted on July 9, 2014 by MSAA

If you like to eat bananas, then you know that there are only a few days that they are in their prime. You go from the green tough phase, to one or two days of yellow perfection, and then the brown spots, bruises, and too sweet taste takes over.

If you eat avocados, then you know that when you buy them you have to feel them each day until they get just soft enough, and if you buy them soft, you must consume that day or miss your window of opportunity. In fact, sometimes it may seem like your avocado only has a few hour span where it is perfect for consumption.

So, what do bananas and avocados have to do with anything (aside from eating them, since they can be delicious and healthy snacks…just not served together)?

There are things in life you may want to do, but find you don’t have the time and/or the planning just never seems to work out. You know, like when you belong to a gym, but every time your schedule has an opening you are too fatigued to go. What about that painting class you wanted to take, but it is only held on a weeknight. which is really inconvenient? Sometimes you may be dealing with a banana situation where you only have one or two days which might work or an avocado situation where you feel you have mere hours to make something happen.

Yes, life is complicated and busy, and can be extremely overwhelming. MS often throws a wrench into all of those carefully laid plans, but if there are things that you want to do: meet up with your friends, take that class, and get to the gym. Despite MS, the time is ripe to take charge and enjoy all of those things you want to do with your life. Sometimes it may take careful planning, re-prioritizing, and positive self-talk to get you there, but it’s worth trying. There may be cancelled appointments and days when you need to take a nap instead, but don’t let those days take over for planning for every other day.

After all, you probably still buy bananas even though you know you might not get to eat each one before it turns brown, and if you aren’t already acquainted, please meet your new friend guacamole.

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