Communicating Effectively with MS

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 Purposematt blog

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/

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

“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?

 

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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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6 Ways to Support the Multiple Sclerosis Community

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.

AmazonSmile

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.

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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

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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.

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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.

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The Time is Ripe…Despite Multiple Sclerosis

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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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Time to wind down…

After a long and seasonably warm 4th of July holiday weekend, it may be time to relax and recover a bit from the weekend’s festivities and weather. A long holiday weekend can tire anyone out, and for those with MS, the heat index does not add favorably to the situation. Spending time with loved ones and friends, though enjoyable, can be tiring as well, so make sure to focus on your needs and health after these get-togethers. Take some time for yourself-retreat to cooler environments, take a stroll in the evening to unwind, or settle down with a hobby or activity you favor. Taking a time out from busy activities can help you catch your breath and get back into a routine that works in your day to day.

What do you do to wind down?

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Life with MS in Florida – Baby it’s HOT Outside!

By: Jeri Burtchell 

Living with the challenges of MS is one thing, but if you also live in the south, surviving summertime is no small feat. Everyone’s symptoms are different, but here’s a universal MS fact: whatever the symptoms, heat will make them worse.

Having lived in northeast Florida since my 32 year-old was in diapers, I consider myself a southerner, even though technically I was born in New York.

I qualify as a southerner because:

  • I don’t own a pair of boots, but I have more flip-flops than Skittles has flavors.
  • I wait until the weatherman says a hurricane is at least a category four, and three blocks away before I get supplies.
  • My perfume in the summertime is mosquito repellant.
  • The only candles I buy contain citronella.
  • I take beach photos from the passenger seat of a moving car as we’re doing a drive-by – to prove I really do live in the Sunshine State.

I head indoors before the summer solstice in June, set my air conditioner to “frostbite.” I don’t emerge in the light of day again until school starts in the fall. It’s the only way I know to endure it.

When I was in my 20′s, my favorite hobby was hiking in the Ocala National Forest armed with binoculars and a bird book. I don’t recall the heat ever bothering me.That was before MS and old age turned summertime into my mortal enemy. Now I admire the outdoors on the Nature Channel or ESPN, no longer eager to be personally immersed in it.

But sometimes you just have to brave the elements. Like when your granddaughter joins a local swim team and you go to cheer her on. Turns out you can’t do that via Skype, at least not when you’re the one who’s going to be driving her to and fro.

Her first meet was an hour’s drive out of town. We had to arrive at 7 a.m., and we figured it would last a couple of hours and we’d be out of there in no time–before the coolness of the morning was replaced by scorching heat.

Boy, was I wrong! I have lived here long enough – I should have known better. On top of that, I even wrote an article about how heat affects those with MS. It’s not like I didn’t know.

But what we thought would take only a couple of hours turned into an all day event. By the time she was done and we were headed home, I was dizzy and limp as a noodle. We had to sit in the car with the AC running full blast for quite a while before I could even drive. While we sat and waited for my brain and spinal cord to cool off, we chatted about how much fun she had.

jeri blog

It was at that instant I knew that any heat-related suffering I’d been through that day was worth having shared the experience with her. As I began to cool off, and my legs changed from overcooked pasta to more of an al dente, I realized I was going to have to come up with a plan.

MS might stop me from my bird-watching nature hikes, but when it tries to come between me and cheering my granddaughter on, I’m putting my numb and tingly foot down.

So I made a list of what might make the experience more bearable for me next time:

  • I’m wearing shorts or a dress. Period. No matter how unflattering my legs might be, jeans are not an option.
  • I’m wearing light, thin clothing and only flip-flops on my feet.
  • I’m bringing a folding chair — despite all the chairs at the facility, there was never one available when I needed to sit down NOW.
  • I’m getting a big floppy straw hat.
  • I’m bringing a personal cooler with a rag down in the ice water that I can wipe my brow or pulse points with occasionally.
  • I’m bringing lots of bottled water.
  • I’ll get myself a spray bottle with a fan built on it.

It never occurred to me to sit at the edge of the kiddy pool and stick my feet in, but I just might do that, too. Of course, by the time I have a huge floppy hat, breezy muumuu covered in Hawaiian flowers, and oversized sunglasses on, my granddaughter might just be mortified at me shouting encouragements from the side of the pool.

But it’s either that or stay home, and since they don’t televise her swim meets on ESPN, I don’t have a choice now, do I? :)

References:
http://www.healthline.com/health-news/ms-multiple-sclerosis-patients-more-sensitive-to-heat-052113

*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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Keeping Your Cool During the Warmer Months to Help Manage MS Heat-Related Symptoms

The summer months are upon us, which means warmer temperatures and the potential for a worsening in MS symptoms. Fatigue is one of the more common symptoms of MS, and it can impact a person’s mood, sleep, and overall quality of life.1 As many of us know, there is a well-established link between MS-related fatigue and heat sensitivity,2 so the warmer summer months can be especially challenging for a person with MS.

Last summer, one of the MultipleSclerosis.net contributors, Ashley Ringstaff, wrote about some of her trips and tricks for dealing with the summer heat. Since Ashley lives in central Texas, she is no stranger to brutally hot summers. She also has 2 very energetic children who love being outside, so staying in an air-conditioned house all day isn’t an option, even if she wanted it to be. Ashley’s recommends using cooling products (not just cooling vests), including those that are available through MSAA’s Cooling Program and Polar Products. She also uses an outdoor garden hose mister and outdoor fans when she is sitting on her porch, and she even likes the inexpensive handheld fans when she is following her boys around. She noted that staying hydrated, is of course, also extremely important.

Caregivers also understand the importance of helping a person with MS stay cool to minimize heat-related symptoms. Last summer, Patrick Leer shared his story about making lifestyle adjustments to help his wife during the warm summer months. He made sure to keep a cooler packed with water bottles and a neck cooler that he received at an MS walk. Patrick also mentioned unique considerations for planning a family vacation at the beach – he would book a room with a view of the beach so his wife could stay inside with air-conditioning and enjoy watching their daughter play outside in the sand. They even managed to find a beach hotel with an ice rink, which seemed to be made for families just like theirs!

Because heat can exacerbate MS-related fatigue, we recently asked our Facebook community if they experience more fatigue in warmer months, and how they manage MS-related fatigue. Here are some of the highlights from our community members’ responses:

Managing MS-Related Fatigue in the Warmer Months

Keeping cool using different devices

  • Soak small towels in water for your neck, face and top of your head and reload it at water fountains or hoses.
  • Use a cooling vest.
  • Carry ice packs in your pockets with a travel sized spray bottle full of cold water.
  • Carry a small damp towel in the spring and summer to help cool your head and face.
  • Use Frog Togg cooling cloths.
  • Wet bands that you put around your neck really help; also drink plenty of water, use air conditioners and fans.
  • Take cool showers.
  • Some individuals may benefit by wearing long sleeves and a hat when outside. Sweating is nature’s way of keeping you cool, so long sleeves can absorb perspiration and keep you cooler. Limiting time outside to 15- or 20-minute periods with rest in between can also help.

 Consuming cold food/beverages

  • Eating crushed ice throughout the day can help.
  • Keeping a cold drink with you helps tremendously so you can cool yourself from the inside out. Iced beverages and popsicles help.

 Other tools to combat heat-related fatigue

  • Exercise helps but it is sometimes difficult to shake the symptoms to get up the energy to go exercise.
  • Acupuncture and reflexology can help.
  • Try to get as much done in the morning to mid afternoon.
  • If prescribed by your doctor, taking a medication such as Provigil® (modafinil) that promotes wakefulness can help.

MultipleSclerosis.net moderator, Christie Germans, mentioned that she relies heavily on air conditioning as well, and she’s able to get a discount on her electricity bill due to her MS diagnosis. She recommends exploring your gas/electricity provider’s website for discounts available for medical needs. Multiple sclerosis will likely be listed in the “qualifying medical needs” list. Or, contact your neurologist’s office. You may be able to save as much as 30% on your bill! For her full response, click here.

Do you experience more symptoms in the warmer months? How do you manage MS-related fatigue?

References

1. Induruwa I, Constantinescu CS, Gran B. Fatigue in multiple sclerosis – a brief review. J Neurol Sci. 2012;323:9-15.

2. Marino FE. Heat reactions in multiple sclerosis: An overlooked paradigm in the study of comparative fatigue. Int. J Hyperthermia. 2009;25:34-40.

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Pushing the Limit When You Have Multiple Sclerosis

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Physical exercise for individuals with multiple sclerosis (MS) has been a hot topic over the last few years. While exercise is always encouraged to promote a healthy lifestyle and to increase physical function, many are still unaware of the types of exercise that can benefit those with MS.

At the Consortium of Multiple Sclerosis Centers (CMSC) conference last month, I attended a number of wonderful programs regarding exercise and MS, affirming the importance of an exercise routine. Many discussions were had regarding the level of physical activity and ways to work and improve the body’s ability.

In a recent article published by the Rocky Mountain MS Center, Dr. Timothy Vollmer discusses the importance of pushing oneself to the point of fatigue once a week during exercise. Similar to how a person might train for a marathon or endurance sport, Dr. Vollmer explains that when exercising using a normal routine, in order to see improvement one needs to push the limit of exertion once a week. By pushing the body’s limit, the body adapts and grows, making the activity less strenuous over time.

In many meetings at CMSC, researchers also discussed the idea of working the body to physical exertion. This is a major change in the minds of those in the MS community. Although the importance of exercise is stressed, research has not yet described the level of exercise that may be effective. I look forward to seeing how the paradigm shifts from “taking it easy” to “pushing beyond your limit” and what the research has to offer the MS community.

It is always recommended to start and continually monitor your fitness routine with a professional such as a physical therapist (PT). The PT can help determine your body’s capabilities and knows what your body’s limits are. A safe and effective fitness routine may help to improve physical function and promote a better quality of life.

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Did You Ever Have One of Those Days?

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You know the type of day I’m talking about. The kind where it seems like NOTHING can go right. You’re late for something, something breaks, unexpected news is received, and there isn’t enough time in the day to deal with everything? Sometimes it seems like all the elements of the universe got together to plan out a bad day for you to have. It may feel that way when these types of days sneak up on you.

We’ve all experienced our share of bad days, and they seem to stick with us. But I wonder, when we have good days, do they stay with us just as strongly as these other types of days? It doesn’t always seem like it. Sometimes it’s easier to remember a bad day than to recall a good one. But what if we were to do just that-to purposely recount a good day we’ve had? What would that look like? Sure, with bad days we complain, grieve, and vent, but with good days, how do we describe these? How can we pocket and stow away those good moments so that we can retrieve them and re-experience them during one of these other days?

One idea is to write down your good experiences, that way you can take a look back at how the day played out and what good came of it. You can learn to be mindful of the good moments while they happen; when the good times are actively occurring, soak it all in, notice how you feel in that moment, stay present with your breath and what’s going on around you. So that way when you try to remember the good moments, they’ll be fresh in your mind, and you can hold onto them like precious fragments the universe brought you that day made especially for you. Recalling good moments and positive memories can help get you through those other types of days, so why not reminisce more often about the good?

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