Summer Reflection

By: Matt Cavallo

For me, having MS sometimblog pices means more sleep. This is especially the case for me with two young boys, who don’t tend to sleep in and have endless amounts of energy. I find that when the seasons turn to fall and the long sunny days turn to long dark nights, I find myself chronically tired and needing to hibernate. When I feel like I need more sleep, I draw on lessons learned from the summer.

This June, my wife and I decided to drive to take the kids to Legoland in San Diego. San Diego is about a five hour drive from my house, so we loaded up the minivan and hit the road for a three day vacation. Prior to that vacation, I put it in my mind that it was going to be hot and that I was going to be waiting in long lines for the rides, but that I needed to give my kids a vacation to remember.

The first day took a lot out of me. The drive was exhausting. Even though the kids behaved and there was only a little traffic, driving that long can be taxing. However, once we got to the hotel, the kids wanted to play. Even though I was exhausted, we met up with friends and went to the beach. I spent the entire time at the beach playing in the water with the kids. After about twelve hours of going non-stop, we went to the hotel and I crashed.

The next morning came too early, but the kids were up and ready to go. I felt like if I could just get a little more sleep, I would have energy for Lego Land. More sleep was not to be had but we spent an awesome twelve hours running around the amusement park, going on the rides and playing the games. The sun was brutal and beat me down as I waited for ride after ride. By the time we got to bed, I was so exhausted that I didn’t think I could possibly pull it together another day.

The next day came and I needed just a little more sleep, but that was not going to happen. It was day two at Lego Land and the kids were ready. It was a repeat of the first day and the kids were having the time of their lives. We spent another twelve hours roaming the park being roasted in the early summer sun. By the time we got back to the hotel, I thought I was going to pass out from exhaustion, but the kids wanted to swim at the pool. So even though I had expended all my energy at the park, I needed to dig down and find the inspiration for one more hour of activities.

While I was sitting at the pool watching the boys swim, I thought that this is what life was all about. It turned out that I didn’t need more sleep. Sure I was tired and the sun and MS fatigue were wearing on me, but I needed to be there. At this moment, having MS meant time with my sons. So many times, I had let my MS fatigue get the best of me, but I fought through it to create memories that will last a lifetime.

As I look forward to the fall season and the long nights, I think back to that summer vacation. I look back at how I was fatigued and didn’t think I would make it, but created precious memories. For me it is all about getting going, because for me getting started is the hardest part. This fall, I am not going to require more sleep. I am going to spend more time with my sons, because that is what motivates me to keep going. What lessons from summer are you going to use to keep going this fall?

*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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The Empowered Patient: Your Greatest Resource Lies Within

By: Jeri Burtchell

I remember feeling like I’d stepped through the looking glass that day in the hospital. My world became distorted and unreal as the words “you have multiple sclerosis” echoed in my brain. I couldn’t make sense of it; this couldn’t be happening. Suddenly my life as I knew it was over and I could either live in the past, or look to a new future.

It may have been over 15 years ago, but I haven’t forgotten that day. Anyone living with MS was once “newly diagnosed.” We’ve all been there.

So this month, in keeping with MSAA’s theme of finding resources, I’d like to introduce the newly diagnosed to what will become their greatest resource of all. It’s the mental approach we take toward living our best life despite MS. I’m talking about being an empowered patient.

The term “empowered patient” has no clear-cut definition, however it encompasses an overall set of characteristics that sets one apart from the average patient. Empowered patients take an active role in making health care decisions, learn all they can about their condition, compile resources, take notes, and strive to improve their own quality of life. There is no set way to accomplish this; each empowered patient discovers their own path.

For eight years after my diagnosis, I was anything but empowered. I felt helpless, overwhelmed, and despondent. My medication wasn’t working for me even though my doctor insisted it was. I had no idea I could get another opinion, and I trusted him when he said I needn’t try any other medicines.

Then one day my neurologist had a stroke. I was suddenly fighting my MS battle alone. That’s when my journey toward empowerment began. My first step was finding another doctor.

I’d never been very sick before MS, so doctor shopping was uncomfortable for me. I had my primary care doctor pick my new neurologist instead. (My path to empowerment began with baby steps.) It turned out the doctor he chose was the lead investigator for a clinical trial studying a pill for MS.

When I met with him we discussed the drug trial, weighing the risks and benefits. He also told me of all the other available options. Again I had to choose. I was terrified of making the wrong decision, and all of the medicines seemed so scary. But I was more afraid of not being on one of the drugs since my MS was so aggressive. I took home the paperwork to read up on the clinical trial. Three days later I took a huge leap. I decided to join.

Up until then I had been miserable, relapsing 3-4 times a year. Really big relapses that had me in a wheelchair, on a walker, or using two canes. The whole time I suffered, I never thought things could ever change. I thought I was destined to be miserable forever.

But the trial changed my life. I happened to get the real study drug and it worked so well for me, it would be another six years before I had a new relapse.

The positive outcome of my choices reinforced the importance of playing a more active role in my health care.

I learned all I could about my disease and took notes about what others found effective for treating the symptoms of MS. I questioned everything and sought to find the answers. As they say, knowledge is power.

But being an empowered patient isn’t just about making treatment decisions and getting second opinions, it’s also about owning your lifestyle choices, too. I took a long hard look at the things I could change. I gave up smoking and junk food and began exercising more. I saw real improvements. My goal is not just to live life, but to feel as good as I can at the same time.

But if giving your whole life a makeover seems like an impossible task, just take baby steps. Find one thing you can do that positively impacts your health and focus on it. If you need help, reach out for support.

Becoming an empowered patient doesn’t happen overnight. It’s a process that evolves over time.

So if you’re newly diagnosed and feeling overwhelmed, don’t despair. Know that there is an ebb and flow to relapsing MS and if you feel bad now, there are better times ahead. Focus on learning all you can and actively participate in your treatment decisions. If you don’t like your doctor, find another one. Don’t wait for them to have a stroke before you start thinking for yourself.

You’ll find that being your own advocate might be your greatest resource of all.

*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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Thank You Readers! My One Year MSAA Blog Anniversary

By Matt Cavallo: 

It was one year ago at this time, I started volunteering two blogs a month for MSAA. I was thinking about it today as my oldest son got ready for his first day of first grade. One of my first blogs was a back to school blog about parenting with MS, where I cried as I watched him go to school for the first time. I have shared many memorable blogs with MSAA since that time. From the one about a stranger “paying it forward” and buying my meal when he heard my MS story, to my recent birthday blog, each story is intended to provide inspiration and hope through my own journey.

My favorite part about writing the blog for MSAA is interacting with you, the readers. I have met so many wonderful people along this journey. Whether it has been through my personal website or social media, many of the readers of this blog have reached out to thank me for my contributions to this blog. I can’t tell you the tears of joy I experience from all of your feedback. It has been a pleasure sharing my stories here, and I it touches my heart that they are meaningful to you.

Thank you again for all the great feedback throughout the year. I promise to continue writing these personal blogs and sharing my stories and experience with you. Being able to connect with patients like myself makes it worth it. Together, we are making a difference in the lives impacted by MS. Take care and keep up the good fight!

Resource:
Parenting with MS – http://blog.mymsaa.org/parenting-with-ms/

*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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Disclosing MS at Work – Community Experience

Since MSAA first partnered with the MultipleSclerosis.net staff, we have consistently been impressed with their willingness to share in our mission of improving lives today. We are pleased to have them as a regular contributor to our blog MS Conversations.

The majority of people who have MS are diagnosed when they are between 20 and 50 years of age. Because this coincides with the time when a person is most likely to be a part of the work force, people who have MS often have to consider their condition when making work-related decisions. Upon receiving an MS diagnosis, one of the biggest decisions they make may be whether or not to share this information with their employer and/or colleagues. While some people choose to be private when it comes to their MS, others may decide to be an “open book.” One of our patient advocates shared his experience about telling his employer and colleagues about his MS, and many of our community members shared their stories in response. We also asked our Facebook community members to share their experiences with us, and as you can see, people have very different stories to tell.

I’m hesitant to tell my employer and colleagues about my MS

  • Sometimes I will say I have a ‘neurological condition’ but I don’t go beyond that.
  • My experience is that most employers don’t want to hire a person with a condition that will increase insurance premiums. I would never tell an employer or future employer I have MS.
  • I think if I disclose my MS at work, I might lose my job. I can’t even work from home one day when I don’t feel well. I’m expected to be alert, healthy, and on top of my game. I feel like no one cares. As much as people can be compassionate, it is only to a degree. I need to be present, and I’m expected to perform. So, I play my role and I smile through pain and tears and I do my job. I don’t have much choice.

I had to make adjustments due to my MS

  • I had to disclose my MS because it could have become a safety issue at work, so my responsibilities needed to be adjusted accordingly.
  • I could no longer be productive and I became a danger to the public and myself. My employer knew before I did that I was having trouble. I drove an 18-wheel truck and set up POS networks. I just could not do the work anymore. Some of my employer’s family members had MS. The truth is I loved my work I had to come to grips with the fact that I just could not do it anymore. It’s important to be truthful to yourself about your capabilities at your job and then make a decision.
  • I had to go part-time instead of full-time three years after being diagnosed because of my symptoms and a number of relapses. However, I’m still trying to “stick it out” and remain employed because I find it quite fulfilling; if I don’t work, I get bored way too easily.

I wish I hadn’t said anything

  • Despite it being a private matter, even with HIPAA laws, word spread fast about my diagnosis at my work and people immediately started treating me differently.
  • When I told my employer, his response was dismissive, as if to say, “and what do you want me to do?”
  • My employer lacks compassion. Unfortunately, a few of my coworkers went out of their way to make it even more difficult for me.
  • I was essentially forced to leave, and I was then denied long-term disability benefits through my employer. Thankfully, I hired an attorney and eventually won.
  • I lost my job when my employer found out.
  • I lost my job of many years shortly after I was diagnosed in the 90s. Of course, they didn’t say my illness was the reason behind losing my job, but it was obvious to me. It was heartbreaking to lose a loved career after working so hard for so long.
  • I shared during my original interview to explain why I had balance issues. When a full-time position later became available, I applied and was told that they would not award me the position due to my MS. My boss said that if I became unable to work, they’d have no one to cover the additional hours. Although I sort of understood, it was blatant discrimination, and I reported it. My boss lied, saying she had never said that. I am still working there, as it is a job that I love with hours I am capable of handling.

Sharing my MS diagnosis was a positive experience

  • My boss is understanding, even though I can’t do everything I used to do.
  • My employer and coworkers have been very kind and understanding. It’s actually harder for me to tell people about my MS on dates than it was when I told my employer.
  • I’m glad I came “out.” My coworkers are very respectful, and I found out my boss’ wife also has MS.
  • Had I not told my employer what was going on, I would have missed out on being connected with the best MS specialist in my area. My boss happens to have connections who were able to get me in with my doctor, who was not accepting new patients at the time. Telling my employer was the best thing I ever did! Also, it is my personality to be very open, so it was never even a question in my mind. I do realize though, that in other positions, it might not have been the same situation, and I might have kept it under wraps if I knew it might mean keeping my job or not.

It’s important to note that there are employment discrimination laws in place in the US to protect you, particularly through the Americans with Disabilities Act (ADA). A legal resource such as the State Office of Protection and Advocacy, The Job Accommodation Network, or the Equal Employment Opportunity Commission (EEOC) may also be able to assist in helping an individual to determine what rights they have regarding disclosure, workplace accommodations, and/ or determining whether discrimination may have occurred after a disclosure is made. It is unfortunate that some people have had negative experiences when sharing their MS story with employers and/or colleagues. One can hope that this will improve over time, especially with an increasing awareness of MS.

Have you told your employer that you have MS? What was your experience? What advice would you give someone with MS (or any other chronic condition) regarding disclosing this information?

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My Silent Hero

By: Sheryl Skutelsky

After years of having every part of my body in pain at various times through my twenties, I’ll never forget the day in October 2001 when I finally heard those words, “You have multiple sclerosis.” I didn’t yet really know what those words meant, but I was relieved to finally have a name for what doctors had been telling me for years was just stress.

I went home that day to look MS up on the computer, and I have never stopped learning. Knowledge is power, and I truly believe that my attitude has a great deal to do with how I live my life with MS.

I was very excited when I was offered the opportunity to write for MSAA because it meant I could reach more people with the valuable lessons that I’ve learned over the years.

I’ve been blogging about MS now for years, having covered topics that range from explaining what MS is all about to how to deal with summer heat. However, I have never written about the person that has been my rock through all my ups and downs.

My partner not only has to imagine what it’s like each day for me to deal with pins and needles, numbness, shooting pain, aching, dizziness, nausea, and overwhelming fatigue, but she also has to live with the same uncertainty of waking up each day and not knowing if we can do the things that we had planned. She is the only one that truly understands how I can look so good on the outside and feel so miserable on the inside. She gets it when I have to cancel plans because I did too much the day before.

When we met, I was relatively healthy. She did ask me what hurt every day. It got to the point where she asked me if my left earlobe hurt because she was just trying to find some part of me that didn’t hurt, but she didn’t sign up for a chronic disease. That news came as a shock to both of us.

Thanks to MS, I’ve learned to truly take one day at a time. I wake up grateful for each day that I can walk, but I also wake up grateful that I have someone in my life that will stand by me no matter what. It would do us all good if we remembered to let our significant others know how much we appreciate all that they have done for us by sharing in living with the uncertainty of life with MS.

*Sheryl Skutelsky, diagnosed in 2001, has learned how to live positively with multiple sclerosis. Sheryl’s passion has always been graphic design. Her symptoms have become an inconvenience to her work, so she now uses her skills and creativity to reach out to others about MS. Sheryl is a patient advocate speaker for Biogen Idec. She also writes for Healthline.com, and she is an Internet radio host with her own show, Fix MS Now. Check out her Fix MS Now page on Facebook which has more than 10,000 followers. You can help raise MS awareness one “like” at a time by visiting: http://www.facebook.com/fixmsnow.

 

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Mining the Web for MS Resources

By: Matt Cavallo 

**Disclaimer: For any new or worsening MS symptoms, please contact your doctor immediately**

The internet is full of good (and not so good) information about multiple sclerosis. There are trusted sources, personal blogs, and social support groups regarding MS. Like everything else in life, when seeking more information about the disease, you must consider the source. The following blog will discuss some online traps that I have fallen into and how to avoid them.

In my mind, a good site for healthcare information should never promise a miracle or solicit patients for money. For example, I was following a very compelling Facebook thread posted in an MS support group linking to the story of a patient. I’m a sucker for a good story, so I started reading about this person and how they overcame all of their MS symptoms. At the bottom of the page, there was a link to their “miracle treatment,” and it brought me to a multi-level marketing website ad for some vitamins.

They drove me to the site with a good story, but their promise of a cure for MS was way off base. Multiple sclerosis is a chronic condition with no known cure, so to promise the people who click on this website a cure is false advertising. Be skeptical of buying any supplement that is either not prescribed to you by your doctor or that you have not discussed with your doctor prior to purchasing. This goes for assistive devices, as well. Before considering any assistive devices, contact your doctor or insurance company to see if the device is approved. You may get an idea from a website, but by going through your doctor and insurance company, you may find that the device, or a similar device, is covered.

As for trusted information, my favorite site is MSAA. In fact I like them so much, I am a contributing blogger for them. I found MSAA because I was looking for educational material to help explain MS to my young boys. What I found was a free picture book that I read to my boys that helped explain daddy’s condition. I found other resources, like their online Relapse Center. Every resource on the MSAA website is evidenced-based and peer- reviewed, so I know that the information is coming from a reliable source.

Another source for MS information that I trust is Healthine.com. Healthline takes complicated medical terms associated with MS and other chronic illnesses and puts them into slideshow format in words that are easy to understand. They also have great weekly columns from fellow MSAA blogger Jeri Burtchell and provide links to MS resources. MSAA and Healthline are my two personal favorite websites to find objective, clinically reviewed information about MS.

Social media is also a great place to find MS support groups and information about the disease. I belong to several social media support groups where members interact online. If you are going to engage in these activities, you must keep in mind personal biases. Participate in an online support group for support, but not for medical advice. These groups are great when you are having a bad day and want validation from your fellow MSers, but I have also seen solicitations or treatment recommendations based upon personal bias. Remember, you and your doctor should make all treatment decisions together, and what you read in an online forum may not be entirely accurate.

The internet is a great place to mine MS resources. There are trusted sources, like MSAA and Healthline, great personal MS blogs, and social media support groups. Just remember to be aware that some of these sites may be trying to solicit, not support you. Any research-based article will say something to the effect of “clinically reviewed” or have a clinical reviewer in the credits. Any website that promises you a cure is a red flag to stay away.

As a person living with MS, the best thing you can do is educate yourself to the disease and others’ experiences living with the disease. The internet is a great place to find resources, but make sure that you can trust the source. Let me know if you come across a good MS site that I haven’t mentioned. Happy mining!

MS Web Resources:
MSAA – http://www.mymsaa.org/
MSAA Relapse Resource Center – http://relapses.mymsaa.org/
Healthline Multiple Sclerosis Center – http://www.healthline.com/health/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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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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You Know You Have MS When…

word cloud

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 ____”?

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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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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.

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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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