Stories to Inspire: MS Client Swims for MS and More

By Peter Damiri

“I actually hugged my doctor when I found out I had MS,” explained Simone Sanders, 29, of Seaside, California. “After having so many symptoms for so long, I was relieved they found out what was wrong with me and that something could be done to help. But then, I was also frustrated that I had a chronic illness that had no cure.”

Simone struggled with a myriad of unexplained medical issues since her early 20s. Following the onset of several severe exacerbations, she underwent MRI testing and received the official diagnosis of multiple sclerosis.

“I lost my vision, couldn’t walk, and lost my job,” recalled Simone. “I couldn’t drive or go anywhere, wasn’t active, and became very depressed. But I found support from MSAA as well as talking with others who have MS. They pulled me out of my depression and helped me realize that I can accept my diagnosis of MS but do not have to be crippled by it.”

Now married to an Airman First Class in the United States Airforce and looking to start a family, Simone has since regained the majority of her vision and ability to walk, but still struggles with daily fatigue and a variety of periodic MS symptoms. However, rather than focusing on the negative, Simone maintains a powerful fighting spirit as she strives to improve her physical and emotional wellbeing through diet, exercise and a deep, personal commitment to help others with MS.

“I try to be as active as I can, running 5K charity races with my cooling vest from MSAA – which has been a lifesaver. I’m always looking for new ways to help the MS community and was happy to find Swim for MS,” said Simone.

“I had a passion for swimming ever since I was eight-years-old and was really good at it. After my diagnosis, it made sense to go back to swimming and exercising in the water, especially when I had access to a pool. Then when I heard about Swim for MS I said, this really fits with my interests and passion and it’s for a good cause for people like me.”

With the goals of swimming 1,000 laps in three months and raising $1,000 for MSAA, Simone began her Swim for MS challenge in late March. She bases her ambitious goal on her average swim of 10 laps per day, but also recognizes this can fluctuate due to her struggles with fatigue and other MS factors.

“Some days are really bad days and even some weeks are bad, but when I’m in the pool I know that I can push myself to do my best,” said Simone. “The coolness of the water helps keep me from being overheated and I can float to rest when needed.”

Recognizing the benefits she receives from her cool suit, Simone would like to dedicate donations from her Swim for MS fundraiser to help support MSAA’s Cooling Program as well as other vital services. She recently enlisted the support of her mother to help recruit donations from family members and plans to promote her Swim challenge to her new military family as well.

“Even though my goal is to swim 1,000 laps, I feel accomplished no matter how many I finish because in spite of everything I’ve been through, I’m still able to swim,” Simone said. “I tell myself every day to have courage and have faith. Have the courage to get up in the morning and have the faith to get through the day, and do the best you can.”

MSAA would like to thank Simone for granting us this interview, choosing to support the MS community through Swim for MS, and inspiring all of us to stay positive and keep fighting every day. To visit Simone’s webpage and support her Swim for MS challenge, please visit: http://support.mymsaa.org/goto/simoneswim. For more information on aquatic exercise and MS or how to start your own Swim for MS fundraiser, please access www.SwimForMS.org.

Simone Sanders - Copy

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Relapses: Not Always Easy to Define or Diagnose

With a majority of MS patients diagnosed with relapsing-remitting MS, the idea of defining and recognizing the signs of relapse becomes very important. This topic can cause both MS patients and neurologists to debate the issue, and some of the lines can be blurry, to say the least. The official definition of a relapse is as follows:

“During a relapse, inflammation is occurring along the nerves and the myelin, causing patients to have a temporary worsening or recurrence of existing symptoms and/or the appearance of new symptoms. This can range from a few days in duration to a few months, followed by a complete or partial recovery (remission). Acute physical symptoms and neurological signs must be present for at least 24 to 48 hours, without any signs of infection or fever, before the treating physician may consider this type of flare-up to be a true relapse.” (MSAA, 2016.)

The new physical signs and symptoms must be separated from a previous relapse by at least one month. As you can see, this definition leaves a great deal of room for interpretation, and every neurologist responds to relapses in very different ways.

Some neurologists treat each relapse with steroids, and do not perform MRIs each time. Steroids are anti-inflammatory medications, almost like “Mega Ibuprofen.” Steroids are very effective at calming the inflammation that causes MS symptoms, but they come with a load of side effects that always need to be considered and weighed. Treatment can be done with IV steroids (Solu-Medrol,) or with oral steroids such as Prednisone. Other neurologists insist on performing MRIs before ordering steroids. Some neurologists prefer to save steroids for only the most severe relapses such as weakness and vision loss, and do not use them for sensory symptoms such as numbness and tingling. It is very much a matter of opinion, and there truly is no “right or wrong” answer in this area.

My own neurologist does not perform MRIs for my relapses, because he does not believe that there is a clinical correlation between the MRI and clinical symptoms. A clean MRI does not necessarily indicate that we are not experiencing relapse, and vice versa. It is also possible that we may be experiencing a pseudoexacerbation. Pseudoexacerbations are temporary increases in symptoms caused by external factors such as heat, which go away after a short period of cooling off. These can also be the result of infections and fever.

I have had RRMS for almost 7 years, and in that time I have experienced very active disease. On a daily basis, I experience new and varying symptoms, ranging from buzzing/tingling/numbness, to burning/pain/spasm, to weakness/vision loss/bladder issues/cognitive issues. These symptoms come and go very unpredictably, and it is truly maddening. The one thing I have learned is that I can’t allow myself to panic if I experience something new, because most often these symptoms with leave as quickly as they appear, within a few hours. However, if they do persist beyond 24-48 hours, make sure you contact your neurologist and get advice, because if there is something you can do, you should! I am always grateful to get my neurologist’s advice in these situations, because it can be very difficult to assess our own symptoms in an unbiased way. Don’t ever hesitate to ask for advice in this area, because it can be very confusing for even the most experienced MS patient!

*Meagan Freeman was diagnosed with RRMS in 2009, at the age of 34, in the midst of her graduate education. She is a Family Nurse Practitioner in Northern California, and is raising her 6 children (ranging from 6–17 years of age) with her husband, Wayne. She has been involved in healthcare since the age of 19, working as an Emergency Medical Technician, an Emergency Room RN, and now a Nurse Practitioner. Writing has always been her passion, and she is now able to spend more time blogging and raising MS awareness. She guest blogs for Race to Erase MS, Modern Day MS, and now MSAA. Please visit her at: http://www.motherhoodandmultiplesclerosis.com.

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Meet New MSAA Guest Blogger Lauren

By: Lauren Kovacs

My name is Lauren Kovacs and I am 41. The stress of moving from California to rural Virginia poked the MS monster for the first time at age 16. My official diagnosis didn’t show up on stage until I was 21.

I was a pediatric patient with optic neuritis. This meant no learning to drive, no depth perception in gymnastic, and crashing into hall walls at school. I was not in a good place, but the MS monster had only stirred.

After nine months, my vision returned. Life went on. I went to college and made the university’s cheer team. MS was never the diagnosis at 16.

I worked part-time, took a full load of classes, and was a college athlete. The summer before my senior year, after a very tiring and hot week at cheer camp, I got sick. I rode home on the floor of the student-athlete van. I unknowingly had poked the monster again.

The next day, I went numb from the neck down. So began my quest for an answer. Some thought it was a virus and others thought I had been dropped in cheerleading camp and had a slip disc. I stumped all the athletic doctors for the university’s athletes. Cool. The best was a civilian doctor who told me I had a stroke and sent me back to campus with muscle relaxers.

I went back to my original neurologist. An MRI and other tests came back showing MS. The doctor told me not to research it. I was sent back to school. Confused, alone, angry, and tired was the casserole I was served. Newly diagnosed and alone, questions swam in my head and some chocolate in hand, as comfort.

I didn’t make it to nationals for UCA and I felt my teammates were more worried about re-doing the routine without me than my devastating diagnosis. Some even accused me of faking in order to skirt practice.

I kept going. I pushed on. I graduated, got a job, and married my sweet heart. I saw a new doctor who put me on Avonex. I had baby boy one. Four months later, I was hit with a horrible flare leaving me numb from the neck down again. After slithering around on the floor with a new baby, IV steroids were prescribed. Life went on. I did Appalachian clogging and was very active. I started figure skating instead to combat the heat.

Baby boy two arrived without any MS issues at all, except my fall down the stairs, which I can blame on MS. He was premature with health issue. A toddler and a sick infant meant stress. I finally changed doctors, after five years, because he refused to prescribe anything, but Avonex. He kept telling me I would get used to it.

The new doctor prescribed Copaxone, not long before we moved to North Carolina. I took Irish dance lessons, once we moved. The two boys were doing well. Heat, fatigue, and stress were manageable. The monster appeared to be contained.

Baby boy number three arrived and that began my slow decent. The monster was waking up. I was able to nurse for eight months. I was thrilled. IV steroids forced me to end that scene. However, they did their job and I changed doctors again. That is five neurological, if you are counting.

I had a new doctor who finally believed three healthy boys and me. Life was good, too smooth really. When my youngest was four, rocks were being thrown onto my path. The Betaseron was no longer working and I began sporting a cane. The monster was fully awake.

No worries, I can adapt, I thought. We took a Disney cruise with friends and when I had trouble walking onto the boat, I knew things were changing. I sat and waited for a cast-member to get a wheelchair. I held back tears, but the cast-member said I would enjoy my trip more. I did, but I felt crushed.

By the time my youngest was in first grade, I used a walker. I was also head cheerleading coach at their school. I was officially handicapped and life was getting tougher.

Here I sit, now. I only use a walker in the house. I crawl on my hands and knees, if I am not steady. I have the kids make dinner and there have been times I instruct from face down on the floor. But, I do it and I fight.

MS is a battle and you must never give in. Being realistic and humor go hand in hand with MS.

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You and Your Neurologist: One of the Most Important Relationships

By: Meagan Freeman

Finding an excellent Neurologist is one of the first things we need to do after diagnosis with MS. It can be very difficult to choose a random name from a list of covered providers from our insurance companies, and without a solid recommendation from someone we know, we often need to take a “test drive.” Patients and providers are much like any relationship we have in life: Some personalities are a perfect blend, and others will never work together. It is incredibly important to seek out a provider who is not only medically competent, but also a good fit for your personality.

I find that some providers are cold and distant, only seeing patients as a disease process. What about the mind? We are so much more than a body. Providers should always see the patient as a mind-body unit, addressing the full scope of chronic illness. Psychological and emotional symptoms are common, and no one should leave an appointment feeling dismissed.

I am a family nurse practitioner, and we are trained from day one to see the humanistic side of medicine, to view the patient as a whole being, rather than the sum of the parts. The body cannot be healed without addressing the spiritual, emotional aspects of the human being. After being diagnosed with MS, I appreciated this manner of teaching more than ever before.

There is an intricate, indivisible connection between the body and the mind, and treating only one while ignoring the other will never prove effective. There is, what we call in medicine, an “emotional overlay,” to almost every physical issue. Whether this means that the condition is purely psychological, or whether the mind is reacting to a physical issue (anxiety, panic attacks, depression,) the mind must always be taken into consideration when treating every patient.

Our society is very quick to assume that modern medicine has all the answers, a secret book of treatments, available only to those who have attended medical school. This magic book contains all of the recipes for treating illness, and is kept hidden, under lock and key. The providers of the world are assumed to have the ability to fix anything, treat anything, and if they do not offer a fix, they are assumed to be withholding treatment intentionally.

I can tell you, this is not the case. One of the most shocking things I learned while transitioning from a registered nurse to a nurse practitioner was the absolute limitation in options we have as providers. We only have a few things to offer, a few laboratory tests, an x-ray or two, a few medications that may or may not be effective. Most medications also go along with an enormous list of potential side effects that have to be taken into consideration. Many prescription medications are not necessary, and can lead to a variety of new problems. The risk versus the benefit of any treatment needs to be considered. Treating physical illness is not only a science, but also an art; and sometimes, providers simply run out of ideas. Every possible treatment option has been exhausted, and there is simply nothing further to offer. I find that patients are shocked when this is the answer. “What do you mean, there is nothing left to do?” Sometimes, the answer is just that, and we are left trying to cope with our “new normal,” whether it is pain, numbness, weakness, or any other symptom.

When you visit your provider, keep in mind that they may not have an answer for every question you have. Your provider is doing their best, I am sure; but the answer “I do not know,” is an acceptable one sometimes. I always trust providers who admit that they do not have an answer, because this is honesty. If your provider says, “Well, if you really want to take something you can try this…” this is code for- “you really do not need this.” Sometimes, in medicine, less is best. The minimalist approach to treatment is wise, and so many patients have been “overtreated” in recent years. Too many medications, wasteful, unnecessary diagnostic testing, and the resulting side effects and anxiety are major issues in medicine currently. Patients and providers need to take a moment and ask themselves, “Is this really a necessary test or treatment?”

Trust your body to be able to handle most minor issues. Your body is an intricate, well-constructed, dynamic machine that is much wiser than we are as health providers. Now and then, the body might need an extra hand at combating an infection, but not always. Listen to your body! Prevention is the key! Get your immunizations, get some exercise, eat healthy foods, and obviously avoid smoking and alcohol. MS aside, we all need the same basic advice on remaining healthy and living the best life possible.

Questions to Ask Your Provider at Appointments:

1. Do you feel that my disease is well controlled with my current medication?
2. If not, are there other medications available that you would recommend?
3. Do you recommend any other treatments for my current symptoms (alternative or traditional?)
4. How often do you recommend appointments and MRI?
5. Is there any new research that has become available since my last appointment?

Try to develop a relationship with your provider, and if you feel dismissed or ignored, it may be time to consider a change. Like any relationship in life, some people just don’t “click.” But in this case, your health is at stake; so don’t be afraid to find the right fit for you.

*Meagan Freeman was diagnosed with RRMS in 2009, at the age of 34, in the midst of her graduate education. She is a Family Nurse Practitioner in Northern California, and is raising her 6 children (ranging from 6–17 years of age) with her husband, Wayne. She has been involved in healthcare since the age of 19, working as an Emergency Medical Technician, an Emergency Room RN, and now a Nurse Practitioner. Writing has always been her passion, and she is now able to spend more time blogging and raising MS awareness. She guest blogs for Race to Erase MS, Modern Day MS, and now MSAA. Please visit her at: http://www.motherhoodandmultiplesclerosis.com.

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My Life with MS

by Shannon Loftus

I am a stay at home, work at home, home-schooling mom to the world’s most awesome child – my son Nathaniel. Yes, I have multiple sclerosis, and it does rule my life. But, every day that I wake up and can see my son and husband, can move my limbs, even if in pain, is another day I am thankful for.

I was officially diagnosed with multiple sclerosis in the fall of 2009, although the symptoms had been ongoing since I was a freshman in high school. With this diagnosis, I also found out I had a brain tumor that, of course, during all the diagnostic testing was the only other option for the symptoms I was experiencing. Fortunately, the tumor is on the pituitary gland, benign, and not growing. I recall that on the day I was diagnosed I had a laugh-attack right there in my neurologist’s office. Multiple sclerosis is not funny by any stretch, but I found the double diagnosis to be downright morbidly hysterical at that moment. What luck! Shortly thereafter came the diagnosis of epilepsy, followed by spinal stenosis. Despite all of these diagnoses, I struggle through it all with my head held high (sometimes), staying at home, working at home, and home-schooling my most precious gift that keeps me going – my son. I am also a co-leader of a multiple sclerosis support group here in my hometown. It is a pretty fun bunch of folks, MS aside!

MS has thrown a lot at me. I have been blind in one eye and half blind in the other, at the same time. I have been nearly unable to walk, hobbled and I use a cane more often than not. I have been hospitalized, and I can no longer function as the field archaeologist that I once was. I am losing the use of my left arm, and have left side weakness. The stenosis of my spine has made walking for more than a hundred yards nearly impossible. Standing, sitting, laying down are all painful.

I have adapted, not by choice, but out of necessity. MS sets the pace, so I shifted to private consulting from home, and while not my dream job, I am rewarded with a gift that I know I will be forever grateful for – as much time spent with my son as possible, the opportunity to watch him grow while my eyes still work, and the special time we get to spend snuggling up while he still thinks mom is cool, hanging out at the movies, and hitting the pool in the summer.

I have also experienced depression. I once laughed at the notion of MS and depression going hand in hand. I was so wrong and I was very humbled by my year and a half long journey through a tunnel of personal darkness. I now have immense compassion for those suffering depression, no matter the cause.

I am honored to be able to share with others my journey of life with MS. It is not always fun, but it is what it is. I try to find the humor in life, and frankly the trifecta of illnesses I live with provides a bottomless well of material in that regard. I would love to share the ups and downs, ins and outs, and the overall experience of what it is like to have MS. The disease affects each of us very differently, and I believe it is only through sharing our experiences that each of us finds comfort, solace, and the ability to keep fighting.

Be Thankful for the Day!

-Shann-

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My MS Journey

By: Matt Cavallo

As an author and speaker, I have had the privilege of meeting people living with multiple sclerosis at MS events across the country. One of the ties that binds us is that we’re all different. Sure, we experience similar symptoms, whether they be vision, balance, memory related, or other, but each of our journeys is unique.

Whether you are just starting out as recently diagnosed person living with MS or are a seasoned traveler living with the disease for many years, there is a website available with resources to help assist you on that journey, My MS Journey.

My MS Journey organizes MS resources in a central location to help assist you with where you are at in your MS journey. The resources are categorized in an easy-to-use, searchable format. The following blog is step-by-step instruction of how to find information on the site.

5 Steps for Navigating My MS Journey

Let’s say for example that you were newly diagnosed and wanted a resource on how to talk to family and friends. My MS Journey can help using the following steps:

1. Enter the following link into your internet browser: https://mymsaa.org/journey/
2. Click on the picture or heading for your particular journey, in this case Just Starting Out:

MyMSJourney

3. Click on the section header to expand the section, and then click on the hyperlink to open the resource that you would like to select.

juststartingout 4. A new browser window will open up displaying the resource information that you were seeking.

includingfamilyandfriends 5. When you have finished accessing the information, you can either close the tab or click the My MS Journey tab to return to the main site.

Additional Functionality
While My MS Journey is categorized into sections with content and resources to assist you in each step of your journey, the home page of My MS Journey has additional functionality relevant to everyone living with MS.

A. Site Preferences – allows you to control your font size preferences, access keys, and print options to make the site more accessible for you.
B. Helpful links – these links provide tools and resources to help you better manage your MS, like the MS Resource Locator and Prescription Assistance Programs.
C. MS Trivia – impress your friends and family with how much you know about MS by participating in the trivia section. Once you make a selection, the right answer will be displayed along with how others answered.

The front page also allows you to share this site on social media. Sharing this site is important because of all the great resources provided by MSAA to help each one of us living with MS on our journey. Sharing resources that help each of us on our journey helps strengthen the MS community. Thank you for reading and I hope you take advantage of all the great resources that MSAA and My MS Journey have to offer!

*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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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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Adding Up MS: Hey, What Does That Number Mean?

Two doctors looking at brain MRI

Did you know that estimates indicate that as many as 2.5 million individuals across the world may be living with MS currently? MS is generally referenced as a “rare” disease, but that number doesn’t seem small to me!

Where you are living in the world will determine a number of factors, including what diagnostic tools are available to accurately evaluate and diagnose a person with MS. After all, those figures might be harder to estimate in countries that do not have trained neurologists, MRI equipment, and other supportive medical testing. If people are not diagnosed or seeking medical care, then they are unlikely to be “counted” or projected into estimates.

Another major challenge is that many countries – including the United States – do not have an official MS Registry, which is a legislated or mandatory accounting of each person diagnosed with a particular condition within a particular country (or other geographic area such as a state). Without a registry, scientists and epidemiologists must rely on other factors to try and “guestimate” how many people in any particular area may be diagnosed with MS. These types of disease registries do exist in the United States for other conditions, such as ALS (Lou Gehrig’s Disease).

Countries such as Denmark do maintain an MS registry. Since the 1950’s Denmark has collected specific information on anyone diagnosed with MS. This type of registry has provided Danish researchers and scientists of other countries valuable information for clinical research and prospective studies. Hopefully someday the United States legislature may agree that a national MS registry could bring many benefits to individuals living with MS.

So, when you see that 2.5 million number, think of all the people who don’t see a doctor because they can’t access one or cannot afford medical care. Think of all the people who are diagnosed with something else because their physicians don’t have appropriate diagnostic equipment. Yes, researchers have tried to extrapolate an “accurate” number, but who is being left out?

When I hear that figure, I think, what does that number really mean, and how does that number impact the MS community? Does the lack of a registry leave researchers without critical information which could be collected to better understand the MS process and who is diagnosed with MS? Is less funding spent on MS research, including causes, treatment options, and individual quality of life and well-being because MS is perceived as “rare”? These are questions that cannot be answered because the true number of people living with MS is unknown, but it is still important to pose the questions.

For more information regarding projected figures of individuals living with MS around the world see the Atlas of MS 2013.

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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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Let Us Help You Help Others.

Help Sign Shows Lost In Labyrinth

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.

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