MS Clusters – How many of your friends and/or family also have MS?

There has been a great deal of research examining the role of genetics in the development of multiple sclerosis over the years. The current understanding is that MS is not directly inherited, however, genetics appear to play a role in increasing a person’s risk for developing MS.1 Experts currently believe that those who develop MS have inherited something in their immune system that makes them more reactive to whatever is causing the immune system to attack myelin. It is possible that something in our environment, potentially viral or bacterial, triggers the autoimmune response that leads to MS in a person who has an inherited susceptibility in their immune system. Because so many questions remain, we decided to ask our Facebook community if they are a part of an MS “cluster,” where multiple friends and/or family members have MS. Over 170 people responded, and here’s what many of them had to say!

Several people in my family have MS

  • My sister had MS. I have it now. She had PPMS and I have PPMS. There were 7 MS cases within 2 blocks of where I grew up. I have heard that genetics loads the gun and the environment pulls the trigger.
  • My dad and his brother and sister all have MS; that’s 3 out of 5 siblings.
  • My sister and I were both diagnosed with MS this year, one month apart. Interestingly my sister is adopted, so we are not genetically related. We both want answers. It’s so tempting to blame something environmental. No one else in family has ever had it, and my twin brother is fine.
  • I have two kids and two cousins with MS!!
  • Two of my maternal grandmother’s cousins, my mother, her sister, my father and now myself. We all live in Victoria, Australia, which is quite cold and has higher rates of MS and Vitamin D deficiency than almost all the rest of the country. ‪None of the neurologists we see had ever come across such a “cluster” before
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  • ‪I’m the 6th cousin on my father’s side of the family to be diagnosed with MS.
  • My dad, his sister, my sister, my half sister and I all have MS. That’s 3 of 5 kids (2 boys, 3 girls) with the same father that have MS.
  • My aunt has it and my great grandmother died from it. I believe my lifestyle in my 20’s was the ultimate trigger. But eating a mostly vegetarian diet and drinking tons of green tea has helped me in more ways than I could have hoped for.
  • I’m the third generation in my family to have MS.
  • I have MS, was diagnosed in ’87, but in retrospect I’m pretty sure I’ve had it since my early 20’s. In 2005 my daughter was diagnosed at 25. My family was puzzled that it isn’t supposed to be hereditary! Then in 2007 my husband and her father were diagnosed. He and I both grew up in the same town; maybe its genetic and maybe environmental?
  • I have 2 cousins on my mom’s side that also have MS. I’m the 3rd to be diagnosed.
  • I am the 4th in 3 generations that we know of.
  • I’m 55 and I’ve had it since age 30. We think my grandmother on my dad’s side had it, but she passed away in 1983. Now one of my daughters has it and one of my nieces has it; that’s it for now.
  • My daughter was diagnosed at age 16 years old, and 5 years later I was diagnosed as well.
  • My mother’s cousin, first born, had it. Her brother’s first born had it, and I, her first born have it; my brother’s first born has it. All were/are males except for me. Is there a first-born child link?
  • My sister and I both have MS, and we are the third generation to have this in our family.
  • My friend has 69 first cousins, and 19 of them have MS.
  • I have MS, my mother has MS, and her mother had MS and died from complications when she was 46 years old.

There are a lot of people who live near me who have MS

    • There isn’t a “cluster” in my family, but there is in my neighborhood. The house on left, house on right, house across street, and me – each has someone with MS. That is my whole block.
    • My sister had MS, but no one else in the family going back 10 generations had it. HOWEVER, a woman on the next farm had MS and now a young woman on the closest farm to ours has been diagnosed with MS; that’s in a community of 40 people.
    • I’m the only one in my family. Three of us from a very small country town who went through primary school together have it.
    • My co-worker had MS, then I had it, then another co-worker got diagnosed…all while active duty Air Force serving in same building. It’s a very interesting connection.
    • There’s a cluster here in northern California.
    • I grew up in the town of Tonawanda in Western NY. It’s located in between Buffalo and Niagara Falls. Many people I went to school with have MS.
    • I don’t have a family cluster, but 3 of us, all female, same age, lived on same block within 4 houses of each other, have MS. There could be more that we just were not in touch with after moving away. We were all diagnosed in 2005.

I’m the only one in my family who has MS

      • No one in my family on either side has MS.
      • I have it, but I’m the only one in my family. I was told that MS wasn’t hereditary.
      • I am the only one with MS. Diagnosed at 33 and I am 40 now. Praying no one else in my family ends up with it.
      • I am the first in my family. We went way back and couldn’t find anyone.
      • My dad was the first and only in our entire family.
      • I am the only one in our huge family.
      • I was told that MS is not hereditary?
      • I was told that MS runs in the family, but usually skips a generation; I am the first on both side of the family to ever be diagnosed with MS. I was diagnosed in 2007 when I lived in CO – which has the most people to be diagnosed with MS.

There are multiple autoimmune or neurologic diseases in my family

    • My mother has Crohn’s Disease. My youngest son has Type 1 Diabetes, my eldest has allergies, and I have MS.
    • I’m the only one with MS, but I also have neurofibromatosis (NF). I have over a dozen family members with some type of neurological problem. I have a nephew who has NF and Parkinson’s, and several family members who have epilepsy. I am 58 and was diagnosed with MS about 14 years ago. I’ve had NF all my life. I passed it on to my son and daughter.
    • I am the only one in my family to have MS, but my sister has Lupus.
    • My father’s three cousins (MS), his sister (ALS), he (peripheral neuropathy), my husband (MS), our daughter (MS – diagnosed at 10!)!!
    • As far as we know, my middle child, my daughter, is the only one to have it. My mother’s family all came from Sweden, which is a hotbed for MS. I don’t fully understand a lack of Vitamin D being a factor. We live in PA where we do get a lot of sunshine.
    • Four out of 6 of my siblings have MS, and my mother died from ALS.
    • My grandma had MS, my aunt has Lupus, and I have Neuromyelitis Optica.
    • I was diagnosed a year after a maternal cousin was diagnosed with MS. My cousin’s mom had severe RA, and my mom’s fraternal twin has Lupus.

Reference:

1. Aronson KJ. The epidemiology of multiple sclerosis–who gets MS and why? In: Kalb R, ed. Multiple Sclerosis: The Questions You Have – The Answers You Need. 5th ed. New York, NY: Demos Health; 2012:21-27.

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Having a Stress-Free Holiday Season When You Have MS

By: Jeri Burtchell

Each year, I judge how well prepared I am for the holidays by the way Halloween plays out. When I saw my son donning the same scary mask we bought several years ago, I realized I’m as ill-prepared as ever. We’re lucky it still fits, I think to myself as holiday dread settles squarely on my shoulders.

The problem with his costume is not that we aren’t creative, it’s just that life is busy and time slips through our fingers like greased marbles these days. We end up making last minute plans and this Halloween was no exception: get the plastic pumpkin off the top of the fridge and start searching the house for that mask (two hours before Trick-or-Treat officially kicks off). I’m not creating the perfect childhood memories for my son, I fret to myself as I look under the bed for the face from Scream.

The limitations that my MS fatigue and reduced walking ability have placed on me are showing. I’m not looking forward to Thanksgiving and Christmas with the same enthusiasm as I once did. I’m filled with angst as part of me wants the ultimate “joyful” experience, while the other part just wants it all to be over.

But the holiday season is stressful for everyone. The difference is some people thrive on the stress, which they call “anticipation.” But others like myself are filled with dread. Ever since I was diagnosed with MS in 1999 it seems like I stopped looking forward to the time between Halloween and New Year’s Day. I think it’s because I worry about stress triggering a relapse. And then part of me feels guilty because the children in the family aren’t getting the full “magical” experience.

While I do face physical challenges, my MS isn’t the only factor shaping our family holidays. Mom is 91, and though she’s still undeniably the sharpest knife in the drawer, she doesn’t get around as easily as she once did. Still other family members are living with everything from lactose intolerance to diabetes which influences the dinner menu.

But we are managing. Together our family is learning to adjust to our new collective “normal”. We’re redefining what our get-togethers look like. The emphasis is on comfort and ease while downplaying commercialism. So what if the tree isn’t up or we don’t have a full turkey dinner with all the trimmings? We can define the celebration on our own terms.

The holiday dinners will be potluck so that we can each focus on one dish and prepare it ahead of time. Nobody will be banished to the kitchen and make-ahead dishes can be prepared when the cook (or baker) is feeling up to it.

With dinner prepared in advance, we’ll be free to enjoy each other’s company. The conversations, the laughs, the squealing children, and the photo ops will fill our memories of the day.

If Mom has to take a nap or I have to go lay down for a while, that’s okay. Everyone knows we both have our limits.

At Thanksgiving we’ll draw names for Christmas gift giving. Everyone ends up with a present but only shops for one person instead of ten. With a $20 limit and the convenience of online shopping, we can eliminate the stress of holiday crowds. We’re trying to make it more about the get-together and less about “what-did-I-get?”

Over the past fifteen years, I’ve come to learn a lot about managing my MS. I need plenty of rest, I need to eat right, and I need to exercise. But it’s just as important to reduce the stress in my life. Not only is it bad for MS, but for everyone’s health in general. By reducing the amount of effort (and stress) it takes to pull off a family gathering, we’re really looking out for our health.

The holidays should be about family, love, togetherness, and appreciation for every positive thing in our lives.

So when next year rolls around and my son is reaching for the same old scary mask at Halloween, I’m going to go a little easier on myself. The mask can be a new tradition, a symbol of how we can let go of society’s expectations. It will signal the start of a stress-free holiday season and–with the help of my family–I know we can do this!

References:
http://www.healthline.com/video/managing-multiple-sclerosis

*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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MS in America – The Use of Oral Therapies for the Treatment of MS

In our September article we shared some of the key findings from The MS in America Study (MSIA), highlighting some of the ways that multiple sclerosis (MS) impacts the everyday lives of those with this condition. In addition to collecting information about the impact of MS, we also asked people with MS to tell us about their treatment, including what they’ve tried, if they were satisfied, and what they are currently taking for their MS. Because oral therapies are relatively new to the treatment armamentarium, we decided to take a closer look at the use of oral therapies for MS in our community.

As one would expect, infusions, interferons, and other injectables are still used by a majority of MS patients. However, results from MSIA, which was completed by more than 5,000 eligible respondents, demonstrated that oral medications for MS are used by nearly one third of patients who have relapsing-remitting MS (RRMS), and more than 50% of people using injectables are considering switching to an oral medication!

We asked all survey participants how long they have been on their current therapy, and as one would expect, those who were taking oral medication for RRMS reported being on that treatment for a shorter period of time than those who were on other treatments (like injectables or infusion).

Lenght-on-time-MS-patients-have-been-on-therapy05

Interestingly, the vast majority (80%) of people who had ever taken an oral therapy for MS reported that they were still taking an oral MS treatment.

We also asked participants several questions about switching therapies. Most of those who reported switching from injectables noted that they did so due to needle fatigue and/or issues of tolerability. Other reasons included seeking better efficacy, convenience, safety, and cost, among others.

Reasons-why-MS-people-switch-to-oral-medication08

Many MSIA participants who had not recently taken an MS treatment reported that they had started anew with an oral medication due to a variety of reasons, including dislike of needles, and disease progression, among others.

Finally, of the MSIA respondents who were still taking injectables to treat their RRMS, nearly half (48%) said they have considered switching to an oral therapy. While much remains unknown about the long-term use of oral therapies for MS, it is clear that oral medications for MS play a critical role in how this condition is treated. For more results from the MSIA special report on oral treatments for MS, click here.

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MS Means Managing Your Energy

SherylBy: Sheryl Skutelsky

It’s Football Season! So, what does that have to do with MS? Well, in my case an unexpected wonderful opportunity to travel to meet my son to see my very first live NFL game. This opportunity truly once again brought to light the ways in which I have to live my life a bit differently from everyone else.

My dad wanted a boy, but instead he got me, an only child. So, I was placed in front of the television from as early as I can remember to watch the Jets play. I was taught every rule and regulation.

I’ve lived my entire life in New York, but for some reason my son had been a Packers fan from as early as I can remember. He dreamed of getting tickets to Lambeau Stadium for over 20 years. He finally had tickets for the Packer’s first home game against the Jets, but he broke up with the girl that was supposed to accompany him.

I get a call from my 31 year old son, now living in Houston, asking me if I would like to meet him in Green Bay for my birthday to finally get to see my Jets play live. Instantly I was ecstatic and panicked at the same time!

MS means managing your energy to avoid overwhelming fatigue. I didn’t have enough warning to rest all week for this trip. I also remember my son telling me that as a teenager he often felt that I wasn’t there for him; I was always too tired. I hadn’t been diagnosed yet, and my son rationally understands now why I was always tired, but I didn’t want to let him down this special weekend.

Well, the Packers beat the Jets, and I came home a Packers fan, but more importantly, my son and I had such a special weekend together. He had tattooed the MS logo on his ankle for me several years ago which meant a lot, but this weekend he also showed me that he truly understood how I had to live a little differently with MS.

My son did all the driving, took care of me, kept me out of the sun as much as possible, and made sure I got time to rest. We had such a great time together in Wisconsin, and my son told me how proud he is to tell people how his mom doesn’t let MS stop her from enjoying life. After all, what more can a mother ask for?

*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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Inside My Bubble, Prepared for Anything

By: Jeri Burtchell

I like to think of myself as a planner. Now, before those of you who know me collapse into uncontrollable laughter, let me explain. I don’t plan as in “wedding planner” or even use a “day planner.” In truth, I’m a perfect candidate for one of those intervention reality shows.

I never said I plan in a structured, well thought-out manner. No, I’m motivated by more of a panic-driven, deeply troubled, “what-if” thought process I learned from my mother. I have cultivated an emergency response for every possible scenario that could come along in life. I have prepared for catastrophic events that may or may not ever happen.

Mom and I have our fire season evacuation box, our hurricane season supply stash, and when I travel I have a whole suitcase packing ritual designed to make life easier in the event that things go wrong. When connections are missed or there are bathroom emergencies, I know I can count on the contents of my purse or roller bag to rescue me.

I like to think of this as part of my MS Bubble. Since I was diagnosed in 1999 and have come to realize how unpredictable it can be, one small thing that gives me solace is having my MS Bubble.

Jeri blogIt’s a sort of invisible force field I’ve visualized that surrounds me. Inside I have everything I might need to deal with unpredictable events. Things that define my comfort or bring me joy are always close at hand.

Others might say my bubble is nothing more than my “comfort zone,” and in the classic sense, I guess it is. When I’m working, it’s right here at my desk. In my bubble/comfort zone, I keep the necessities of life. I have everything from a box of tissues to device charging cables.

While others look at my workstation and see a chaotic mess, I see a symphony of bubble-friendly instruments, each playing a part in bringing me comfort. I choose to forgo the aesthetic appeal of minimalism. I’d rather have clutter, as long as it’s purposeful clutter. Who can say I won’t need that thermometer mere inches from my keyboard?

My sweater stays on the back of my chair, always at hand in case I get chilled. Slippers are close by.

My smartphone is the most indispensable tool in my bubble. It connects me socially, delivers my mail, reminds me to take medications, tells me what the weather is like outside, and will distract me with games if I let it.

The point is, I have made my life as comfortable as I can, given the unpredictability of MS (and of life itself!). Although my bubble does not appear to be in any semblance of order to the untrained eye, it works for me.

I haven’t “planned” my bubble this way as in planning-a la-Martha-Stewart. It is only an ever-evolving collection of habits and things that aid me in everyday life. So I am soothed by the knowledge that, even when my MS symptoms are acting up, my MS bubble is always there, ready to comfort me.

Perhaps it’s eccentric of me to imagine this “bubble,” but visualization is a coping mechanism that works for me. I once got through the claustrophobia of an unmedicated MRI by imagining I was at the beach. My “vacation” was so enjoyable I was almost sad when the MRI ended. The protective “bubble” just works for me.

If you can develop coping strategies – whether or not they involve visualizing your own bubble – whatever works to keep you calm, centered, comfortable, and in a joyful state of mind is all that matters. So think about your situation and what things bother you the most. Then go about “planning” to deal with them ahead of time.

Create your own comfort zone, your own MS Bubble.

And if you’re a friend or family member of someone coping with MS, you might want to consider memorizing these 12 things you should never say to someone with a chronic condition.

But please add one more: Never say, “I took the liberty of cleaning up your desk. Hope you don’t mind – it was a real MESS!”

Why, that would just burst my bubble!

References:
Photo credit: Jeff Kubina, used with permission under the Creative Commons License
http://www.healthline.com/health-news/ms-12-things-not-to-say-022814#1

*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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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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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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