New MSAA Guest Blogger

Meagan Freeman

I am thrilled to join the MSAA organization as a guest blogger, and I would like to introduce myself. My name is Meagan Freeman, and I am a licensed family nurse practitioner, blogger, MS patient and mom of 6 from Northern California.

I was diagnosed with RRMS in 2009, after experiencing dense numbness of my right torso. This was numbness like no other I had felt, like my torso was not even a part of my body. I was in the middle of my Bachelor’s program in Nursing, working as a full time ER nurse, and a mom of 6 at this time. The diagnosis was devastating, and demotivating. Quitting school was something that I thought about almost immediately, and over and over for months. I tried to ignore those demotivating voices in my head. The ones that say, “you should just stop now. What is the point? Take the easy road, forget it.” I was halfway through my Bachelor’s program, should I quit? I was just going to end up in a wheelchair. Bedridden. Nonverbal. Just like my grandmother. What was the use of finishing school? What was the use of doing ANYTHING now? Images of my grandmother raced through my mind. My maternal grandmother was incapacitated in my memory, due to a long battle with progressive MS. These images were terrifying to me, and I pictured myself in that same state.I thought about quitting school many times, but fortunately I continued.

I finished by Bachelor’s degree in 2010, and began my Masters in Nursing/Family Nurse Practitioner program that fall. It was the greatest challenge I had faced since diagnosis, and I would not be allowed to take “short cuts” because of my MS. This was the first time in my life that I realized that my disease would not grant me any free passes. I would have to achieve and complete this program purely on my own, despite any illness.

An important lesson I learned during the 3 years of higher education I pursued as an MS patient was that we are capable of self -defeat. It would be so much easier to quit, right? On those difficult, painful, fatigue ridden days? It is so tempting to give in and take the easy road, and many people succumb to this path. It doesn’t require MS, either; many individuals find any excuse to give up and take the easy road. You must find that voice that encourages rather than discourages. Find that voice that will carry you through those days. Nothing worth doing is ever easy, so make the choice to be the hero of your own story. You have the ability, now you just need the psychological strength.

On my graduation day, in May of 2012, there was light. Spring, warmth, and brightly colored flowers surrounded me like a renewal, out of the cold winter and into the sun. Every detail of that day is frozen in my memory, never to be erased. The smell of the freshly cut grass, the slow march into the ceremony, the smiles. Like a wedding or the birth of a new baby, this was a day that would live in my mind for the rest of my life, though there was a sense of disappointment along with the accomplishment. There was a pre-graduation let down, and I knew that with the completion of this goal, I would need another. Yes, this was a successful endeavor, but what would be next? For now, I could not focus on anything but that moment. This was a day to spend celebrating, laughing, and feeling a sense of pure joy and relief. Why trouble myself with the future today? Today was a day just to be present.

After graduation, I began to practice in a primary care office as a nurse practitioner. I saw many patients during my day, managing chronic illnesses and performing physicals. I experienced the irony of being both a healer as well as a patient, and some days were not easy. I also began to write more frequently, which was always my lifelong passion. I started to blog, and it was incredibly therapeutic to get feelings down on paper. Today, I have the opportunity to blog weekly on my website, and guest blog for several wonderful organizations. I am happy to be able to pursue these things, and with the support of my husband and family, I hope to continue for many years to come.

Being the “hero” of your own story is the theme of most of my writing today, and I encourage every MS patient to think of life as a story that will someday be told. You have the power to make that story whatever you want it to be, so make it incredible, powerful, and positive. Make that story one that will inspire generations to come. You have the power to achieve anything and everything, regardless of a multiple sclerosis diagnosis.

*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.

Share

From Junk Food Junkie to Health Food Nut: My New Year’s Resolution

By: Jeri Burtchell

Happy New Year! I don’t know about you, but I’m starting fresh, determined to make this year better than the one before.

I try not to make unrealistic promises to myself in January since I’m not so “resolute” when it comes to my resolutions. Instead, I set the bar low so I can cross it–even if I have to trip and fall to make it over.

This year I chose only one goal: to eat better. I figured if I can do that, maybe there will be side benefits like losing weight or feeling better.

I confess I’ve been a junk foodie in the past. I use air quotes when I say the word “food” as some people would beg to differ. Yes, I’ve eaten leftover french fries from the bottom of a McDonalds bag a day later. Am I ashamed of that? You bet.

It’s hard to be a freelance writer covering MS and ignore my own bad habits. The latest news regarding the gut microbiome and how it can influence a whole host of diseases has been in the news and on the internet so much I can’t help but feel guilty hoisting a Coke to my lips as I look on and take it all in. Maybe there’s no definitive proof that diet influences MS, but if I can control what goes in my mouth on the off chance I might feel better, don’t I have an obligation to do that?

So enough was enough. I slurped up the rest of my Wendys frosty and pledged to tighten up my definition of food. I mentally stationed a miniature bouncer at the corner of my mouth who only lets the good foods pass.

I wish this bouncer had a wallet full of cash, though. My first stop after I (loosely) defined my resolution was the grocery store. Who knew eating only organic whole foods and raw honey or cold-pressed virgin coconut oil was only a pastime the rich and famous could afford?

The upside to taking out another mortgage in order to eat right is that you are hyper-aware of expiration dates and the gradual decomposition of your quality fruits and veggies. If I wanted everything to turn to compost in the vegetable drawer I would have cut out the middleman and simply buried my hard earned dollars in the back yard.

Not everyone in the house is on this health food bandwagon, however.

My teenager hates vegetables and my 91 year old mother is set in her routine, and she’s in great shape. “She’s earned the right to eat what she likes,” said her doctor, and I swear I saw Mom stick her tongue out at me.

Even though this is my resolution, I’ve found myself asking “every day??” when I think about how often a person is supposed to eat like this. For a terrible cook (another confession), eating things that aren’t ready to “microwave and enjoy” has been a huge challenge.

So I started out with something easy. We all like shakes, and smoothies are like shakes, right?

I got out the old Hamilton-Beach blender and blew the dust off. I looked at all the fancy stuff I’d bought at the grocery store and began flinging in a handful of this, a spoonful of that. I topped it all off with a generous heap of kale (because you can’t toss an Oreo cookie without hitting a story about how good kale is for you), and I set the blender spinning.

It looked…disgusting! The green of the kale, combined with the red of the strawberries gave the concoction an overall brown color. Even though it looked kind of like a chocolate shake, my teenager wrinkled his nose, well aware there had been no chocolate involved in the making of his mom’s new drink.

Ignoring my own urge to pinch my nose closed before gulping it down, I sipped mine and smiled, nodding to him to give his a try.

It turns out we both loved it so much it has become our daily ritual–and the uglier the better. We throw every healthy thing we can find in there.

Besides the smoothies, I cut out processed foods, refined sugar, and carbs. I have no clue how–or if–it affects my MS, but I can tell you this: in the 22 days since I began, I’ve lost 5 lbs., I don’t need afternoon naps, and my brain fog seems to be lifting.

I can’t wait to see how I feel a month from now. Unlike past resolutions, I think I just might be able to keep this one!

*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.

Share

How Small Changes Can Make a Big Difference in the New Year

By: Matt Cavallo

While most people are planning for their New Year’s resolutions, many of us with multiple sclerosis are just trying to feel normal again after all the holiday activities. The problem with the holidays is that they take us out of our normal routines and create financial and emotional stress. When we go outside of our normal routine or have increased stress, we unknowingly put ourselves at risk for an MS exacerbation, or relapse.

Last year I blogged, “Tips for Avoiding a Post-Holiday Multiple Sclerosis Flare”, which can be read by clicking here. Those tips include: developing a financial plan, changing eating habits, exercising, getting back on your schedule and setting attainable goals. You can enjoy the holidays, but it is critical to have a plan to get back on track.

Most times my tips come from lessons I’ve learned the hard way. Instead of taking my own advice last year I tried to be super dad and ran myself ragged. I spent the next couple of months trying to recover from the MS fatigue, was unable to take off the extra holiday weight and had to buy new pants with a stretchy waist band.

You see, you don’t have to wait until the New Year for a do-over. Resolutions can start at any time. Mine was to ditch the stretchy pants. I made sure to start working towards it before the holiday season began. I also made a couple of smart decisions along the way.

I took extra time off to make sure that I wasn’t stressed with last minute running around. Taking care of the gifts ahead of time also softened the financial stress of the season, because the costs were spread out. We didn’t stray too much from our regular diet, but did allow some holiday goodies. I also made sure to take extra time to rest. Taking the time off to spend with my family allowed me to be super dad and catch up on rest.

With all of the planning I did ahead of time, I am much less stressed and fatigued than last year. I am also down a couple of pounds and can ditch the stretchy pants. I’m still not exactly where I want to be yet, but I am working on it. A pleasant side effect of implementing a resolution before the New Year is that I actually believe that I have some attainable goals that I can stick to.

What I learned is that I don’t need a holiday to commit to feeling better. I cannot control what MS does to me, but I can control other things like fitting into my pants. Making small changes can have a big impact on how you feel or how fatigued you are. What little changes are you going to make in 2015?

Thank you for your continued readership and support. Wishing you and yours a happy, healthy New Year!

*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/

Share

The Heat and the Cold Can Impact MS Symptoms – Our Community Members Share Their Experiences

For many people with multiple sclerosis, heat can exacerbate MS symptoms. One of our contributors at MultipleSclerosis.net, Matt, even moved from southern California to Colorado, partly to escape the heat. However, another one of our contributors, Jackie, experiences MS symptoms, especially in her legs, when it is cold. It seems that temperatures affect people with MS in multiple ways, and in a recent article, Stephanie shared her experience. While she is extremely cold during the day, she finds herself turning into a “human torch” at night. As it turns out, many of our community members also overheat at night, or have other issues regulating their body temperature. More than 30 people in our Facebook community commented on Stephanie’s article, and here’s what they had to say:

I have night sweats too!

  • I had no idea that this was a symptom of my MS, which I was only diagnosed with 2 months ago. I also found out in an earlier post that “sensory overload” is part of it. Just ask my family, Saturday I was a complete jerk with EVERY little noise and I had no idea why. At least I can feel validated and not completely crazy!
  • I thought I was the only one who suffered from these strange symptoms! I prefer the heat over the cold, which makes my extremities hurt. And I freeze constantly – until I go to sleep. I bury myself under the covers to get warm, but wake up in the middle of the night kicking them off of me because I’m drenched in sweat. It’s miserable and ridiculously confusing!
  • I’ve been having night sweats for awhile and my neurologist keeps saying it is not my MS, but it didn’t start happening until a year after my diagnosis.
  • Fantastic post. This is something many people with MS experience as part of life with the condition and will help other people see they are not alone.
  • I, too, prefer the warm, not hot, weather. I freeze all day, but I can’t stand the covers on in bed.
  • I thought I was the only one who had the strange symptoms. I haven’t slept because of it for now 3 weeks, and it’s driving me insane.
  • I thought it was menopause possibly starting early. I never thought my MS did this. It’s horrible, especially when it’s actually cold.
  • I have the same problem with night sweats. I’ve had every test and no one can explain why I have them. Thanks for the article. I don’t feel so alone.
  • Yes, I definitely relate! I turn into a Bunsen burner especially late at night and no matter how cold it is I sweat like crazy without even getting all that over heated or hot. I still wake up sweaty.
  • ‪I sleep with ice packs all year long here in Michigan.
  • This is me, 110%! I’m freezing all day then a human furnace at night. And I can’t handle sleeping without a heavy blanket either from years of doing so before these symptoms.

I’m cold sometimes, and really hot at other times.

  • My husband and I had to resort to having our own bedrooms, and I often keep a fan on and have eight blankets. This is all because my body temperature is yo-yoing.
  • My feet always feel cold even though they’re warm especially when I’m in bed
.
  • I get really cold then I get really hot. It’s off and on.
  • I have that problem too. I thought it was just me, so thank you for posting this. I get night sweats to the point that my shirt will be wet.
  • I know EXACTLY what you mean! I am freezing cold, and burning up at the exact same moment. But it’s not just at night. I am always uncomfortable.
  • I thought it was just me! My body is like a house with no insulation. I’m either too hot or too cold.
  • I’m always warm – my hot flashes ended some time ago. My feet are always cold, even when it’s 100° outside. My circulation is getting so bad.

My Body temperature is hot all the time!

  • I’ll trade with you! I am like a human torch all the time. I never cool off even in the winter. People think I’m crazy because I don’t wear a jacket even in the winter. It makes it very hard to sleep because my husband is always cold and I am always hot.
  • I live in IL and it’s Dec. 22. I still wear shorts and a short-sleeved shirt to bed. I still sometimes wake up sweaty.
  • I don’t get cold often, but I’m always really hot since being diagnosed. It’s winter and I’m running my fan on full blast!

I’m cold all the time!

  • The only time this overheating ever happened to me was when I was taking Rebif. Now I am a thermostat nightmare – freezing cold all the time, layers and layers of clothing, and at night I have found the one thing to help go from hot to cold with minimal effort – believe it or not –  is a sleeping bag. The silk of the bag stays cool, and it warms up like a champ too so it’s easy to toss on and off at a whim without too much effort while TRYING to sleep.

Other:

  • I also find that using a sleeping bag helps me better adjust temp at night. I found this out by accident in September. Long story short, I was homeless from March of this year until December first. I was living in my car and when the season started shifting here in New England I finally borrowed a sleeping bag for the cooler nights. I slept much better with the sleeping bag than I did with blankets. My car would get stuffy at night with all the windows rolled up yet it was also chilly. The silkiness of the sleeping bag was comforting when I was feeling chilly and it was soothing to lie on top of it when I was feeling a little too warm. Now I have finally moved into an apartment and I don’t want to give the sleeping bag up.
  • I don’t do well in the heat. AC is for me in the summer, but I have been having cold hands and feet this winter nearly all the time. I am sitting in front of a floor heater nearly all the time now, and I live in California. There’s no way could I ever go or live where there is snow!
  • I don’t usually get hot or cold, but lately in the last 6 months I have sweating episodes that last about 20 minutes where I am drenched. I’m way past menopause so I know that can’t be it.

What about you? Do you have trouble regulating your body temperature? Do you have a hard time with either hot or cold temperatures? Please share with us in the comments!

Share

Stress and the Holidays with MS

Can you believe it’s already that time of the year again for the holidays? With everything we have going on in our lives and tacking on multiple sclerosis with it, it can be very hectic.

The holidays are meant to be a time to be with family and enjoy ourselves, not stress over shopping, hosting parties, cooking, etc. Then you tack on the crazy weather we have been having on top of everything else, it’s just down right insane.

(Now maybe some of y’all are used to the cold weather, but it’s a bit of a shock to us down here in the South.)

So I thought I would share some of the things that I do, so that I’m not adding stress to my already stressful life. It’s hard to be completely stress free, so I’m not even going to attempt to say something like “stress free.”

Sometimes it feels like there aren’t enough hours in the day to get everything that we need to get done, completed.

For me, when the day is coming to a close, I feel like it’s family time and time to relax. Not to run around ‘till I’m exhausted getting Christmas shopping done, etc. I don’t have the energy and/or strength to stand in lines, to fight the crowds, and everything else that comes along with holiday shopping.

Many sales aren’t just limited to ‘in-store’ purchases, but are also online. One thing I’ve done in the past – and will do this year as well, is shopping online. I know it’s not the same thing as actually going to the store and buying things, but it’s better for me and my MS, so that’s what I’m taking in to account. I don’t want to run down my body or cause my MS to flare-up trying to shop for the holidays. Where is the fun in that?

You would be surprised on what all is offered online. I love shopping at Amazon, because they seem to have almost everything available because they have outside vendors. Plus, a lot of the time when you’re shopping online certain stores offer free shipping if your total price is over a certain limit. Even if you have to pay for shipping, I think that the same amount would go towards gas if you’re actually driving around and shopping.

Now, whether you are shopping online or in the store, see if they offer gift-wrapping. This is a very big problem for me. I have spasticity in my hands, so if I’m trying to wrap multiple gifts at a time, my hands start giving me issues, and then the wrapping isn’t so pretty.

If you enjoy doing your own gift-wrapping, try and make a schedule out of it, so that you aren’t wrapping everything at once. I’ve done that before, and it wasn’t nice at all.

I know that it can be annoying that we have to make certain changes in our ‘routine,’ but I feel that those changes are worth it personally. By doing some simple, small changes, I can make sure that I’m not going to ‘pay for it’ from my MS in the future.

If you’re hosting a holiday event at your house, kudos to you! I don’t think I could handle all that. But if you are one of those people, don’t feel like you have to do ALL of the cooking for the gathering. Ask family/friends to bring certain dishes. Have a little sign-up sheet online, Google Docs, or something.

Something I have come to absolutely love is my crock-pot. This way it prevents standing for a long period of time cooking certain things. I can throw things for a recipe in to my crock-pot and turn it on, and it’s one less thing to worry about.

I love getting recipes on Pinterest and similar websites. If you just Google search “Holiday Crockpot Recipes,” I’m sure there will be plenty of results to choose from.

One last note… If you are going to make a run to the store to get your ingredients for a recipe, or anything else for that matter, have a list put together. I like to organize my list by section; this way I don’t have to scan through the entire list every time I look at it.

Most importantly, have fun with your family and friends. This is a time to spend time together, and be thankful for what we have been blessed with. I know it’s easier said than done, but it’s okay to allow someone to help you out. There is no shame in asking someone to help out with simple tasks.

Happy Holidays, everyone!

Ashley Ringstaff

MSWorld Volunteer

www.msworld.org    

Share

Air Travel Tips for the MS Community

By: Matt Cavallo

As the holidays approach, many of us living with a chronic illness are fretting holiday travel. Maybe you would like to travel to see friends or loved ones, but are hesitant because of your illness. You are not alone. Travel is stressful for everyone. Airports are big, busy and fast-paced. Security lines can be long and the thought of standing, unpacking, and repacking at TSA is enough to unravel even the most seasoned traveler. Compound traveling with the upcoming holiday lines and ticket prices and it may be enough for you to forego holiday travel and just stay home.

If you need to travel during the holidays and you are living with a chronic illness, there are several steps that you can take to ensure your airport experience doesn’t exacerbate your illness. The following steps will ensure that your holiday airport experience is as smooth as possible:

Five Steps to Stress-Free Air Travel for People Living with MS

1. Book your travel early. As a rule of thumb, booking your ticket fifty days in advance will get you favorable ticket prices, preferred seating (unless your airline has open seating like Southwest) and better flight time selections. Business travelers typically book fourteen days in advance, so if you wait to the last minute seating will be limited, as will flights, and the price will be higher.

2. Fly during off hours or off days. Much like morning traffic, the airport has rush hours too. My preference is to get the first flight of the day, even if it means being at the airport before the sun comes up. Airports are generally running once the sun goes up until the sun goes down. Whatever you do, avoid the last flight of the day, especially if you have a connection. If you are on the last flight, you have a greater likelihood of missing connections and then being rebooked on a flight the next morning. Mondays, Thursday nights and Friday mornings are business travel days. Sundays can be busy as well. Tuesday, Wednesday and Saturday are light traffic days and typically have cheaper flights.

3. Notify the ticketing agent or gate agent of your condition. If the airport and airline staff are aware of your illness, you can get wheelchair or transportation service (if necessary), medical clearance to get to the front of the TSA screening line and pre-boarding status at the airline. If you have trouble standing or waiting in line, be sure to tell the agents or TSA that you are a fall risk and have weight-bearing precautions making you a risk to stand in line for long periods of time. The number one goal at the airport is the safety of passengers and if you are a fall risk they will make every effort to prevent you from falling.

4. Limit carry-on luggage. Checking a bag is an extra cost (on most airlines), but that cost is well worth it. Check the TSA website for the items that they allow to get through screening. Make sure that if you have to pack liquids in your carry-on, they are a size that meets the TSA standard. They will confiscate any items that are prohibited for travel. Also, if you have limited strength or range-of-motion, it can be difficult lifting your carry-ons to the overhead storage.

5. Relax. The stress and anxiety of flying has many components that are out of your control. Stressing over the things you cannot control during air travel can be enough to make you sick and ruin your trip. If you follow the four preceding steps, you will be able to minimize most stressful airport situations. Unforeseen stressors like weather delays, mechanical failure and gate changes are situations that you cannot predict. If you can relax and take these steps into mind, knowing that whatever unforeseen delays are out of control, you will feel much better both during and after travel.

I fly a lot. Four out of my last six flights have had some kind of issue. I was delayed three hours on a one hour flight to Palm Springs. They loaded the plane, only to unload it and switch us over to a new plane after the delay.

Another time, I arrived in Detroit with plenty of time to make my connection to Akron, but there was no gate available. They said they notified the gate agents, but when I finally arrived at my transfer gate after a half hour delay, the gate agent had just shut the door. And even though four of us were standing there, she refused to open it or hold the plane per policy.

In this case, I didn’t take my own advice. I was on the last flight of the day and they couldn’t get me to Akron until 3:00 PM the following day. I had a speech in the morning, so I had to drive overnight and got to Akron at 4:15 AM. I was tired and groggy, but luckily able to caffeinate myself enough to give a great speech. Even though it worked out for me, the stress and delay were not worth going through that again.

As always, my advice comes from my mistakes. As a seasoned travel, I understand the do’s and don’ts of air travel. I hope that these steps help to make all of your air travel stress free. Safe travels!

*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/

Share

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
.
  • ‪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.

Share

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.

Share

Remembering the MS Support People

By: Sheryl Skutelsky

I’ve personally switched MS medications 3 times over the 14 years since I was diagnosed. It was a little over a year ago that I went for monthly infusions.

I would walk into the infusion center, and no matter how hectic it seemed at times, there was Kristen always smiling. Especially in the beginning, this was a place of fear for me. My veins saw a needle coming, and they would literally slide to the side. Kristen had the patience of a saint, and the most amazing bedside manner.

Unlike so many, I wasn’t doing well on the medication. I began to experience severe joint pain, and I finally had to give up and move on to the next medication.

However, I will never forget the difference it made in my life to have a nurse like Kristen. She cared about each and every one of us, and I swear she could do 20 things at once and get them all right.

To this day whenever I visit my neurologist, and he says that I need bloodwork done, I’ll patiently wait until Kristen has a free moment – not just because she’s the only one that can find my vein on one try, but because her smile can light up anyone’s bad MS days.

*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.

Share

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.

Share