No Routine Schedule with MS

By: Matt Cavallo 

There has been nothing routine about my schedule lately. Between traveling for work, the kids going back to school and everyday stress of life with multiple sclerosis, I am wiped out. My last flight was particularly exhausting. It seems that every time I travel, the airlines come up with new ways to delay my flights. This past one last week was a flat tire. Yes, a flat tire delayed me for two hours on a one hour flight to Santa Barbara.

That is the thing about life. There is relatively low predictability. Those of us living with MS love a predictable schedule, but the truth is that circumstances outside our control force us to adjust on the fly. The problem is that if we don’t keep up, we get left behind. So how do I manage to keep up with a busy schedule while dealing with a chronically fatiguing disease? Here are some tips that I use to make my hectic schedule a little more manageable.

3 Tips for Managing a Schedule with Multiple Sclerosis

1. Prioritize and Plan Ahead – Prioritize neurology, other doctor appointments or medical procedures ahead of time. There is limited availability for these medical services and spots fill up fast. If you know that you need a neurology follow-up, MRI, etc., plan six months ahead of time and book it. This will reduce the stress of trying to get an appointment at the last minute, which may cause the extra stress of having to juggle other items on your calendar.

2. Keep a Calendar – Whether electronic or paper, you need to have access to calendar reminders when planning your schedule. I cannot tell you how many times I have double booked myself because I did not refer to the calendar in my pocket. Using today’s technology will allow you to be prompted for important events or forecast possible conflicts. With MS you have enough to worry about, let the calendar manage your time, so you don’t have too. I know once I did, my stress of wondering what I had next was gone.

3. Let Go of what you can’t Control – This is perhaps the hardest lessen to learn. So you have prioritized, planned ahead and calendared an event. Then something unexpectedly flares up derailing your schedule. This is OK. It is bound to happen. Last week, there was nothing I could do about the flat tire on the plane. Some in the crowd went to customer service. Others went up to the gate agent. Most waited in some line for two hours asking questions about an event they couldn’t control. I sat in my seat and waited for the tire to be changed. After all, I would rather be a little late then try to land on a flat tire.

Living with multiple sclerosis is tough. It can be a chronically fatiguing condition that makes you feel like you are constantly trying to catch up with those around you. Don’t let your schedule contribute to your MS fatigue. Use my 3 tips for managing a schedule with multiple sclerosis. Remember to prioritize and plan ahead, keep an up-to-date calendar and let go of what you can’t control and you will find the everyday stress of keeping your time melt away.

*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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Season of Change

Leaf PicIt’s that time of year again when the leaves are changing from green to yellow to red. What a beautiful time it is before they fall from the trees and we have to rake them up in the yard. This is a great time of year to go for a drive on a scenic route to see the beautiful scenery. Remember to pack a camera or take a quick shot with your phone!

The change of the season gets me thinking about how we accept change in our lives. Just like the seasons change, our lives change. Changes in your life require faith, dedication, and perseverance. Did you know that the true test of intelligence is not how much we know, but how we behave when we don’t know what to do?

Some people know that they need to make changes in their lives. But often find themselves taking the path of least resistance and don’t make the changes even if it means remaining unsatisfied. People stay in relationships that aren’t good for them. They keep jobs that bring them no joy. There is nothing wrong with change, especially when it has the potential to bring happiness.

The world around us is constantly changing. By being open to change we open ourselves up to learn the lesson that this change has for us. When we take this approach to change, we will accept it as a powerful, positive force in our lives.

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Making Comparisons with MS – Community Feedback

There are so many aspects of living with MS that are frustrating, and sometimes those frustrations occur when interacting with people who do not have MS. One of our amazing contributors, Ashley Ringstaff, shared her feelings about people comparing their experiences with things like fatigue, pain, numbness, and other symptoms with those symptoms in someone who has MS. Many of our community members shared their thoughts and experiences with us after reading Ashley’s article, “You Can’t Compare…”. Here is what they had to say:

“Healthy” People Just Don’t Understand

  • This is something that I just cannot seem to communicate to certain people who don’t have MS or have never been chronically ill. “Healthy” people just cannot empathize, and I know because I used to be one and now my experience is completely different.
  • The best is when people who know I have MS contact me and tell me they feel they are having symptoms and think they might have MS too – as if I can diagnose them! I try to see it from their perspective but it’s very difficult. ‪Also when I say I’m fatigued- they say they get that way too all the time! I want to explain to them that they have no idea. But I just smile.
  • When I try to talk to family members, they say they get dizzy, or they stagger around, etc. I just stop talking and tell them they should get checked out. Even my husband doesn’t totally understand what I go through on a daily basis. I just get so frustrated that I can’t do everything I use to do.
  • I hate that my best friend who I haven’t been able to see that much in the past year constantly compares my issue with MS to her chronic pain in her hip, telling me she knows exactly how I feel.
  • When I tell people I can’t be in the heat (for me it’s anything above 70) they say “I don’t like the heat either”. I just look at them dumbfounded. I want to yell “When was the last time you got warm and couldn’t lift your legs to walk or think yourself.
  • You know, it is natural to feel this way. I am a 15-year stroke survivor and am irritated when someone (who has never experienced a stroke) says they know how I feel. The best common factor I’ve found is any type of trauma.

It’s really not possible to compare

  • You can’t even compare your symptoms with others experience who do have MS, or for that matter, I can’t even compare the last time I had a given symptom to what I experience this time.
  • I know there are many people in the world with diseases that are even worse than MS, so who compares what anyway? Just try to feel good for yourself and forget about complaining.
  • It’s next to impossible to explain what having multiple sclerosis is like to people.

“Healthy” People offer a lot of unsolicited advice

  • They ask how I am feeling, so I tell them. The response is always “have you tried such and such” or “that happens to me, too.” Now I only share my symptoms and feelings with medical professionals and a couple of friends who truly do understand. Family? Forget it.
  • I love when people say “you would feel better if you lose weight or eat healthier” or the classic “exercise would make you feel great”. My family and friends mean well but don’t always say the right things.

“Healthy” People are just trying to relate to us – it’s harmless

  • I like to be more optimistic – I believe, most of the time, they are trying to relate. Unless they are significant in my life, I don’t try to differentiate.
  • I feel the majority are trying to empathize. Most just don’t know how to react when you tell them you have MS because they don’t understand what it means.

What about you? Do you find that “healthy” people try to compare their symptoms with yours? Share with us in the comments!

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Managing the Hectic Schedule

“It’s how we spend our time here and now, that really matters. If you are fed up with the way you have come to interact with time, change it.” –Marcia Wieder

While many things in life may seem out of our immediate control, there is one constant that has the ability to change; time. While we can’t make more hours in a day, we can change our perception of time and how our days will look.

Start your day off right. While preparing for the day, take a moment to jot down a few notes on things that need to be accomplished. Personal calendars, phone reminders, or dry erase boards are a helpful way to organize tasks.

Take into consideration MS symptom management. When planning out the day, consider your MS symptoms. Are you more productive in the early mornings, or late afternoons? Does your MS disease-modifying treatment cause symptoms or side effects? If so, make sure to plan around your treatment dosage time.

Reprioritize. It’s OK not to check everything off of your to-do list in one day. Sometimes that’s easier said than done. Take a moment during the day to look over your list and consider what not to do that day.

Time management is a personal journey. What works for someone might not work for everyone, but it is nice to hear how others plan their days. What tips or strategies do you use to manage your hectic schedule?

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Finding Peace

Did you know that September 21st is known as the International Day of Peace, or World Peace Day? A day that encourages peace and the strength of positive ideas and movements, this internationally observed time is celebrated throughout countries across the world.

In a society that’s currently faced with some troubling and distressing times, it’s important to reflect on the idea of peace and what it means to you. It doesn’t have to look the same from person to person because everyone is unique in their own thoughts and feelings. It’s about carrying out behaviors and actions that can increase positivity and optimism and a sense of tranquility.

The things that can endorse and increase peace do not have to be grand gestures. It can be personal and private moments where you find strength from certain actions, or it can be doing good deeds for others and promoting positive thinking. The possibilities of peace can be endless because the gestures and concept behind it are endless.

You can find peace through meditation, songs, books, your relationships with others and yourself. You can choose to get involved in community activities or ask others to join events that help promote peaceful and positive thinking. No matter the task, the idea of peace can be translated in many different forms and its message remains everlasting.

What brings you peace?

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Hi, Nice to meet you.

Hello Blog Community (in my best Good Morning Vietnam impersonation). My name is Roshawnda Washington but everyone calls me Ro and I’d like to take a few lines to introduce myself. I joined the MSAA team as an intern at the beginning of September and am so looking forward to working here. I’m currently working toward my MSW with the University of Southern California (Fight On!) after earning a bachelor’s degree in Biology. Why the switch you may ask…I was looking for something that would allow me to make a difference. About a year and a half ago I sat at work thinking that while I enjoy science and was working for a fantastic research institute I couldn’t see myself waking up in 10 years and still enjoying what I was doing. In typical Generation Y fashion I took to Google and typed in some of the words I was pretty sure I was looking for; people, help, professional, fulfilling, compassion, diverse and career. There were others like million dollars, international travel and fabulous but it took 6 seconds before I remembered that I’m not a reality TV star so my first few were probably good. Several things popped up and the one I almost immediately dismissed was Social Worker. “They’re the people who take children from homes and put them in other homes right”…Pass, that’s not for me and I continued on my search for my fabulous, million dollar (kidding) new path in life.

At work as I was speaking with some of our staff I expressed the new hunt for my future and someone mentioned, “you should look into social work”. I stopped and thought to myself, what are the odds. We began speaking about what Social Workers actually do, some of the areas where they are needed and specifically what the workers part was in our team at the hospital. I had previously had few occasions to interact with the Social Workers who partnered with our patient families and clinical teams. Getting to really speak with them I was able to learn that Social Workers are not the ‘baby snatchers’ or any of the negative stereotypes that many others and I had been associating with the vocation. Again I took to my trusty Google and in true predictive type mode it directed me to several programs offering an MSW and USC was at the top of the list.

Over the past year I have had the privilege of working with some wonderful professors and professionals as well as my fellow students to learn what being a Social Worker really is. I’ve been able to look at my parents’ history of being a foster family and the care that our worker put into each child she placed. In the VA workers who diligently and persistently advocate for veterans to make sure they are getting the services they need. In the awesome workers, who partner with families in hospitals to be the shoulder to lean on and the voice when they don’t know what to ask. I’ve learned that while many Social Workers do work with children and family services to make sure children are in caring and safe homes they also work in schools, therapist offices, businesses, corporations, hospitals, for counseling services and at non-profit organizations like here at MSAA (as well as a ton of places it would take a dozen blogs for me to list). Social Workers are professional, diverse, compassionate people who seek to help others fulfill needs and they do all this and more as a career (like how I used all my search words 😀 ). I will probably never make a million dollars, my international travel will be on vacations (unless I become that TV star) but I think that Social Workers are pretty fabulous and I’m beyond excited to get started on this path and see the difference I’m able to make.

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MS and Senior Year Stress: Helping Your Child Leave High School for College

By: Jeri Burtchell

My son came into this world two months premature, had the wrinkled skin of a little old man, and his head fit snuggly in my tightly cupped palm. I just prayed he would live to come home, too scared for our future to think about “prepaid college plans” or anything.

Seventeen years later, my preemie who once weighed 3 pounds is officially a senior. We weathered many challenges along the way, between my MS and his complications from being born too soon. But we’ve made it to this point and I couldn’t be more proud — or terrified.

He has his sights set on college and I’m kicking myself for never starting a prepaid college fund. Besides money, there’s a lot of planning involved, it turns out.

Starting with the senior photo shoot it seems like the wheels have been in motion and I’m falling off the back end of the wagon trying to keep up. There is so much to do!

He enrolled in two Advanced Placement (AP) courses that would look great on his transcripts. We followed that up with a trip to the guidance office where I thought we’d have a single session and be all set.

I think the moment I began fearing a possible MS relapse was at the end of that initial–and completely overwhelming–meeting. She let us know we were playing catch-up at this point. Who knew that college planning begins in the womb?

That prepaid college fund? Probably would have been a good idea. After all, how much can I realistically expect to save between now and next fall? The counselor nixed my idea of spending every dime I get on Lotto tickets in hopes of affording tuition. She said that’s not the best plan.

No, the best plan involves lots of research and determination on my part evidently. My son is bogged down with AP homework so I’m scouring the internet for scholarship opportunities. Thanks to MS for the insomnia I suffer, I have plenty of free time between 1 and 5 AM to read websites and figure out if they are scams or legitimate awards worth applying for.

There really is a scholarship opportunity for left-handers, for example, as well as for seniors who opt to construct their prom attire completely from Duct Tape. Aside from the unusual ones, however, did you know your children can qualify for scholarships if their parent has MS? My son even can even apply for one related to his asthma.

So what can I share with you to help pave the way for your talented child to be able to go to college? Here is my list of things it would have been helpful to know prior to senior year. Hopefully this will relieve some of the relapse-provoking stress, and prepare you for the exciting possibilities that lie ahead.

● Take Honors or AP courses as early and often as you can, striving for academic excellence. (My mantra his entire life was “If you ever expect to go to college you’re going to need a scholarship because I can’t pay for it,”–and we’re learning how right I was.)
● Go to College Night at the high school starting in Freshman year, and learn something each time you go. There are goals you can be achieving along the way, helping your roll out your plan.
● Make a short list of the colleges you’d like to attend and focus on finding out all of the requirements and deadlines for applying. You’ll want to keep track of:
○ Application deadline for the following fall. (I was shocked to see a lot of schools want my son’s submission by November 1 of this year!)
○ SAT, ACT, and GPA minimum requirements
○ In-state vs out-of-state tuitions and housing
● Your guidance counselor may be able to give you fee waiver passes to retake the SAT and/or ACT tests. The retakes do not cancel out previous test scores so don’t worry that you’ll do worse. Your best scores count!
● Search everywhere for scholarships to apply for. Even if it’s small, they can add up fast. Wells Fargo website has a database you can search for scholarships. You have to sign up and fill out a profile and they research the possibilities for you.

In all of your planning, parents, don’t forget about yourself. Your child, like mine, is probably a big help around the house and has been acting as a caregiver to some extent. You may not even realize how great a role they’ve been playing until your nest is empty, unless you have others still at home.

Be sure to create your own plan for how you will connect with your child while they are away, who will take over their caregiver or household responsibilities, and make the transition as smooth as possible.

This should be a time of joy and celebration (I keep reminding myself) so do all you can to prevent the stress that comes with it from sending you spiraling into a relapse. Keep cool, start early, stay focus, and have a plan.

And on the last day of school, toss your own hat in the air–you’ve earned it! Congrats!

*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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10 Things To Do Before Fall Ends!

Back-to-school time is here and fall isn’t far behind. Glorious fall!!! I can smell the leaves and cool crisp air, and don’t get me started on how obsessed I am with pumpkin-flavored everything. Summer will end soon and before you know it the holidays will be here.

Back-to-school excitement will soon end but don’t let autumn fly by. Take advantage of the crisp cool weather and beautiful foliage with this list of fun things to do:

1. Make s’mores on a cool night.
2. Take fall foliage pictures and frame one/or a family photo.
3. Play in the colorful leaves, even if you crunch them in your hands.
4. Make a new fall craft project; carve a pumpkin.
5. Bake pumpkin bread or muffins – told you I was obsessed!
6. Enjoy warm apple cider outside under a cozy blanket.
7. Go apple picking.
8. Start holiday shopping early, plan ahead this year.
9. Write someone a love letter and mail it – no email (It’s fun to open mail).
10. Do whatever makes you the happiest!!

Couple walking in leaves with baby

I hope that by sharing some of my favorite fall activities you will be inspired to make the most of my favorite season!!

What is your favorite thing to do in the fall?

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All I Really Need to Know I Learned In…..

So this week marked the time for many students across the country to head back into the classroom to begin a new school year. School supplies being emptied on store shelves, heavier morning traffic caused by school zones and bus stops, and the sun rising a little differently in the mornings all represent this significant time of year. It makes me think of the book by Robert Fulghum, All I Really Need to Know I Learned in Kindergarten.

The book highlights some very important and notable lessons we need throughout life that were actually taught to us in our earliest phase of education. It may not have seemed like it at the time, as we were having snack, playing with classmates and enjoying circle time, but values were being engrained in us that we would use for years to come. Remembering to share, to say you’re sorry if you hurt someone, and to be aware of the world around us were just some of the imperative teachings we learned amidst play time. It got me thinking though, what other times throughout life are we taught these and other significant lessons? The answer: every day.

It’s true. We learn important life lessons every day, for those younger and older, in school or not, there are constant teachings around us every day that continue to instill life’s lessons and morals in us. We hear about other people’s experiences and we look at them as examples, to model or not. We see good and bad and find our place in where we wish to be amidst the chaos. We strive to continue learning and to be vulnerable to new experiences and feelings. We try to remind ourselves of who we are and what we learned years ago and how it can still have meaning now.

People show interest in the world around them every day, even if it’s just by watching the news—again, to be aware of what’s out there and what’s bigger and different. So while many of life’s important lessons were learned as tots on those first days in the classroom, life itself continues to be the classroom; with continuous trainings and encouragement all around.

What lessons have you continued to learn about or have tried to teach others?

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Back to School: The Importance of Rest and Recovery

By: Meagan Freeman 

As a mother of 5, I have always looked forward to that special time of year when my children head back to school! It was a long, hot summer this year, and I spent my days without the usual daytime break I always need during the school year. Summer can be incredibly difficult for parents with MS, and children are often left bored at home, looking for entertainment. Temperatures often hit the 90s-100s in my area, and on those very hot days I was left a virtual prisoner, trapped at home in the A/C with children who were not often pleased. Most MS patients require a certain amount of rest during the day, and noise can become a tremendous irritant. Without a break, we often become fatigued and emotionally spent.

My children returned to school early this year, on August 24th. My oldest left for college this year, and it was surreal to help him pack up his things and head out. Though I was saddened a bit, I also thought to myself with a twinge of guilt: “Check one off the list!” The first day back was chaotic, dragging exhausted children out of bed early and forcing them to dress, eat breakfast, and get out the door begrudgingly by 7:45 AM. I have found that planning ahead and organization are the keys to success with a large family, and I always spend the evenings preparing everything needed for the morning. Lunches and snacks are packed ahead of time, clothes are in piles according to child, and backpacks are in a neat line ready to be carried out. I have issues with memory loss at times, and I find that failure to plan ahead leads to disaster. I recommend using electronic devices to plan out calendars for the week, setting “alerts” for important times and events. After forgetting to pick children up on early dismissal days several times last year, I have learned to mark out the important pick up times well in advance.

We jumped in the car on that first day of school, everyone in new outfits and excitement in the air, and made our way around town to multiple schools, into new classrooms and new adventures. After the last child left the car, I drove home slowly, sipping my coffee with a sense of great relief. I walked in the door of my home, to a quiet and peaceful spot for the first time in months. I took a deep breath, and realized that at last, I had some free time for myself.

Through these yearly experiences, I have come to understand that I need time for rest and rejuvenation. It is not a luxury for me, but rather a medical necessity. Without a chance to “recharge the batteries,” we just don’t function well as mothers and fathers with MS. Though childcare can be incredibly expensive during the summer, I would advise all parents with MS to factor in some time to rest. Those precious quiet moments are exactly what the doctor ordered, and we should all begin to see rest as a medication or a treatment, something that our disease demands. Even if a friend or family member might give you a bit of respite and take the kids for a few hours occasionally, this would be of great benefit. We should all take a bit of time to care for ourselves, so that we might care for our families in the best possible way. Happy Back to School!

*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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