The Decision To Go

A friend of mine recently left for a Peace Corps assignment. Two years in Thailand. Not the tourist sector or the flashy areas you see in magazines but very rural areas that you may have never heard of or that ever get much attention. Her journey to finding the Peace Corps and ultimately the decision to go wasn’t easy. She went back and forth and more than once was tempted to say “No, it sounds good but not for me”. Ultimately after one delay and many long stretches of talking with her family and friends she made the decision to go. Listening to her talk about it made me stop to think of the decisions in life that we make. How we come to crossroads, opportunities or big decisions and have to decide left or right, to go or to stay.

There are plenty of times in our lives that we sit down with our trusty pen and paper, or notebook app what have you, to make the list of Pros and Cons that we ultimately hope will clearly spell out what we should do. But what happens when you’re in a dead heat? When the reasons to go equal the number of reasons to stay? When it means leaving familiar surroundings or being uncomfortable? When you aren’t really sure and the idea of just deciding is pretty daunting. If you’re my friend you take the leap of faith and hope that it works out. But many people (myself included at times) find this, making the decision, hard to do. This month we talked about goal setting and resolution keeping, about ways we can branch out and make changes. But change is difficult. It can be messy and complicated and downright scary. The decision to leave a job you’ve been at for a while or to take on a new challenge. To talk with our doctor about a possible prognosis or make changes to our lifestyle. All the changes, they start with a decision.Challenge-Quotes-57

The decisions we make and the paths we go down may be complicated and the path I chose may not look anything like yours. But deciding to go, to change, to work through the problem, to have that tough talk with your spouse or go to see the physician is worth the skipped beat your heart makes when you do it. To get over that first step…the decision… then to move into the next phase and see where it takes you.

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Challenges With Showering When You Have MS

MS has a profound impact on so many aspects of the lives of those living with this condition, both big and small. While the “big” stuff is talked about more frequently, like treatments, doctor appointments, etc, the “little” stuff is just as important. One of the contributors at MultipleSclerosis.net, Devin Garlit, recently wrote an article about the unexpected perils of showering with MS. The simple act of showering can really be taken for granted when you don’t think about all of the factors involved. Between slippery surfaces, temperature changes, and even needing the energy to stand up for an extended period of time, showering with MS is not simple, nor easy. Our community members really identified with Devin’s sentiments, and they even shared their own thoughts and experiences with us. Here’s what they had to say:

Balancing in the shower is a real challenge

  • I can’t close my eyes to wash and rinse my hair unless I’m hanging on for dear life! I close my eyes, I fall! I started showering at night so that all I have to do is get ready for bed. A morning shower will destroy my entire day.
  • Washing my hair scares me. I get so dizzy.
  • Thank God for the three grab in my shower. Closing my eyes and looking up makes me dizzy, so I have to hold on.
  • Thank goodness for shower chairs, grab bars, and hand held shower heads. Still taking showers can be exhausting. I miss my baths. I loved laying and just soaking in the tub.
  • Balancing is such a challenge. I’m not glad that anyone else goes through it but I’m glad to know I’m not just loosing my mind. I thought it was just me. Even looking up at my son’s drone flying around in the sky I must find something to hang on to.
  • I do the swaying thing and usually fall backwards. I’m thankful for a small shower as when I fall back I end up just leaning on the wall.

I make adjustments to cope with the struggles of showering

  • I too have resorted to every other day and shower the night before if I have plans the next day. We adapt and adjust. Thank you again. Blessings and positive vibes to you.
  • MS made me give up baths 10 years ago and had to give up showers 3 years ago. Sponge baths are all I can manage. MS is an evil thief.
  • I’ve had to start showering at night and I hate it! I’ve also scalded myself when my brain fog had me turning off the cold water before the hot, ouch!
  • I started using a shower stool about 2 years ago because it helps. It’s hard to stand long enough to shower.
  • ‪ I have learned to work with this by only showing in early evening in case it increases the fatigue. Important not to shower unless someone else is home – safety first.
  • I sponge bathe, and shower once a week. Showering takes so much out of me, the heat, the slipperiness, the drying off. If I need to do something the next day, I shower the day before, and sponge bathe the next morning to freshen up.
  • I’ve got an anti-slip mat & grab bars in our P-shaped shower-bath.

Showering can be painful

  • Sometimes the water hurts or feels like it’s burning hot and it really not. When I take a shower I need 2 hours after to rest then I can get ready. I so hate MS.
  • It’s amazing that the water from a shower can actually be painful – people who don’t have MS just don’t understand.
  • It is very hard to explain to people why showers cause me pain and make me so tired that I often cancel plans and need to lay down.
  • I have burned my skin from not being able to feel how hot the water gets. I definitely can’t stand to shave my legs anymore or I will end up outside the shower on the floor.

Showering is exhausting

  • It is so frustrating to have to rest after a shower. I do use a shower chair, and luckily we have sliding shower doors. Though not supportive, it helps to have something else to steady yourself with other than just a shower curtain. I used to love soaking in a hot bath, but I haven’t been able to do that in years. I still have a shower every day, but it’s a struggle some times.
  • It’s exhausting! I’m considering a shower chair, but it’s hard to accept that I might need that. Balance, brain, fatigue – it’s hard to believe this is my reality.
  • I have issues with getting very weak with showers and nearly passing out before I am done, barely making it to the bed to lay down sometimes. I take lukewarm showers too. I also have repeated steps as well.
  • The shower has been an issue for me ever since I had my first child. It’s so frustrating having to rest after taking a shower. I feel like I spend my whole day resting between every little thing. I would shower at night but I sweat so much in my sleep it’s pointless.
  • Showering is an Olympic event…all the hurdles are exhausting.

What about you? Is showering a challenge? Do you have any tips to make it easier? Please, share your thoughts with us in the comments!

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New Year – New You

I have to admit, I am a sucker for a New Year’s resolution. Maybe it’s the over-indulgences from the holiday season, or the thought that summer is quickly approaching. But I really enjoy the idea of a reset; or a chance for a redo. The key word there is “chance”; each individual has the power to elicit a change in their lives.

For me, January 1st is the first day of a new life. While we can look at each day as an opportunity for change, for some, the bigger picture provides a sense of ease in that the familiar world we are used to will not be transformed in one fell swoop.

Honor the journey that you have been through thus far, for it has created memories and life moments that can propel you through this new life. Respect the past for what is it, and allow yourself to move forward. The new life in front of you is not designed to change your past experiences, but to allow a place for growth.

This is your choice and your time to make a change that can possibly help with a challenge that is causing you to struggle. Perhaps this is the time to contact that specialist to talk about a troubling symptom, or reach out to a friend from the past which you’ve lost contact. The possibilities for change are endless, but committing to one is the first step.

“It’s a new dawn
It’s a new day
It’s a new life for me
And I’m feeling good”
– Leslie Bricusse

Allow this new year to be your chance for change! Comment below or write to us sharing your experience.

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Stick to YOUR OWN agenda

During this month’s blog posts we’ve had discussions relating to resolutions, changes, and goals for the new year ahead. While many people work hard to create their own plans and generate new goals to achieve, some individuals try to impose their own agenda onto others—with the expectation that the objectives they envisioned for that person will automatically be met.

Some of us are not complete strangers to this situation; especially if during your childhood or adolescent years you had parents or other figures hold you to complete certain tasks and require the execution of specific goals. This is usually not done in malice, but rather people wanting the best for others and for them to perform at their highest level of potential. However, for individuals experiencing an illness or disability, these anticipations can be overwhelming and burdensome at times, especially if they don’t match with their abilities and skillsets. Everyone is different and is capable of different things.

Even though it’s done with good intentions, others expectations can sometimes take over one’s own agenda completely, leaving their own goals and aspirations on the sidelines. It’s difficult trying to meet others’ goals for what you should or should not be accomplishing, and it can be downright exhausting trying to satisfy others in this manner. That’s why it’s important to stick to your own plans and agenda—to realize your abilities or limitations and to strive forward with this thoughtfully in mind. You can take others suggestions, if asked for, to take into consideration when you’re forming your objectives, but they should be your own and done on your own terms. It’s hard to please everyone, but if at the end of the day you are comfortable with the decisions you’ve made and the feats you’ve conquered, I’d say to chalk that up as a win!

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New Year’s Inspiration

If you are like me, every January you sit down and make a list of New Year’s resolutions. Whether it be deciding to find a new job or lose a few pounds, the turning of the calendar seems to inspire a lot of us to turn over a new leaf. But change isn’t always easy. It takes hard work and that work can be even harder if we don’t keep a positive outlook or put mental roadblocks in the way.

On another note, over the past few years, I have become obsessed with the show Shark Tank. My husband and I record and watch it religiously. At least once an episode, we turn to each other and say “Why didn’t we think of that?”. But, we don’t watch the show to feel bad about ourselves. We find the show inspirational because it is a great example to us and our children that hard work and perseverance still pay off.

So, I thought I would provide you with some inspirational quotes from the Sharks themselves that I found on the Internet to keep you going when the going gets tough.

Shark Tank Inspirational quotes

1. “Tough times never last; tough people always do.” – Robert Herjavec
2. “A goal without a timeline is just a dream.” – Robert Herjavec
3. “Dear optimist, pessimist, and realist–while you guys were busy arguing about the glass of wine, I drank it! Sincerely, the opportunist!” – Lori Greiner
4. “Nobody has a monopoly on good ideas.” – Kevin O’Leary
5. “Never give up what you believe.” – Daymond John
6. “The difference between successful people and others is how long they spend time feeling sorry for themselves.” – Barbara Corcoran
7. “Finding opportunity is a matter of believing it’s there.” – Barbara Corcoran
8. “I wouldn’t be where I am now if I didn’t fail… a lot. The good, the bad, it’s all part of the success equation” – Mark Cuban
9. “It comes down to finding something you love to do and then just being great at it.” – Mark Cuban
10. “You can always find a solution if you try hard enough.” – Lori Greiner
11. “Don’t you dare undermine the power of your own instinct.” – Barbara Corcoran
12. “All the best things that happened to me happened after I was rejected. I knew the power of getting past no.” – Barbara Corcoran

Wishing you health, happiness and success in 2016!

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New Year Goals and Designing My Life

By: Stacie Prada

My approach toward New Year resolutions is to just pause, think about things I want to accomplish or do in my life, or stop doing for that matter, and make a plan. It’s less about making resolutions than focusing my energy toward goals I’d like to achieve and living a life I’ll love. I think of it as designing my life and using a new year to motivate me to consider and organize my priorities.

Articles online say people fail their New Year’s resolutions within a very short time into the New Year. I’d rather commit to change and effort than to a specific task-based resolution that isn’t always achievable when health issues or life obligations interfere. It’s also easy to get sidetracked. If I have a plan and a mechanism for remembering what I’d like to accomplish, I’m more likely to succeed.

This approach was very successful for me last year when I signed up for a marathon. I stretched a 20 week training plan to 36 weeks. It allowed for plenty of setbacks without the pressure of failing. It also helped keep it fun. See my post, “Adapting to My Limitations and Doing a Marathon Anyway.”

Considering my MS disease progression will likely include mobility issues in the future, I prioritize being active. I think about things I want to do in my lifetime that I will enjoy and that I may not be able to do if I lose my mobility. My goal is to try to do them sooner than later. If I don’t do some of these things, it won’t ruin me. But I want to be conscious of them and incorporate them into my life now if possible. I enjoy planning and doing them now, and I will enjoy them in the future while reminiscing about them.

None of the changes I want to make are done in the first month of a new year. Instead, my intention is to prepare. I’m not setting up resolutions to do things perfectly all year long. I’m creating a plan with routines to make progress toward living a life I love while enjoying my life as it is today.

*Stacie Prada was diagnosed with RRMS in 2008 at the age of 38. Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/

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A Day On, Not a Day Off.

Is not this, then, a century worth living in – a day worth serving? And though toil, hard, heavy toil, be the price of life, shall we not, young men and women, gladly work and sacrifice and serve…?” – W.E.B. Dubois, 1898

On Monday, January 18th our nation will once again pause to remember the great Dr. Martin Luther King, a leader and activist most noted for his role in advancing the civil rights movement. This day gives us the opportunity to reflect on his legacy of service and explore what service means to us in this current age.

MLK Day 2016MLK Day is the only federal holiday observed as a national day of service, and celebrated as “a day on, not a day off.” Each year, citizens all across the country honor Dr. King’s memory by participating in acts of service that benefit their community. This Monday, January 18th, we encourage you to help improve lives today for the multiple sclerosis community as your act of service.

We would love to hear how you are spending your Monday. Let us know what fun activities you’ll be doing either here or on our Facebook page.

Need some ideas of how you can be of service to the MS community?

1. Donate your time by creating a fundraising event to benefit MSAA.
2. Participate in Swim for MS.
3. Make a purchase from a company that supports charitable causes.
4. Make a monetary contribution.
5. Sign up for our Street Squad program and begin spreading the word about MSAA.
6. Perform random acts of kindness for someone in your community.

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A Message from Our New President & CEO – Gina Ross Murdoch

Welcome to 2016! As we begin a new year, I am thrilled and honored to be assuming the role of President and Chief Executive Officer of our Multiple Sclerosis Association of America. My fourteen years with the National MS Society galvanized my dedication to all affected by MS. I join our organization building on the great foundation established by Doug Franklin, Bob Rapp, the Board of Directors, volunteers, and the entire staff. These visionary leaders have made a significant impact on the lives of those affected by multiple sclerosis. Through their dedication to improving lives, so many of our members have received much-needed equipment, critical MRIs, cutting-edge technology via our My MS Manager mobile app, and invaluable information through our programs. I would be remiss if I didn’t start off my first post with a heartfelt thank you for all that they have done.

Going into this new year, we face challenges and new opportunities. The worlds of healthcare, insurance and research are constantly changing. Despite this varied landscape, we at YOUR MSAA remain singular in our focus to improve lives. Although this is our singular focus, it is not our singular responsibility. I encourage each and every one of you to get involved in MSAA activities and help us expand the word about how we are here to help. Multiple sclerosis is unpredictable. I have seen that all too well in my many years engaged with our community. I have seen some do well on our ever growing list of disease-modifying treatments. I have also seen those who have lost so much to MS and the overwhelming effects of that diagnosis on their families.

Now as we face the challenges and opportunities of a new year, I invite you to be an advocate for MSAA, for yourself and for those still to be diagnosed. We have made an impact but every week 200 more people need our help, need our information, need our support. Collectively, our MSAA members are in the hundreds of thousands – a very powerful agent for improving lives. My goal is to work collectively with staff, board members, volunteers, and our partners to continue our key programs while also investigating what new services our members need tomorrow. Together, we can take the good work of MSAA to so many more. Together, we can touch more lives and IMPROVE more lives. You will hear me a lot during this year – where we are, what we are doing and how YOU can be a part of our next chapter. I encourage you to reach out to me and let us know about opportunities in your town, your state and your region. A constant flow of information leads to quicker and better ideas.

I thank you in advance for your involvement, your passion, your feedback, and your dedication to Improving Lives and Planning for Tomorrow.

Happy New Year,

Gina Ross Murdoch
MSAA President & CEO

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2016 – A Work-in-Progress

By: Matt Cavallo

Last year at this time I wrote about how small changes can make a big difference in the New Year. Some of the advice from that post included: developing a financial plan, changing eating habits, exercising, getting back on your schedule and setting attainable goals. I used this advice to make major changes in my life which led to a year of self-renewal. This doesn’t mean that I achieved all of my goals. Rather, I found that at the start of 2016, I am still a work in progress. Let me explain.

Exercising was one small change in 2015 that led to a big difference in how I felt. Let me first state that I am no workout warrior and have spent a lifetime of avoiding working out, but I knew that it would make me feel better so I took the leap. I started going to the gym three days a week. Not only that, but I was riding my bike back in forth to the gym to get in 10 miles of cardio each day. I started to see real results in about three months. Then, during a routine work out I felt that I tweaked my neck a little bit. Because of my past multiple sclerosis episodes and ensuing cervical fusion, I wasn’t about to risk further injury. So, I called my neurologist who scheduled an MRI and referred me to physical therapy. My goal for 2016 now include starting physical therapy to strengthen my neck so I can return to the gym and resume my previous work out plan.

Developing a financial plan, setting attainable goals and sticking to a schedule were also critical to my 2015 success. My wife and I set a goal of being able to quit my day job and pursue my writing, speaking and clinical education full time by 2016. In order to do this we needed to get our finances in order and create a schedule that allowed me to build my business while still completing my full-time commitments. This required a lot of work and sacrifices. However, careful planning allowed me to make sure that I fulfilled all my commitments while remaining balanced with family life. In December of 2015, I was able to leave my full-time job and pursue to my business full time. We knew that starting a business while having multiple sclerosis and a family is a big risk but now I am living the life that I always wanted to and my multiple sclerosis is not getting in my way.

The one resolution for 2015 that I failed was controlling my eating habits. It is hard to eat right, especially with traveling for work and raising young boys. As I celebrated my last birthday this past summer, I realized that the pounds were not melting off the way that they had in the past. The holidays added some extra weight and as I am writing this I am ten pounds heavier than I was last year. Those extra ten pounds create fatigue and numbness for me and my multiple sclerosis. Now in the New Year, I have started eating salads for lunch each day and cutting back on refined carbohydrates. I am also riding my bike again. I realize now that the metabolism of my youth is not coming back and that my eating decision can affect my MS symptoms. In 2016, I am making a commitment to make change in my diet for my health and well being.

The thing about it is I have realized that I am in charge of all decisions I make in life. Some of the risks I have taken or the changes that I have made have been tough. The easy thing would have been to do nothing. With hard work and determination I took control of my life and you can do the same with yours. If you are reading this post maybe you want to make changes but don’t know how. The MSAA has great resources in all of these areas from financial planning and fitness to goal-setting and diet.

To start 2016, I am still a work in progress and that is OK. The first step in change is making the decision to do so. Once you have, you’ll be glad you did. From my family to yours, Happy New Year’s. Believe that you can be the change you want in 2016!

*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 Art of Reflection

By: Meagan Freeman

The start of a new year brings with it the opportunity for each of us to do an internal review, analyzing the things we experienced during the past 12 months. With an illness like MS, we are constantly challenged to evaluate our treatment choices and lifestyle decisions, and this time of year is a wonderful time to do some reflection. How did we feel during the past year? How many relapses occurred? How are we feeling now compared to the previous year? Are there things we would like to change, or are we content with our current state of health?

Life with MS brings constant, daily “fluctuations,” with some symptoms appearing and quickly disappearing, and others seeming to accumulate and resolve very slowly or not at all. I find that looking back over an entire year, comparing full years rather than days, is more helpful in determining whether my treatments are successful. It is important to keep an optimistic attitude despite our condition, and try to see the coming year as a time of opportunity and renewal.

I always like to spend time around January 1st reflecting on the past year; doing a sort of “life review,” and analyzing the success, failures, and learning opportunities. I am always amazed at how many things have changed during the year, and it takes the perspective of time to realize that. Sometimes, we feel that everything is “stuck,” standing still, and no progress is being made. However, if we simply turn back and look at how far we have come, we can see that everything changes.

Often, I hear other MS patients asking why a cure hasn’t been found yet, why it seems that no progress has been made. I would argue, quite the contrary. From a historical perspective, we can see incredible progress. We have come such a long way in our fight against this disease, even though we haven’t quite reached the end of the battle. We have 13 disease modifying drugs in 2016, and in 1992 there were none. Isn’t that a striking statistic? In just over 30 years, MS has gone from being untreatable, to having 13 possible treatment options. Much progress has been made, and we need to try to keep our collective eyes on the finish line, toward the inevitable day that will bring an ultimate cure for this disease. There is much to be hopeful for, and much to be grateful about. Never lose hope, and stay strong knowing that you are never alone. Happy New Year to all!

*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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