Creating a Different Kind of Holiday Season When You Have MS:

Posted on December 2, 2013 by MSAA

Now that Thanksgiving has come and gone, it is easy to get wrapped up in the holiday bustle. Many people get so focused on decorating and shopping that holiday thoughts change from decorating enough to feel festive and finding gifts that spread cheer, to the bigger and fancier (and more expensive) the gifts and decorations, the better the holiday.

So, before we all get wrapped up in consumerism, I would ask you to think about creating a different kind of Holiday Season this year. Instead of having said your yearly, “Thanks” on Thanksgiving, carry that idea over into the rest of your holidays by creating a Gratitude Journal.

You might be asking, “What is a Gratitude Journal?”

Several studies have shown that individuals who participate in gratitude-based activities may have an improved sense of well-being. So, I would challenge you to get either a specific journal or notebook (or smartphone app) and assign that as a specific place to write each day one thing for which you are grateful. Try to spend at least 10-15 minutes thinking about what you are grateful for, why you are grateful for it, and how it impacts your life before you write it down. At the end of each week, spend a little time to read over all the things you have written down over the last week.

At the end of the month, reflect back. Has this activity helped to keep you centered and focused during the Holiday Season? If so, this may be an activity to keep up throughout the year, reminding us that Holiday Season or not, upon reflection there are things large and small for which we are grateful.

Having MS: Alone For the Holidays

Posted on November 25, 2013 by MSAA

By Gayle Lewis, Ph.D.

It seems inevitable that, come the holiday season, which for some starts not just with an actual acknowledged date of “celebration,” but with the first signs of winter’s cold, it’s not the feelings of cheer and joy and brotherly love that abound, but rather feelings of sadness, loneliness and feeling very much alone and isolated. Why? After all, Thanksgiving, Christmas, Hanukah, New Year’s are times of social gatherings, shared rituals and reminiscences. How come we all can’t just hop on board and feel festive and full of holiday spirit? And how come someone who has MS might just be feeling those aforementioned lows more deeply and profoundly than someone who is not struggling with MS’s chronicity?

Multiple sclerosis, whether it’s the more invisible kind or the more obvious symptomatic, renders the sufferer to feel “different” ALL THE TIME. And not necessarily different in the “I am special” way. “Different” in this case often means, “I don’t belong,” “I don’t fit,” “No one gets me or understands me.” And holidays, being a time for gatherings, friends and family, when you already feel like you don’t belong, it can feel more intensely uncomfortable being a joiner because it’s what is expected during holiday season. In addition, the common Norman Rockwell–like characterization of the holidays can seem unreal to people whose families don’t fit the traditional-nuclear-family mold due to circumstances beyond their control, and having MS can exacerbate some of the complications there already in trying to fit into the mold.

It’s been my experience that many family members of people diagnosed with MS have not made an effort to understand their family member’s disease due to fear, disinterest, or distance that existed even prior to the time of diagnosis, and/or the patient actively deciding NOT to tell that he/she has MS. In the latter situation (which happens quite often), whatever holiday loneliness or feeling as if they do not fit, it is due to active participation of the patient with MS. To be sure, I am not blaming the patient for not sharing about their disease. There are often family histories and dynamics that inform that decision…and inform ANYONE’s feelings about the holidays, whether joyful or lonely. But MS IS a lonely disease, even if you tell someone about it, because most patients, at least the ones with whom I work, feel like no one gets it. And how could someone with MS not feel especially alone during the holidays at a time when you already feel like you don’t belong, as per usual anyway?

*Gayle Lewis, Ph.D. is a psychologist and psychoanalyst in private practice in New York City, Associate Clinical Professor, Department of Neurology, at NYU’s Langone Medical Center, and Staff Psychologist at Juilliard’s Counseling Center. Additionally she is a graduate of both the American Institute for Psychoanalysis and the EDCAS program at the William Alanson White Institute. She specializes in the treatment of trauma, eating disorders and individuals with Multiple Sclerosis. See www.drgaylelewis.com

Why I No Longer Fear the Holidays and Why You Don’t Have to Either (Even When You Have MS)

Posted on November 22, 2013 by MSAA

By Jerri Burtchell

When I was a kid I loved this time of year. Snow on the ground, great food (except for that weird Jell-O salad Aunt Mary always made), and presents at Christmas. Things have changed since I was diagnosed with multiple sclerosis (MS) in 1999. Now a sense of foreboding overcomes me each year, right after Halloween.

I’m not the “bah-humbug!” type, but I do hail from a long line of worriers. Maybe we were meant to be “warriors”, but some genetic mutation caused a typo. Now we fear things our imaginations dream up. The “what if” syndrome. My MS diagnosis has elevated my worrying to a whole new level.

Holiday time is prime “what if?” time for me. What if I can’t navigate the busy malls and grocery stores? What if the handicapped parking is all taken up? What if I don’t have enough money to give everyone gifts? What if this fatigue keeps me from enjoying the family I rarely get to see? And the biggest one: What if all this worrying stresses me out and I end up relapsing?

One Christmas, that changed when our family shared what other families keep secret. We all admitted that gift buying was stressing us out. Not only the act of shopping, but the dent it was putting in our pocketbooks. Our name isn’t Trump or even Kardashian. We don’t have money or personal shoppers. What a relief to know we all felt the same way!

So we started something new. When we gather at Thanksgiving now, part of our tradition is drawing names for Christmas gift exchange. We’ve instantly gone from buying gifts for ten to buying for one. Stress diminished. To take it a step further, we can only spend $20. Now the stress was melting like snow in the spring.

Christmas morning is no longer spent in a flurry of mindless paper shredding as we tear through one present after another. But the only ones disappointed are the cats with less cardboard boxes to explore. We still have the experience of gifts under the tree, but now it’s a single, more thoughtful, often handmade gift.

And we quit competing with Martha Stewart for the most elaborate side dishes and desserts. Not everything has to be perfect. We’re enjoying things on our terms, not those set forth in Better Homes and Gardens.

One Christmas I got a late start putting up the decorations. It seems MS fatigue brings out the natural procrastinator in me. So imagine my panic when I went to get the fake tree from the garage only to find it was now home to a family of mice.

I took a few deep breaths and channeled MacGyver. Before you know it, a big vase was the base for my silver, spray-painted Christmas “stick” – a dead branch I’d dragged in from the yard. With a string of lights and a few baubles here and there, the problem was solved. The best part is, it was cheap, handy, and I finally made use of an idea I’d pinned on Pinterest.com.

So in freeing myself from the stress that comes with striving for perfection, the reward I got was more quality time to spend with those I love–the only gift that counts.

Life passes too quickly and before you can say, “Black Friday,” it’s all over. I can safely say I won’t be lying on my deathbed lamenting over all the bargain basement prices I missed out on. It’s the people in my life and the connections we made that will be my fondest memories.

I won’t be stressing over the perfect gift for someone this Christmas, or if I forgot to put the marshmallows on top of the sweet potato casserole…again. I’m going to be counting my blessings in each smiling face that comes through the door.

So forget what the commercials all tell you to do. When you give yourself permission to lower your expectations of perfection, miracles happen. You have lots of laughs, give lots of hugs, and take lots of pictures. Aren’t those the memories you’ll treasure most in the end?

And that gem of wisdom is my holiday gift to you. (It was handmade and cost me less than twenty bucks – Enjoy!)

References: http://www.healthline.com/health-slideshow/pictures-multiple-sclerosis-psychological-changes

*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.

Holiday Hustle and Bustle: Tips for People Living with Multiple Sclerosis

Posted on November 8, 2013 by Angel Blair

The holiday season is upon us! As Halloween has come and gone, we find ourselves faced with the upcoming months of holiday preparations. Cooking, baking, shopping, wrapping, and family visits are just some of the tasks individuals embark upon during this busy time. Because the holidays can be a bit hectic, it’s helpful to make preparations and plans to combat the chaos that can ensue during this festive time. To make time for activities you enjoy and to reduce the stress and anxiety we all know can occur during the holidays, here are some ways to make the holiday celebrations more manageable:

Prioritize your tasks. Make a list of things you would like to accomplish, and order them in a way so that important things get done first.
Take breaks. The holidays can be both mentally and physically stressful on the body. Be sure to sit and relax in between tasks, even if just for a few moments.
Think “Potluck!” If you’re hosting the holidays at your residence, have guests bring something. They can bring their favorite dish or dessert to help contribute.
Ask for help. You can ask family members/friends to go shopping, clean, or help with food preparations for the holiday meal to lessen your work load.
Prepare in advance. Some meal preparations can be done ahead of time for a holiday gathering. The week of the holiday, spread out tasks that can be completed beforehand so that on the day of there’s less to do.
Relax and Enjoy! Even though the holidays can be stressful, be sure to take time out to enjoy the festivities and spend quality time with those you care for!

What are some ways you prepare for the holidays?

November Artist of the Month: Celebrating the Work of Artists Affected by Multiple Sclerosis

Posted on November 6, 2013 by John MSAA

MSAA is very proud to present our 2013 Art Showcase – celebrating the work of artists affected by MS.

We have received many wonderful submissions from across the country and are delighted to share their work and their stories with you. Please visit our online gallery to view all of the MSAA Art Showcase submissions.

November 2013 Artist of the Month:
Julie Crow – Damascus, VA

From the Artist:
“After a couple of really bad falls from lack of balance and coordination, resulting in hip pins and a broken pelvic bone, my companion, Gino, an accomplished oil painter, brought some pastel pencils and a drawing pad to the hospital for me to have something to focus all of my energy on while I was immobilized. In the hospital and inpatient rehab, I drew pictures of friend’s pets and relatives. The baby is a friend’s first grandson, and I drew this from a photo taken at the beach. She was always there for me during the hard times. I have also drawn a few others for folks to show my appreciation for their time and their love. I’ve created a Circle of Hope link with MSAA…the amazing thing is that I’ve never painted or drawn. I truly could not draw a stick man before this last incident. I haven’t lately due to some problems, but am hopeful for tomorrow.”

Calling All Artists with MS:
It’s that time of year – MSAA is now accepting submissions for our 2014 Art Showcase! If you haven’t already done so, submit your best artwork by December 16th 2013 for a chance to be a part of next year’s Art Showcase.

Submit your artwork for the 2014 MSAA Art Showcase.

Planning for the Future: Long-Term Care and Advance Directives

Posted on November 4, 2013 by Samantha Schech

Recently I attended a training regarding long-term care planning that really got me thinking about what I could be doing now that may help my family and me in the future. For many, this is a difficult topic to think about. No one wants to plan their end-of-life care, or make arrangements for a nursing home when they are relatively young and relatively healthy. But the reality is, we do not have a crystal ball, and we cannot predict the future.

According to the presentation, approximately 70% of Americans eventually require some form of long-term care. With the cost of some facilities ranging from $5000 to $10,000 a month, the idea of self-pay is extremely unrealistic. Currently, Medicare does not provide long-term care insurance that would provide the additional support for care facilities. So unless you have a private long-term care insurance plan, or can meet the income guideline for Medicaid, you are stuck paying out-of-pocket for care. With that being said, it is important to look into long-term care insurance plans early on to hopefully purchase a plan with a decent rate.

Another important tip presented was about having the discussions with your loved ones and family members regarding end-of-life decisions. This can be a very challenging conversation to have; death and dying are often difficult subjects. But less than 20% of Americans have an Advanced Directive or a living will. For the 80% that do not, I am sure a large portion of them have never discussed their wishes with a family member. Without an Advance Directive, doctors, nurses, and EMT’s will continue to provide life supporting help to prolong your life. By creating an Advance Directive and creating an end-of-life plan, you are ensuring that your wishes will be followed.

In order to complete an Advance Directive, you must be 18 years of age and of sound mind. The document must be in writing and signed by two adult witnesses. It is suggested that you provide a copy of the Advance Directive to your doctor or care facility and provide a copy to a trusting family member. It was suggested that Advance Directives and other important information should not be kept in a lock box, rather, a storage cabinet along with other documents that may need to be accessed by family members.

This training was an eye opener for me and as if I wasn’t already a neurotic “what if” planner, provided some valuable information. I wanted to share some of the things I learned in this blog, with hopes to spread the word along to others.

The Neuropsychological Evaluation for People with Multiple Sclerosis: Part II

Posted on October 30, 2013 by MSAA

By Dr. Lauren Strober

For many individuals, medical testing, especially testing for cognitive changes, may cause fear or anxiety.

How scary of a process is it? For some, undergoing cognitive testing when one has already noticed a decline is very intimidating – many fear that noticing a change is not as scary as confirming there is an actual change. But, like anything, knowledge is best and with MS, knowledge is the best way to tackle a variable, unpredictable disease. Moreover, more often than not, individuals find that they are doing better than they think and that although there are some weaknesses, they also still have their strengths. Again, knowledge is power.

As far as the process itself, a full neuropsychological evaluation can last anywhere from three to five hours and is typically divided over a few days. Cognitive testing can be extremely tiring and that is not just specific to MS. Many patients report needing a nap after! But, most neuropsychologists are aware of this and will offer breaks and other accommodations to make the experience as painless as possible. After the evaluation is completed, you will receive written and verbal feedback as to how you did and what the recommendations are based on your individual cognitive profile. Such feedback and knowledge of one’s abilities and difficulties can be very empowering and assist individuals with taking the right steps in assuring that they can tackle their MS and its symptoms head on!

If you feel that you can benefit from cognitive testing and/or are noticing changes in your thinking, do reach out to your neurologist or a neuropsychologist in your area today.

*Dr. Lauren Strober is a board-eligible clinical neuropsychologist with over a decade of clinical and research experience in MS. She is a Research Scientist at the Kessler Foundation and presently holds a National Institutes of Health (NIH) grant examining the factors most associated with employment status in MS.

The Neuropsychological Evaluation: Allaying Your Fears and Recognizing its Value for the MS Community Part I

Posted on October 28, 2013 by MSAA

By Dr. Lauren Strober

Many individuals with multiple sclerosis (MS) will begin to notice the subtle cognitive changes typically associated with MS. Individuals may report being more forgetful, unable to multitask as well as they used to, or feeling as if their thinking is slowed down. Some may say, “I feel as if I am just not functioning on all four cylinders.” They would be right. In fact, anywhere from 43% to 70% of individuals with MS suffer from some degree of cognitive dysfunction. Most often, it is slowed thinking or problems with memory that are most noticeable and known to have the greatest effect on day-to-day functioning – this can be anything from preparing a meal for the family, doing everyday tasks, or even successfully doing one’s work.

When cognitive symptoms begin to interfere with such tasks and one’s overall quality of life, it is best to consider speaking to your neurologist about undergoing a neuropsychological evaluation. A comprehensive neuropsychological evaluation consists of a battery of cognitive tests assessing language, attention, verbal and visual memory, processing speed/working memory, and executive functions (e.g., planning, organization, reasoning) as well as a full psychological evaluation assessing things like mood, anxiety, sleep, and fatigue. These latter factors are known to also play a large role in cognition and are, fortunately, reversible with effective treatment. For instance, while slowed thinking is common in MS, consistent poor sleep or depression can also lead to cognitive disturbances during the day and further compound existing cognitive disturbances. Thus, proper identification of one’s current cognitive abilities as well as factors that can affect cognition (such as poor sleep) is the first step in taking appropriate steps in managing any cognitive changes associated with MS.

So, when is a neuropsychological evaluation right for you? Again, if you are noticing changes and feeling that they are beginning to impact your daily functioning and quality of life, you should consider having a neuropsychological evaluation. This is particularly important if you are employed and/or are a student and can benefit from some recommendations and strategies as to how best maintain your job or schooling, while working to your strengths and minimizing reliance on your weaknesses. Formal documentation of such cognitive difficulties can also assist with obtaining appropriate accommodations at work or school. Finally, some recommend completing a brief neuropsychological battery such as the Minimal Assessment of Cognitive Functioning in Multiple Sclerosis (MACFIMS) at the onset of one’s illness so that there is a baseline to which patients can better monitor the progression of their illness and cognitive changes associated with such.

If you think neuropsychological testing might be helpful for you, stay tuned for PART II on Wednesday to learn more.

Dr. Lauren Strober is a board-eligible clinical neuropsychologist with over a decade of clinical and research experience in MS. She is a Research Scientist at the Kessler Foundation and presently holds a National Institutes of Health (NIH) grant examining the factors most associated with employment status in MS.

Working for the Multiple Sclerosis Association of America

Posted on October 23, 2013 by MSAA

By Becky Remington

Greetings from the South Central Region. Last week, I attended a patient education program in Bentonville Arkansas, and as always, I feel like I have the most wonderful job in the world. One of the perks of my job is meeting amazing, warm, and caring people. Some of these people have MS, some of them are family members and spouses, and some of them come to the programs with their best friend, who just happens to have MS. And many times, as was the case this time, complete strangers sit together, start talking, share a meal together, talk some more, and exchange phone numbers or email addresses before the end of the presentation.

Last week’s talk was on Managing Stress and Anxiety. The speaker, a psychologist from Dallas TX, was excellent, giving a lot of practical advice and tips to those that attended. I have no doubt some of his stress relieving exercises will find their way in to people’s lives and make a difference in helping to keep some MS symptoms at bay. But I also know that those who made new friends left with something even more valuable.

Becky Remington is MSAA’s South-Central Regional Director

Keeping Track of your MS

Posted on October 21, 2013 by Ashley

I thought I would share a “tip” on how I keep track of my MS – so I’m able to recall things when needed or share information with other members of my health care team (who are not my neurologist).

So here is what I’ve done. I went and bought a HUGE binder… and I requested all my Medical Records… Personally, I had to get medical records from my diagnosing neurologist (general neurologist) and my MS Specialist neurologist. But I also got my records from all my other doctors.

I find this a lot easier when I need to recall past treatment… while I can sit here and name off MS treatments I’ve taken, I can’t always recall the dates in which I was on certain medications and/or received a specific treatment for something.

My medical records binder also includes my MRI reports. I also requested my MRI reports from the radiology clinic, because I’ve found that when I have a followup appointment, and I have the records on hand… it’s easier to go over with my neurologist… especially since results can take some time to be sent.

Now let me say that this is a work in progress… because I’m always getting more medical records… I usually collect them after I have a “change” in my health… or every 6 months.

I also take the time to place my records in order by date. So it’s kind of like a binder timeline of my MS…

I’m currently working on getting dividers for the binder. While I like things in order by date, I thought it would be beneficial to categorize things further, for example: Primary Care, Neurologist, MRI Reports, etc. I’m also contemplating getting a small binder for each category, so if needed, I can take a binder with me.

It’s all about personal preference… and honestly… some people could carry their medical records with them at once… but I have A LOT of records, so that wouldn’t be so easy.

It may not be needed a lot… but I can tell you that I’m very happy that I requested my records… because it has helped me make decisions since I was diagnosed. For example, I decided to change from my diagnosing neurologist, to a specialist. I had been contemplating the idea, but then I went over my medical records and I saw that there were things documented in the records that were “discussed” with my mother and I… that actually were NOT.

Just know that as a patient, you have the rights to your medical records. You never know when they might come in handy and they may help to keep you on track.

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