2013-The Year of Changes

Posted on December 4, 2013 by Samantha Schech

2013 has been a pretty substantial year in my life. As I grow older, I start to reflect back each year, just to stay in tuned with myself. I have accomplished a lot this year, in starting my career with MSAA, moving, and feeling more emotionally complete.

It is hard not to be sentimental while reflecting back; some of my favorite times are spent talking about past life events or some of the interesting people who have come into our lives. I strongly believe that there is a lesson in every moment, but sometimes you have to take a step back to see it.

Although our physical surroundings and lives may have changed over the years, our inner souls remain the same. We are still the same person on the inside. For many, it can be a challenge to accept these changes; they wish to be the person they were before. However, I think we are that same person, but maybe we have become so bogged down with all of the “stuff” outside of ourselves, we have lost touch with our inner souls.

There is a quote, by Bryant H. McGill, “Change will never happen when people lack the ability and courage to see themselves for who they are”. Take some time this holiday season to find yourself again. Maybe reach out to an old friend or family member and reminisce about the years.

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.

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.

Angel’s Tips for the MS Community on Getting Prepared for Winter

Posted on November 20, 2013 by Angel Blair

Brrrrrr…..Is that winter right around the corner? It sure feels like it! In some parts of the country, people don’t have to wonder what day winter will show up, as some states have already had their first bout of snowfall this season. Because winter is highlighted as the cold and flu season, it’s important to take precautions when you can so you can stay feeling well; after all, it can be a very busy time of year!

Flu Shot: Yay or Nay?

The flu vaccine is one precaution individuals take in preventing the spread of the flu virus. It’s important to consult with your doctor to determine if getting a flu shot is appropriate for you. For more information regarding the flu vaccine, see the MSAA article Vaccine Safety and MS at https://mymsaa.org/news-msaa/924-vaccine-safety-ms

Germ Prevention

Cold and flu season is an important time to be cautious in preventing the spread of bacteria. It’s helpful to keep things sanitary. Use disinfectant wipes to clean surfaces in your home and car. Wash your hands regularly to avoid the spread of germs to your mouth/face, and avoid putting your hands to your face in public spaces, especially in doctors’ offices or health facilities.

Close for Comfort

With winter bringing holiday celebrations and gatherings in its midst, it can be tricky to stay in a germ-free zone. Be aware of those loved ones who may be sniffling and sneezing, because as much as it’s nice to receive their embrace, it’s not as lovely to receive the germs. Stay alert in public spaces like stores during the holiday rush, as bacteria likes to travel in crowds. Disinfect with antibacterial soaps and sanitizers and leave those germs out in the cold!

What’s your plan in getting prepared for winter?

2010 – An MS Relapse for the Holidays Part Two – Recovery

Posted on November 15, 2013 by MSAA

By Matt Cavallo

As I sat in an infusion suite chair to treat my holiday relapse, I started to feel really sorry for myself. I wasn’t sure what I had done to deserve this MS fate. I thought about my young boys and how unfair it was to them that their dad was having another relapse. I thought about the additional burden that this relapse was putting on my wife, having to care for two toddlers on her own. All this was happening during the holidays, just two months after I had gone through an anterior cervical fusion. To top it off, I was experiencing these uncontrollable emotional outbursts, or PBA as my neurologist called it, which were embarrassing me to the point of not wanting to go out in public.

Then my thoughts changed. I knew at that moment that instead of feeling bad for myself that I was going to have to reach deep down and pull myself together for my wife and kids. My wife is a stay-at- home mom and I am the sole provider, so I knew that if I didn’t get my act together, our quality of life as a family was going to go downhill and fast. I needed a plan.

Steps to Recovery

Be honest – During this relapse, I had convinced myself that it was every factor besides MS. I let the symptoms go on for too long and they were affecting my home and work life. I was going to have to be honest with myself and others about what I was experiencing and that it was related to my MS.
Reduce additional holiday stress – The holidays add stress to an already stressful life. If I had to go food shopping or present shopping, I would go at off hours like late at night to avoid the stress of a crowd. I made lists to prioritize my tasks and would check items off the list. For a list of more ways to reduce holiday stress, check out Angel’s Holiday Hustle Blog.
Gain control – When my emotions began to get the best of me, I would take a break. MS emotional outbursts can come on at any time. A good way to manage emotional outbursts is to remove yourself from the situation, take deep breaths or find a distraction. My favorite distraction is to walk my dog.
Do not take on too much – I have a habit of overdoing. During the 2010 holiday relapse, I learned to enjoy the simple things. Holidays are about spending time with family and friends;try to relax and enjoy that time without overdoing it.
Talk to your doctor – I waited too long to see my doctor. If you are experiencing symptoms, you should contact your doctor as soon as possible.

As the calendar turned to December in 2010, I was feeling like the worst was over. The medicine had run its course. I was feeling back to my normal self. Gone were the emotional outbursts, weakness and fatigue. I was back to normal at work and home life now returned to the joy of watching my boys. I didn’t bother with the stress of trying to compete for deals on Black Friday or hanging Christmas lights from the rafters. Instead, I realized that the true meaning of the holidays was to be there in good spirits for the ones you love. As Thanksgiving 2013 approaches, I am thankful for everyone in my life and continue to enjoy simple stress-free holidays with the ones I love.

Happy Thanksgiving, everyone!!!

References:

https://msaablog.wpengine.com/holiday-hustle-and-bustle-tips-for-people-living-with-multiple-sclerosis/

http://www.healthline.com/health-slideshow/pseudobulbar-affect-multiple-sclerosis

*Matt Cavallo was diagnosed with multiple sclerosis in 2005. Matt is an MS blogger, author, patient advocate, and motivational speaker. Matt also has his Master’s degree in Public Health Administration. Matt is the proud father of his two sons, loving husband to his wife, Jocelyn, and best friend to his dog, Teddy. Originally from the Boston suburbs, Matt currently resides in Arizona with his family. To learn more about Matt, please visit him at : http://mattcavallo.com/blog/

2010 – An MS Relapse for the Holidays Part One – Relapse

Posted on November 13, 2013 by MSAA

By Matt Cavallo

In November of 2010, I was still recovering from neck surgery. My neck had been a problem since 2005, when Transverse Myelitis made my spine swell up. The swelling pushed my vertebrae and discs out of alignment. Eventually, just the stress of daily activities caused a piece of vertebrae to fracture causing severe stenosis of the spine. My neurologist told me that if I didn’t consider surgery that there was a pretty good chance that I might become quadriplegic.

I worked for a Neuroscience clinic at the time and was friends with the neurologists at the clinic. I had them each independently look at my MRI films. All of them agreed with my neurologist- surgery was inevitable. I had my cervical spinal fusion surgery in early September of 2010. In order to prepare for the surgery, I had to stop taking my MS medicine. I was also instructed to stay off my medication after the surgery while my body was recovering. During my recovery period, I became less concerned with getting back on my medication and continuing treatment. I had hit my breaking point, and I just didn’t feel like fighting anymore.

As the calendar approached Thanksgiving, I started to become symptomatic. I hadn’t been on any MS treatment for ninety days and was noticing increased fatigue and weakness. At the time, I attributed my symptoms to working fulltime while enrolled in a Master’s program along with raising two boys, ages three and one, who weren’t exactly allowing for a full night’s sleep.

While the weakness and fatigue were troubling, I also started experiencing uncontrollable mood swings. I would break into hysterical laughter at inappropriate times and then break down and start crying and become inconsolable. I am not a person who typically shows intense emotion, so these kinds of outbursts were completely out of character for me.

Still, I didn’t think that anything was seriously wrong with me. I thought that the lack of sleep with a teething one-year old coupled with my ongoing recovery from spinal cord surgery was why my emotions wer running rampant. Then I started forgetting tasks at work that I typically would complete automatically. I was also dragging my leg and having problems with vision in my right eye.

During the week of Thanksgiving, the clinic was slow. The nurses had become worried about me. The day before Thanksgiving, we had very few patients and my practice manager called my neurologist and got me an order for an MRI. I was resistant. I attributed my symptoms to the stress that I was experiencing at work and at home, saying that having to prepare Thanksgiving dinner tomorrow was the cherry on top of the cake. Still, she persisted and took me over to radiology at the hospital and got me a follow up appointment with my neurologist the following Monday.

My MRI studies came back with my lesions glowing like lights on a Christmas tree. I was defeated. When was MS going to let up? Now, I had to tell my wife on the day before Thanksgiving that I was having yet another relapse. However, when I talked to her about it, instead of crying, I started to laugh uncontrollably. During Thanksgiving dinner with her family, I was having emotional outbursts and crying about how beautiful the Turkey and potatoes looked. After dinner, Jocelyn talked to me and she wanted me to talk to my neurologist about my emotions, along with my other symptoms.

That following Monday, I found myself in the familiar chair of my neurologist’s office. He confirmed that I was having a relapse. He prescribed three days’ IV Solu-medrol to help with the exacerbation. I told the doctor that I was having these weird emotional outbursts and was concerned that the IV steroids would further complicate my already emotionally unstable state.

He told me that it sounded like I was having something called Pseudobulbar affect or PBA. According to a Healthline article, “Pseudobulbar affect (PBA) is a condition in which you suddenly start to laugh or cry. The reaction isn’t triggered by anything—like a funny joke or sad movie. You just burst into laughter or tears without any real cause, and you can’t stop laughing or crying.” He wanted to stay on course with the treatment because the PBA seemed to be related to my MS relapse, but to call him if I started to feel out of control.

Tune in for my next blog to find out how I was able to recover from my holiday relapse and strategies I used to gain control of my emotions and stress levels.

Reference:

http://www.healthline.com/health-slideshow/pseudobulbar-affect-multiple-sclerosis

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?

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.

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