2016 Improving Lives Benefit

AOM

Wednesday March 30, 2016
The Downtown Club
Philadelphia, PA

MSAA supporters from across the country will be joining us to honor the accomplishments of MSAA champions in the MS community.

Our Honorees:

Susan Russo, MSAA Art Showcase Artist

Douglas G. Franklin, MSAA President & CEO from 1999-2015

For more information about MSAA’s Improving Lives Benefit,
please visit: support.mymsaa.org/benefit


Our Online Auction is Now Open! Register today for pre-bidding.

 Event attendance is not required for this special opportunity.

Click the Online Auction link below to view the packages and register for bidding.

More packages available soon.

live auction

 Auction will close on Wednesday March 30, 2016 at 9:00 PM EST

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Meet New MSAA Guest Blogger Lauren

By: Lauren Kovacs

My name is Lauren Kovacs and I am 41. The stress of moving from California to rural Virginia poked the MS monster for the first time at age 16. My official diagnosis didn’t show up on stage until I was 21.

I was a pediatric patient with optic neuritis. This meant no learning to drive, no depth perception in gymnastic, and crashing into hall walls at school. I was not in a good place, but the MS monster had only stirred.

After nine months, my vision returned. Life went on. I went to college and made the university’s cheer team. MS was never the diagnosis at 16.

I worked part-time, took a full load of classes, and was a college athlete. The summer before my senior year, after a very tiring and hot week at cheer camp, I got sick. I rode home on the floor of the student-athlete van. I unknowingly had poked the monster again.

The next day, I went numb from the neck down. So began my quest for an answer. Some thought it was a virus and others thought I had been dropped in cheerleading camp and had a slip disc. I stumped all the athletic doctors for the university’s athletes. Cool. The best was a civilian doctor who told me I had a stroke and sent me back to campus with muscle relaxers.

I went back to my original neurologist. An MRI and other tests came back showing MS. The doctor told me not to research it. I was sent back to school. Confused, alone, angry, and tired was the casserole I was served. Newly diagnosed and alone, questions swam in my head and some chocolate in hand, as comfort.

I didn’t make it to nationals for UCA and I felt my teammates were more worried about re-doing the routine without me than my devastating diagnosis. Some even accused me of faking in order to skirt practice.

I kept going. I pushed on. I graduated, got a job, and married my sweet heart. I saw a new doctor who put me on Avonex. I had baby boy one. Four months later, I was hit with a horrible flare leaving me numb from the neck down again. After slithering around on the floor with a new baby, IV steroids were prescribed. Life went on. I did Appalachian clogging and was very active. I started figure skating instead to combat the heat.

Baby boy two arrived without any MS issues at all, except my fall down the stairs, which I can blame on MS. He was premature with health issue. A toddler and a sick infant meant stress. I finally changed doctors, after five years, because he refused to prescribe anything, but Avonex. He kept telling me I would get used to it.

The new doctor prescribed Copaxone, not long before we moved to North Carolina. I took Irish dance lessons, once we moved. The two boys were doing well. Heat, fatigue, and stress were manageable. The monster appeared to be contained.

Baby boy number three arrived and that began my slow decent. The monster was waking up. I was able to nurse for eight months. I was thrilled. IV steroids forced me to end that scene. However, they did their job and I changed doctors again. That is five neurological, if you are counting.

I had a new doctor who finally believed three healthy boys and me. Life was good, too smooth really. When my youngest was four, rocks were being thrown onto my path. The Betaseron was no longer working and I began sporting a cane. The monster was fully awake.

No worries, I can adapt, I thought. We took a Disney cruise with friends and when I had trouble walking onto the boat, I knew things were changing. I sat and waited for a cast-member to get a wheelchair. I held back tears, but the cast-member said I would enjoy my trip more. I did, but I felt crushed.

By the time my youngest was in first grade, I used a walker. I was also head cheerleading coach at their school. I was officially handicapped and life was getting tougher.

Here I sit, now. I only use a walker in the house. I crawl on my hands and knees, if I am not steady. I have the kids make dinner and there have been times I instruct from face down on the floor. But, I do it and I fight.

MS is a battle and you must never give in. Being realistic and humor go hand in hand with MS.

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Taking a Break

Sometimes we all just need a break from things. No matter what’s going on around you—whether it be in your relationships, work, family roles, etc. there are times when we need to take a step back and reflect on ourselves and our needs. Everyday challenges and obstacles can be difficult enough, but throw something like MS into the mix and the stressors can sometimes multiply. MS demands much from everyone it touches; unfortunately it makes no exceptions or allowances if there are other things already going on—it’s selfish that way. So there are times when those caring for individuals whom MS affects need some respite care-time to themselves.

The term respite means taking a break or relief period from something that may be somewhat stressful, difficult, or challenging. Those who provide caregiving to others may need periods of respite, even if it’s just for a brief time where they can step outside of their environment and do something else. This can be very important in relationships where a loved one provides care for another family member. Relationships themselves require a lot of maintenance most of the time and for them to continue working there are moments where those involved need space and time to themselves.

It’s an innate, human characteristic to feel the need to distance yourself from others sometimes. There are times when we all need to pause and catch our breath and examine our own needs, especially if we’re providing care to others around us. We need to be able to self-care in order to be depended on. There are different types of respite services and resources available, especially to care partners so that they can take time for themselves or other things and know that their loved ones are being cared for.

The following resources can help when searching for respite service information:

Family Caregiver Alliance
Phone (800) 445-8106 www.caregiver.org

Caregiver Action Network
Phone (202) 772-5050 www.caregiveraction.org

Eldercare Locator
Phone (800) 677-1116 www.eldercare.gov

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You and Your Neurologist: One of the Most Important Relationships

By: Meagan Freeman

Finding an excellent Neurologist is one of the first things we need to do after diagnosis with MS. It can be very difficult to choose a random name from a list of covered providers from our insurance companies, and without a solid recommendation from someone we know, we often need to take a “test drive.” Patients and providers are much like any relationship we have in life: Some personalities are a perfect blend, and others will never work together. It is incredibly important to seek out a provider who is not only medically competent, but also a good fit for your personality.

I find that some providers are cold and distant, only seeing patients as a disease process. What about the mind? We are so much more than a body. Providers should always see the patient as a mind-body unit, addressing the full scope of chronic illness. Psychological and emotional symptoms are common, and no one should leave an appointment feeling dismissed.

I am a family nurse practitioner, and we are trained from day one to see the humanistic side of medicine, to view the patient as a whole being, rather than the sum of the parts. The body cannot be healed without addressing the spiritual, emotional aspects of the human being. After being diagnosed with MS, I appreciated this manner of teaching more than ever before.

There is an intricate, indivisible connection between the body and the mind, and treating only one while ignoring the other will never prove effective. There is, what we call in medicine, an “emotional overlay,” to almost every physical issue. Whether this means that the condition is purely psychological, or whether the mind is reacting to a physical issue (anxiety, panic attacks, depression,) the mind must always be taken into consideration when treating every patient.

Our society is very quick to assume that modern medicine has all the answers, a secret book of treatments, available only to those who have attended medical school. This magic book contains all of the recipes for treating illness, and is kept hidden, under lock and key. The providers of the world are assumed to have the ability to fix anything, treat anything, and if they do not offer a fix, they are assumed to be withholding treatment intentionally.

I can tell you, this is not the case. One of the most shocking things I learned while transitioning from a registered nurse to a nurse practitioner was the absolute limitation in options we have as providers. We only have a few things to offer, a few laboratory tests, an x-ray or two, a few medications that may or may not be effective. Most medications also go along with an enormous list of potential side effects that have to be taken into consideration. Many prescription medications are not necessary, and can lead to a variety of new problems. The risk versus the benefit of any treatment needs to be considered. Treating physical illness is not only a science, but also an art; and sometimes, providers simply run out of ideas. Every possible treatment option has been exhausted, and there is simply nothing further to offer. I find that patients are shocked when this is the answer. “What do you mean, there is nothing left to do?” Sometimes, the answer is just that, and we are left trying to cope with our “new normal,” whether it is pain, numbness, weakness, or any other symptom.

When you visit your provider, keep in mind that they may not have an answer for every question you have. Your provider is doing their best, I am sure; but the answer “I do not know,” is an acceptable one sometimes. I always trust providers who admit that they do not have an answer, because this is honesty. If your provider says, “Well, if you really want to take something you can try this…” this is code for- “you really do not need this.” Sometimes, in medicine, less is best. The minimalist approach to treatment is wise, and so many patients have been “overtreated” in recent years. Too many medications, wasteful, unnecessary diagnostic testing, and the resulting side effects and anxiety are major issues in medicine currently. Patients and providers need to take a moment and ask themselves, “Is this really a necessary test or treatment?”

Trust your body to be able to handle most minor issues. Your body is an intricate, well-constructed, dynamic machine that is much wiser than we are as health providers. Now and then, the body might need an extra hand at combating an infection, but not always. Listen to your body! Prevention is the key! Get your immunizations, get some exercise, eat healthy foods, and obviously avoid smoking and alcohol. MS aside, we all need the same basic advice on remaining healthy and living the best life possible.

Questions to Ask Your Provider at Appointments:

1. Do you feel that my disease is well controlled with my current medication?
2. If not, are there other medications available that you would recommend?
3. Do you recommend any other treatments for my current symptoms (alternative or traditional?)
4. How often do you recommend appointments and MRI?
5. Is there any new research that has become available since my last appointment?

Try to develop a relationship with your provider, and if you feel dismissed or ignored, it may be time to consider a change. Like any relationship in life, some people just don’t “click.” But in this case, your health is at stake; so don’t be afraid to find the right fit for you.

*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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Relationship Changes: How an MS Diagnosis Can Change Relationships

By: Stacie Prada

The personal growth that can come after an MS diagnosis affects our relationships drastically. In facing our fears, the unpredictability of MS, and grieving the future we envisioned, our relationships can’t help but change. The experience reveals the dynamics that no longer support our mental and physical health or the future we now need. A friendship or marriage can blossom, or it can crumble from the magnitude and pace of change. And the outcome doesn’t dictate the value of the relationship, determine the efforts taken to maintain it, or judge each person’s character.

I may have been on a life path where my way of interacting would have evolved this way without an MS diagnosis, but I think the diagnosis definitely accelerated my need to take care of myself.

I don’t relate to people exactly the same anymore. I strive to notice when I’m contributing to a poor dynamic, own my words and actions, and distinguish between my issues and other people’s issues. It allows me to have some control over my life instead of unconsciously reacting to circumstances. It also reduces the stress that comes from feeling responsible for other people’s feelings and actions and trying to fix everything.

Some people saw this as rejection or abandonment. Others embraced it, and our interactions flourished. To me it felt like I was supporting them with new behaviors that weren’t at my expense and inviting them to join me.

I appreciate all of these relationships regardless of where they are today. These people are all a part of my life and history. I want to support them in their own life paths that are best for them whether our paths continue to cross or not.

*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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I Love Me

Valentine’s Day is only days away. While it may sometimes seem to be a bit over-commercialized, it has its merits. Valentine’s Day is a holiday that allows us to show those we truly care about how much we love and appreciate them. However, it can also be a difficult day to face if you aren’t in a place where you are okay with yourself.

So, here are some things to think about to help you take care of yourself.

• Put yourself first. This doesn’t mean you should be selfish and be “All about me all of the time”. It means you can’t help others if you don’t take care of yourself first. You need to be in a positive frame of mind and feeling good about yourself to have the best impact on your loved ones.

• Cut yourself some slack. Don’t be so hard on yourself. We’re all humans; we all make mistakes. You can dwell on the negatives for a little bit in order to try to learn from your mistakes. But, make sure you also dwell on the positives because I’m sure you’re making positive strides as well.

• Friendship is a two way street. Your friendship is a gift and you get to choose to whom you give it. If someone doesn’t appreciate it, then they don’t get to continue receiving your wonderful gift. If they do appreciate it, then they will return your gift in kind.

• You have a right to your feelings and your opinions. You shouldn’t let others make you feel bad because your feelings on a certain matter don’t match theirs. If you aren’t up for doing something every now and then, don’t be afraid to say “no”. Just try to do it in a way that doesn’t hurt other people’s feelings and they will be more understanding.

• No one can make you feel bad. Your emotions are yours. Things happen, to put it in a PG-rated way. You control your reaction to things or people. If you don’t let them affect you, they won’t affect you.

Happy Valentine’s Day!!

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Pamper Yourself

This month some people will find themselves celebrating Valentine’s Day, a holiday that celebrates love, warmth and thoughtfulness. The day isn’t made just for couples but for all who wish to rejoice in caring and kindness—whether it be with family, friends, or finding time to care for yourself. You can use Valentine’s Day as a reason to stop and consider what you can do just for you; with no schedule or agenda to follow, just an opportunity for a little ‘me’ time. Now this doesn’t necessarily mean that you have to break the bank spending money on material things to make yourself feel pampered. There is no gesture or act too small when it comes to caring for yourself. Approach it with the question ‘I have time to do something for myself, what would make me happy?’ You may find the list of possibilities longer than you thought and that you’re overdue for some much needed self-care.  In case you need a few more ideas, here are some ways you can pamper yourself, not only for this upcoming Valentine’s Day but throughout the whole year.

  • Devote an amount of time for your favorite hobby or activity that you don’t do very often
  • Check out that book, magazine, show or movie you’ve been interested in
  • Take a day off—from a daily routine/schedule or from work but don’t schedule any other commitments, unless they’re fun and for your own benefit; remember, this is ‘me’ time!
  • If you feel the urge to spend a little money, treat yourself to some flowers or a small trinket you’ve had your eye on
  • Make time to listen to music, or take a walk/ride. Sit outside or look out the window and take notice of things that you don’t usually take the time to see
  • Relax! I know this is a foreign concept for many but try to make the conscious effort to rest your body and mind. Let your shoulders relax, pay attention to your breathing and feel your body unwind (this isn’t always easy to do so it may take some practice, be patient with yourself)

What are some ways you pamper yourself?

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Thinking About Blogging?

The MS Conversations blog has been up and running for almost four years and will celebrate its anniversary this summer. Over the last few years the blog has grown and expanded to include many new and exciting guest bloggers from the MS community.

Journaling and writing about your life and experience with MS is a personal choice and is one that is often met with a bit of hesitancy. For some, opening up in a public forum or public space runs the chance of being faced with criticism or judgement; which can be a source of stress. However, journaling or blogging can also hold positive benefits, such as; creating a bond or connection to individuals you may have never had the opportunity to meet in person.

Several options are available to those who are interested in connecting to an online community; whether it is starting your own blog or joining as a contributor to a blog that you enjoy reading, there is an option to have your voice and story heard.

blogpost

Have an interest in guest blogging with MSAA? Contact Samantha at sschech@mymsaa.org to learn more. A writing sample will be required as well as a signed consent and release form. All guest blogger opportunities are un-paid, and volunteer based.

What would you like to see from the MS Conversations blog in the next year? Are there certain topics or themes that would be helpful? Please comment below or reach out to us with any suggestions.

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February 2016 Artist of the Month: Celebrating the Work of Artists Affected by Multiple Sclerosis

MSAA is very proud to present our 2015 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 new submissions.

February Artist of the Month:
Jennifer Atwood – A Wedding Centerpiece of Rose Balls and Orchids

 A Wedding Centerpiece of Rose Balls and Orchids

About the Artist:
“I was officially diagnosed with MS in 2007. Since then I had to retire and collect SSDI. I love watercolor but that was not my best media of my art degree in college. I now do this for my own satisfaction and the least expensive art I can do at home. I am 57, married, and have 4 daughters! All except one have left our nest, the youngest is 21. My husband Edward and I have been married 11 years.”
Read more

Be inspired – please send an online card featuring artwork by MS artist Jennifer Atwood and spread awareness of MS and MSAA.

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Finding Companionship in Some Furry Places

February being the “love” month, we thought it may be appropriate to kick-off the month talking about some of our favorite furry creatures! In the past we have discussed the benefits of pet relationships and the positive effects that these relationships can have on one’s health and wellbeing.

With the uncertainty of a disease such as MS, individuals may feel comforted knowing that an animal has had some level of training or certification to meet a specific need. But what do the different titles mean? And which might be the best for your situation?

A Therapy Animal is not defined by federal law and may (or may not) be loosely defined by state laws. The primary purpose of a therapy animal is to provide affection and comfort to individuals, mostly those that live in communities such as nursing homes, or hospitals and schools. Their owners are registered members of an Animal Therapy program, and bring the animals in to visit with clients.

A Service Animal is one that has been specifically trained to perform tasks for an individual with a disability. Different states have different regulations in terms of licensing or certification requirements for service animals. You can check with the office of the Attorney General in your state to discover how service animals are defined and licensed.

An Emotional Support Animal, or companion animal, is a person’s pet that has been prescribed by a licensed mental health professional. The animal is included as part of the treatment plan and is designed to bring comfort and minimize the negative symptoms of the person’s emotional/psychological challenges.

Emotional Support Animals, specifically dogs should be able to:

  • Walk beside you without straining against the leash
  • Sit on command
  • Come when called
  • Lie down on command
  • Show no aggression toward humans or other animals when unprovoked

For more information, or to register your pet as an Emotional Support Animal, visit the National Service Animal Registry website and complete the brief form and pay the registration fee.

By completing this process and certifying your pet as an Emotional Support Animal, you are protecting yourself in several situations. There are laws that protect individuals with service or emotional support animals, including housing and landlord/tenant laws.

While pets require a certain level of commitment and responsibility, this may not be appropriate for everyone’s situation. That doesn’t mean you can’t benefit from the love of an animal.

There are non-profits throughout the country that provide visiting pet services. PAWS for People™ is a non-profit committed to providing therapeutic visits to individuals within their service community who would benefit from interaction with a well-trained, loving pet. To find programs in your area, search “therapy animal” and your city.

Show your #PetLove and share your favorite #MSAAPets stories about you & your pet with us!

dogs

 

For additional information, please visit the sites below:

NSAR- National Service Animal Registry: https://www.nsarco.com/; 866-737-3930

Paws for People: http://www.pawsforpeople.org/; 302-351-5622

Canines Companion for Independence: www.cci.org;1-800-572-BARK (2275)

Paws with a Cause: www.pawswithacause.org; 800-253-7297

Pet Partners: www.petpartners.org; 425-679-5500

Service Dogs for America: www.servicedogsforamerica.org; 701-685-2242

Service Dogs for Independence: www.servicedogsforindependence.com; 520-909-0531

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