Spring Fling

Ahh, the time of year that brings colorful flowers into bloom and comfortable temps is finally here! April showers that bring May flowers help mark the arrival of spring type weather and a time for people to get outside and enjoy this time of year. It’s not too warm yet in most of the country, which allows for outdoor events to be enjoyed, not denied because of the heat. So what are some things people can get out and enjoy doing during this spring time?

Doing outdoor chores like gardening or yard work can be relaxing at times while you go at your own pace, or just sitting outside during this season can be refreshing, breathing in air that the winter months made most people hibernate against. Attending ball games, community events and outings, exercising or taking a ride can all be welcomed activities to appreciate this month. Spring doesn’t seem to last too long in relation to the sizzling summer and frigid winter months, so consider this period a ‘fling’ to do what you like, no matter what the activity is.

You can get together with people you enjoy spending time with and make up your own activities or events this season. Try something new – like a project or artwork you’ve always wanted to create, and have others help you to make it a fun group activity. It’s important to let yourself be present in the moment, especially if you’re engaging in something new, so that you can appreciate the situation for what it’s offering. The seasons come and go, so be sure to make your ‘spring fling’ a memorable one!

What’s your idea of a fun ‘spring fling?’

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Tips for Staying Organized

Organization is a personal character trait; to some it comes naturally, to others it is a struggle. One thing is certain; organization is about finding a system that works for you. There is no need to justify something that works to your benefit, regardless of other opinions of that system.

Consistency is one of the more important factors when discussing organization and managing one’s life. They say it takes 21-days or three weeks to make a habit. This may be true for some, but it is stressful to think about counting down 21 days just to find some level of consistency in a routine.

For those who struggle with being organized, or feel that they need more organization to help with day to day activities, the following suggestions or tips may be helpful:

Sort at the Source:
Stay on top of mail and paperwork as it comes through the door. Sort through the junk mail and place it in the trash or recycle bin. Place bills or other important documents in a space that is meaningful for you, and where you will know where to find them when needed.

Put it Away:
It sounds like something you would tell a child, but this simple step can help those who seem to misplace items. You are more than likely to remember where something should be, but is it in its place when you go to look for it? When you are done with an item, put it back in its place. When items get left out of place, they can easily be lost.

Allow Plenty of Time:
When we are rushed, mistakes can happen or things can get lost. Allow yourself plenty of time to complete a task and complete one task at a time. Time management and organization often go hand in hand.

What tips or suggestions do you have regarding organization? Have you found a process that works for you?

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Greetings from the Midwest Region!

By: Marie LeGrand

Greetings from the Midwest Region! I am the newest member of the team and as the Regional Director have had the pleasure of meeting so many wonderful people and formed great relationships during the last few months.

As a healthcare leader, my journey has taken me to unexpected places and provided me the opportunity to enhance client and patient satisfaction; by creating and implementing services that promote healthy behaviors, and designing plans around health program expansion and extension. Before joining MSAA, I developed disease prevention programs and monitored the effects within community settings. I worked collaboratively with other nonprofit organizations; in increasing HIV awareness and prevention within underserved communities and high-risk groups in the city of Chicago. Through program development, health promotion, partnership building, and research & development, I created culturally sensitive and educational materials on key health issues.

As the Midwest Regional Director, I will work with MSAA in creating awareness and providing education, programs and services to individuals living with MS and their families. I have had the privilege of speaking and listening to the touching stories of individuals, who have started support groups and fundraising events that encourage others to stay positive and involved while finding ways in which to overcome the challenges of MS. Through them, I am empowered and excited every time I am asked about my profession and the work that MSAA does nationwide for the MS community. I am also pleased when my guests come up to me at the end of a program and proclaim how happy they are with the quality of work that we consistently do for them and their families. For many, it is an opportunity to meet new friends and create connections that will last a lifetime. For others, it is a time to laugh and share stories of encouragement and perseverance as well as giving tips on how to live life fabulously with MS!

In the next few months, I plan to reach out to those living in rural communities and small towns working with expert clinicians and health practitioners in the field to answer questions that many have pertaining to their health. Oftentimes, it is a very scary experience to speak with clinical staff or a physician. The programs are an open forum for many to address issues that are left unanswered in a friendly and inviting environment allowing them to discuss pertinent topics that affect daily living. I have a few educational programs that I am excited about, which covers a variety of topics such as, “The African American MS Patient Experience”, “Multiple Sclerosis in Women”, and “Adherence Matters”. I hope through these programs, many will become more knowledgeable about their MS.

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Trying Something New

During the holidays I received a gift certificate to try yoga classes at an exercise studio in my area. I was always interested in trying this type of class and this was my opportunity to finally do so. I have to admit that I was a little nervous going to that first class. With feelings similar to the first day of school I didn’t know what to expect – what the teacher would be like, if I would be doing the exercises “right,” and if I wanted to come back. I don’t think I was alone in these feelings as I’m sure others have similar thoughts when trying something new for the first time, but I was worried about how it would affect my performance. I didn’t want to be the odd man out and have it be completely transparent that I had no idea what I was doing.

To my surprise, on the first day of class I wasn’t the only new student! I was relieved to see that there were several other new students joining the class and trying this yoga for the first time! This gave me comfort knowing that I at least wouldn’t be the only new face in the crowd of others more experienced and that perhaps these other folks shared in my own initial fears about trying something new.

The class turned out to be great – the teacher was encouraging and the exercises were dynamic and fun. It was a challenge on the mind and body in an uplifting and positive way, and something I felt so proud of myself for trying. I have continued attending the class and look forward to it each time I attend.

No matter the task, exercise, venture or opportunity that comes your way, the point is that you’re not alone in the initial fears or concerns or questions that you have about it. At some point everyone encounters something new, so it comes down to the question of if and how you’ll approach it, and if this something new has potential benefits for you. You won’t know until you try it, right?

What new venture will you try?

*Please remember to consult with your physician before starting a new exercise routine

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Managing Cognitive Difficulties

By: Meagan Freeman

When we think of spring, we think of renewal, spring-cleaning, organization and clarity. We think of new growth, birth, refreshment and a new beginning. This can be especially difficult for patients struggling with memory loss and multiple sclerosis. How do we achieve organization when we have a difficult time recalling why we walked into a room?

How many times have you misplaced your keys? Lost your phone? Forgotten someone’s name?

Cognitive difficulties brought on by MS are an incredibly tough thing to accept, especially in the very young. We aren’t supposed to experience memory loss like this in our 40s, 30s and even 20s. When that familiar face says “hello,” on the street one day, you know you recognize this person…but you think: “what was that name again?” Embarrassing to say the least.

Like any MS symptom, these changes are caused by lesions and brain atrophy over time. Medications used to treat MS symptoms may also be responsible for causing cognitive issues. Pain medications, anxiety medications, and muscle relaxants may cause patients to become sleepy, fatigued, and even confused. We should all be cautious when using these types of medications, especially when driving or doing other dangerous activities.

What can be done about these issues?

Occupational therapists, speech and language pathologists, and neuropsychiatrists can perform a specific battery of tests to determine the severity of the cognitive impairments. Then, computer-assisted tools such as memory aids, and other forms of cognitive rehab can be used to improve memory and learning. The other key point is that lesion load, or the number of lesions seen on MRI, can correlate with cognitive problems. Therefore, it is natural to assume that staying on a disease-modifying drug is important in keeping the lesion load low.

In my own life, I have experienced a great deal of cognitive decline over the last few years, and I am only 40! I began to notice that I was forgetting the reason I entered a room, where I put important things in my home, where I set my keys, and even names. I was horrified when I noticed these changes! Some of these things can be blamed on normal aging, stress (6 kids!), and perhaps lack of sleep/rest. However, I am quite sure that MS has a lot to do with it. All we can do as patients is educate ourselves, educate our families, and be aware. Communication with our providers is important as well, and we need to be sure that we are receiving every available treatment. Don’t ever assume that nothing can be done for you. Training your brain by reading, writing, and continuing to learn are excellent ways to keep the mind working! “Use it, or lose it,” as they say!

Use your spring-cleaning time to organize your life. Keep things in specific places that you will remember clearly. Label things, and use a pill sorter to remind you to take your medications, if needed. Write everything down, and set reminders in your phone. If we prepare for those moments of memory loss, we will find them less worrisome. Happy Spring!

*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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April 2015 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.

April Artist of the Month:
Michelle Hotchkiss – Palmer, AK

 Michelle Hotchkiss - Wilberforce the Rabbit

About the Artist:
“I live on a small farm in a small town in Alaska with my husband who is very supportive and wonderful, a very large dog, and my dog-tolerant cat. I have two wonderful adult children and two of the cutest grandchildren ever born.

After 15 years, MS started to slow me down to where I am no longer able to lead the life I once had. This led me into looking for new hobbies that I could do in spite of the limitations. I tried scrapbooking but it was very expensive and I wasn’t satisfied coloring in stamps, so I decided to try drawing and found out I was pretty good at it. This led me deeper into drawing and painting and exploring different types of art such as mixed media and art journaling. I continue to explore other mediums and art styles and whatever makes me happy.

I am a big believer that hobbies are great for a person’s mental health and provide a sense of satisfaction and pleasure, which help counteract the things that MS has taken away.”
Read more

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

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Preparing for Spring

Welcome April! We here at MSAA are looking forward to April and the wonderful blog posts scheduled. When thinking about spring, it is difficult not to think about spring cleaning. It’s a time to (hopefully) put away some of those winter sweaters and fuzzy socks and breakout the shorts and sandals. This period of transition is also a great time to think about organization and cleaning.

Did you know there are several suggested origins for spring cleaning based on religious and cultural practices? One is traced to the Jewish celebration of Passover. Prior to the celebration, the home is cleaned in order to rid the home of any bread that is leavened with yeast. Another suggested origin states that prior to the Chinese New Year, the Chinese sweep their floors and clean their homes to rid it of bad luck and misfortune that may have accumulated during the previous year.

Spring cleaning origins also date back to prehistory, and represents the time when it was easiest to conduct a good cleaning of living spaces. Extra light allowed people additional time to truly see the messy state of their caves, or huts.

In preparation for this month’s topics, we have linked below several blog posts that have been written highlighting organization and cleaning. This topic will continue throughout the month of April, please feel free to leave a comment under the blog with personal tips or suggestions.

Please note: MSAA offices will be closed Friday, April 3rd.

Enjoy these pieces over the holiday weekend:

Get Organized: Tips for starting your new organized lifestyle.

Spring Cleaning: The concept of spring cleaning can represent anything you want it to.

Keeping Track of your MS: “Tips” on how I keep track of my MS.

Resources:
http://home.howstuffworks.com/home-improvement/household-hints-tips/cleaning-organizing/spring-clean-in-spring2.htm

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Beat the Heat this Summer

Spring has sprung, or so they say; and while the first day of spring brought some cold weather and snow to some parts of the country, others are starting to think about the warm weather months. It is known that individuals with multiple sclerosis (MS) can be affected by the heat. The slightest increase in body temperature can intensify MS symptoms.

For those with this type of heat sensitivity, the spring and summer months can be a challenge. While family and friends start planning outdoor events and activities, individuals with heat sensitivity question what they will do all summer long.

Cooling products are designed to be used during these warmer months. Ice pack style cooling products allow an individual to place specially designed ice packs into a garment that is worn on the body. Through cooling technology, the body is provided with a safe cooling temperature that helps to reduce overheating.

MSAA offers a program for those who are income eligible to provide these ice pack style cooling products and accessories. For more information regarding this program, please visit the MSAA website at http://mymsaa.org/msaa-help/cooling/.

For those who may not be eligible for assistance through the MSAA program, the manufactures of these cooling items provide products and accessories that can be purchased. Visit Polar Products and Steele Body Cooling, and remember to let them know that MSAA referred you. There may be a discount offer available!

rsz_coolfit_kate

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To Know, Or Not To Know?

That is the question, at least today as it pertains to learning about the disease of MS. As we close in on a month dedicated to MS awareness, many individuals still do not know much about this rare disease. One challenge lies in the fact that the information available on MS can be very overwhelming at times, especially as the internet alone exudes multiple portals of literature and resources about the disease. This can sometimes have the opposite effect on education; rather than pulling people in to learn more, it actually sometimes intimidates people to the point where they shy away from learning more about it. This is completely understandable – MS can be difficult to understand and grasp, so it’s a process to educate oneself and others about it. So the question is, is it better to know, or not to know?

When MS touches the life of someone you know, love, interact with, or share a history with, it can be hard to comprehend what this disease is that’s affecting that person. If you didn’t have knowledge of what it was before, this may be a whole new learning process for you as well. Being part of someone’s support network keeps you tied into what’s going on in their daily experiences, so knowing what MS is and its process can help keep you informed of what they’re going through, and how you may be able to offer support when needed.

It’s not something that can be learned or taught overnight. It’s a process – and one that doesn’t have to be done alone. Talking about MS with family members, friends, peers and other support resources can aid in the significant education piece that comes with the disease. Learning more about it is the first step in knowing what it is and how you can offer your support. It can start with just an overview of MS information, and lead into further discussions and outreach. It’s also important to know that it’s ok to take your time learning about MS – review the information as you’re comfortable doing so at your own pace, and when you have questions reach out and ask. In the matter of MS, the act of knowing can be more beneficial than not.

Share something new you’ve learned about MS…

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Community Thoughts on Missing the Way Things Were

For people living with multiple sclerosis, it’s easy to dream of the life we had prior to being afflicted with this condition. So much of our everyday lives is shaped by MS, we often find ourselves missing the way things were. One of the amazing contributors at MultipleSclerosis.net, Marc Stecker (also known as the Wheelchair Kamikaze), wrote a poignant piece on missing his former self, called “I Miss Me”. We shared his article on our Facebook page and received a tremendous amount of feedback from our community about what it’s like to miss the “old you”. Here is what some of our community members had to say:

I’ve said the same thing to others!

  • Funny, I said that to my neurologist shortly after I was diagnosed last year.
  • I just said something similar to my sweetie the other day…that I would like to have my life back. I feel as though it’s been taken from me.

I thought I was the only one!

  • And I just thought it was me.
  • I really miss me!!!!!! I didn’t know there were others who felt this!
  • I despise that I “miss me” BUT am relieved that I’m not the only one “Missing”.
  • I always have moments of missing the old me. Glad it’s not only me thinking this way.
  • I say this so much, but when I try to put things on my page or try and explain how hurts, even my family ignores it. I was glad to see this and know I’m not alone. I say to myself every day I miss me.

I Miss Me too!

  • I miss me a lot!!
  • What a well-written blog which perfectly describes the life so many of us live. Or should I say have lived. I am amongst the very elderly whose future time on this earth will be very short. You too, will adjust constantly to your new normal.
  • I mourn and miss the old me. I can’t believe who I’ve become; however it’s a new challenge and who knows what I can be and what new experiences lie ahead that I would never have had. Stay positive guys.
  • I shared with a friend recently, “I miss me, who I used to be.” Her reply… “No, now that person is still down in there somewhere.” I’m exasperated. People really don’t know!!!
  • I just want the old me back!
  • Wow! This is the first time a tag line has smacked me in the face! Even though I’ve been very lucky, as I pondered this “I Miss Me,” I suddenly felt very sad. I do miss me. Even though I haven’t been “obviously” affected by MS, there are so many hidden things, the fatigue, weakness, ability to think quickly, balance, and stamina, that yes, I am not the “me” I once was. I do miss ME. Thank you for a great article.
  • What I miss about the old me is being able to do ANYTHING I wanted to do, when I wanted to do it!! Now, I have to accept the help of others, where I was the one always volunteering my abilities to those in need.
  • ‪I do miss most of the old me!!!! But I have welcomed most of the new me, with very few regrets.
  • I was missing for 15 years. I felt myself slowly slipping away, more and more the last 5 years though. It’s awful.
  • I understand just how you feel. I miss dancing a lot! Stay strong
.
  • I miss myself so much! I just want to be able to be normal again and go to a ball game and climb up the bleachers and just walk around the yard without tripping in a hole and fix a meal or brownies without getting exhausted!
  • I miss me! I miss being able to bounce out of bed, being able to run, to dance to skip/hop/jump whatever! . I miss the reality of being able to chase my dreams. I miss me.
  • I have to believe that everyone misses the earlier version of himself or herself as they age, too.
  • Thank you for sharing. I say this a lot. I miss what I used to be able to do and can’t. I don’t even know who “me” is anymore. My identity was through my work and my child and all the things I could do for others and now I often wonder, “who am I?”
  • I am beginning to hate the new me!!!
  • I get so depressed if I start to think about original me.
  • I miss me like crazy!!!!! I say that to myself EVERYDAY
.
  • I want to run, even though I was not a runner!
  • I read his blog, it’s so insightful. My every move is fraught with thought. I miss the “me” that was.
  • Great article! It’s depressing to think about what MS stole from me but I know there are others who have it worse than I do and I try to stay positive. Keep writing it helps to know I am not alone.
  • I want me back, but I don’t see that happening.
  • Just learning to accept there is a new me but so hard to let go of the old me.
  • Things that seemed so simple are now a struggle. Thanks MS–NOT!
  • I miss being me. Feeling like I can do anything. I miss having a job, and making money.
  • Wow, this is so powerful! I miss me and have been missing me for 16 years now! I don’t know how many times I say I want my OLD life back!

What about you? Do you miss a previous version of yourself? Please share with us in the comments!

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