An Adventure of a Lifetime

Pete snowmobile 2

Breathtaking, serene, and majestic are just some of the many words which come to mind when describing my incredible three-day journey into the wilds of Wyoming and Montana during the 2014 Wyoming/Yellowstone Charity Snowmobile Ride. Sponsored by the Cody Optimist Club and supported by Teva Pharmaceuticals, this year’s 16th annual ride was a huge success raising nearly $50,000 to help support MSAA’s programs and services.
Pete bison

I was honored to represent MSAA and attend this year’s event, which occurred over Super Bowl weekend. It was, without a doubt, one of the most remarkable experiences of my life. As a first-time snowmobile rider and flat-lander from New Jersey, I had to quickly adjust to altitudes of more than 8,000 feet, learn to operate a 550 cc “sled,” and maneuver through some pretty challenging mountainous terrain.

In taking on this new adventure I did my best to maintain pace with the pack, but admittedly went slow and cautious through the hairpin curves. This strategy helped keep me alive (a Pete snowmobilemajor concern of my wife) but also generated some good natured ribbing from the seasoned veterans and a few crazy rookies! I also managed to get my sled stuck in a snowbank. As a result, I earned the coveted “bone” award, which I accepted with considerable pride.

With each day’s passage I was not only struck by the remarkable beauty of the surrounding landscape, but also by the heart-warming beauty of everyone connected to this ride. Led by ride organizer Ed Livingston, the Cody Optimist Club, representatives from Teva and the entire team of dedicated riders all come together once a year to relive fond memories, create new adventures and, most importantly, help improve the lives of people with MS and their families. On behalf of myself and MSAA, I want to express my sincere appreciation and deepest gratitude to everyone associated with the Wyoming/Yellowstone Charity Snowmobile Ride for providing 16 years of unbelievable support and dedication to the MS cause and for giving this Jersey boy the adventure of a lifetime!

MSAA’s Vice President of Programs and Services Peter Damiri has been with the organization for almost 25 years and worked as the director of public relations before moving to MSAA’s programs and services department. He oversees MSAA’s existing programs and services, as well as any new program initiatives. He is also involved with many other aspects of patient education, including coordinating and managing the production of MSAA’s online educational videos and webinars. Mr. Damiri has a bachelor’s degree in communications.

Share

Welcoming Spring with New Activities for the MS Community

March 20th marks the first day of spring, and for many, you can start to see and feel the
signs that summer is approaching. The days become longer, the air becomes warmer, and the plants begin to grow again. I personally am looking forward to the evenings on the porch after work. – sitting with my feet up, just watching as the neighbors stroll by. The neighborhood becomes active again, with people stopping to say ‘hello’ instead of running inside to beat the cold. Wildlife starts to show their furry faces, popping by the porch to grab some treats.

Over this harsh New Jersey winter, I began to create a list of things that I wished to accomplish once the weather became milder. I welcomed 2014 as the year to try something new, and have pushed off many of these new things until now. Cabin fever has gotten a hold of me and I can’t wait to get out! I plan to become more active, but not in a physical sense. I want to spend more quality time with people and enjoy just being present in the moment. Taking the time to fully invest myself in a task with a friend, without thinking about the thousands of other things I need to do, or rushing off to the next event.Spring email sign-up_edit

With the nice weather, you may also wish to be more active, perhaps joining an MS group,
or attending an educational MS event in your area. MSAA provides free local MS events throughout the country where you can learn about a certain topic, often presented by an MS specialist. The Calendar of Events on our webpage provides information on the type and location of these events. Events are continually being added every day. If you register with MSAA, you can receive information via e-mail or regular mail when an event is coming to your area. Registration is available on our webpage, or, you can reach out to our helpline at 1-800-532-7667 ext. 154 and a helpline consultant will be happy to take your information.

So what do you look forward to most in the spring? Do you have any plans or things you would like to try?

Share

Multiple Sclerosis Awareness (when you might not want people to be aware)…

Diagnosis Awareness Blog Post Image

March is MS Awareness Month. As an advocacy group, you will hear MSAA discuss our available resources, and encourage you to get out and be active about raising awareness for MS and supporting programs which benefit individuals with MS. We will promote and support expanding knowledge and information about MS. With all of that going on, it might feel like you need to wave a flag shouting, “HERE I AM. I HAVE MS!!!”

As the Manager of Client Services at MSAA, I wanted to acknowledge that there are times when you (or your friend or family member) may not want others to know about a diagnosis. While you may want to be an advocate to spread awareness and information to help people understand about MS, you may not want certain people (i.e. an employer, a new boyfriend, or a casual acquaintance) to know you or a loved one has MS.

There is nothing secretive about a diagnosis, but it is your (or your loved one’s) own personal health information. While some people might share that they had a heart attack or stroke with anyone they meet, others might feel medical information is no one else’s business and only talk about it with a doctor or close family member.

So, if you want to be an advocate but not shout a diagnosis from the rooftops, what can you do?

Infographic for blog

On social media sites:

Think before you post. Are you comfortable with everyone seeing your update or picture? If not, make sure to check your privacy settings before sharing personal (health-related) information so that only people you want to learn about your private information, such as close family or friends, can see your updates and pictures.

In person:

If you want to talk about MS in the community, know that not everyone who spreads information and encourages activity for a cause will be personally affected by it. If you don’t feel comfortable sharing your diagnosis, make it general: “ I’m helping out with a cause… Can you help too?” or: “There is a charity I support, and I wanted you to know about them and what they do” are generic ways to introduce information about “your cause,” even if you don’t want anyone to know it is personal.

In many of these situations, there may be a future point in time where you might want to share a diagnosis. On the job, you may decide to ask for a reasonable accommodation and share a diagnosis when needed. When your boyfriend goes from being casual to serious, you might feel comfortable disclosing. Likewise, if a casual acquaintance becomes a good friend, you may want to share. If not, there is no pressure. You can still be an advocate for MS without disclosing a diagnosis.

MSAA_month_badge2

Share

March is MS Awareness Month

The Multiple Sclerosis Association of America (MSAA) recognizes March as MS Awareness Month. Throughout the month, MSAA is raising awareness and improving lives today!

March MS Awareness Month calendar Graphic

MS Awareness Month is a great opportunity for everyone to learn more about multiple sclerosis and discover all the services and support MSAA offers. 

MSAA offers the following ways to learn and support the MS community:

  • Visit our website, mymsaa.org, which provides easy access to vital information, resources, and tools from your desktop, mobile phone, or tablet.
  • View any of our educational videos and webinars in our MSi Video Library ranging in topic from MS symptom management to understanding Medicare, and much more.
  • Read one of our publications, including MSAA’s award-winning magazine, The Motivator, and the recently published MS Research Update with the latest latest findings in MS treatments and research.
  • Attend one of MSAA’s educational events for people with MS and care partners – check our Calendar of Events to find upcoming programs happening in your area.
  • Check out MSAA’s 2014 Art Showcase, featuring creative and beautiful artwork by individuals with MS.

Help to spread MS awareness by using MSAA’s “March is MS Awareness Month” badge as your social media profile picture (right-click the image below, save it to your computer, then use it on your Facebook, Twitter, Google+, or LinkedIn account profile pictures). 

Also remember to use the hashtag #MSAwareness in your social media posts.

MSAA_month_badge3

We look forward to everyone learning more about MS during MS Awareness Month. And we greatly appreciate your continued support of our vital mission of improving lives today for the entire MS community.

Share

Self-Advocacy for People with Multiple Sclerosis

Different thoughts may come to mind when you hear the word ‘advocacy.’ Some may not be familiar with the term or others may have a very vivid description of what the word means to them. Advocacy can be defined as active support, pleading or arguing in favor of something or for some type of cause. Individuals advocate for themselves in different ways, sometimes without the knowledge that they’re engaging in self-advocacy. When you visit your doctor and ask questions, this is a form of self-advocacy. You are supporting your healthcare by requesting more information to make the best informed decisions you can regarding your care. Some individuals have others assist them with this task at times; family members, friends and caregivers have been known to advocate for care when involved in the healthcare process. Sometimes it’s helpful to have another voice or set of ears advocating for your health needs when interacting with your medical team, and there can be different forms of this advocacy presented.

Here are some ways the MSAA can help you remain an advocate in your healthcare:

  • My MS Manager™:  a mobile-phone application to track disease activity, store         medical information, generate reports, and assist individuals with their treatment      plan
  • MSAA’s S.E.A.R.C.H.™ Program:  tools to help individuals with learning about the approved long-term treatments for MS, along with questions to discuss with the patient’s medical team
  • My MS Resource Locator: an MS-specific, online database offering targeted information and unique support services, including detailed guides

What are some ways you advocate for your care?

Share

Comprehensive MS Research Update Now Available from MSAA

MS Research Update

The 2014 edition of MSAA’s MS Research Update is a comprehensive overview of the latest research findings on the FDA-approved disease-modifying therapies, as well as many e,perimental treatments. This update features ground-breaking studies not only with medications, but also in areas such as stem-cell research, therapies for myelin repair and protection, biomarkers, genetic studies, and more.

In addition to the e,citing research aimed at relapsing forms of MS, a number of studies are also looking into the treatment of progressive forms of MS. To assist individuals interested in learning more, studies involving progressive MS have been highlighted.

Read MSAA’s latest MS Research Update here.

Share

Wait a second, did you get that?

Closeup portrait of cute young business woman

Being able to effectively communicate with others is one of the most basic human needs and functions. Babies and young children cry or throw tantrums when they don’t get what they want or need because they haven’t discovered any better ways to express their concerns or desires. They need to be heard, but they can’t express their concerns directly so they resort to raw emotion and yelling to get their needs met.

As we grow older, we are taught that there is a time and place for everything and that generally when speaking in public (school, work, etc.), you need to do your best to control your emotions and try to calmly verbally address your needs or concerns. For example, in a business meeting while you might feel like rolling your eyes at an inane comment, or may even feel like yelling when your point hasn’t been heard or addressed after asking for the 100th time, responding in either of those ways in a work setting is likely to get you a reprimand at best and unlikely to get you what you really wanted (for example a shorter meeting with highlighted objectives, or a specific problem or concern to be addressed).

These communication issues don’t only happen in the workplace setting as you might have times where you feel like your doctor is just not hearing what you are saying or a relative is being insensitive or un-relatable. When you end up in these frustrating situations, you might have the impulse to cry or yell, and sometimes that might supersede your public decorum, but these also may be good times to evaluate your situation and how you could better try to communicate your need.

So how do you take a step back when you need to make sure something is heard?

You may need to take five minutes before speaking to give yourself time to process a more tactful response. You might pretend you are re-explaining the situation to a totally
Older male doctor with laptop talking to middle-age male patientdifferent person. You may also ask the other person to repeat back to you your concern in their own words, so you can make sure they “got it.”

Feeling misunderstood or like no one is listening can heighten your anxiety, stress, and frustration around a situation. Others can contribute to misunderstandings and miscommunications if they are not being active listeners and receptive participants in the conversation, but try to do your part. Try and emote effective communication. If the other party really is not listening, or you can’t overcome personal barriers, you can try to remediate the situation by going to others with your concerns (in the worst case scenario finding a new doctor or changing jobs…. although I’m told you can’t get a new family).

Can you share your tips for how to communicate better in difficult situations?

Share

The Expression of Love

Sunset holding hands photo

Valentine’s Day is a day where we open our hearts and make every effort to shower people with our love.  But for some, the open expression of love is a challenge.  Each individual chooses to share their love in a different manner; some opt for gifts, while others may write poems to express their love.

It is important to understand the ways in which you like to receive love and it’s important to have an open conversation with your partner regarding the ways in which you like to receive love and the ways in which you show your love.

There is a book by Gary D. Chapman called The Five Love Languages.  In this book, the author believes in the importance of being able to express your love in a way that is meaningful to you and in a way that your partner can understand.

Everyone expresses their emotions differently and has a different need when it comes to love.  This book helps to identify yourself and your emotional need, i.e. Love Language.  For example, my love language is Acts of Service; I choose to express my love through the act of doing something for someone else.  If I were in a relationship with someone who needs Words of Affirmation to feel love, the relationship may be stressed because of the differences.

Understanding and knowing your Love Language provides you with a great opportunity to have an open discussion with your partner about your feelings and needs in your relationship.  Take some time to discuss this with your partner and find ways to identify it in your day to day.  Perhaps true acts of love are being overlooked, simply because they are not in your Love Language.

This Valentine’s Day, how will you choose to express your love?

MSAA does not endorse the purchase of any specific product(s). Rather, any brand names are mentioned solely as an informational resource.

Share

Let’s Get Together: 4 Tips for Maintaining Friendships

Life Balance Diagram Showing Family Career Health And Friends

In a world full of chaotic days filled with busy agendas and routines, it’s difficult to maintain some relationships you hold with others. Promises of “let’s get together” are sometimes broken, not that it’s done purposefully, but at times it’s hard to manage all the expectations in a given day.

Certain tasks are given priority, while others are pushed to the side to wait for another day. This is a realistic expectation in the 21st century; people are just plain busy! So what can rsz_shutterstock_14174770you do to keep the relationship connections going, even if the world is pulling you in all sorts of directions?

Here are some ideas to stay connected:

  • Set aside a specific time during the week that you plan to call or get together with friends/family. Work it into your schedule so that you know it is part of the agenda you plan to keep.
  • If you struggle with remembering plans you’ve made, set a reminder for yourself. Make a note and keep it somewhere it can be easily seen, or set an alarm on your phone for the date.
  • Have the other person contact you! If it’s difficult to remember to reach out, request to have that person reach out to you.
  • If something occurs that interferes with your plans, make an effort to reschedule it as soon as possible; that way, it’s already planned for another time.

How do you stay connected?

Share

The Other Part of Wellness: Emotional Awareness

Throughout the month of January, we have discussed our personal journeys in wellness, but one piece has been missing. Often when we describe wellness, we think of physical activity and healthy eating. But one important piece that hasn’t been discussed is emotional wellness. Emotional wellness is defined as “being attentive to your thoughts, feelings, and behaviors, whether positive or negative” (University of California- Riverside).

In the daily hustle and bustle which is our lives, we forget to think about our feelings and often brush them off or push them away so that we can deal with another task we have been given. The idea behind emotional wellness is to not allow ourselves to push our feelings away.

Becoming aware of your thoughts and feelings can be difficult.  One way to start becoming more aware is to journal. For those who have never kept a journal, starting is the hardest
shutterstock_73933420part. In a previous blog, Dear Diary, I discuss some helpful tips to get started.

Perhaps writing about your feelings is not your thing, maybe talking more openly with a friend or family member would be easier. In everyday conversation, try tuning into your feelings and discussing them more openly. Avoid words like “good,” “fine,” or “OK.” These words are often used when asked how we are feeling, but are not “feeling” words. Some more descriptive feeling words can include “relaxed,” “alone,” or “delighted.” These words provide greater meaning to your emotions and will help you to better understand yourself.

In what ways do you maintain your emotional wellness?

References:

http://wellness.ucr.edu/emotional_wellness.html

 

Share