Doing What Makes YOU Feel Good When You Have MS

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Multiple sclerosis in itself is a complicated and often unpredictable disease. We here at MSAA hear on a daily basis about some of the trials and tribulations that our clients with MS face. One of the most valuable lessons that I have learned in trying to understand the whirlwind of information provided about MS is to find something that is meaningful to you and to your unique situation. With all of the information available, finding something that will make YOU feel good is a priority.

Through social media, websites, and support groups, information is provided about a number of hints, tips, or things that one person may have done to alleviate their symptom, which is wonderful, but unfortunately may not work for everyone. Not every individual with MS will experience the same symptoms and even for those who may, those symptoms may appear incredibly differently.

The point behind the story and the reason for the title is that everyone has their own needs, and each person understands and knows their body better than anyone else. These experiences and feelings are unique to you and should be treated independently to others’ beliefs and thoughts. Focusing and developing ways that make YOU feel good may help to improve your overall day to day.

Explore yourself; perhaps through journaling you can identify some needs that could be met in order to make you feel good. Guided meditation is another way to explore your inner thoughts and feelings. Sitting in a quiet space with yourself and learning about your body and the way that it feels at any point throughout the day can help to center you and focus on what your body needs.

What can you do for yourself today that will make YOU feel good?

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Latest Issue of The Motivator Now Available for the MS Community

savas2The Motivator is MSAA’s award-winning magazine provided to the MS community and to our generous supporters. Distributed twice per year, this publication addresses the physical, emotional, and social issues that arise with MS, and provides information and support to many individuals affected by this disorder.

We’re pleased to announce that the Winter/Spring 2014 issue of The Motivator is now available to read!

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Cover Story:
The Emotional and Psychological Symptoms of MS
… The symptoms of depression, anxiety, and pseudobulbar affect (PBA) are described, along with effective treatment strategies. Important information is also given on how these symptoms affect roles and relationships, sexual function, and self-image.
Read the full story

Feature Story:
…Competitive “biosimilar” drugs may soon be considered for approval. Read about how these “highly similar” drugs may affect procedure, treatment, and cost.
Read the full story

AquaticCenter-Screen

Program Notes:
…Details on MSAA’s new Swim for MS online Aquatic Center are highlighted. This national program initiative supports the awareness, understanding, and availability of swimming and aquatic exercise as a positive wellness opportunity for the MS community.
Read the full story

Read the latest issue of The Motivator

 

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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.

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How do you treat your MS?

Multiple sclerosis symptoms can vary greatly between different individuals, as can the progression of the disease.  Therefore it’s no surprise that treatment strategies also vary from person to person. Since there is no known cure or “easy fix” for MS, the primary goal of treatment is to manage the disease while maintaining quality of life. There are currently a number of treatment strategies to help alter the disease course, manage symptoms, manage relapses, and support your overall physical and mental health.

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In the MS in America study, 95.5% of respondents indicated that they had tried prescription medications while 85.3% were currently using prescription treatments. Although prescription and over-the-counter medications were the most frequently used treatments, a variety of Complementary and Alternative therapies were also utilized.

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Nearly 80% of survey participants had tried Vitamin D and 62% tried exercise. Almost half of respondents tried changes in diet to help manage their MS and just over 10% of survey participants indicated that they were currently using rehabilitation therapies including physical therapy, occupational therapy, speech/swallowing therapy, cognitive rehabilitation, and vocational therapy.

Of these respondents, 57% were satisfied with their current treatment plan and 12.8% were dissatisfied with their current regimen (30% were neutral; n=2,854).

What treatment and management strategies have you tried for your MS? What’s worked and what hasn’t? 

The MS in America Study was conducted over the Internet from November 2012 until January 2013. The primary goal of the study was to establish an understanding of the current state and trends of patients affected by multiple sclerosis. The survey included over 100 questions on a broad range of topics. A total of 3,437 people started the survey while 2,562 people completed the survey resulting in a high completion rate of 74.5%. To qualify for the survey, participants had to be MS patients over 18 years old and a US resident or US citizen living abroad.

The study was solely developed and funded by Health Union, LLC which does not manufacture, sell nor market any product to diagnose, prevent or treat MS or any other disease.

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Getting a Second Opinion When You’ve Been Diagnosed with Multiple Sclerosis

So when I was diagnosed with MS, a general Neurologist diagnosed me. Everything was so hectic at the time; I was just trying to understand what was going on … and why I needed to get IV Steroids…

I had never heard of MS, so I was trying to find out everything I could about it. Once the initial shock wore off, I had multiple people ask me if I had received a second opinion. At the time, I was getting aggravated, wondering why everyone was in denial, when I was just trying to cope w/ the changes going on in my life.

I finally decided to get a second opinion, not only from a different neurology office, but also from an MS Specialist.

I can honestly say, that was the best decision I had ever made. Come to find out my general Neurologist was intelligent, yes, but didn’t know as much as my MS Specialist did, and it turns out I was being over medicated on things…

I honestly don’t think I would be where I am right now in living with MS, if I hadn’t gotten that second opinion, which others were suggesting I do. I later learned that a lot of people get a second opinion, or want to see a Specialist in the MS field to ensure they are receiving the best care possible.

I know some people who have had more than 2 or 3 opinions on their diagnosis, and I’m glad I only had to make one change in neurologists, rather than keep on searching.

It’s very odd to think back and see the difference in the opinions of my previous and current neurologist. While they are both very well educated, they just treat their patients differently than one another. Which, in this case, was a VERY good thing. (Did I mention that my diagnosing neurologist stuck me SEVEN times, yes that’s right SEVEN times, to get my spinal fluid for a lumbar puncture aka spinal tap.)

I think all patients should exercise their patient rights… if you aren’t comfortable with your current neurologist (or any physician for that matter) you have a choice to find someone you are comfortable with. It’s a VERY important matter, considering your health is in their hands, so to speak.

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