Living with MS

For many years I have been fighting the battle of the bulge while trying to decipher and combat many food intolerances. Every year I seem to come up short in the battle with losing weight, but I continue to try to shed the pounds. There are many challenges…

Here’s my Pick of the Week’s News as published in Multiple Sclerosis News Today. People with Chronic Diseases Support Obamacare More Than General Public, Survey Finds As everyone must know, throughout the world, politics in the U.S. has become extremely volatile and one of the focuses is…

A new online resource, LiveWiseMS.org, aims to raise awareness about multiple sclerosis (MS) and provide patients and caregivers information about the disease’s symptoms and conditions. The platform, developed by the International Organization of Multiple Sclerosis Nurses (IOMSN), hopes to promote healthy living and improve quality of life for MS patients and their families.

Browsing through some multiple sclerosis Facebook groups the other day I was reminded of the line from the 1967 movie Cool Hand Luke: “What we have here is a failure to communicate.” These posts jumped out at me: So when my neuro says he wants me to…

People with multiple sclerosis (MS) and other chronic diseases value the Affordable Care Act (ACA, also known as Obamacare) more than the general public, concludes a poll conducted by PatientsLikeMe. These patients are also less inclined to repeal Obamacare, and they are more likely to believe Obamacare needs few changes to…

Regular massage therapy given people with multiple sclerosis (MS) significantly reduced their pain and fatigue, and helped to ease spasticity, a small pilot study reports. The results further support previous findings as to the benefits of massage in treating MS symptoms and improving patients’ quality of life. The study, “Impact of Massage Therapy on Fatigue,…

Stress is like a light that turns on when you need it. But when you can’t turn it off, you run the risk of burnout, which can impact your health, according to the U.S. National MS Society. I often have said that I…

MS Alphabet When it comes to multiple sclerosis, mastering your own understanding of the disease means you need to mind your P’s and Q’s, dot your i’s, cross your t’s, and recite your ABCs. There is so much to know about this complex disease, but the more you know as…

Americans are feeling more anxious than ever. It’s not politics as usual, but politics as unusual. People who never were politically active find themselves raising their voices to make a difference. In the MS community, raising our voices is not something new.

The three words are powerful. My mother speaks them into my spirit frequently. She tells me to “Just hold on.” My mother is a woman who has withstood many tragedies. Both my parents have. They’ve lost their children, cared for me as an ill child and they continue to…

Back in September I told you about Cheryl Hile. Cheryl is a young woman with MS whose goal is to become the first person with MS to run in seven marathons on seven continents. In September she had just completed her first marathon, in Cape Town,…

Ninety-five percent of multiple sclerosis (MS) patients believe medical marijuana should be a treatment option, according to a GeneFo online survey. The survey also showed that almost 73 percent had tried it, even though about half said they hadn’t received information from a doctor about its benefits and risks. A National…

Perhaps the most famous MS advocate today isn’t a patient, but the daughter of one. Author J.K. Rowling lost her mother to multiple sclerosis in 1990, something she describes as “an enormous shock.” In order to help fight and defeat this disease, she donated £10m to found…

You may not have heard this song, but I bet its lyrics will strike a chord. I cannot feel my body. I cannot feel my face. My legs are pins and needles and my mind is a disgrace. I see in double…

Considerable differences exist in how multiple sclerosis patients, healthcare providers and insurance companies assess the value of current MS treatments, according to a literature review study by the data analysis firm Real Endpoints. For the study, a team of clinicians and researchers looked at more than 300 research articles, covering topics like…

Multiple sclerosis (MS) patients who received transcranial direct current stimulation (tDCS) while playing brain-training video games improved their learning and understanding skills to a greater extent than those who only brain-trained. Researchers at NYU Langone’s Multiple Sclerosis Comprehensive Care Center underscored that while more research is needed to explore the procedure’s…

January 2017 has proven to be a bit of a cluster, if you know what I mean. Holiday recovery, out-of-town trips for work, budget cuts, extreme weather and, of course, the social and political “chaos climate” all conspired to make me itchy, twitchy and tense! This past Thursday, as…

There are many people with MS who miss out on easy access to care from multiple sclerosis specialists, and they often have few places to turn for trusted information, or to get their questions answered. There is a place where we can get both for free – the …

Recent weeks have been filled with enough political drama to last a lifetime. Wherever I go virtually (and now, even in “real life”), ideological division has been amplified to the extreme. Except … when I go to the multiple sclerosis online forum I co-administrate. Meet the people in my neighborhood The…

MS is an onerous disease. There are times when I feel as if I am in the midst of a tsunami. Everything comes crashing in and all I want is a safe haven, a level of calm. The tsunami consists of depression, physical symptoms and the destruction of peace.

Uh oh! My cat, T.J., is under my feet trying to nibble my ankles as I stumble toward the bathroom in the middle of the night. I know what’s about to happen. As I try not to step on T.J.’S tail, it’s already started. I’m going down. It…

The common cold is upon me as I sit here laboring to breathe, with water-soaked eyes and a rumbling cough. I am under attack, an enemy has infiltrated my multiple sclerosis-weakened immune system. The antagonists have found a warm home and they are fighting to stay. It is…

Here is my Pick of the Week’s News, as published by Multiple Sclerosis News Today. Sense of Smell Impaired in Half of Multiple Sclerosis Patients in Study For very many years I have known that my sense of smell has not been as good as that considered normal…

About two weeks ago I wrote about my roller-coaster ride being pretty smooth since my first round of Lemtrada infusions ended in early December. Well, the loops are now looping. Month two post-infusion began with a good lab report, but also with an appearance of the up-down fatigue monster.

Many multiple sclerosis (MS) patients have a reduced sense of smell, and the more relapses they have, the worse the problem, according to a study suggesting that smell may be a marker for the disease’s progression. Findings also suggested a connection between reduced sense of taste and MS progression. The…

One of my sisters called to let me know that CNN was doing live coverage of the Women’s March that was taking place in all 50 U.S. states, as well as many other countries. While we talked, one of the speakers came on and observed that the issues facing…

This is second in a 2-part series. You can find Part 1 here.  Being proactive about your MS means staying up-to-date on current theories, treatments, products, and strategies. It’s safe to say that most people will turn to the internet at least a few times to look up…

There’s a new kid in town by the name of LiveWiseMS. Partnering with the International Organization of MS Nurses (IOMSN), LiveWiseMS has already become a trusted resource for patients and care partners looking for answers about MS. The website’s mission is…

Oral multiple sclerosis meds appear, more and more, to be the first choice of patients who are just beginning to receive an MS treatment. A recent report by the independent marketing research firm Spherix Global Insights shows that oral disease-modifying therapies captured a significantly higher…

Have you ever had someone tell you “it could be worse?” They are making a valiant effort to comfort and console you. However, there is not much consolation in the words. They almost sound a bit insensitive. I have been told this several times. I think many people…