Living with MS

Father’s Day is Sunday, June 18, in the U.S. There are a lot of good fathers out there, but one I wanted to tell you about is my friend Jason Clark. He is a caring husband to his wife, Jenny, and an amazing father to his four children.

In case you missed them, here are some news stories that appeared in MS News Today that caught my eye over the past week. Ocrevus Phase 3 Trial Will Explore How Treatment Works by Viewing Changes in Spinal Fluid This new clinical study will try to…

The National Multiple Sclerosis Society and a dozen other advocacy groups have banded together to support the Air Carrier Access Amendments Act of 2017, a bill seeking to strengthen the rights of airline passengers and close service gaps often faced by patients with disabilities, including those with multiple sclerosis (MS).

One of the most dispiriting aspects of a chronic illness is that it traps you in your own world. Major events happen but these are filtered against the achievement of actually being able to get yourself to the bathroom. At the time of writing, we in the U.K.

Have you ever hit a brick wall trying to self-inject? I have. It was with Avonex, the first DMD that I used. To make a long story short, after a couple of years of poking myself in the thigh muscle, I just couldn’t do it anymore. That’s…

The British fundraising group The October Club and The MS Trust, a U.K. multiple sclerosis research and support organization, have announced an ambitious plan to potentially help thousands of advanced MS patients in need of services. Composed of people working in the financial equity industry in London, The October Club raises money for a different charity each year through…

(Editor’s note: Tamara Sellman continues her occasional series on the MS alphabet with this first of two parts on terms starting with the letter “E.”) When it comes to multiple sclerosis, mastering an understanding of the disease means you need to mind your Ps and…

Virtual reality (VR) technology is most commonly associated with gaming and entertainment, but it’s expanding into a variety of clinical and healthcare applications. The Ontario-based biopharmaceutical firm EMD Serono, Canada, is now using VR as an informational and educational tool to provide a more profound understanding of what living with multiple sclerosis…

The MS Minority Research Engagement Partnership Network is calling for all multiple sclerosis (MS) patients, ages 21 and older, to respond to a 15-minute online survey. Investigators are hoping to better understand how people with MS from different ethnic backgrounds and races view medical research, so as to engage them in…

Catheterization was one of my biggest fears when first officially diagnosed with MS in 1994. As the years went by I thought I might be one of the few patients who do not experience malfunction in the urinary system. Then, in 2012, something changed. I went from having to…

Support is a crucial component in fighting chronic illness and adversity. Our humanity connects us and we thrive on relationships. Support may come in the form of family, friends, social services, groups and countless other methods. I have been fortunate to have an abundance of support for which…

How multiple sclerosis affects the “social brain,” which governs the ability to understand how others think and feel — a skill called social cognition — is linked to specific types of brain damage that occur in MS: both lesions and microscopic changes taking place in the brain’s white matter, a research team…

I am making the transition from multiple sclerosis patient to cancer caregiver. On May 11 my family’s world turned upside down when my husband of 41 years was diagnosed with advanced  pancreatic cancer. My caring husband, who has always loved and protected me, is now the one in…

Multiple sclerosis has a way of messing with one’s head. Whether it’s emotional or psychiatric disorders, fatigue, brain fog, or physical problems, there’s a lot to wrestle with. And to effectively battle this disease requires you to be in a certain state of mind. Let me give…

Read John Connor’s previous column, “Lemtrada I: This Island Couch.” Apologies for the pic of my edema–riddled right foot. If I put whiskers on it, my big toe could do a damn fine impersonation of a seal. On the bright side, a month ago it was twice this…

(Photo by Andreea Antonovici) A few months ago, I wrote about a bicycle that mimics the symptoms of multiple sclerosis. Now, I’ve discovered that there’s an “MS House” that allows a healthy person to experience some of what life is like for someone who lives with MS.

I couldn’t help but smile when I saw “MS Comprehensive Care: A Team Sport“ listed as the title of the John F. Kurtzke Memorial Lecture at the opening of the Consortium of MS Centers 2017 Annual Meeting. Kurtzke, according to the program, was a strong advocate of the…

To honor World MS Day, May 31, EMD Serono launched a multiple sclerosis care partner survey in collaboration with the International Alliance of Carer Organizations (IACO). The new survey comes after the initial results from a Merck study showed that the highest number of MS care partners are aged 18-34, and that…

(Editor’s note: Tamara Sellman continues her occasional series on the MS alphabet with this second of two parts on terms starting with the letter “D.”) When it comes to multiple sclerosis, mastering an understanding of the disease means you need to mind your Ps and…

Erythromelalgia is a rare and painful multiple sclerosis (MS) symptom that I (and others with MS) experience. Almost every night my feet have a tight, swollen feeling accompanied by a terribly hot, burning sensation. It is usually cool to the touch but can feel hot at certain…

A few weeks ago, I wrote about some of the invisible costs of living with MS. Writing that column really got my mind thinking about all the ways that my MS costs me money. In fact, I couldn’t stop thinking about it! In the days that followed, I…

Like so many people with MS, Mariska Breland remembers the disease’s onset as a combination of strange, seemingly disparate maladies that included tingling in her left thigh, numb feet, skin that felt “too thick” around her toes, foot drop, and double vision. One left her…

Today is World MS Day, and people around the world are sharing tips for living with multiple sclerosis (MS) by using the hashtag #LifewithMS on social media. The MS International Federation started World MS Day in 2009. Events and campaigns take place throughout May to encourage the global MS community to…

The casual remark, “You seem perfectly fine to me!” bothers me (and others) because eligibility for Social Security Disability benefits requires proving we are not fine. In fact, we must prove that we are disabled, which is no small burden when we “seem perfectly fine.” ‘Looking’ disabled An acquaintance of mine…

Someone asked me to fully explain the title of my column, “Patiently Awakened.” My column title provides a brief description of what it means to me and my intentions for readers. I thought it would be best to elaborate in the column itself. Patient as a noun refers…

Relapse after First Lemtrada Course No Indication of Poor Long-Term Outcome, Study Finds Some MS patients being treated with Lemtrada report new exacerbation after they complete round one of the drug, and they wonder if this means the drug isn’t working.

Grief is something that we have all experienced. The process is a natural human response to tragedy and loss. It is often cyclical and traumatic. I have read and written various articles referencing the grief process. Discussions with my niece and my dear friend led me to write…

Patients must help develop new outcome measures of multiple sclerosis (MS), since they and healthcare providers may have differing perceptions of how crucial various measures are, a new study argues. Researchers from the Multiple Sclerosis Center of Atlanta shared this insight today at the Consortium of Multiple Sclerosis Centers (CMSC) 2017 Annual…

The latest drug media storm to erupt in Britain is “Spice,” which causes users to become living statues. Exactly a year ago, I became a living statue for six weeks, and not one reporter hassled me. That would have broken the monotony! We all have our own version…

The use of multiple sclerosis (MS) mobile apps by patients and their clinicians encourages shared decision-making and helps patients improve their outcomes, finds a study presented at the 2017 Annual Meeting of the Consortium of Multiple Sclerosis Centers (CMSC), taking place May 24-27 in New Orleans. The study, “Shared Decision Making: Connecting…