Columns

My children will be the first to tell you that I struggle with new technology. In fact, I’ve just returned home from dropping off my youngest son at college and realize that I forgot to have him write instructions for the television. Netflix may come in handy now that…

You don’t see people with disabilities very often in television ads.  And when you do, the person with the handicap is usually playing a secondary role or the ad uses the disabled person for an emotional appeal.  It’s not real-life.  It’s not us. So, a tip of my hat to…

If only we were cherub faced children, then perhaps someone would have listened to us in the past few years as we voiced concern and then outrage over the escalating costs of our MS disease modifying therapy (DMT) drugs. I’ve listened to the outcry in recent weeks about the astronomical…

When my doctor first recommended physical therapy for my MS, I must admit I was very hesitant —hesitant because I didn’t feel I could do it, and hesitant because I was afraid I would be embarrassed when I failed. As it turns out, I didn’t have anything to worry about. The…

Here’s my Pick of the Week’s News as published by Multiple Sclerosis News Today. #ECTRIMS2016 was undoubtedly the star of the week ECTRIMS, the European Committee for Treatment and Research in Multiple Sclerosis, dominated the news stories of the week when it held its 32nd congress in London. There…

A very full day of activities is planned for today at MS Life, inside London’s ExCel exhibition and convention center. Altogether, there are 15 presentations on the agenda. Three are in the MS Life theatre, and three more are in each of the following four zones: Managing my MS Symptoms;…

London’s ExCel exhibition and convention center is set for a busy Saturday as ECTRIMS winds down today and MS Life opens just down the hall. Organized by the MS Society, MS Life is billed as the biggest MS family event in Europe. With ECTRIMS drawing to a close, many…

  Friday carries on the ECTRIMS congress’s style of so much going on that it must be difficult for delegates to decide which sessions to attend and which ones they can afford to miss. Of course, not everyone can make the same choice but, having delved into the agenda, here…

A post on another website, asking about whether it was wise for someone with Multiple Sclerosis to receive the shingles vaccine, caught my attention the other day. “Have any of you had the Shingles vaccine? I’m still debating about it. I’m concerned about insulting my immune system…

Another full day, today, at London’s ExCel center and numerous sessions, presentations, and debates to attract the attention of delegates attending ECTRIMS. After sifting through the agenda, here are my picks of Thursday’s highlights: This morning sees the beginning of the congress’s plenary sessions, featuring a lecture about “MS diagnosis and…

When my physiatrist diagnosed my MS “foot drop,” she wrote a prescription for vehicle hand controls. I was both elated and terrified. Could I drive long distances again? Arrive pain-free, able to do a short hike? Could I regain the freedom of knowing I would not have to…

Europe’s annual congress discussing treatment, including Patient Empowerment, and research in multiple sclerosis is now underway in London. The 32nd congress is being held from today until Saturday, when it draws to a close at lunchtime. The agenda is absolutely jammed full of topics being covered in a multitude of sessions…

The importance of getting a representative group of people, also known as subjects, engaged in  clinical trials cannot be understated. There is so much that we need to know when it comes to multiple sclerosis, but the picture cannot be complete unless the cohort of subjects includes people from…

Tripping, falling and bloody knees. Been there. Done that. (Who with MS hasn’t)? But this wasn’t me. This was Cheryl Hile and it was happening to her as she was running a half marathon in Carlsbad, California. Cheryl had been running marathons for half a dozen years when, in…

Early detection is very important for any disease diagnosis. With Multiple Sclerosis, it gives you the opportunity to start a treatment plan early that may help with slowing the progression of the disease. Symptoms of MS vary widely from person to person and can closely mimic other disease symptoms. Lesions don’t always…

Here is my Pick of the Week’s News, as published in Multiple Sclerosis News Today. Breast Cancer Therapy, Tamoxifen, May Promote Myelin Repair in MS Remyelination could be a new role in MS therapy for a drug that has been used to treat breast cancer for some…

Anyone with a chronic medical problem knows how expensive drugs can be, and how a drug that you need can be here today … gone tomorrow on the list of drugs that your health plan will pay for. You also know that cost and insurance coverage aren’t the only…

The show comes to town in the next week with ECTRIMS hosting what it describes as “the world’s largest annual international conference” devoted to basic treatment and clinical research in multiple sclerosis. It is being held in London’s ExCel center from Wednesday to Saturday morning, and will be followed…

When I first heard about MS “foot drop,” I assumed that the manifestation of this symptom would be a sudden and obvious inability to walk properly.  I knew many people with MS who used canes and walked with significant stiffness or a “dragging” limb. I filed “foot drop” away…

Virtually all the talk about availability of HSCT1 as an MS treatment includes the need to travel long distances to other countries, but U.K. residents can receive the treatment in London, avoiding the journey overseas. What’s more, it is provided through the country’s social National Health Service (NHS) so, like…

There was an almost audible gasp in the room as I was making a presentation recently at a multiple sclerosis talk.  What did I say that was so shocking?  I merely said – if you don’t agree with your prescribed course of treatment, it is perfectly OK to speak up…

I love the water.  Good thing, since I live at the beach. Being in a swimming pool is also good therapy for my MS. It strengthens my core and arms and, when I do a little pool walking, my legs feel a bit stronger.  But, I’ve never done any…

Thinking has become my second job. Never have I had to put so much effort into gathering my thoughts or comprehending the world around me as I do with MS. To say MS has changed my life in so many ways is an understatement! Of all of my MS…

Here’s my Pick of the Week’s News, as published in Multiple Sclerosis News Today. Gilenya-like Therapy Shows Benefit in Secondary Progressive MS Patients in Phase 3 Trial Here’s a potentially encouraging development for anyone with SPMS. Patients with secondary progressive multiple sclerosis (SPMS) who were treated with BAF312 (siponimod),…

Many people voiced their concerns to me about anyone with MS moving to live in a sunny climate. That worry is understandable. With a disease that includes heat sensitivity, where even a hot shower can make you worse, how can any MS patient move to live in an area where…

I often watched “The Brady Bunch” as a kid.  In one episode, Peter’s voice changes right before the talent show and he isn’t able to sing his chosen song. His replacement song has been playing on repeat in my head for two months! “When it’s time to change, you’ve got…

News that the U.S. Food and Drug Administration (FDA) is to hold a public hearing next month to consider greater oversight of stem cell clinics operating in the country is as welcome as it is late. I say “late” because, while the regulators have been twiddling their fingers,…

The other day I received a very troubling direct message from someone on another Multiple Sclerosis website: “I was diagnosed with MS in 2004 but, foolishly, dismissed it. Other than bad spacisity [spasticity] and a few little episodes, I was relatively symptom free. That is until…

I knew of no available treatment options for my Primary Progressive MS, so when I heard about the pure High Dose Biotin Protocol I jumped on board! The protocol, created by MedDay in France, revolves around the vitamin Biotin (aka, vitamin B7 or H). It is recommended that the…

  Here’s my Pick of the Week’s News, as published by Multiple Sclerosis News Today. Umbilical Cord Blood-derived Cell Therapy Promotes Remyelination in Mice Now this is different, using umbilical cord stem cells. A cell therapy product derived from human umbilical cord blood cells may be…