living with MS

Here’s my Pick of this Week’s News, as published by Multiple Sclerosis News Today. This week is a rather special one because it spotlights the work done by our news team in following and reporting the major events at ECTRIMS 2016. Here, I set out my choice of what I…

Life can be really strange and not always fathomable to someone like me who is not blessed with neither medical nor scientific qualifications. On a purely technical basis, I am just an ordinary guy. What I do know about diseases, illnesses and conditions – call them what you will –…

In MS patient columnist Teresa Wright-Johnson’s debut column on Multiple Sclerosis News Today, she introduces herself and discusses the pain and uncertainty of her diagnosis. She also shares how spirituality and reflection are leading her to overcome the diagnosis and move forward. Hello everyone! Thank you for allowing me the opportunity to share…

I hate to admit it, but I’m getting kind of old. That’s not to say that 68 is really old, but I’m probably older than a lot of you who are reading this. I’m also 36 years old in “MS years.” I was diagnosed the month that Ronald Reagan…

Continuing to live in your own home when you can no longer look after yourself is an ideal many people seek to aspire to – but it’s not easy. Outside help is often needed. Alex Camarillo is one perfect example of this. He is 35 years old, has severe…

Accelerated Cure Project is still recruiting for its iConquerMS project, REAL MS, an already 3,000-strong patient-powered research network for people with multiple sclerosis (MS). REAL MS (Research Engagement About Life with Multiple Sclerosis) is a longitudinal research study, designed partly by MS patients themselves, intending to answer critical questions about individual experiences of living with MS from among a large and heterogeneous group…

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…

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…

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…

Interventions that aim to improve multiple sclerosis (MS) patients’ participation in physical activities need to take into account psychosocial constructs, such as their belief in their abilities and their expectations as to outcomes, in order to succeed. The finding, presented at the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS)…

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…

Montel Williams, a Naval Academy graduate diagnosed with multiple sclerosis (MS) in 1999 , recently announced the launch of a line of high-quality medical cannabis products under the brand name LenitivLabs by Lenitiv Scientific. The former television host and wellness advocate has been particularly vocal when it comes to support the use of medical…

In a recent talk, titled “Income and cognitive impairment among multiple sclerosis patients,” scientists investigated how cognitive impairment impacts the life of patients with multiple sclerosis (MS), and reported significant differences in income that correlated with levels of MS-cognitive deficit. These findings were recently presented at the 32nd Congress of the European Committee for…

In a session titled “Challenges for care and research in MS outside Europe and North America” at the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS) 2016 Congress Sept. 14-17 in London, researchers from Latin America shared the obstacles of scientists and multiple sclerosis (MS) patients in the…

Multiple sclerosis (MS) care and research is lagging behind in the Middle East compared to countries in Europe and North America, according to research presented at the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS) 2016 Congress taking place in London through Sept. 17. Two presentations in a session titled “…

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…

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…

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 32nd annual congress of the European Committee for Treatment and Research in Multiple Sclerosis, widely referred to as ECTRIMS, will kick off on Wednesday, Sept. 14, in London. The four-day event is partnering this year with the Annual Conference of Rehabilitation in MS  (RIMS), the European network for best…

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…