May 30, 2017 Columns by Patricia Silva, PhD ‘Disabled? You Seem Perfectly Fine to Me!’ The casual remark, “You seem perfectly fine to me!”Ā bothers me (and others) becauseĀ eligibility forĀ 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…
May 30, 2017 Columns by Teresa Wright-Johnson ‘Patiently Awakened’ Explained: The Story Behind the Column Someone asked me to fully explain the title of my column, “Patiently Awakened.” MyĀ 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…
May 30, 2017 Columns by Ed Tobias MS News That Caught My Eye: A New Study about Lemtrada, An Easy Way to Improve Balance, A New PML Case Reported and Kudos to Us 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.
May 26, 2017 Columns by Teresa Wright-Johnson We Are Not Alone: Supporting Our Loved Ones as They Grieve Our Chronic Illnesses 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…
May 26, 2017 Columns by John Connor Lemtrada I: This Island Couch 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…
May 26, 2017 Columns by Ed Tobias Speak Up to Keep the Cost of MS from Costing You More I’ve just been reminded, as someone with multiple sclerosis, how fortunate I am to have good medical insurance. Unlike most other countries, where medical care is a right, in the U.S. that care is a privilege. Here the quality of care and too often the availability of that…
May 25, 2017 Columns by Tamara Sellman Electric Stimulation as a Drug-Free Option for Managing MS Pain One of the biggest ongoing threads we have in the forum I help admin revolves around the subject of pain. We all know how pain can be disabling, or if not disabling, still influential over our moods, our ability to sleep, our energy levels,…
May 24, 2017 Columns by Cathy Chester Is There a Link Between Gut Bacteria and Multiple Sclerosis? The past year has taken its toll on my digestive system. Iāve experienced alarming amounts of pain, bloating, diarrhea, and more fatigue than I normally experience from MS. All of these issues caused great stress both emotionally and physically, so it was no surprise when my…
May 23, 2017 Columns by Ed Tobias Would You Share Your Info with an MS App? A smartphone app has been designed to collect lots of information related to your multiple sclerosis āĀ things such as physical and cognitive test results, MRI images, and even genetic data. The hope is that via the app researchers will be able to collect a lot of patient data…
May 22, 2017 Columns by Debi Wilson A Walk in the Park Reminds Me That I Am Not Alone My walk in the park usually consists of watching every one of my steps, while conserving my energy so I can finish the trek. In the midst of my walk, I remain acutely aware of how weak my legs are, and hope they don’t give out on me. For…
May 22, 2017 Columns by Ed Tobias MS News that Caught My Eye: Risk Factors, Biotin and Symptoms, Pills, Shots or IVs, and More In case you missedĀ them, here are some news stories that appeared in MS News Today that caught my eye over the past week. Ocrevus Market Entry Already Changing Dynamics in MS Treatment Choices, Spherix Analysis Suggests Are pills, shots, or infusions the therapy…
May 19, 2017 Columns by Ed Tobias An MS Garden Grows in Derby Those of us with multiple sclerosis know how difficult it is to describe our journey. Words frequentlyĀ are inadequate for that task. But, at Derby College in England,Ā horticulture students and their instructors have found a way. They’ve teamed up with local MS Society branches to create a 30-foot-by-40-foot garden…
May 18, 2017 Columns by Laura Kolaczkowski Defining Resiliency in MS and Ideas on Bouncing Back How well do you bounce back when MS gets you down? An article called āBouncing back again, and again: a qualitative study of resilience in people with multiple sclerosisā caught my attention because bouncing back is something I donāt do as well these days. I believe resilience means to be…
May 17, 2017 Columns by Judy Lynn Taming Grumpy Gut Many people with MS experience symptoms related to digestion. According to theĀ Pittsburgh Institute for MS Care and Research, āNearly two-thirds of MS patients have at least one GI symptom that persists for 6 months or more.ā Some of the most common problems are dysphagia (trouble swallowing), heartburn, nausea,…
May 17, 2017 Columns by Cathy Chester How to Survive Summer Heat Intolerance With summer right around the corner, itās time to start making plans. We all love spending time outdoors during the long hours of sunshine and warm temperatures, donāt we? Well, not everyone does. If youāre reading this, youāre probably living with multiple sclerosis. That…
May 16, 2017 Columns by Patricia Silva, PhD The Importance of Garages in Accessible Housing What makes housing accessible? I thought I knew all of the features that would make a dwelling accessible. Turns out I didn’t. The Department of Housing and Urban Development report on housing stock in America has a table that covers an extensive range of…
May 16, 2017 Columns by Teresa Wright-Johnson Intentional Living and Why Death Is Not My Greatest Fear A couple of weeks ago I wrote a column regarding end-of-life decisions. The reality is that the time will come for every human being. This journey of life and chronic illness continues to teach me salient lessons. I have been asked numerous times if I am afraid…
May 16, 2017 Columns by Ed Tobias 3 Travel Tips for Easier Flying with MS It’s the time of year for travel here in the U.S. Graduations, weddings and vacations are on all of our calendars. Air travel, in particular, can be a real pain for someone with a handicap such as multiple sclerosis. Security, aircraft seats and legroom are all becoming increasingly…
May 15, 2017 Columns by Debi Wilson Fear the Future? Change the Way You Think Fear of the future will likely rear its ugly head more often than you’d like when you have multiple sclerosis or any serious chronic disease. It can be difficult to keep your mind from wandering to a very dark place. Worries about how fast your disease is progressing,…
May 15, 2017 Columns by Ed Tobias MS News That Caught My Eye: Ocrevus Q&A, Cheap SPMS Therapy in Testing, and New Research In case you missedĀ them, here are some news stories that appeared in MS News Today that caught my eye over the past week. MSAAās Dr. Jack Burks Responds to Readersā Questions About Ocrevus and Its Use All over the internet MS patients are asking questions about…
May 15, 2017 Columns by Jamie Hughes Make Some Noise: The Importance of Concerts Pull up a chair, kiddos, and Iāll tell you a sad story. Because weāre both musicians, my husband and I love going to concerts together. Weāre on a budget, so we have to be choosy about who we see and where we sit. However, there is a short…
May 12, 2017 Columns by John Connor Whisky Galore: Two Friends Walk and Roll into a Distillery If I was writing fiction about two disabled people going on a road trip, I’d be pleased to create a character like Nigel. He’s stroppy, Northern (from the perspective of the U.K. there isn’t a direct U.S. analogy – think deep southā but really cold and more booze!)…
May 12, 2017 Columns by Ed Tobias Cholesterol Medication Shows Promise as MS Treatment I’ve been taking a statin drug for years to keep my cholesterol low, and it’s doing a really good job. Now, there’s hope that this class of drug also might be useful for MS patients. A major trial in the U.K. is testing the drug simvastatin (used to control…
May 11, 2017 Columns by Laura Kolaczkowski The Importance of Caring for Caregivers “Coping with Caregiver Burnout When Caring for A Person with Neurodegenerative Disease: A Guide for Caregivers,” published in the April 2017 issue of the Archives for Physical Medicine and Rehabilitation, is intended to give better insight into caregiver burnout, and what might be…
May 11, 2017 Columns by Tamara Sellman The MS Alphabet: Dermatomes, Dysfunction and More āDā Words (Editorās note: Tamara Sellman continues her occasional series on the MS alphabet with this first of two parts on terms starting with the letter āD.ā) When it comes to multiple sclerosis, mastering an understanding of the disease means you need to mind your Ps and…
May 10, 2017 Columns by Judy Lynn The Hidden Costs of Multiple Sclerosis MS is sneaky. It is expert at evading detection and diagnosis, and often brings a host of invisible symptoms that may come and go at random. MS also brings invisible costs ā expenses beyond the obvious medications, supplements, assistive devices, and healthcare. I am not talking about externalities,…
May 9, 2017 Columns by Teresa Wright-Johnson MS, Chronic Illness and Motherhood: A Salute to Mothers I am well aware of the importance of a mother, or a mother figure, and the significant role she has in the lives of her children and community. I am blessed to have an awesome mother who has profoundly shaped my life. It is her love, guidance, patience…
May 9, 2017 Columns by Ed Tobias About America’s Healthcare Puzzle There’s been lots of chatter on social media since the U.S. House of Representatives passed a measure last week that’s intended to repeal the Affordable Healthcare Act (Obamacare) and replace it with a new healthcare law. Lots of us with serious medical conditions are: a) worried, b) angry,…
May 8, 2017 Columns by Jamie Hughes Look What the Cat Dragged In! Like one third of America, Iām a cat lover. Iāve had kitties in my house since I was a child, often in sets. Currently, Iām the proud parent of two fur babiesāIvan (the tabby) and Baker (the Wegie)āand theyāre a great source of joy, entertainment and…
May 8, 2017 Columns by Debi Wilson Losing Our Independence Due to Multiple Sclerosis Losing our independence due to multiple sclerosis is a profound loss. With that loss comes the grieving process and inevitable change. On Grief.com in “A Message from David Kessler,” he discusses the fiveĀ stages of grief: denial, anger, bargaining, depression and acceptance. I have experienced all of these…