I am sure many of us have had instances where someone “offered” their advice on what is the best way to manage our illnesses. They are not medical professionals and many of them don’t suffer from the disease themselves. They present their beliefs as scientific dogma, often referring to…
Columns
For most of the 36 years since I was diagnosed with multiple sclerosis I’ve not been bothered by pain. Just lucky, I guess. Until last month. Suddenly, I’ve developed pain in both hips and I don’t know why. The pain is most intense when I first put my feet on…
On March 27, 2013, my primary care physician called me about MRI results from the day before. He and the radiologist concurred; they had found evidence of brain lesions consistent with multiple sclerosis. Following protocol, he sent me to the best specialist in Seattle to confirm diagnosis. His was a preliminary diagnosis. In the…
My last column “Serenity Now: Relaxation Techniques for MS, Part One” offered some quick and easy suggestions on how to relax in times of stress. This column is a continuation of that series. Movement, massage and applied pressure to the correct areas have many benefits. Massaging certain areas of…
MS Patient’s Pick of the Week’s News: Clinical Trials, Rebif, Swallowing, Euthanasia, Patent
Here’s my Pick of the Week’s News, as published in Multiple Sclerosis News Today. National MS Society-Sponsored Group Creates Tool Set to Measure Outcomes in MS Clinical Trials Speeding up clinical trials should have the knock-on effect of shortening the whole process of developing and approving new…
It seems I’ve made it to my second weekly column. I was going to write about a non-MS physical impairment that had kept me down for a month. It’s easing now and hopefully will make a future story with a happy ending. Instead I’m going to do a bang-up-to-the-moment piece…
There won’t be a lot of my words in this column but there will be lot of pictures. The column is devoted to some very personal multiple sclerosis art: Tattoos. Most of these “tats” contain an orange ribbon, the symbol for MS awareness. Some, as you’ll see, are a…
(Editor’s note: Today, Tamara continues her occasional series on the MS alphabet by giving further attention to the letter B.) When it comes to multiple sclerosis, mastering an understanding of the disease means you need to mind your Ps and Qs, dot your Is, cross your Ts, and recite…
Benign MS: Is It Real or a Myth?
What is benign MS? Does it even exist? Certainly it is not one of the types of the disease often listed as making up the multiple sclerosis family. It is a term that is surrounded by controversy,…
Diligent research and planning have left me confident in my ability to enjoy upcoming travels, while managing MS and health concerns. Decisions have been made regarding luggage, medications, airport travel, car rental, and accommodations. I know whether to expect sun or snow, cobblestone or freeways, and have been practicing…
Most of us have heard Rachel Platten’s Fight Song. It became an anthem for many people who struggle with illness and adversity. Fight Song has become one of my favorite odes. As a writer, I love to listen to the words of song lyrics. The music is…
Sooner or later we’re all going to die. We may not want to think about it, but it’s important that we do, especially those of us with a chronic disease such as multiple sclerosis. Though we don’t have a choice about dying, we can have a…
So, I’m lying on the floor taking in the stippled ceiling we’ve never changed in the past 19 years. My son, also 19, is now at university. That’s how I can be so exact on the age of my relationship with the hideously slathered ceiling. We moved in one month…
Relaxation and serenity are both attainable with the correct calming techniques. When overwhelmed by stress, the skills that have been gained and practiced become second nature to be summoned as needed. The combination of stress and multiple sclerosis can wreak havoc in the body. It can lead to a…
Here is my Pick of the Week’s News, as published by Multiple Sclerosis News Today. Ocrevus and the hope of ‘ending MS forever’: Interview with MS Society’s Tim Coetzee Ocrevus possibly being one of the most significant advances in MS treatment, especially for people with PPMS, the…
March is Multiple Sclerosis Awareness Month. That means we need to make the most of these four weeks to raise some money for research, and raise awareness about the disease and the 2.5 million people in the world currently living with it. What’s the best way…
Alexa, Tell Me About MS
Alexa, Amazon’s little voice-activated information box, has just received a multiple sclerosis infusion. As part of MS Awareness Month, fifty facts about MS have been loaded into Alexa’s memory. If a user says “Alexa, start MS Awareness” the system will respond with a random MS fact. (And a short…
News that daclizumab, brand name Zinbryta, has been given the go-ahead to be available through the U.K.’s National Health Service (NHS) for treating relapsing MS, at least in part of the country, is good news. But why has the decision taken…
In pursuit of an answer for breathing difficulty The MRI of my cervical and thoracic spine showed no active lesions last week. That was good news. Other…
MS and the Fear of Missing Out
A couple of weeks ago I had a curious encounter with the friend of a friend. I live in a small town. In some ways we’re all at least neighbors. Huddled in a small group at the local grocery store, we were chatting about our experiences with the…
The past few months have not been fun. We lost my father-in-law, put our beloved cat down, and moved from our home to a townhouse that is too small and poorly built. With a low inventory of rental properties in our area, and…
This was an eventful week. I was not feeling well and ultimately ended up in the hospital for a couple of days. I had severe neck pain that radiated to my shoulder and arm. In addition, I woke up one morning with severe chest pains. I couldn’t determine whether…
Allison Wheeler is an unconventional heroine of a novel, but she found her way into my heart as I read A Million Ordinary Days by Judy Mollen Walters, a book being published today, March 14. Author Judy is also a Bionews Services columnist. She has Crohn’s disease and, writing…
One of my favorite movie lines appears in “Jerry Maguire.” Sports-agent Maguire is trying to convince one of his football-player clients to stay with him and the client keeps insisting: “Show me the money.” I got to thinking of that line the other evening, while reading a Facebook post…
When describing a multiple sclerosis exacerbation (also called a relapse, attack, or flare-up), comparing it to a home’s circuit panel is a good analogy to use. When a fuse blows on the circuit board the power is interrupted. During an MS attack, the myelin sheath that covers nerve axons…
Editor’s note: Our IBD columnist, Judy Walters, will have a new book out Tuesday in which the central character has multiple sclerosis. Here, she remembers how MS affected her own family during her childhood. I was only 10 when my grandmother died, but I remember so much about her. I remember…
Here is my Pick of the Week’s News, as published in Multiple Sclerosis News Today. ‘Liberation Therapy’ Is Useless, Costly, Potentially Dangerous, Study Finds At last, some positive research to debunk a supposed treatment that is not supported by any genuine repeatable research. To hear this ridiculous…
The practice of collecting data about how we MS patients go about living our lives, and then using that data to improve our patient care, seems to be gathering steam. In the European Union a project called Real World Evidence Data, or RWE, is working outside of the…
#ACTRIMS2017 – Neurologist Bourdette Questions ACTH Medicare Costs in Interview with MS News Today
The sky-high costs to Medicare for prescriptions of the MS medication H.P. Acthar Gel, as reported in Multiple Sclerosis News Today were highlighted at the Americas Committee for Treatment and Research in Multiple Sclerosis (ACTRIMS) 2017 Forum in…
We all know, because we have heard it so many times, that MS is not the same for everyone — that no two people have exactly the same combination of symptoms. That got me…
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