living with MS

“Round, round, get around. I get around.” I was humming that classic 1960s Beach Boys tune this morning (yes, I’m that old) as I thought about a feature story that I saw on one of the TV networks recently. The story profiled Cory Lee. Cory has spinal muscular…

Here’s my Pick of the Week’s News, as published by Multiple Sclerosis News Today. Immune System May Harbor Natural Way of Fighting MS, Other Autoimmune Diseases A genetic key to a possible natural way of battling MS could be worth further work. A variant in the TYK2 gene, which encodes…

Multiple sclerosis, as with other neurological disorders, brings a lot of changes to our bodies. Many changes and symptoms are much more common than others. It is the lesser-known conditions that MS evokes that sparked my interest for this column. Pseudobulbar Affect (PBA): is a rare condition reported to…

Chronic diseases like multiple sclerosis (MS) not only impact patients, they also inspire fear among healthy people who may be at risk of the disease. In a new study, researchers found that the availability of multiple sclerosis (MS) therapies provides “peace of mind” value to currently healthy individuals, particularly when…

In general, patients with multiple sclerosis (MS) choose their disease-modifying drug (DMD) treatment based on considerations of effectiveness and potential side effects. But the weight they assign to these considerations can differ widely, making it important they are part of treatment decisions, especially regarding DMDs. These findings are in the report, “Identification and…

Dear Lauren Parrott, I know you’re scared. The fears that you shared in your video blog ring true to any of us who have faced the unknowns of a new multiple sclerosis medicine. https://www.youtube.com/watch?v=eS9-nSfvgSI I’ve been there. I’ve gone through three major multiple sclerosis drugs over the…

People with late-onset multiple sclerosis (MS) tend to more rapidly rise in disability scores than younger patients with early onset MS, according to study in MS patients in Kuwait that compared their scores during follow-up consultations. Typically, the first symptoms of  multiple sclerosis occur between the ages of 18 and 40, with…

“I can come over and stab you, if Gramma can’t do it,” read the Facebook post from my oldest son.  “Aw … thanks, kiddo,” I replied. Some things seem more interesting when taken out of context!  Of course, most of you will realize that my son was offering to…

The British government announced on Oct. 31 that a new Personal Support Package will be available for people with health disabilities, such as multiple sclerosis (MS), ensuring they receive personalized health and employment support. A Green Paper – a government document for consultation – is available online to open…

Several people have asked me why I choose to publicly share my multiple sclerosis (MS) diagnosis and experiences with chronic illnesses. Some ask in admiration, stating how they wish they were comfortable enough to also do so, while others ask in judgment and condemnation. I have been told that people…

I thought I’d finish writing this last night, but I was too tired. Same thing the night before, and I’m sure this sounds familiar to a lot of you. The National Multiple Sclerosis Society estimates about 80% of the people who have MS have fatigue as one of…

Years before I was diagnosed with multiple sclerosis, the administrator at my job assumed one day that I had been drinking or that I was on something. My balance was a little off and I bumped into a wall right in front of her. I didn’t think anything of it…

Here’s my Pick of the Week’s News published last week in Multiple Sclerosis News Today. Ampyra Helps MS Patients Not Only Walk Better, But Feel Better Too, Study Reports This is news of encouraging research. Results from a Phase 2 clinical trial showed that treatment with Ampyra (prolonged-release fampridine)…

When you have a chronic illness, learning everything you can about it is both a blessing and curse. The part of me that’s a researcher and a digger at heart, the one who simply can’t get enough information, gathers it nonstop from a variety of sources; after all,  knowledge is…

“… in 3 years we went from living decent not rich to poverty and will prob have no utilities soon and maybe homeless.” An MS patient wrote that after I posted Part I of this column a few days ago. “I went threw (sic) all of our savings…

A large international research effort concluded that the geographical area where a person lives affects how early they will start showing symptoms of multiple sclerosis (MS), and that people living in the more northern regions having the earliest disease onset. The age at which a person fell ill also was…

Doesn’t time fly? It seems only yesterday that I was preparing to go to Moscow, yet tomorrow will be three weeks since my return. I have written enough about my experiences at the A.A. Maximov center so, today, we’ll take a look at how HSCT progresses, step by step. The…

This photo was taken more than a year ago and I remember it as if it were yesterday. There was so much going on behind the smile captured in this picture. Smoky Robinson serenaded about “the tears of a clown.” I definitely played the role of the clown that…

One presenting symptom of my multiple sclerosis (MS) was severely slowed and slurred speech. There were several other disturbing outcomes of my back-to-back, initial exacerbations, but it was the speech that was my greatest fear. After my second MRI, the neurologist explained that the dysarthria, or trouble speaking, was…

I’m not asking for your money.  (At least not yet.)  But I’ve recently seen a lot of news stories about MS patients who are. Multiple sclerosis battler fights for $200,000 treatment Or… Fundraiser for Deanna Or… Burbage dad’s £50,000 appeal to…

The black hole — that is the name I have given to my MS depression (yep, I name my depression. Doesn’t everyone?). It’s so easy to become depressed when you have MS. The disease is always on our minds. We are always thinking about how to maneuver our daily life…

This is my Pick of the Week’s News, as published by Multiple Sclerosis News Today. Study of Myelin-producing Cells a Step Forward for MS, Other Neurological Disorders Isn’t it strange how often in the world of science, something of importance is found in an unconnected study? Here,…

It’s happened to us all.  You arrive at a business and discover there are steps at the entrance. A few years ago my wife and I arrived to check-in to a 4-star hotel near The Wheel in London, and discovered that there were a dozen steps at both of…

I live in a part of the country with beautiful green forests, mountains, abundant freshwater, and saltwater.  If you have seven hours to spare, you can drive across the state and experience desert, orchard, mountain, alpine meadow, rainforest, and the Pacific Ocean. This beautiful land also comes with some…

Posture control is a complex skill, requiring different areas of the nervous system to work well and to work together — but the damage caused by multiple sclerosis complicates such nervous system multi-tasking, leading to postural problems and the well-established tendency for MS patients to fall. Several neurological systems are known…

One of my favorite gospel songs is “Stand” by Donnie McClurkin. There’s a verse that says, “after you’ve done all you can, you just stand.” My spirit reacts to this song each time I hear it. It satiates my soul. I love music and believe it is a gift.

One of the MS blogs that I follow is written by Jen, who lives in England.  It’s called Tripping Through Treacle. Doesn’t that neatly sum up the lives of many of us in just three alliterative words?  From MS newbies to old-timers like me, we worry (or have worried)…

Fall is here and things are a little more slick. Walking for most of us with multiple sclerosis involves weakened legs and lack of balance. We have daily challenges getting around in good weather, let alone bad. Add a little rain, a few gusts of wind, and some bone-chilling cold and…

Here is my pick of the week’s news items, as published in Multiple Sclerosis News Today. Lemtrada Seen to Help Reverse MS Disability in People in Earlier Stages of Disease A medication that might not just stop but reverse disability of people with relapsing MS? Now, this is…

Most of us who live with multiple sclerosis also live with a disease modifying therapy (DMT) — a drug that, we hope, will positively modify the course of our disease. One of the earliest of these was Avonex, a weekly injection into the muscle. I was one of those…