Columns

You know the saying about having too much of a good thing? I think that’s me, right now, as I think about starting infusions of the multiple sclerosis drug Lemtrada on Dec. 5. Lemtrada is supposed to be a super drug. As I wrote in an earlier column,…

  I am thankful for a lot of things in my life and my multiple sclerosis (MS) diagnosis is one of them. Before learning it was MS, I was on a very long roller-coaster ride of unexplained symptoms. Test after test came back normal. Yet, I still had weak…

Here is my Pick of the Week’s News as published by Multiple Sclerosis News Today. Effectiveness and Safety of DMDs Top Patient Concerns with These Therapies, Survey Says Having progressive multiple sclerosis, the issue of drugs that are disease modifying therapies (DMTs) has never arisen in my…

You’ve gotta dance like there’s nobody watching, Love like you’ll never be hurt, Sing like there’s nobody listening, And live like it’s heaven on earth. Those lines from William W. Purkey, a professor, author and motivational speaker, have been blazoned on countless greeting cards and posters…

My column, earlier this week, about traveling with a scooter, generated a couple of questions. What do you ride? Where did you get it? How much did it cost? Here are a few answers for the group. Less than a week ago I finally trashed my Pride Sconic, which…

Traveling with multiple sclerosis (MS) is challenging for a number of reasons. There are many symptoms a person may need to consider, such as accessibility, temperature control, and medication management, to name a few.  While packing for a recent extended trip, I realized that my one-week pill box wasn’t…

We are officially entering into the holiday season. Thanksgiving is almost here and Christmas will follow. The stores are filled with decorations. Holiday sales are advertised and children are excitedly preparing their Christmas lists. In addition, we will receive, and may even send the proverbial “Happy Holidays” greeting cards.

“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…

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…

I have made no secret of my distrust of the side effects from many of the disease-modifying therapies (DMTs) that are used mainly in the fight against relapsing multiple sclerosis (MS). The fact that the most serious, albeit rare, side effects listed by the manufacturers of some drugs, include “death”…

“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…

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…

The National Disability Institute manages the website www.ablenrc.org that has good information. I watched all the “webinars” and found them informative. A new one is going to be broadcast Nov. 15, 1:00-2:30 CST  (event number 660 742 928),  and likely will be archived with the rest of the webinars…

“… 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…

ABLE Accounts and Amendments In my previous column, I introduced the exciting new program for people with disabilities, called the ABLE Act (Achieving a Better Life Experience Act). The final bill, signed into law in 2014, deviated substantially from the original proposal and that needs to…

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…

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 recently had the opportunity to serve as a consumer reviewer of research applications submitted to the Multiple Sclerosis Research Program (MSRP) sponsored by the Department of Defense. I was nominated by the Accelerated Cure Project for MS for this role.  As a consumer reviewer, I was a full…

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…

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.