Columns

If You Don’t Know Me, Please Don’t Judge Me

Those of us with “invisible illnesses” are no strangers to this subject. Most of us have experienced situations in which we were judged, insulted and scorned based on people’s opinions and perceptions. We are told that we don’t look sick and we are placed in situations where we feel…

Feeling Motivated, When Your MS Isn’t!

Keeping motivated is a daily struggle, and honestly, most days I just don’t feel like moving. I feel better once I do, of course, but the motivation to move and be productive is lacking. Here are a few tips that I find helpful to help keep me motivated and…

Life is a Symphony of Challenges – Play On!

In Cold Sassy Tree, the classic novel by Olive Ann Burns, Grandpa Blakeslee tells his grandson Will Tweedy that, “Livin’ is like pourin’ water out of a tumbler into a dang Coca-Cola bottle. If’n you skeered you cain’t do it.” If you don’t speak fluent hick, as I do,…

Beating the MS Clock

I’m 68 years old.  I’ve had multiple sclerosis since I was 32. I’m not sure where I expected this disease would take me when I was diagnosed 36 years ago, but I hoped that MS wouldn’t steal too much of my life from me.  I certainly never thought of…

Here’s What Kayak Lessons and MS Have in Common

Several weeks ago I wrote about the benefits of time outdoors and my desire to learn to kayak properly, so  it can be an option when my legs won’t carry me into nature. I recently completed the final of three indoor kayak lessons. The course was actually called “Kayak Roll.”…

When Accessibility Becomes a Question of “Why Bother?”

My first encounter with “Why bother?” was in 2011. My whole family had met in Maui to celebrate my daughter Amber’s wedding. It also was my first travel since my 2010 primary progressive multiple sclerosis diagnosis, and my first trip with a wheelchair. I didn’t realize when you fly…

There are No Greater Words Than ‘Thank You’

Last week I wrote about surviving the holiday blues. This week I am going to focus solely on giving thanks. November 20 marked the 16-year anniversary of my second open-heart surgery. November also marks the second year of my multiple sclerosis diagnosis. As I reflect on my life, all…

Information Overload Precedes Lemtrada Infusions

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…

I Am Very Thankful for My MS Diagnosis

  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…

‘Courage, Dear Heart’*

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…

Have Scooter, Will Travel (Part 2)

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…

Do MS Injectable Medications Need Refrigeration?

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…

Surviving the Holiday Blues Requires Conscious Effort

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.

Have Scooter, Will Travel

“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…

Pseudobulbar Affect and other rare MS conditions

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…

Letter to a Scared Young Woman

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…

Research About Why Interferon Can Fail is Welcome

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”…

Sharing My MS Journey – Silence is Not An Option

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…

Us with MS – How Do People See Us?

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…

Finding Power in Knowledge and Numbers

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…