Columns

I make no secret that I believe MS nurse practitioners (NP) are the people who make the difference in an MS clinic. They are as knowledgeable as most neurologists when it comes to treating multiple sclerosis and usually can see their patients without the time constraints that doctors face.

Our daylight hours continue to get shorter, as we get closer and closer to the winter solstice. At 4:15 p.m. I close the curtains and blinds, uncomfortable sitting on display in my living room as I continue to work until 5:30 most evenings. It’s difficult to motivate myself to leave…

Here we go. This is the week my Lemtrada (alemtuzumab) infusions begin. A few weeks ago I wrote about how Lemtrada has been successful in stopping disease progression in folks with relapsing-remitting multiple sclerosis, and those who have transitioned to secondary progressive MS but continue to have relapses. There have…

There are very few days left this year. But in order for the amendments to the ABLE Act not to die in committee, they need to be brought to the floor for a vote. (If you need a refresher on the ABLE Act and pending amendments, I wrote about them in…

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…

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…

Here is my Pick of the Week’s news, as published in Multiple Sclerosis News Today. UV Light May Lead Way to New Treatment for MS and Inflammation Now this might be exciting, if turns out that ultraviolet light can truly be the basis of new treatments that…

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,…

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…

Family Caregiver Month is observed each November, and it is estimated there are more than 90 million family members in the U.S. giving full-time care to people who have complex needs. In recognition of the work of the multiple sclerosis caregiver community, pharmaceutical company Genentech, a subsidiary of Roche,…

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.”…

I love it when the sun is shining. I spend a lot of time outdoors in the summer, despite the impact of the heat on my multiple sclerosis. I love the warmth and the brightness. So, I lather up with sunscreen and I figure that, at least for me,…

Multiple sclerosis is so weird. Sometimes I just put up with a strange sensation or painful problem because I do not know how to describe it to the doctor without sounding crazy. I hope the problems will just go away, and sometimes they do. Maybe I am a little…

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…

This is my Pick of the Week’s News, as published by Multiple Sclerosis News Today. New Company Specializing in Stem Cell Platform for MS and Other Ills Raises $48.5M A news story about a new company raising nearly $50 million to further develop stem cell transplants that…

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…

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…