living with MS

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…

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…

The Multiple Sclerosis Foundation, which is celebrating its 30th anniversary this year, has launched a new website to make access to information and services easier, and a newly designed MS Focus magazine. MS Focus magazine is the foundation’s publication dedicated to common challenges, solutions, and stories of the…

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…

https://www.youtube.com/watch?v=JPa0bMG3zac In this film from MS Get Involved, Kerrie Newton talks about her exercise regimen and how important it is to her. She explains that exercising each day allows her to be able to stand for short periods and how it makes her feel better emotionally and helps with…

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…

In a cross-sectional study, researchers found that sexual dysfunction in patients with multiple sclerosis (MS) is linked to fatigue and depression. Treating these factors and identifying their causes is a potential strategy to treat the problem. The study, “Sexual function in multiple sclerosis and associations with demographic, disease…

“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)…