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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…

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…

Discovery MS, a nonprofit research initiative based at the David H. Murdock Research Institute (DHMRI) in North Carolina, had its official launch recently, and announced a series of research projects into multiple sclerosis (MS). The initiative uses private funding to advance research aiming to develop new prognostic and diagnostic tools for MS.

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…

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…

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…