December 5, 2016 Columns by Debi Wilson 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…
December 5, 2016 Columns by admin MS Patientās Pick of the Weekās News: UV light, Parasite Protein, Copper, Stem Cells, Palliative Here is my Pick of the Weekās 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…
December 2, 2016 Columns by Jamie Hughes 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, āLivinā is like pourinā water out of a tumbler into a dang Coca-Cola bottle. Ifān you skeered you caināt do it.ā If you donāt speak fluent hick, as I do,…
December 2, 2016 Columns by Ed Tobias Beating the MS Clock I’m 68 years old.Ā 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.Ā I certainly never thought of…
December 1, 2016 Columns by Laura Kolaczkowski E! News Celebrity Zuri Hall Encourages Support for MS Caregivers 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,…
December 1, 2016 Columns by Judy Lynn Here’s What Kayak Lessons and MS Have in Common Several weeks ago I wrote about theĀ benefits of time outdoorsĀ and my desire to learn to kayak properly, so Ā it can be an option when my legs wonāt carry me into nature. I recently completed the final of three indoor kayak lessons. The course was actually called āKayak Roll.ā…
November 29, 2016 Columns by Ed Tobias Let the Sun Shine (Moderately) on Your Multiple Sclerosis 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,…
November 28, 2016 Columns by Judy Lynn Cervico- … what? MS-Related Dizziness and Neck Spasms 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…
November 28, 2016 Columns by Debi Wilson 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…
November 28, 2016 Columns by admin MS Patient’s Pick of the Week’s News: Stem Cells, Sun Scares, T-Cells, and More This is my Pick of the Weekās 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…
November 22, 2016 Columns by Teresa Wright-Johnson 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…
November 22, 2016 Columns by Ed Tobias 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 column,…
November 21, 2016 Columns by Debi Wilson 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…
November 21, 2016 Columns by admin MS Patientās Pick of the Weekās News: DMTs, Availability, Cannabis, Imaging, Sexual Dysfunction Here is my Pick of the Weekās 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…
November 18, 2016 Columns by Jamie Hughes ‘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…
November 18, 2016 Columns by Ed Tobias 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…
November 16, 2016 Columns by Judy Lynn 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.Ā While packing for a recent extended trip, I realized that my one-week pill box wasnāt…
November 15, 2016 Columns by Teresa Wright-Johnson 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 āHappy Holidaysā greeting cards.
November 15, 2016 Columns by Ed Tobias 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…
November 14, 2016 Columns by admin MS Patientās Pick of the Weekās News: Immunity, Marijuana, Late-onset, Genetics and Reimbursements Hereās my Pick of the Weekās 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 theĀ TYK2Ā gene, which encodes…
November 14, 2016 Columns by Debi Wilson 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…
November 11, 2016 Columns by Ed Tobias 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…
November 10, 2016 Columns by admin 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).Ā The fact that the most serious, albeit rare, side effects listed by the manufacturers of some drugs, include “death”…
November 9, 2016 Columns by Judy Lynn MS Needle Fatigue: That Sudden, ‘I Am Not an Orange’ Feeling āI can come over and stab you, if Gramma canāt do it,ā read the Facebook post from my oldest son.Ā āAw ā¦ thanks, kiddo,ā I replied. Some things seem more interesting when taken out of context!Ā Of course, most of you will realize that my son was offering to…
November 8, 2016 Columns by Teresa Wright-Johnson Sharing My MS Journey ā 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…
November 8, 2016 Columns by Ed Tobias Are You Ready for Bed at Noon? It May Be More Than Fatigue 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…
November 7, 2016 Columns by Debi Wilson Us with MS – How Do People See Us? Years before I was diagnosed with multiple sclerosis, the administrator at my jobĀ 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…
November 7, 2016 Columns by admin MS Patientās Pick of the Weekās News: Ampyra, Breast Cancer, Bourbon, Myelin, Lemtrada Hereās my Pick of the Weekās News published last weekĀ 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 withĀ AmpyraĀ (prolonged-release fampridine)…
November 4, 2016 Columns by Jamie Hughes 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 thatās a researcher and a digger at heart, the one who simply canāt get enough information, gathers it nonstop from a variety of sources; after all, Ā knowledge is…
November 4, 2016 Columns by Patricia Silva, PhD ABLE Act Webinar Set for Nov. 15 The National Disability Institute manages the website www.ablenrc.org that has good information. I watched all the āwebinarsāĀ and found them informative. A new one is going to be broadcast Nov. 15, 1:00-2:30 CST Ā (event number 660 742 928), Ā and likely will be archived with the rest of the webinars…