Columns

Need Help Paying for Your MS Drug?

With last month’s approval of the multiple sclerosis drug Ocrevus, I’ve again heard the plea “But how can I afford it?” Ocrevus carries a price tag of about $65,000 a year. That’s not high compared to some other MS drugs, but it still can mean a higher…

A Game of Spin the Bottle, Then Mono, EBV and MS

A popular theory of what contributes to developing multiple sclerosis is a disease called mononucleosis (also known as glandular fever), which can be caused by Epstein-Barr virus (EBV). It is thought that the virus weakens our defenses in the blood-brain barrier, allowing white blood…

ABLE Act Improvements Reintroduced in Congress

The ABLE Act improvement bills were reintroduced into CongressĀ this week and referred to committee on April 4.Ā The billsĀ died in committee in 2016 before an active campaign could garner enough attention in that election year. I urge all readers in the U.S. toĀ call yourĀ representatives and senators to encourage them to…

One Day in the Working Life of John Peter Connor

These might be the days of the gig economy, but I’ve been doing one every Tuesday for 27 years. My particular white van (for US readers the delivery drivers of such are a British stereotype of the new Amazon order ā€” or lack of it) is a comedy vehicle…

Ocrevus: Should I Switch?

There was much fanfare when the multiple sclerosis drug Ocrevus (ocrelizumab) finally was approved by the U.S. Food and Drug Administration last week. Perhaps a little too much fanfare? For example, a story broadcast on the NBC Nightly News focused on a woman, apparently a participant in an…

If We Took a Holiday (from Our Meds) It Could Be So Nice!

I was a teenager during the 1980s and cannot say the word ā€œholidayā€ without Madonna’s song playing briefly in my head. For most holidays the perky music seems okay, but for discussion of a “drug holiday”Ā it feels a bit off. Sort of like, ā€œYay! You have a chronic…

Going All In for Ocrevus ā€” Together

ā€œIs the MS drug news good for u?ā€ my friendā€™s text asked. It was Wednesday morning, March 29. Genentech had just announcedĀ  that Ocrevus, the ā€œFirst and only approved disease-modifying therapy for primary progressive form of multiple sclerosis (PPMS) ā€“ one of the most disabling forms of…

Is Ocrevus Right for Me? So Close, Yet So Far

History has been made because of a major breakthrough for multiple sclerosis sufferers everywhere. Ocrevus (ocrelizumab),Ā by Genentech, has been finally approved by the U.S. Food and Drug Administration. It is the first drug treatment that includes my type of MS, primary progressive. This is what I’ve…

A Word, If You Please

Thirteen years ago, a neurologist sat on the edge of my hospital bed and told me, ā€œYou have MS. Itā€™s not the end of the world. Thereā€™s more on the internet than I could ever tell you about, so I suggest you do some research. Good night.ā€ Since…

Making Some Valid Points About Acupuncture and MS

Have you ever used acupuncture?Ā  I have a number of times and would doĀ so more often if it were a medical service covered by my insurance. Unfortunately, for now, most complementary treatments we have available to help with the symptoms of multiple sclerosis are not covered by commercial insurance. In…

Dan Says Treasure Your Caregiving Hero

Caregivers are in the spotlight during MS Awareness Month and, as it draws to a close, one man with multiple sclerosis is calling for everyone with the disease to recognize them. Dan Melfi, who lives in the…

My MS Is Getting to Be a Pain, Literally

For most of the 36 years since I was diagnosed with multiple sclerosis I’ve not been bothered by pain. Just lucky, I guess. Until last month. Suddenly, I’ve developed pain in both hips and I don’t know why. The pain is most intense when I first put my feet on…

Why It’s Important to Observe Your Diagnosis Anniversary

On March 27, 2013, my primary care physician called me about MRI results from the day before. He and the radiologist concurred; they had foundĀ evidence of brain lesions consistent withĀ multiple sclerosis. Following protocol, heĀ sentĀ me to the best specialist in SeattleĀ to confirm diagnosis. His was aĀ preliminary diagnosis. In the…

Serenity Now: Relaxation Techniques for MS, Part Two

My last column “Serenity Now: Relaxation Techniques for MS, Part One” offered some quick and easy suggestions on how to relax in times of stress. This columnĀ is a continuationĀ of that series. Movement, massage and applied pressure to the correct areas have many benefits. Massaging certain areas of…