Columns

Tinnitus and MS: An Annoying Combination

Loss of hearing symptoms such as tinnitus are not usually attributed to multiple sclerosis, but for those with MS whoĀ do experience tinnitus, like me, they can be very annoying. The American Tinnitus Association (ATA) describes the symptoms as: “the perception of sound when no actual external noise is present.

Still Waiting on Ocrevus

  Several months ago I wrote a blog on my personal websiteĀ aboutĀ Ocrevus (ocrelizumab), the first drug that’s designed specifically to treat primary progressive, as well as remitting, multiple sclerosis. The clinical trials forĀ Ocrevus posted excellent results. The buzz in the medical community was good, Ā and it was…

We Need Pharma If We Hope to Find a Cure for MS

We all know the credit card commercial with actor Samuel L. Jackson talking about the buying power and the return on a certain credit card. He speaks about the bonus cash-back offers you can accrue if you just keep spending money and putting it on your credit card.Ā The tag…

Multitasking vs. Mindfulness

The glory days of multitasking may be fading. More and more research points to the fact that our brains actually cannot multitask. Rather, the brain shifts rapidly (itā€™s all relative) back and forth between tasks as we attempt to do multiple activities at once. Like many people with MS,…

MS, Mercury and My Mouth

When I was a child my teeth had a lot of cavities So, I had lots of fillings in my mouth. The fillings were silver amalgam, which contain about 50% mercury. Mercury is a pretty toxic metal. In fact, these days if you break a thermometer and its mercury spills…

High dose biotin protocol – my nine month update!

Nine months ago I started the high dose biotin protocol. I did so in an effort to slow the progression of my primary progressive multiple sclerosis. This is the link for my first article in August detailing the high dose biotin protocol and my results at that time.

Hope Lights the Way to a Cure for MS

ā€œThis first candle in the advent wreath,ā€ I told my kids as I clicked the lighter and set its flame atop the wick, ā€œrepresents hope. What does that word mean to you guys?ā€ In the warm glow of the purple taper, we talked about everything from wishes and…

Lifting a Toast to Andrew Barclay

I don’t want to write about Andrew Barclay. But I have to. Because Andrew Barclay could be you or me. Barclay died in early December. He was a former civil servant in the U.K. and a grandfather. He turned 65 on his last birthday. And, Andrew Barclay had multiple…

Phoebe Scopes, British HSCT Pioneer in Moscow, Part 2

Last week, I introduced you to Phoebe Scopes, the very first MS patient from another country to undergoĀ hematopoietic stem cell transplantation (HSCT) in Moscow. Today, in Part 2, Ā we pick up the story of the 46-year-old who lives in London. Ian: So, you had done lots of research. How…

My Lemtrada Infusion: Five Days Done

I’ll admit I was nervous as I sat in the infusion chair for Day 1 of Round 1 of my Lemtrada (alemtuzumab) infusions. I’d read a lot, and talked with my neurologist a lot, about the drug. I knew the benefits of Lemtrada could be great. My multiple sclerosis…

Know which questions to ask your neurologist about MRIs

I’m sure all of us with multiple sclerosis have had at least one magnetic resonance imaging (MRI) scan. Most likely, more than one. MRIs are designed to scan and provide detailed pictures of the body, the brain included. The test can reveal scars (plaque lesions) on the brain and the…

Volunteers Needed to Make MS Research Project Meaningful

Have you ever wondered how your MS experience compares with others? Your ability to go out and do things? The therapies you’ve used? Your symptoms? Your age and ethnic background? Researchers from the Accelerated Cure Project for Multiple Sclerosis have been collecting this kind information for nearly two years…

The Verity and Power of Spoken Words

I had the pleasure of being invited to speak and share my story at an event this week. Although I speak often, each encounter leaves me in awe. I am continuously reminded of the numbers of people with whom my story resonates. I also am cognizant of the lasting…

Winter Is a Time to Recharge Amid Nature’s Quiet

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 5:30Ā most evenings. Itā€™s difficult to motivate myself to leave…

Starting Down My Lemtrada Road

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, andĀ those who have transitioned to secondary progressive MSĀ but continue to have relapses. There have…

If You Don’t Know Me, Please Don’t Judge Me

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…

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…

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, ā€œLivinā€™ is like pourinā€™ water out of a tumbler into a dang Coca-Cola bottle. Ifā€™n you skeered you cainā€™t do it.ā€ If you donā€™t speak fluent hick, as I do,…

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…

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 wonā€™t carry me into nature. I recently completed the final of three indoor kayak lessons. The course was actually called ā€œKayak Roll.ā€…