Columns

Getting Out, Despite the Crowds

Last week, my husband and I attended an outdoor concert in a small venue that we used to regularly attend just a few years ago, before my MS affected my mobility. Our last concert there was two years ago, and although IĀ was skeptical about going, the weather was perfect,Ā and…

Taking My MS for a Sea Ride

I’ve been away for about a week, the first break of that length that I’ve had from writing about MS in about two years. Much of that time was spent on a trip from Long Island, New York, to Newport, Rhode Island, aboard the Mariner. Marine chart of…

MS Lesions and Silent Inflammation

Multiple sclerosis (MS) consists of more than lesions; it also comprises silent inflammation. Lesions seem to get all the attention, as they are photographed and flashy, and the main topic in MS circles. But silent inflammation is what is running the havoc behind the scenes. The MS Society…

I’m Using My Status to Speak Up

Iā€™ve been thinking a lot about privilege in recent months ā€” what it enables as well as what it prevents. Those who benefit from it may not be aware of their position, and when their privilege is pointed out, they have a hard truth to face. Many refuse to…

Plumbing the Depths

Well, this is going to be a niche market: A picture of a toilet should grab the attention of any plumber who’s now got MS and reads Multiple Sclerosis News Today. Victories need to be celebrated no matter how small the Venn diagram is! The toilet looks OK.

Revelations Learned in My Aha! Moments

Have you ever asked yourself, ā€œWhat am I supposed to do with my life?” or, “How did I get here?” I have asked these questions several times throughout my existence. Those questions regurgitated at the occurrence of every life-altering event. I did not receive a definitive answer that appeased…

Living With MS and Remaining Positive

  Living with multiple sclerosis (MS) could be compared to having an annoying house guest who never leaves. You can tolerate them at first, but soon your nerves and resilience wear thin. You try to accept and adapt to the house guest, but you never give up on trying to…

Downbeat, but Upbeat

Most weeks with MS are downbeat. That’s hardly a way to capture a reader’s attention ā€” all of us struggle. What we need is light to blow away the shade. Last night as I climbed the stairs to bed, my legs gave out with three stairs to go. Luckily,…

Tune into the World and See

As I pulled into the overcrowded Trader Joe’s parking lot, I was grateful to see an open handicapped space. Once parked, I turned off the car engine and paused; the heat was oppressive. Ten days post-chemo/Solu-Medrol (methylprednisolone) and my fatigue was as thick as the stagnant humidity. I…

The Many Uses of Botox for MS Care

There are many things that confuse me, particularly in the medical area. Perhaps thatā€™s why I am more comfortable thinking about MS patients’ quality of life rather than being into the hard science of medicine and understanding how medicines work. Iā€™m thinking in particular of botulinum toxin, more…

Making Myself a Priority

Last week, I wrote about climbing through grief. This week, I will focus on what I learned in the throes of the cycle of grief. Several people share the opinion that I do too much. My cousin often says that he wants me to say no to…

What Are You Living For?

Maybe itā€™s because Iā€™ve been listening to too much Jackson Browne lately, but Iā€™m distressed by the state of the world these days. And itā€™s not the big-ticket stuff like politics or social dysfunction thatā€™s got me worried, either (though both take turns keeping me up nights). Itā€™s…

The Graduate

The queue to get into Canterbury Cathedral in bright sunshine seems endless. The quandary of being Dracula strikes me ā€” I’ll either fry in the sun or fry in a church set up during the Roman occupation of Britain! Luckily my condition is MS, so we seek solace…

A Fall, a Scratch, and an MS Lesson Learned

In mid-July, the woman who writes the Multiple ExperienceS blog had a little fall. As Jamie explains, her rollator went forward, but her feet didn’t. The fall left a small cut on her knee. Over the next few days, Jamie’s knee swelled, and a trip to her doctor,…

I Climb Through Grief from the Bottom Up

It has been a while since Iā€™ve written a column. Within one month, two of my relatives have passed away. Spiritually, I believe in eternal life. However, in my earthly existence, death has left its sting. Multiple deaths, physical pain, and disappointments have catapulted me into a cycle of…

Phew, What a Scorcher

Phew, what a scorcher. The summer of 1976 was the last time it was this hot in the United Kingdom. My lasting memory of that summer was not lazing on a beach, but sweltering as a relief manager in an “off-licence,” which is a liquor store. I probably sold…

Are These Diseases Early MS Warning Signs?

It’s not unusual to hear someone say, “I was diagnosed with MS in [fill in the year], but I probably should have been diagnosed five or 10 years earlier.” Now a study reports that during the five years before someone is diagnosed with multiple sclerosis (MS), it’s quite…

Getting to ‘Yes’ with MS: Fear Beware!

I am a self-described homebody. I enjoy social gatherings and getting out, but I always look forward to coming home. Within five minutes of pulling into the garage, I am in sweats and a T-shirt. My demeanor immediately softens. Home is familiar, and in familiarity I find safety. Sometimes, safety…

My Lemtrada Journey: A Little Dip on the Roller Coaster

I’m now three months past my second round of Lemtrada treatments, so it’s time for an update. I began Lemtrada (alemtuzumab) in December 2016, hoping it will be the last disease-modifying therapy that I’ll ever need to use. I’ve had peaks and valleys since this treatment began, thus…

Is It an MS Diagnosis or Something Else?

I am told I have primary progressive multipleĀ sclerosis (PPMS), and my symptoms appear to be in line with that diagnosis. I continuallyĀ have a slow gait, leg weakness, balance issues, and fatigue. There is never a break from those symptoms. Intermittently, I have cognitive issues, slurred speech,Ā and burning…