Columns

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…

Doesn’t time fly? It seems only yesterday that I was preparing to go to Moscow, yet tomorrow will be three weeks since my return. I have written enough about my experiences at the A.A. Maximov center so, today, we’ll take a look at how HSCT progresses, step by step. The…

This photo was taken more than a year ago and I remember it as if it were yesterday. There was so much going on behind the smile captured in this picture. Smoky Robinson serenaded about “the tears of a clown.” I definitely played the role of the clown that…

One presenting symptom of my multiple sclerosis (MS) was severely slowed and slurred speech. There were several other disturbing outcomes of my back-to-back, initial exacerbations, but it was the speech that was my greatest fear. After my second MRI, the neurologist explained that the dysarthria, or trouble speaking, was…

I’m not asking for your money.  (At least not yet.)  But I’ve recently seen a lot of news stories about MS patients who are. Multiple sclerosis battler fights for $200,000 treatment Or… Fundraiser for Deanna Or… Burbage dad’s £50,000 appeal to…

The black hole — that is the name I have given to my MS depression (yep, I name my depression. Doesn’t everyone?). It’s so easy to become depressed when you have MS. The disease is always on our minds. We are always thinking about how to maneuver our daily life…

It’s happened to us all.  You arrive at a business and discover there are steps at the entrance. A few years ago my wife and I arrived to check-in to a 4-star hotel near The Wheel in London, and discovered that there were a dozen steps at both of…

I recently had the opportunity to serve as a consumer reviewer of research applications submitted to the Multiple Sclerosis Research Program (MSRP) sponsored by the Department of Defense. I was nominated by the Accelerated Cure Project for MS for this role.  As a consumer reviewer, I was a full…

I live in a part of the country with beautiful green forests, mountains, abundant freshwater, and saltwater.  If you have seven hours to spare, you can drive across the state and experience desert, orchard, mountain, alpine meadow, rainforest, and the Pacific Ocean. This beautiful land also comes with some…

One of my favorite gospel songs is “Stand” by Donnie McClurkin. There’s a verse that says, “after you’ve done all you can, you just stand.” My spirit reacts to this song each time I hear it. It satiates my soul. I love music and believe it is a gift.

One of the MS blogs that I follow is written by Jen, who lives in England.  It’s called Tripping Through Treacle. Doesn’t that neatly sum up the lives of many of us in just three alliterative words?  From MS newbies to old-timers like me, we worry (or have worried)…

Fall is here and things are a little more slick. Walking for most of us with multiple sclerosis involves weakened legs and lack of balance. We have daily challenges getting around in good weather, let alone bad. Add a little rain, a few gusts of wind, and some bone-chilling cold and…

Here is my pick of the week’s news items, as published in Multiple Sclerosis News Today. Lemtrada Seen to Help Reverse MS Disability in People in Earlier Stages of Disease A medication that might not just stop but reverse disability of people with relapsing MS? Now, this is…

Most of us who live with multiple sclerosis also live with a disease modifying therapy (DMT) — a drug that, we hope, will positively modify the course of our disease. One of the earliest of these was Avonex, a weekly injection into the muscle. I was one of those…

As a mother of two boys, I’m blessed with an abundance of dirty socks, Nerf darts, and Legos — all of which end up in the laundry (more or less) each week. And of those three kinds of detritus, I must say that the Legos vex me the most. If…

A woman who says her life was made miserable by fatigue caused by multiple sclerosis (MS), claims she is on the road to recovery because she has taken control of her body and is using a combination of hormones and diet. Instead of relying on conventional treatment, she is…

Our days have gotten shorter since June 20, but somehow I managed not to notice until a few weeks ago. Perhaps it is because we had a late summer here in the Northwest, and could comfortably leave home without a coat until late September. That’s also the time that…

“In sickness and in health.” These words are said by everyone embarking upon the exciting journey of marriage. Most are in love, excited about the future and hopeful they have found their happily ever after. Many of us repeat the words “in sickness and in health” without much thought,…

My neurologist calls Lemtrada “HSCT lite.”  She says that not only is the drug able to reduce exacerbations and limit the overall progression of multiple sclerosis, it’s actually reversed some symptoms in some of her patients.   I guess I’m going to find out if she’s right about…

I have written nine articles so far with shared ideas of what has helped me in this overwhelming battle with multiple sclerosis. My experiences and successes are shared in the hope that others will be helped as well. This 10th article is about what comforts and sustains me the most…

Here, I comment on my Pick of the Week’s News, as published in Multiple Sclerosis News Today. Myelin Regeneration Achieved in Mouse Model of MS Remyelination is one of the most exciting developments in the treatment of MS. Therapies aimed at regenerating the myelin sheath can work to…

I work full time in public health, and some days are spent ‘out in the field’ visiting clients in their homes. It requires careful planning to ensure that I have adequate water, food, medications, and layers of clothing for homes that are too hot or too cold.  I research…

I made a trip to the dentist today. What does that have to do with multiple sclerosis, you ask? Stay with me. We’ll get there. But first, let me tell you about a weekend conference that my local chapter of the National Multiple Sclerosis Society held recently. One of…

Disability from multiple sclerosis develops, on average, within 10 years of diagnosis. Financial catastrophe was often the consequence, until Congress passed the Achieving a Better Life Experience Act (ABLE Act) — signed into law on Dec. 19, 2014, by President Obama. This act allows you or anyone to…

The jury is still out on the role, if any, that heavy metals play in multiple sclerosis. Many theories have been floating around for years regarding the possible connection between MS and dental amalgams, pesticides, additives to food, lead paint in older homes … and the list goes on. The National…

Should those of us with multiple sclerosis get vaccinated for influenza or not? It’s a debate that takes place in many MS communities each fall. The argument against the flu immunization is based on half-truths and flat-out misconceptions — and a lot of anecdotal tales that don’t hold up to…

I’m filling in for Ian Franks this week on news item picks for Multiple Sclerosis News Today while Ian is in Moscow taking the first step in his HSCT (hematopoietic stem cell transplantation) quest. We wish him well. Virus Linked to Respiratory Infections May Also Trigger Brain Diseases…