MS

  Fatigue falls hard as I look out on the first hot day of the year. I struggle to focus as my head bobs. This is my new normal. The attacks are merciless,…

Fatigue. Most people with chronic illness – especially MS — experience this. My energy levels vary from one day to the next. I am tired of being tired (pun intended). There are days when getting out of bed is challenging, and times when I literally have to force…

Earlier this year, I visited a physical therapist I’d seen way back in my running days to devise a home workout routine that could help me address not only foot drop-related issues, but also a routine I’d actually do. One of the challenges I have with PT is doing…

Catheterization training in the hospital did not prepare me for how to manage on a daily basis. In my last column, I described how I ended up in the hospital unable to urinate at all. In this column, I will cover more details about what I learned along…

Father’s Day is Sunday, June 18, in the U.S. There are a lot of good fathers out there, but one I wanted to tell you about is my friend Jason Clark. He is a caring husband to his wife, Jenny, and an amazing father to his four children.

I am making the transition from multiple sclerosis patient to cancer caregiver. On May 11 my family’s world turned upside down when my husband of 41 years was diagnosed with advanced  pancreatic cancer. My caring husband, who has always loved and protected me, is now the one in…

Fear of the future will likely rear its ugly head more often than you’d like when you have multiple sclerosis or any serious chronic disease. It can be difficult to keep your mind from wandering to a very dark place. Worries about how fast your disease is progressing,…

“Is the MS drug news good for u?” my friend’s text asked. It was Wednesday morning, March 29. Genentech had just announced  that Ocrevus, the “First and only approved disease-modifying therapy for primary progressive form of multiple sclerosis (PPMS) – one of the most disabling forms of…

A couple of weeks ago I had a curious encounter with the friend of a friend. I live in a small town. In some ways we’re all at least neighbors. Huddled in a small group at the local grocery store, we were chatting about our experiences with the…

The past few months have not been fun. We lost my father-in-law, put our beloved cat down, and moved from our home to a townhouse that is too small and poorly built. With a low inventory of rental properties in our area, and…

The practice of collecting data about how we MS patients go about living our lives, and then using that data to improve our patient care, seems to be gathering steam. In the European Union a project called Real World Evidence Data, or RWE, is working outside of the…

When people ask me what I love, I usually respond, “God, my family, and St. Louis Cardinals baseball … in that order.” Other than the Razorbacks, Arkansas (my home state) doesn’t have much in the way of athletic bragging rights. Both when I was a kid and now,…

You probably talk about multiple sclerosis (MS) symptoms, drugs and therapies when you meet with your neurologist, but I’ll bet that most people don’t talk very much about working. Being able to work, and continuing to hold down a job, is important. I see concerns about this all…

I’ve spent a lot of time lately around people following special diets. They’re either voluntarily cutting carbs, counting calories, following a diet plan, or fasting, but not because they have a medical condition. Mostly they diet to feel better, lose some weight, or reset their metabolism. I wish them well, even as…

Harold Weiner, MD, believes in using probiotics to help treat multiple sclerosis. He is such a believer that he did a presentation on the subject — “Probiotics in Multiple Sclerosis” — at the just-concluded Americas for Treatment and Research in Multiple Sclerosis (ACTRIMS) 2017 Forum in Orlando. The event…

Does your MS fatigue and energy need a boost? I know mine does; having multiple sclerosis drains my battery very quickly. Add to that a terrible cold I had recently, and my fatigue has doubled, and my energy has left the building! While looking for a magic…

The three words are powerful. My mother speaks them into my spirit frequently. She tells me to “Just hold on.” My mother is a woman who has withstood many tragedies. Both my parents have. They’ve lost their children, cared for me as an ill child and they continue to…

There are many people with MS who miss out on easy access to care from multiple sclerosis specialists, and they often have few places to turn for trusted information, or to get their questions answered. There is a place where we can get both for free – the …

Oral multiple sclerosis meds appear, more and more, to be the first choice of patients who are just beginning to receive an MS treatment. A recent report by the independent marketing research firm Spherix Global Insights shows that oral disease-modifying therapies captured a significantly higher…

An MS patient who reads my column sent a personal message last week. It began: “Sorry about the secrecy. I’m in the closet! Seriously, I haven’t told many people about my RRMS diagnosis, for many reasons. I really don’t want my kids knowing. … I want to spare them that…

Loss of hearing symptoms such as tinnitus are not usually attributed to multiple sclerosis, but for those with MS who 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.

2017 has arrived. Welcome to a new year! First, I would like to say thanks for allowing me the opportunity to share my MS journey with you. Your comments, emails and words of encouragement are appreciated. 2016 was an eventful year, indeed. I have learned much about the disease…

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

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

  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…

“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…

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…

Life can be really strange and not always fathomable to someone like me who is not blessed with neither medical nor scientific qualifications. On a purely technical basis, I am just an ordinary guy. What I do know about diseases, illnesses and conditions – call them what you will –…

Continuing to live in your own home when you can no longer look after yourself is an ideal many people seek to aspire to – but it’s not easy. Outside help is often needed. Alex Camarillo is one perfect example of this. He is 35 years old, has severe…

The other day I received a very troubling direct message from someone on another Multiple Sclerosis website: “I was diagnosed with MS in 2004 but, foolishly, dismissed it. Other than bad spacisity [spasticity] and a few little episodes, I was relatively symptom free. That is until…