We all have taken advice or read about how to manage our multiple sclerosis (MS) symptoms. And we can share with our doctors, spouses, children, or friends about our experiences. But a far better emotional therapy is empathizing with a fellow MS warrior. People can’t understand living with MS…
relationships
Organizations Join Forces to Launch New Adventure Program for Young MS Patients It seems we too often ignore the needs of younger people who have MS. (I’ve written a couple of columns about this.) This program isn’t a medical approach, but it may serve some other…
Be My Wife
Let me introduce you to my wife, Jane, by cheekily lifting the title “Be My Wife” from possibly the only accessible track off Bowie’s seminal ’70s album, “Low.” Through these weekly columns I’ve mentioned her often enough, but I’ve never formally introduced her. Mea culpa. I didn’t have…
Doctor Connections
Have you ever been touched by the actions of one of your doctors? I hope we all have experienced special moments with our care providers because these times break down the authoritarian nature of medicine and allow us to interact as people rather than patients. A heartwarming moment took…
Shining Through Boundaries
I spent the majority of my life as a people pleaser. From the time I was young, I equivocated “yes” with likability; please and be pleased. As the years passed, compromising my own needs became second to meeting those of others. While I genuinely enjoy…
Teach Your Children Well
As an advocate for the multiple sclerosis community, people often ask me what it’s like being a mother while living with MS. My quick response is, “Joyous!” But I understand the questioner is looking for something more. They want to know how to…
Into the Woods
Well, I’m usually fairly upbeat, but this time, it’s going to be beyond me. We’ve all had relapses — I think I’m in the fitting cliché of being on my last legs. I can, on a good day, transfer on my own from the bed to my trusty…
“What is wrong with you?” I have been asked this question numerous times by significant people in my life. The most recent was a few days ago. The question usually occurs during the times I have an emotional “meltdown.” Whenever I hear it, I get defensive, thinking that I…
I write in an effort to offer enlightenment. Yet, so often I find I am the one to receive an education. Such was the case with my column on relationships and MS — or more pointedly, the feedback I received. While MS has…
Intimacy is defined as close familiarity and/or friendship. It can also describe an act. We have intimate relationships with the people in our lives. Those intimate relationships strengthen us as we travel the arduous path of chronic illness. This week is Valentine’s week, so I thought I’d discuss the…
The stigma of multiple sclerosis can increase patients’ risk of depression, but a socially supportive environment, a sense of belonging and a sense of independence can help ease the problem, a study Penn State University study reports. Researchers have…
Navigating Relationships with MS
Relationships are work. When you add in a chronic, progressive disease, the work becomes exponential. This is not to say work is a bad thing, as we reap immense rewards when we put effort into anything. Rather, anything worth doing…
We endured another devastating loss this week. My beloved sister-in-law, a cancer survivor whom I affectionately called sister, passed away. Although we knew her disease was terminal, she passed away unexpectedly in her sleep. Death is never easy, and no matter how much we try, we cannot entirely prepare…
My life has been in limbo for several months and it’s been a dark and scary place to be. One quickly learns that life can be unpredictable when living with multiple sclerosis. Each day can bring different challenges and life will never be…
Lots of columns and articles look at issues surrounding the topics of depression and mental health-related disorders. I have referenced them in various columns. What saddens me is the stigma surrounding depression that prevails in our society. There are many who struggle with depression and other forms of…
In last week’s column, I shared what I called my ABCs of gratitude. In the past few days, I’ve had to revisit my list several times. This was a distressing week. Even more perplexing is my inability to determine the exact cause of my anguish. I could not…
This year, I wrote several articles about gut health because, in addition to MS, that’s what I’m currently battling. Writing is cathartic, so when an issue hits close to home, pouring words onto paper … er, a laptop, is a godsend. It’s like having a…
My journey in life has allowed me to connect with and meet people from all over the world. For this, I am blessed. I’ve met many diagnosed with MS and other chronic illnesses. All of our experiences are different and we have varying levels of support. A little while…
Holding ‘Space’ for Others
When a friend or loved one is going through a tough time, it’s hard to know how best to help. Do you help carry the burden? Would it be better to offer support from a distance and give the person space? Life can be hard and awkward and…
Face it: Understanding MS isn’t easy — even if you have it. There’s no known cause, no cure, no predictability in progression, and while there are common symptoms and manifestations, they affect everyone differently. Some symptoms come and go with no rhyme or reason and…
A national survey in the U.S. revealed that 98% of women newly diagnosed with multiple sclerosis struggle to discuss important personal concerns with their healthcare team.
Multiple sclerosis (MS) can have severe implications on the lives of European women with the disease, finds a new report, affecting their education, their careers and their relationships. This disproportionate burden of MS in women versus men was the focus of a study, “The Socioeconomic Impact of…
Friendships and MS
Maintaining friendships can be challenging for those with a chronic illness. It may be difficult for friends to understand the changes that take place because of MS. Some changes are quite sudden and visible, others sneak in slowly. Increased fatigue or pain, I find, are most difficult for friends…
There’s a difference between being lucky and being blessed. I learned that difference in 1992, after giving birth to our son. Once the doctors counted 10 toes, 10 fingers and we heard the baby’s first cry, I remarked to my husband how lucky we were.
I had always envisioned that I would be an active and healthy grandparent when the time came — not one with a disability. I was diagnosed with primary progressive multiple sclerosis (PPMS) in the summer of 2010, which also happened to be the same year my first grandchild…
“What else is going on?” Matt, our family doctor of more than 15 years, asked. It was at the end of a mid-August appointment, one I’d made due to pain in my right shoulder, elbow, and hand. I wasn’t sure if it was related to MS…
Reading some social media posts the other day, I found myself humming a line from a late 1960s Arlo Guthrie song: “I don’t want a pickle. Just want to ride on my motor-sickle.” I didn’t think it was possible for someone with MS to ride a “motor-sickle.” It…
“Are you doing ok?” It’s one of those questions we all get. And it’s one that most of us don’t like to answer. How do you respond when someone asks you that question? #1 You can say “Yes, I’m fine, thanks,” even if you’re not OK, and be…
In case you missed them, here are some news stories that appeared in MS News Today that caught my eye over the past week: Ocrevus Is Popular Among Neurologists, but Insurance Is a Growing Concern, Report Concludes Some great marketing and PR efforts gave Ocrevus a…
GeneFo, an online multiple sclerosis (MS) community that offers support, advice and educational resources to patients, will conduct a free webinar July 26 for those interested in knowing more about how MS affects sex and intimacy. The webinar, hosted by renowned MS expert Dr. Tuppy Owens, follows a GeneFo survey showing that sex…