Tag Archives: Multiple Sclerosis

MS lessons learned on unwanted anniversary

When a child turns 18, that child is an adult, right? On his or her own. That’s the deal. Independence at eighteen.

November 14, 2015, marked my 18 years. Time for my freedom. That’s how it’s supposed to be.

Only one small thing: Freedom is not on my horizon. Even though I’m fully willing to fly away, it’s like Multiple Sclerosis is my guardian and it’s not letting me go.


It’s holding me captive, and I don’t know how much more I can stand, literally. It has taken so much from me ever since I was diagnosed in 1997. I no long walk, work or drive, but I’ve tried so hard to break free.

In the Omni Fort Worth Hotel lobby for the National MS Society Leadership Conference.
In the Omni Fort Worth Hotel lobby for the National MS Society Leadership Conference.

Within the past 18 years, I’ve taken five different disease-modifying medications and have received treatment from four neurologists, four occupational therapists and seven physical therapists. All this, plus I underwent two rounds of plasmapheresis and one gamma knife surgery as well as used an ankle foot orthosis, three different canes, two walkers and at least six motorized mobility devices.

But who’s counting? After all, none of these numbers matter to MS. It’s only focused on one thing: Me.

Well, me and the more than 500,000 Americans who are living with it.

I can’t break free, but I haven’t surrendered myself or my hope. MS will not get the best of me!

A recent trip with Dan to Fort Worth, Texas, reminded me that we aren’t in this fight alone. There are thousands of scientists and millions of dollars invested in cutting-edge research that could turn the key to unlock our independence.

We traveled there for the National Multiple Sclerosis Society’s 2015 MS Leadership Conference. Nearly 1,000 people from cities throughout the United States attended and participated in this empowering event focused on wellness, research, development and advocacy.

Of all that we learned, there was one publication we received that summed up the progress of research supported through the NMSS. It stated that:

  • The MS treatment pipeline has significantly expanded – there are now more potential treatments in trials than any other time in history and several new approved treatment options available.
  • The promise of myelin repair is now reality – several potential myelin repair treatments have recently entered trials.
  • Our understanding of the causes of MS has advanced – nearly 200 genetic variants have been identified and several risk factors confirmed.

So, I’ve marked my unwanted anniversary of 18 years living with MS, and its relentless badgering of my body indicates it isn’t going to give me my freedom as quickly as I’d like.

But maybe it isn’t the disease’s call to make. With the help of the National MS Society and the cutting-edge research it supports, my independence day is closer than we all realize.

And MS won’t have a choice because, as we all celebrated at the MS conference, together we are stronger.

NMSS President and CEO Cyndi Zagieboylo offers encouraging words to conclude one of the conference sessions.
NMSS President and CEO Cyndi Zagieboylo offers encouraging words to conclude one of the conference sessions.

Our 6 habits for marriage, MS and happily ever after

I guess this saying is true: better late than never. I’m only 6 days late. It’s less than a week, which really isn’t too bad. Of course, I cut myself some slack because I have Multiple Sclerosis, and late, well, that is how some of us MS-ers roll. For real, aren’t we ALL late at least…Continue Reading

Maintaining a social life and ADA accommodations

We felt bad and apologized when we asked other people to take care of things we have do each time we attend a public event. Welcome, friends. Our life can be such an inconvenience. Not that the people patiently handling our requests weren’t fully willing to help us. We just regretted having to ask them…Continue Reading

Manage MS fatigue on your own terms

According to Healthline.com, “Unexplained fatigue and weakness affect about 80 percent of people in the early stages of MS.” We’re tired of hearing about it. Sure, at the core we are among the aforementioned 80 percent dealing with high levels of low energy, exhaustion and weakness. It is easy to say that MS is the…Continue Reading

Meagan Freeman guest post

We are grateful to feature a guest post from Meagan Freeman, RN, FNP-BC. Meagan is a Nurse Practitioner and mother living with Multiple Sclerosis. We encourage you to read more of her writing at Motherhood, and Other Traumatic Experiences. Metamorphosis All is temporary, including darkness. Butterflies are a wonderful example of this. Look at these…Continue Reading