How Multiple Sclerosis Patients Can Take An Active Role In Expediting Research

The beginning of a new year is a chance to wipe the slate clean and begin a new journey filled with hope and possibility. I visualize that journey as climbing a majestic mountain that rises high above the ocean. With each passing mile I get closer to accomplishing another goal. When I finally reach the pinnacle I'll feel more alive, mindful of my glorious achievements while enjoying the magnificent view that envelops me.

Multiple Sclerosis

Each step I climb represents my personal goals. And one of those goals is to continue spreading awareness about living with Multiple Sclerosis.

Reaching the top of the mountain would mean that a cure has been discovered, finally putting an end to this horrible disease.

Will I reach the top in my lifetime? I'm not clairvoyant but I always hold hope in my heart.

That is why I take part in NARCOMS (North American Research Committee on Multiple Sclerosis), a bi-annual online patient registry where I answer questions about my life with MS. I feel good knowing that I'm part of a greater good, because my answers ultimately help to facilitate multi-center research about MS.

"NARCOMS, a project of the Consortium of MS Centers, is a patient registry that was founded in 1995 and contains patient-driven information on over 37,000 patients. Information from NARCOMS has enhanced research activities regarding demographics of MS as well as environmental factors involved in disease activity (vitamin D, smoking). "~June Halper, APN-C, CEO of CMSC, Executive Director of IOMSN, MSNICB

Anyone diagnosed with MS can sign up for this free, confidential registry. Like me, the information you provide will supply valuable information that expedites research and improves clinical care and quality of life issues for patients and families affected by MS.

Multiple Sclerosis

Questions such as demographics, disease history, quality of life, functionality, and relapse and symptom progression are a sample of what you'll be asked.

NARCOMS also publishes a quarterly magazine, NARCOMS Now (free to all NARCOMS participants),that features MS news and information about the registry. The Winter 2015 edition focuses on health and wellness and is filled with interesting information. I was fortunate to be interviewed for their Feature Focus story.

 Multiple Sclerosis

Check out the NARCOMS website and sign up for their registry. While you're there take a look at the NARCOMS Now page to find the latest MS news and information, and learn about NARCOMS MS apps and photo contests. Click the PLAY tab to give your brain a workout with their word puzzles.

If you want to learn more about the purpose and participation benefits of NARCOMS, here's Dr. Daniel Kantor interviewing Dr. Gary Cutter, Director, NARCOMS Data Coordinating Center.

I hope you'll join me on my journey to the top of the mountain!

We're All On The Same Team, Aren't We?

I recently wrote a post about my journey of diagnosis and how I first came to understand the importance of body, mind and soul and if the three are in alignment our bodies move closer to better health.

team

In the world of Multiple Sclerosis there are four classifications of MS, and the "type" I have is the "best" kind. My issues are mostly invisible to the naked eye, but every day is still a struggle that I still have to manage as best as I can.

Others in the MS community don't have invisible MS.Their issues run the gamut from inability to walk or speak clearly to cognitive dysfunction and/or bowel and bladder issues. Some are forced to retire, and others rarely leave home. Their world is more difficult than mine.(You can read more about MS here on the National Multiple Sclerosis Society website.)

When I began to blog about MS I didn't know how I'd write about our disease, wondering how to be all-inclusive about every type.

I always try to do my best by keeping the entire community in mind. But as any writer knows I have to WRITE WHAT I KNOW.

team

It's impossible to be all things to all people. So I took the plunge and began following the old adage. I wrote about my life experiences, hoping that what I write will resonate with readers. Then I remembered a quote by Winston Churchill:

team

But hell hath no fury like a reader who feels scorned. After my post appeared about the benefit of the mind/body connection, I received an angry comment that went something like this:

"I am SO happy HER world works. It depends on her severity, but it doesn't sound too extreme. I'm strong and push through the pains in my world. But I can't work and sometimes I can't walk. Maybe your words will help someone. Except your sort of sounding like the cheerleader, all fit, perfect figure, great husband, kids, works out, has a wonderful job and is blessed her MS is under control from one MS medication. SERIOUSLY? Nice try drug company to use her for your prop. How much did you pay her? Does she really have MS? Yep, I've got some issues with people's happy "Oh look at me!" stories."

I was stunned and felt a little hurt. But after reading it over again (and again) I felt this person's anger. It wasn't necessarily toward me, but toward MS and her situation. Being unable to walk or work is a terrible burden to bear.

In my reply I told her that we are part of a great community and need to embrace, support and empower each other. We are on the same team and need to recognize the value in that.

team

In writing to her it reminded me of the women I've met in my online blogging community, the midlife bloggers who have become my good friends. We embrace, support and empower each other. That sense of community is powerful and has lifted me up for the past two years.

I also adore my MS community. The people I've met empower me with their constant strength and kindness, helping me to become a stronger person every day.

My hope is that the angry reader will realize that being part of a caring community is healthier than wallowing in anger. As with everything in life, being part of a team, any loving team, is better for us. Don't you agree?

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