Tag Archives: MS

People with MS thrive with help, wait for cure

People with MS thrive with help, wait for cure
By                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                     LIZ THOMPSON                                                                                        
ThisWeek News
Tuesday March 26, 2013 1:03 PM

My ankle turned and I landed in the bushes. Four people were there in seconds to help. True, I was outside our church but this has been my experience for as long as I can remember. I fall, people help. Embarrassment happens but I move on.

About 12 years ago, I wrote a column about falling in a crosswalk in downtown Columbus. The editor titled it The people of Columbus are still picking me up. This is true literally and figuratively. Strangers helped me in that crosswalk the same as my friends did last month. I’m convinced people are kindhearted and when they are able, choose to help others.

Often people aren’t sure when and how to help. These strangers and friends who helped me followed their instincts. Our attitude is one thing we can control and makes a difference in tense situations. I’m always appreciative of any help that comes my way making it easier on everyone.

Most of those I know with Multiple Sclerosis, like me, have led active and independent lives.

An MS diagnosis can knock the breath out of us and we wonder, “What’s next?” We eventually learn it’s time to ask for help whether it be information or a helping hand. In time we realize life goes on and MS isn’t always the first topic in conversation. Adapt becomes our middle name and we begin to see how to do most everything we choose but in a different way. Some things must be shelved as not worthy of our time, too risky or labor intensive.

When I was diagnosed with MS in 1987, there were no what we call “disease modifying” drugs proven to slow the progression of this neurological disease. There was no Internet and very few books published on living with the disease. So I muddled through like thousands of others had for many years.

Today someone newly diagnosed could easily become overwhelmed with information and his or her “what’s next?” takes on new meaning. We learn to weed out what works for us and learn how to get through in our own way; on our own path because each person’s MS is different. Each person is different.

James Rhodes, 43, of Powell, is a state-certified referee for high school basketball and football games. He was an amateur bodybuilder preparing for a 2005 body-building competition in New York when he experienced his first symptoms. Debilitating fatigue struck and next he suffered a stroke. This led to a lot of tests and his official diagnosis of MS. He had four months of rehabilitation.

Did he fall down and not want to get up? Or did he get up and let his friends and family help him and stand by him? He is so grateful for the latter experience. The support of his family, especially his wife, Kymberly, who has been by his side through the good and the bad times, has made all his struggles bearable.

He continues his role as a referee but took a step down in responsibilities at his workplace. He and his wife have five children between them and take each day at a time.

Thankfully, people like James and I have the National MS Society. Because of valuable research, there are now eight ADA-approved MS drugs with more on the horizon every year. Research is costly. MS is a chronic, often disabling and unpredictable disease of the central nervous system with no known cause or cure. Theory is if we find a cause, the cure would follow.

It’s not known why Ohio has a high prevalence rate of MS but the MS Society is finding out by funding more than $6.3 million in critical MS research at Case Western Reserve University, Cleveland Clinic Foundation and the Ohio State University. Progress has been made toward finding ways to improve symptoms and restore function.

The more than 20,000 Ohioans we know have MS have a voice speaking for them with the Ohio Buckeye Chapter and two other Ohio chapters of the National MS Society. I volunteer with them to help give a face to MS and to speak for those who cannot. Volunteers and staff are busy year-round planning activities, contacting legislators, advocating for those of us with MS.

March is MS Awareness Month. There are at least 20,000 stories in Ohio that I could tell about living with MS. That number increases when including their families, friends and coworkers. MS affects them all.

For more information, call 1-800-FIGHTMS or go to MSohiobuckeye.org

March is MS Awareness Week or Month

Every year, the National Multiple Sclerosis Society sets aside a week in the month of March to raise awareness of MS. Why do this? Facts will tell you that every hour someone is diagnosed with MS. Every hour. And during that same hour, at least one more person is affected–a spouse, child of that person, coworkers, friends.

It’s not an easy diagnosis to hear because it is so unpredictable. Some people have mild to moderate symptoms while others, fewer than most, have severe symptoms leading to a complete change in lifestyle.

Take a moment and explore the National MS Website if you know someone with MS or want to know more.

I am proud to say that in Ohio, “my” state, legislation was passed in  2006 to make the entire month of March designated for MS Awareness. Representative Kenny Yuko–who also lives with the diagnosis of MS– and Senator Teresa Fedor introduced the bill

Life goes on after a diagnosis of MS but it changes. MS can stop you from moving but information is power. Do whatever you can to slow the progression of this neurological disease until they find a cause and a cure.

When I was diagnosed in 1987, with symptoms dating back to 1973, there were no medications for MS, no Internet for me to explore and no celebrities touting their books about MS. All that changed in the early 90s and now there are 4 disease modifying drugs, in the form of injections, that have proven to slow the progression of MS: Betaseron came first and Avonex, Rebif, and Copaxone followed. The pill form has been developed and more are in the development stage currently.

Personally, I was on Avonex for 5  years and Rebif for 1 1/2 years. These are Interferons and caused flu-like symptoms that never faded for me. In April 2007, I began taking daily injections of Copaxone and am thankful I never feel sick and I feel in control, as much as possible, of this disease. I’m doing all I can to stay active by stretching, walking safely using whatever I need to do that–a cane, walker or the steady arm of a family member or friend–taking my injections and learning all I can how to manage symptoms such as spasms, numbness and fatigue.

The National MS Society encourages everyone to find which medicine works for them and stay on it! Good advice.

We must cling to hope that one day this disease will only be a memory. Meanwhile, we learn and adapt our lifestyles to let this disease be a part of our lives but not the master of our lives.

66 is aged?

Since I’m a writer, I do research. The Internet is one tool but I still use the old-fashioned method of talking to others in person and on the phone.

I was writing an article for Demand Studios  to answer the question, “What happens to my Social Security disability payment when I reach retirement age?” Since I’m on SSD, I had a general knowledge that it “became” retirement. I took the assignment to learn the facts.

Research on the website, www.ssa.gov didn’t reveal any hard facts on this subject and I called.

I have heard horror stories about dealing with SSD and the people managing it but I’m here to tell you my experience has been consistently positive. The woman I spoke with gave me a clear answer and then we both laughed – outright  chuckling – together.

She said, “Once a person on SSD reaches retirement age, we no longer consider them disabled but aged.”

I repeated her words back to her confirming I heard correctly and added, “So when I’m 66, my MS will be gone, according to the government? I will just be aged?”

“Well, that’s what the government says about someone on SSD. When they reach retirement age, we consider them only aged, not disabled. Nothing changes in  your payments and you will get a letter explaining,” she replied.

I eagerly await 66 so I can celebrate no longer being disabled. But I know better and MS is here to stay. This must be proof again that the government truly is not capable of running healthcare.

I hope you are smiling!

MS Awareness Day 2010

Help further Ohio’s fight against MS

By LIZ THOMPSON, DAY BY DAY
Published: Tuesday, March 23, 2010 9:31 AM EDT
Suburban News Publications
Too many tumbles, sore muscles, bruises, scrapes and broken bones. All this happens to me and I never dreamt of being in the Olympics.

I’ve never been graceful, even as a girl, but active; always walking, hiking, biking, skating, swimming, camping or anything outdoors.

Since multiple sclerosis came fully into my life in 1987, most of those activities are in the past. Yes, I can walk; but using a cane, walker, or the aid of a friend’s arm. In the last three weeks, I have fallen — twice forward and once backward. Did I trip? Maybe. It all happens so fast that the cause is no longer an issue; the question is, can I get back up without major injury?

It has to stop. Next time I might not get up.

MS has a way of stopping people from moving. But I refuse to let it keep me from living. As an ambassador for the Ohio Buckeye Chapter of the National MS Society, I encourage others with MS to keep moving — safely. I better start living my advice before I have to eat my words.

March is MS Awareness Month in Ohio. Today, March 24 is MS Advocacy Day, and I will join other volunteers representing the Ohio Buckeye Chapter at the Riffe Center where we will talk with our legislators. We want them to see the face of MS and learn how it affects the 20,000-plus people in Ohio. Children as young as 3 are being diagnosed with MS.

We will ask Ohio legislators not to dissolve the Medicaid Buy In for Workers with Disability Advisory Board. There are more than 3,000 Ohioans in the program and the work has just begun. This board is 100 percent voluntary and costs the state zero dollars. People with MS need this voice.

Imagine you are in a nursing home where you may need therapy, medical transportation, oxygen, over-the-counter medicine, a wheelchair or repairs. These are ancillary services Medicaid once paid for. With a law passed in 2009, the nursing home has to absorb these costs.

Government thinks it will force nursing homes to cut costs. This law did not change nursing home residents’ rights to these services.

Facts tell us Ohio has a high prevalence rate of MS. The National MS Society funds more than $8.7 million in critical MS research at Case Western Reserve University, Cleveland Clinic Foundation and Ohio State University. Since the MS Society was founded in 1946, it has spent more than $700 million on MS-related research projects.

Since 1993, four disease modifying treatments are in use as a result of this research. We have more potential therapies in the pipeline than at any other time in history.

I have been blessed in meeting and getting to know many of the behind-the-scenes people in our Ohio Chapter and the national office. Everyone I have the pleasure to know is on a mission to end MS, to the point their jobs will become obsolete. I firmly believe this is their goal.

Thank you Tony, Holly, April, Matt, Guyla, Kincaid, Ana, Jennifer, Wendy, David, Greg, Janet, Nancy, Joyce, Renee and everyone for helping us fight the battle.

You can help by sponsoring one of the fundraising events. For more information, call 1-800-344-4867 or visit MSohiobuckeye.org.

Liz Thompson is a former SNP reporter and Grove City resident. She can be reached at LizT@columbus.rr.com.

March is MS Awareness Month in Ohio

PRESS RELEASE

Look for the link below which will be active February 11th and submit your story

Beginning March 9 during Multiple Sclerosis Awareness Month and culminating ten weeks later in New York City, We Keep Moving will seek to unite millions of people affected by multiple sclerosis through a series of online video stories that chronicle the lives of real people across the country living with MS. 

For every person living with MS there is a compelling story about how they move forward with their lives, given the many challenges raised by a chronic illness whose symptoms can come and go without warning and range from numbness and tingling to loss of vision and paralysis. The National Multiple Sclerosis Society is launching We Keep Moving – a ten-week journey across America to capture these unique stories and perspectives – challenges, triumphs and everything in between.

The We Keep Moving  Web site and videos are supported in part by Novartis Pharmaceuticals Corporation.

Taking the public on a road trip across America

People affected by MS – from those living with the disease, to caregivers, to those who raise funds for the cause – have submitted their own stories at www.wekeepmoving.org for consideration. A committee that includes people living with MS has reviewed these submissions to select the finalists.