Category Archives: disabilities

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

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Testimony

My chapter, Ohio Buckeye, of the National MS Society asked me to give a testimony on an Ohio House Bill 332 up for approval. The HB would provide up to $1,000 tax credit for modifications to an existing home to make it more accessible and “visitable.” And on a new or home being built, up to $2,500 tax credit. The NMSS is supporting the bill. Here is my testimony given January 2012 to the House Ways and Means Committee.

Thank you Chairman Beck and members of the House Ways and Means Committee for allowing me to come before you today to testify on HB 332.
My name is Elizabeth Thompson. I’m an MS activist and ambassador for the Ohio Buckeye Chapter of the National Multiple Sclerosis (MS) Society.

I’ve had MS since I was 22 and I’m 60 now. I worked outside the home until 2004 when at 53 I went on Social Security Disability due to my MS fatigue and inability to walk any distance.

HB 332 would assist many people with disabilities and older Americans in making their homes more accessible and safer. As you all know, falls by this population are all too common. ER visits, surgeries and physical therapy typically follow. This increases the cost of healthcare and can limit people’s independence.

In the last six years, I’ve fallen more times than I can count. A fall down nine basement steps had the squad transporting me to ER with a broken arm and dislocated shoulder. Last August, the squad transported me again with a head injury requiring stitches.

In between those two falls, I broke both wrists, at different times, both requiring a visit to ER, surgery and physical therapy. The Ohio Buckeye Chapter generously provided home health care each time to assist me while my husband was at work.

In a personal effort to improve my safety and remain ambulatory, since 2004 I have purchased two walkers, a manual wheelchair and various canes. Insurance made it possible for me to have a power chair that is valuable inside and outside to maintain my safe mobility and independence.

Also, to improve accessibility of our home, my husband built a ramp into our home through the garage, steps with a handrail to our patio and added a second handrail on our basement steps. I’m thankful he has the ability to make these modifications or we would have had to hire someone to make these improvements.

While all these tools have helped considerably, our home was built in 1964. The hallways are 36” wide and doorways 30” wide. My power chair is 29” wide and 47” deep (front to back.)  Riding my chair in our home is tight and making turns from the hallway into an interior door difficult. To make it possible, the door to the room I use as an office has been removed, yet it is still a challenge. Our bathrooms are still not accessible for using my power chair and very tight with my walker.

People with MS have various issues including visual, balance, numbness, fatigue and cognitive. Most of these can affect mobility. Similar problems often face older Americans.

I urge you to seriously consider the value of HB 332 to help many Ohioans live safer and have the ability to remain in their homes.

Thank you for your time and I’d be happy to answer any questions you might have.

Sincerely,

Elizabeth Thompson

 

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.

American Dream Video Contest

American Dream Video Contest.

Autism Speaks Blog

Check out this blog to learn more about Autism:  http://blog.autismspeaks.org/2010/05/29/itow_procor/

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!