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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

 

My Story

National Multiple Sclerosis Society,Ohio Buckeye Chapter

Established in 1953, the Chapter is an important part of a nationwide network that advances the Society’s mission to achieve a world free of multiple sclerosis. We provide quality programs and services to over 10,000 Ohioans living with MS and their families in a 38-county area. Areas served include the Akron, Cleveland, Columbus and Youngstown metropolitan areas as well as all Central and Eastern Ohio counties. Our two offices are located in Independence and Worthington.  

Northeast Ohio
6155 Rockside Rd., Suite 202
Independence, OH 44131
800.344.4867

Central & Southeast Ohio
651G Lakeview Plaza Blvd.
Worthington, OH 43085
800.344.4867

 

National Multiple Sclerosis Society Ohio Buckeye Chapter Diagnosed with MS in 1987

Living with MS for 14 years prior to diagnosis

This is my story…

Elizabeth Thompson

What is your connection to multiple sclerosis?

I have multiple sclerosis. I am a volunteer for the National MS Society.

How has MS impacted your life?

The diagnosis of MS in 1987 gave a name to the strange things happening to me since at least 1973. Numbness, poor balance, repeated falls, vision problems and fatigue are the main issues I deal with. I was living with MS long before there was any medication proven to slow the progression of the disease. Research has now allowed four or five medications on the market for us with MS. I have used three of them settling on Copaxone almost four years ago. I even became an advocate for Teva Neuroscience, makers of Copaxone, so I could help others with MS understand the value of taking daily injections to stave off the progression of this unpredictable disease. I now use a cane, walker, or power chair, depending on the situation. In 2004, I went on Social Security Disability after working all my adult life. I was 54 at the time. It was a tough decision but now I can better manage my disease and advocate for others who have no voice in the matters that relate to us. MS slowed me down and took away some simple pleasures such as taking a walk outside or any physical activity. But I have learned to adapt and adjust. I refuse to let MS make me stop moving or living a full life.

Are you receiving or have received assistance from any services or programs?

I have received assistance from Transportation Services (COTA, Metro RTS, SCAT).

Have you experienced issues with any services or programs? If so, which ones?

I have experienced issues with caregiving, employment, home care services, medications and prescriptions, transportation, and Social Security.

Please tell us about the issue.

The Ohio Buckeye Chapter of the National Multiple Sclerosis Society provided caregiving for me two times. After two separate falls where I broke a wrist and had surgery, they provided assistance for me at home. It was wonderful and I am very grateful. Prior to going on Social Security Disability, some employers had little patience for the limitations that MS caused.

I learned to self-advocate but in the late 90s, one employer was going to let me go but I was able to leave on my own terms. The issues with medication were finding the right MS medication for me that didn’t make me sick. I have done that but now when my husband retires in April I will no longer have his insurance and will have to deal with the donut hole costs using Medicare. I am in the process of setting up assistance through Teva but nothing is final at this time.

What else should we know about your unique story?

As a result of going deaf since childhood, non-MS related, and being deaf by 50 and receiving a cochlear implant, I learned to self-advocate. When I was diagnosed with MS, these experiences made my ability to advocate and deal with MS a bit easier since it was familiar. So with the work world, I was deaf and had MS: not a great combination but just prior to my first implant, I was a reporter for Suburban News Publications. They took a chance on me, worked with me and I succeeded. I like to think that others can do the same in their fields of interest if we continue to bring awareness to the public and teach people to advocate for themselves.

Every person with MS has a unique story because MS is different for each person. I have been blessed with a supportive family, church and friends. Many don’t have even part of that. My story is unique because of that. I am a writer and advocate for people with MS every way I can hoping to reach the public with knowledge of MS and how it affects the lives of those living with it.

Thank you for listening to my story!

JOIN THE MOVEMENT

®       http://www.MSohiobuckeye.org • 800.344.4867

There’s more to those with multiple sclerosis

By LIZ THOMPSON
Published: Wednesday, March 30, 2011 5:40 PM EDT
Suburban News Publications

Every time my legs go numb or I stumble when I walk, I am reminded I have multiple sclerosis.

My body reminds me daily that the messages to my brain are disrupted.

MS is a central nervous system disease with no known cause or cure. Symptoms range from numbness, fatigue, vision loss and pain to the worst-case scenario of paralysis.

March is MS Awareness Month. The estimated 20,000 adult Ohioans and 400,000 Americans do not need a specific month to be aware they have MS. The public does need to understand what a diagnosis of MS can mean to a person and everyone in his or her lives.

The number is growing as one person an hour is diagnosed with MS. Between 8,000-10,000 children younger than 18 have MS.

Ohio is the only state that recognizes the entire month of March for MS Awareness. This is the five-year anniversary of the legislation passed unanimously to recognize the entire month. Thanks to State Rep. Kenny Yuko (D-7th District), also living with MS, who introduced House Bill 379.

On March 22, members from all around Ohio met with legislators at the Statehouse to discuss issues related to people with MS. Planning for the Walk MS on April 16 is in full swing. My team, Thompson’s Trekkers is one of many teams raising funds for the National MS Society.

Fundraising is mandatory to provide resources for people with MS and to support research. Ohio State University and the Cleveland Clinic each received a grant last year for researching MS.

Advocating person by person is an ongoing event.

The word advocate has many synonyms, including supporter, promoter, sponsor, believer, campaigner and activist. When we present ourselves in an honest, positive way in public or in private, we become advocates.

While I move through a store using a provided scooter, for which I am thankful, I realize I need more space than a person with a regular shopping cart. I smile, wait patiently as others move about and say, “Excuse me,” and “Thank you,” when people either need to move or have accommodated me in some way. If someone offers to get something from the shelf for me, I let them!

Many people do not know how to react to someone using a cane, walker or wheelchair. This is true, especially if you “look normal,” and as many with MS have heard, “But you look fine.” We are fine — we just have MS. So I teach and help others understand.

There is more to people with MS than their disease. By sharing, laughing, helping any way we can, moving the best we can and taking care of ourselves so we can do things that make life worth living, we are advocating and raising awareness of MS.

Then people will look past the cane, walker or wheelchair, the slurred speech or wobbly gait, and see the person first. Then we have accomplished true MS awareness and life goes on as it does every year — only better.

For more information about MS or events like the Walk MS, contact the Ohio Buckeye Chapter of the National MS Society at 800-344-4867 or msohiobuckeye.org.

Liz Thompson is a freelance writer and former SNP reporter who lives in Grove City with her husband, Bob.

Why Orange?

Orange is the color selected by the National MS Society for its signature color. It creates urgency and stands out in a world where so many other colors represent so many other things. Through research, the National MS Society has learned that orange is optimistic, contemporary, and cutting edge. It’s also a color that people with MS find highly readable and be become a symbol for MS around the world.

This makes perfect sense to me. But, on a personal note, it’s my grandson Andrew’s favorite color! (smile)

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.

MS Ohio Advocacy

The Ohio Buckeye Chapter of the National MS Society has set up a Facebook page. Go to the link and select “Like.”

http://www.facebook.com/MSOhioAdvocacy?ref=ts&v=wall

Certified hearing dog!

Toby is now officially my Certified Hearing Dog! Pilot/Hearing Dogs tested him and after months of training, he passed like a champ!