Category Archives: Columns

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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Gift of life

Want to organize a parade in Grove City? Talk to volunteer Andy Furr.  Ever heard of Genetic Alpha 1 Anytripsin Defect? Andy can tell you about it.

Maybe you want to know what his gift of life entails or what the 127 liver functions are? That’s right, Andy is your man.

In 2008, after two years of severe illness, including 37 hospital visits in a three-month span, at one time on 48 pills a day and a misdiagnosis of Cirrhosis of the liver, Andy received a second chance when he received a liver transplant.

His genetic defect is rare and more research is happening but that explains the misdiagnosis. Because of that, though, he transferred between hospitals, was over medicated, had bouts of dementia, combativeness he doesn’t remember, and the genetic defect was not discovered until after his transplant.

When he landed at the Cleveland Clinic (CCF) in February 2008, his kidneys were almost shut down and he was in renal failure. February 14, three days after his 43rd birthday, he was on the organ recipient waiting list. “I was given a timeline of three weeks to start dialysis but with a one in 500 chance dialysis would help,” Andy recalled. He headed home to Grove City.

“February 21, at 11:34 p.m., the phone rang with news of a liver donor.” His life changed rapidly.

A snowstorm hit Ohio that night and Medflight could not take him to Cleveland. “They only have 14 hours to transplant a liver. We had our own plan. My sister, Teresa Furr, watched the kids, my nephew, Jim Schreck, took us to Powell to get my brother-in-law, Jim Mink (who would drive them to CCF.)”

Often “the best laid plans,” have a hitch.  Jim was sick and couldn’t be around Andy. Jim’s wife, Roxanne, drove them. “She was afraid to drive in the snow but took five hours to get there. It was an amazing ride. She was calm and did a great job.”

Andy, emotionally and physically drained, rested in the back seat. “Spiritually I was great and prepared for whatever the outcome, hoping for the best.”

February 22nd he got his new liver and woke up Sunday, February 24th to learn the surgery was successful.

These two years were painful for this construction worker, husband to Mary and father to Christopher, 16; Joshua, 17; and Rachel, 14.  His Christian faith in God and support of family and friends carried him.

Today he wonders how he had time to work. As a volunteer for LifeLine of Ohio to promote organ and tissue donation, he talks to high school students; participates in Live on Ride on his motorcycle; talks to Rotary clubs, at health fairs or whenever he has a chance to tell his story.

 “One time, a boy asked if he could see my scar and I showed him,” Andy said chuckling. When he gave a talk to operating room staff at Riverside Hospital, something unique happened.  “That was interesting because one woman, a volunteer with Lifeline whose daughter was an organ donor, was there presenting her story of donation. It was inspiring to hear the other side of what the gift of life is about.”

One thing is clear; he’s not wasting time while giving back to his community.

I am only one

“I am only one, but I am one. I can’t do everything, but I can do something. The something I ought to do, I can do. And by the grace of God, I will.” Edward Everett Hale, American Clergyman and writer 1822-1909

This quote was in Sally Myer’s memorial service program last month. I grew up around the corner from Sally and her late husband, Bill, and their two sons, Scott and Mark, in Westerville in the 50s and 60s. People like Sally and Bill were constants in my life.

I read about a woman who was employed in her adult life as a housekeeper in the White House. Each day she cleaned the Oval Office, she knelt and prayed for the president.

A small thing? Time wise, yes, but powerful .  

One person, one prayer, something each of us can do. Maybe not in school any longer, but silent prayers are heard as well.

We all need kindness. Often the simplest act can make our day and these are typically done by one person. Someone opens the door for us, and smiles. A neighbor leans over the fence with a bag of red tomatoes (and probably zucchini!) from their garden.  Somebody walking down the street replaces windblown garbage can lids. A friend calls to say hello. We receive a letter from our grandchild.

It doesn’t take much to make a person’s day a little brighter.

I always believed God let me become deaf for a reason.  He allowed my two cochlear implants to restore my ability to hear clearly for that same reason: To enable me to listen and show His love one person at a time.

It was a joy to be able to offer to make calls to help locate classmates from our Westerville (South) High School 1969 graduating class. We are celebrating our 40th reunion Labor Day weekend. Nearly 100 classmates’ information is elusive, but we have found many of the 390-plus graduates. We search the Internet; ask our mothers what they know – always a great resource – and our friends.

When I find someone, I get a real kick from hearing what they are doing today, where they are living, how many grandchildren they have, and if they can attend the reunion. These conversations give me a chance to be what many of us need – a listening ear.  Responses range from, “Will anyone remember me?” to “Sign me up!” As you might imagine, we have scattered like the wind. Yet many have remained in or near their hometown, or returned, like me.

Reading the quote above, I know I can’t do everything – and don’t really want to – but it’s not all about me. No matter how small, or seemingly insignificant, I believe God is the orchestrator and someday it will all make sense.

Meanwhile, during these turbulent times in our country, each of us can do something. One day we will learn how the dots are connected and see the whole picture.