MS changes lives, families

Day by day

MS changes  lives, families
By LIZ THOMPSON
THISWEEKNEWS.COM
Tuesday March 18, 2014

Tim and Tyler Heaton, 19, of Westerville, know firsthand that life holds no guarantees. “Many people take things for granted such as financial stability and a healthy family,” Tim said.

“I have learned that these things are not guaranteed.” Tyler added, “We have kept a positive family attitude which has had a huge impact on our lives.”

Their mom, Leeandra, was diagnosed with multiple sclerosis in 2005. Tim and Tyler were 10. They remember the day the world changed for all of them when she couldn’t get out of bed and had to be hospitalized. They had planned a vacation with another family, and their mother insisted they go without her. Their sister, Brynna, 8, stayed home.

Tim said, “Upon returning home, my mom explained that the doctors believed her to have multiple sclerosis, and I recall just blankly staring and — as much as I hate to admit it — just dismissing it as some kind of ailment obtained from age. I first thought that she would simply take some kind of medication to get better or go through physical therapy to strengthen her body, but I turned out to be incorrect about a lot of those things.”

“When anyone hears someone say that they have a cold or strep throat … people always say, ‘I hope you feel better and take it easy,’ but when a 10-year-old hears the word ‘disease,’ there is a different reaction,” Tyler said. “I did what I was best at and just smiled and said everything was going to be OK. This was not the day that we as a family really understood that this disease was going to negatively impact our life.”

These boys reacted much like anyone might without knowing exactly what this diagnosis might mean. Their comments make perfect sense, especially given their age at the time. Years later, their compassion for their mom has only deepened.

The twins each won a scholarship from the National Multiple Sclerosis Society that is helping them as electrical engineering students at Ohio State University.

Tim uses a metaphor to express his thoughts. “If high tide and low tide are compared to sunrise and sunset, then everything in between can be compared as the events in a day. If the ocean is calm and predictable, it is manageable and pleasant. Once the storm hits, though, the ocean no longer is simply ‘manageable.’

“Rather, there are precautions, steps and planning that is necessary to ride these waves. I sailed the waves, and sailing the roaring ocean has taught me life lessons that I feel that some people will not realize for several years, specifically that financial stability and a healthy family are taken for granted. Growing up in a not-as-typical environment prepared me for college and the world ahead of me, and I am quite thankful for everything that has happened to me up to date.”

When their mom was diagnosed with MS, things became financially difficult. The process to apply for Social Security benefits is long and tedious.

The family chooses to turn it into a positive outcome. When her MS flares up, they make sure that everything else she experiences is positive.

Leeandra said the disease brought changes to her life, but it has not taken joy away. “I think that when I was first diagnosed, I didn’t know what to expect. I have figured out that it is just best to not expect the worst.”

“(We) believe that all a bad situation needs is a little bit of happiness to fix things,” Tyler said.

March is MS Awareness Month. More than 20,000 people in Ohio have MS and, as you can see, it affects the entire family.

When I was diagnosed in 1987, there were no drugs for MS. That was 27 years ago, and thanks to research, there are now 10. The largest portion of donations to the National Multiple Sclerosis Society is used for research and programs for those living with MS.

MS is a chronic, often disabling disease that attacks the central nervous system. Symptoms are unpredictable, ranging from numbness and weakness to total paralysis. It is typically diagnosed between ages 20-50, although the disease has been diagnosed in children as young as 3, with an estimated 8,000 to 10,000 children under the age of 18 living with MS.

The Ohio Buckeye Chapter of the National Multiple Sclerosis Society offers assistance and information for people living with MS and their families.

For more information, call 1-800-FIGHT-MS (344-4867) or http://www.msohiobuckeye.org/

Give a second chance…

Day by day

Give a second chance; be an organ donor
by
LIZ THOMPSON
THISWEEKNEWS.com
Tuesday July 23, 2013 12:38 PM

 

Second chances. Our parents lovingly gave them to us as we learned right from wrong while testing the limits of the boundaries set before us. We grow and learn to make better choices.

Some people won’t get second chances unless someone else makes a good choice — in most cases, a stranger. When we opt to be registered as an organ donor upon death, and no longer have need of our organs, we become a potential hero.

“When a person is put on a transplant list, it’s because their doctor has told him or her that they’ve run out of options,” said Don Huiner, of Columbus. “Their only hope is that an organ will become available. And if they do get that lifesaving organ, they get their second chance on life.”

Huiner is an ambassador for Lifeline of Ohio and has talked with people across Ohio about being an organ donor.

“What a lot of people don’t realize is that, just because you need an organ, you’re not necessarily going to get it. Someone has to say ‘yes’ and sign up to be an organ donor.”

Some person whose identity the recipient might never know.

More than 3,400 Ohioans are on transplant waiting lists. In 2012, only 297 Ohioans donated organs at the time of their death. According to Lifeline of Ohio, their “gifts resulted in 958 life-saving transplants.”

Kaitlyn Thompson, of Lifeline of Ohio, explained: “The heroes who register as organ, eye and tissue donors can save eight lives and heal up to 50 more by donating vital organs and tissue.” The organs that can be donated are the heart, lungs, kidneys, liver, pancreas and small bowel. Tissues able to be donated are corneas, bone, fascia, skin, veins, tendons and heart valves.

She explained and clarified the myths and misconceptions that can discourage people from registering as a donor in the Ohio Donor Registry. Some common myths include:

* Doctors and medical professionals won’t do everything to save my life if I’m an organ donor.

WRONG: The priority of the medical professionals at the hospital when an injury occurs is to save the patient’s life. A transplant team does not become involved until independent physicians have determined all possible efforts to save the life of the patient have failed and a time of death is announced. Doctors and hospital staff don’t even have access to the registry to see if the patient is a registered donor.

* My religion is against donation.

WRONG: In fact, all major U.S. religions support donation as the ultimate charitable gift of life and love. Individuals are encouraged to speak with their religious leaders about donation.

* I’m too old to donate.

WRONG: The truth is, you’re never too old to donate. The oldest donor to date was a 92-year-old who donated his liver to one of the more than 118,500 people waiting in the U.S. for a life-saving transplant. Anyone over the age of 151/2 can be a hero of donation by registering when they obtain/ renew their driver’s license or state I.D.

Individuals are encouraged to share their decision to donate with their families so they can help honor the person’s authorization to donate.

One of Huiner’s role models is his late daughter, Erika. After a courageous lifelong battle against the ravages of cystic fibrosis, Erika was listed for a transplant and waited three years before receiving two lungs on her 24th birthday. She lived a full and healthy life for nearly four years before dying of a cause unrelated to her transplant.

“Erika was not able to donate her organs but was a tissue donor and gave the gift of eyesight by donating her corneas,” he said.

Huiner remains in awe of the way Erika lived her life, but said it would be wrong to call her a hero. “The heroes of Erika’s story are the parents of a young girl who made the decision to donate their daughter’s organs so that four people, including Erika, could realize a new, healthy life.”

Not everyone who needs a transplant gets that second chance. Some die before an organ becomes available.

“In a perfect world, everyone who needs a lifesaving transplant should be able to get it. First, however, someone has to say ‘yes’ and sign up to be an organ donor. Everyone deserves that second chance at life,” Don said.

You can ask questions and register to be an organ, eye and tissue donor by visiting your local Bureau of Motor Vehicles agency, calling Lifeline of Ohio at 1-800-525-5667 or visiting lifeline ofohio.org.