I might fall, but I won’t lie down for MS

Day by Day

I might fall, but I won’t lie down for MS

March 13, 2017

ThisWeekNews

By LIZ THOMPSON

Falling is hard. Suddenly my body is moving downward, either forward or backward, with nothing to grab onto to stop the fall. Impact is imminent and it will be painful.

I fall like a tree in the forest.

For some reason, many with multiple sclerosis don’t have the ability to react fast enough to fold our bodies for a closer fall or recover from a stumble, like the average person would.

I do know that imbalance, weakness and muscle spasms cause most of my falls. Other people with MS might have vision and fatigue problems.

Last year, I fell too often and fear of falling became my new reality. I’ve overcome that fear before.

After this last series of falls, I thought back at what I was doing when I fell to determine how to prevent a repeat.

I came to these five conclusions: I must always touch something when leaning over; carry nothing while walking; use my cane or walker; scope the landscape before that first step; and ask for help.

If you have ever fallen or watched someone fall when you couldn’t help them, you understand that helplessness is part of the pain.

All through our lives, we adapt — most of it’s good. Change and challenges are a part of life.

People with chronic illnesses, such as MS, tend to look at life with a unique perspective. As our illnesses wax and wane at their own volition, daily we learn to see what’s most important and are in a constant state of adaptation.

I see my circumstances as positive, urging me to make the most of each moment. When people ask how I am, I hope to be able to say, “I’m upright!”

So if you don’t have MS or know someone with it, why would you want to read about it? By writing about it, or sharing my experiences, I hope to build a bridge to understanding.

Years ago, when my daughter was in nursing school, some nurses were quietly joking about another nurse who walked like she had been drinking alcohol. My daughter saw this and asked them, “Did you ever think she might have MS?” I don’t know their response, but I knew my daughter showed compassion.

It’s easier to jump to conclusions than to learn the facts.

My MS was diagnosed in 1987 when I lost partial vision. Hindsight tells me I had symptoms as early as 1970. In 1987, there were no disease-modifying drugs for MS, proven to slow down relapses; now there are 14. There was no Internet. Today, patients easily can become overwhelmed with information. I always suggest to newly diagnosed people to talk with their doctors, and those with MS to visit nmss.org.

MS isn’t contagious. The immune system thinks the myelin sheath (a substance that protects nerve fibers) in the central nervous system, as well as the nerve fibers themselves, are foreign objects and attacks them, causing damage. The signals from the brain to parts of the body are interrupted, like a frayed electrical cord. The result can be vision loss, numbness, weakness, spasticity, motor-skill problems, fatigue and more, with varied degrees of disability.

My worst relapse since diagnosis was in the early 1990s. The numbness started in my toes and moved up my body. In a matter of minutes, my entire body was numb.

Six weeks later, the numbness disappeared, except for my right hand and forearm.

But I can’t live in a rubber room, so to speak. I have to be smarter than this disease and constantly reinvent how I go about doing the things I love.

I still cook, bake, garden, knit, read, write, visit and go to church, and I “walk” the dog using my scooter or power wheelchair to get around safely. Learning to adapt is part of life. I don’t sit home crying or being sedentary. That works against all reasoning for physical and emotional health.

I am one of more than 2.3 million worldwide living with MS. March is MS Awareness Month. The next time you see someone walking “funny,” offer a strong arm or a listening ear. That’s the kind of help we all need.

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ADA’s passage brought rights, responsibilities

Day by Day

ADA’s passage brought rights, responsibilities

By LIZ THOMPSON

 July 20, 2015
This Week News

The signing of the historic Americans with Disabilities Act on July 26, 1990, was in some ways just a start. But in many ways, it was a long time coming.

Something this momentous doesn’t fall from the sky, as I’ve heard said. It happens because thousands of people with disabilities have said, in one form or another, “See me. Hear me. I’m a person with rights, just like everyone on this earth.”

The ADA is the nation’s first comprehensive civil rights law addressing the needs of people with disabilities, prohibiting discrimination in employment, public services, public accommodations and telecommunications.

President George H.W. Bush stated, after signing the ADA, “Three weeks ago we celebrated our nation’s Independence Day. Today we’re here to rejoice in and celebrate another ‘independence day,’ one that is long overdue. With today’s signing of the landmark ADA, every man, woman and child with a disability can now pass through once-closed doors into a bright new era of equality, independence and freedom.”

Those doors Bush speaks of are literal and symbolic. Yes, entry into a physical door, for someone using a wheelchair, was nearly impossible, but entry into employment and many educational situations held the same barriers.

Legally, the historic shift in the direction of the 25-year-old ADA began notably 42 years ago, in 1973, with the passage of Section 504 of the 1973 Rehabilitation Act.

“Section 504, which banned discrimination on the basis of disability by recipients of federal funds, was modeled after previous laws which banned race, ethnic origin and sex-based discrimination by federal fund recipients,” said Arlene Mayerson of the Disability Rights Education and Defense Fund.

Mayerson also wrote that it was the first time that excluding people with disabilities was viewed as discrimination. Generally, it was assumed that problems faced by this group, such as unemployment and lack of education, were “inevitable consequences of the physical or mental limitations imposed by the disability itself.”

Before public education showed what could be done to include those with disabilities in society, it was an “out of sight, out of mind” mentality. Ramps and curb cuts were rare, if in existence at all.

Here we are talking about the physical limitations, but many disabilities are invisible, such as hearing loss and emotional or psychological struggles.

The word disability seems to hold a negative impact. Whereas, in the past, the word handicapped was widely used, then disability, now special needs is being used more easily. The dictionary defines disability as “a disadvantage or deficiency, especially a physical or mental impairment that prevents or restricts normal achievement.” Separate the word as dis-ability and put special in front and you have special ability.

Defining normal achievement might be impossible. What is normal for one person might be an exceptional achievement for another.

Learning to adapt to restrictions, even as we age, is status quo for many, even without a defined disability. Conditions such as arthritis, osteoporosis, insomnia, diabetes, depression, and knee and other joint problems all create some sort of need to change how things get done.

Besides medication, it might mean physical therapy or special diets. But I am convinced, since our bodies will never be perfect, that we all struggle with some kind of deficiency, or lack of ability to operate at full speed. Call it disability, if you will, because we are not performing at optimal ability.

At the 10-year ADA anniversary celebration, U.S. Sen. Bob Dole said, “Disabilities do not discriminate. At any moment, anyone can become disabled.”

He knew this personally as he became disabled with a serious war injury. His recovery was slow, leaving him without the use of his right arm. He said a doctor who treated him “inspired me to focus on what I had left and what I could do with it, rather than complaining what had been lost.”

Those of us with disabilities with a medical diagnosis do just that: focus on what we can do, not what we cannot.

Many of the outcomes of the ADA are good for society as a whole. Ramps and curb cuts allow everyone to cross a street without stepping off a curb; automatic doors, and ramps into these same doors, make entry into any building a breeze. And if we find our physical or psychological needs changing, we know we can safely talk with our employer to accommodate us, even for the short term.

Thank you to the unsung heroes who stepped forward for those who could not.

 

Music unlocks many emotions

Day by day
Music unlocks many emotions
By LIZ THOMPSON
ThisWeekNews.com
Tuesday October 7, 2014

When I was invited to a hymn sing at an assisted living home, I asked, “What hymns are you singing?” and was thrilled with the answer.

The list included what I call old, familiar songs such as Amazing Grace, When We All Get to Heaven, Love Lifted Me and a childhood favorite, This Little Light of Mine.

I was also glad I would be sitting with the residents and not leading the singing. My singing voice went south in my mid-40s when I was almost deaf, a condition that happened gradually since childhood.

Music and singing was my fervent hobby, and I often led singing at such places while playing my guitar. I had missed it and realized this particular day that, in part, I had been missing the contact with people who love visitors and music.

After two successful cochlear implants, I had hoped for restoration of my ability to grasp music, but it didn’t quite happen as I hoped.

I can understand most vocalists’ words — if they actually enunciate and sing, not what appears to be screaming into a microphone — but new music melodies are like a foreign language and quite flat.

Am I sad about that? At first I was, but my restored ability to understand speech and sounds with clarity superseded any sadness. Going from deaf to understanding about 95 percent is nothing to sniff at and I’m thankful beyond measure.

Back to music.

To my joy, 40-plus years of music are stored in my brain, and heart I believe, as music memory. If I see the words and get the first note of a song, or have the music to read, I get it and can sing.

My voice is no longer one for performing but I don’t mind singing at home or in groups. When my grandchildren were small, nothing stopped me from singing to them as I know I was sung to by my mother and grandmothers.

I can still hear the beat so my foot taps, hands clap and my soul is soothed.

Remember the show Name That Tune? Often I knew the tunes in two to five notes. So you can understand my music memory is full of good songs such as hymns, music from the 1930s (thanks to my parents) through the early 1990s that includes folk songs, show tunes, camp songs, pop, big band, songs I composed and more.
It’s a true blessing and I’m glad my brain has a lot of good information stored for easy access when needed. I don’t even need to select an app to get at it. I only need to think of a song or hear a familiar tune.

After my recent column on memory, a reader, Dana, told me about a movie that was, at the time, showing at the Drexel Theatre called, Alive Inside: The Story of Music and Memory .

To my chagrin, I didn’t move fast enough to attend and it has moved on to another city. Looking on the website, musicandmemory.org, I learned that music has proven to reach people with Alzheimer’s.

Not a surprise. Many memories are locked inside all of us and we need something to turn the key. In the case of music, it often unlocks memories and emotions for me.

When at the hymn sing, a woman in her 90s held up her forefinger and waved it back and forth when we sang This Little Light of Mine. I joined her in the motion and smiled remembering doing that as a child and when I taught my children the song.

Music can bring tears to my eyes from the message or a melancholy memory often marking the passing of time in my life.

After my first implant, my audiologist told me about HOPE Notes. According to the program’s website, http://hope.cochlearamericas.com/listening-tools, it is a “program uniquely developed for cochlear implant and hearing aid users designed to help improve music perception and appreciation using original songs, traditional folk, blues and country styles and some familiar tunes played in unexpected ways.”

Using both visual and auditory cues, it reminded me of how I heard music, and it improved my ability to enjoy it more.

The man who developed the program is a musician with cochlear implants. So often, adversity brings a gift and he shared his gift with others in a similar situation.

Next time you sway to a familiar tune, “count your blessings, name them one by one …”

Health is a gift…

Day by Day
Health is a gift that should be appreciated
By Liz Thompson
ThisWeekNews.com
Wednesday July 16, 2014

Accidents happen. Life can change in the blink of an eye.

“Health and where you live is important because you need to know what you can control. Because pretty much everything else is out of (your) control,” said Brad Eldridge.

“I just want to be an average guy. Be a taxpayer.”

He said his aspirations are to serve people.

As a lay counselor for the Vineyard Church, he does just that. He knows firsthand about challenges.

“As a counselor, I see fighting about differences. Everyone has a human history that has far more similarities than differences,” Eldridge said.

In the early 1990s during a fraternity initiation at Otterbein College, the pledges were told to dive across the mud. Eldridge was a competitive diver and did a traditional tuck of his head and dove.

His life changed in a moment. He became quadriplegic.

Now 42, he has learned to adapt to a world that’s not built for him. Years ago, he moved to Creative Living near Ohio State University in a space that is built for him.

Eldridge considers himself a minimalist.

When he thinks of the beautiful buildings on the Otterbein and Ohio State campuses, he cringes to think of changing that architecture for a ramp.

“I never had the ‘take me through the front door’ mentality; it never made sense to me. I don’t care if I go in the back door (if the access ramp is there), just get me in the door.”

The Americans with Disabilities Act was signed in July, 24 years ago. Among other things, the act required buildings to be more accessible for people using wheelchairs.

“People tend to be insecure and get angry. I don’t get angry. Frustrated, yes — but I don’t waste energy on anger,” Eldridge said.

The last 18 months, he has seen life from his bed instead of his wheelchair while dealing with cancer treatments and pressure sores. Pain is a constant companion.

“I have to rise above the pain. I don’t want it to regulate my life,” Eldridge said. “I ran cross country and that’s about keeping pain at bay. So I was prepared long ago for this. I’m not real sure how I’m able to deal with this, but I just am.”
His faith challenges and sustains him. He doesn’t want to sit on the bench while other lives go on.

“I decided I’m done with this (focusing on pain) and have to move on. Get busy however I can.”
Science offers hope for people with paralysis.

Neurobridge inventor and project lead Chad Bouton of Battelle says, “Indeed, there is hope with science. I’ve spent my career at Battelle specifically because our organization was created with the charter of using science to benefit humanity. It’s something we still take seriously today and it’s something that is personally important to me.

“When I started working almost 10 years ago in the area of neurotechnology, I knew the possibilities could change the world. Today, with my team, we are still working as hard as we can to bring that to reality. We have a long way to go, but certainly we’ve made a lot of progress and hope one day our Neurobridge technology can help people living with paralysis every day.”

Ian Burkhart, 23, of Dublin, was the first to receive the Neurobridge, and with the intricate technology was able to move his fingers for the first time since he dove into a sandbar four years ago and became quadriplegic. Even though there is no personal benefit to him at this point, being part of this groundbreaking procedure was an honor.

The doctors and researchers kept Burkhart completely in the loop throughout the process. He said he knew that technology would come along, but he couldn’t sit around and wait for it. Eldridge was grateful someone took on the challenge — both Battelle researchers and Burkhart.

“This is how it is right now and I make the best of it,” Burkhart said. “Having the right attitude affects everyone.”
A former lacrosse player at Dublin Jerome High School, Burkhart now coaches boys lacrosse at his alma mater.

“It is often said that you don’t appreciate what you have until it is gone. Many people forget that their health is the most precious gift they have,” said chiropractor Peter Feldkamp.

At the end of the day, Burkhart and Eldridge agree that who you are as an individual is not just the body, it’s so much more. They are living proof.

 

Seek treatment if you suspect hearing loss

Day by day

Seek treatment if you suspect hearing loss

By LIZ THOMPSON
Wednesday May 14, 2014
ThisWeeksNews

“The incessant bird chirping became bothersome.”

Actually, bird songs make me smile. So why would I write they are bothersome?

That first sentence was part of an Arizona State University research study of new sentences for the Standardized Hearing Test. I was a test subject and got 100 percent because I have two successful cochlear implants that allow me to perceive sounds. My favorite sentence was: “Her smile was as smooth as creamed corn.”

I implore you to read these two sentences to someone you suspect has hearing loss. If they don’t understand, their hearing may need help. Hearing loss isn’t only about not hearing sounds, it’s more about misunderstanding words. Communication becomes stilted, often causing people to withdraw.

The 48 million people who report some degree of hearing loss likely agree.
When visiting 98-year-old Ruth Sawyer Jividen, I was writing everything on a pad of paper because she could not hear well. She tried to get her hearing aid out of her ear canal and, finally, it released. I saw a tiny hearing aid that would be difficult for anyone to remove.

We laughed when we realized there was no battery in the aid. I told her I would have to write about this in May, during Better Speech and Hearing Month.

Sadly, Ruth won’t read this because she died in April. Even though her hearing aids were a nuisance for her at times, she wanted to communicate in any way possible.

I have always been an advocate for effective communication. Over the years, I have incorporated the use of speech, speech reading (or lip reading), sign language and writing. No matter the age or amount of hearing loss, I believe in having choices and using whatever works.

Years before I was totally deaf, sign language became my second language. Writing and reading lips and body language were all ways I connected with others.

Sometimes the best tool was letting others know what I needed. Often it was as simple as moving to a quieter spot. It was important to me to let others know I really wanted to know what they were telling me.
Reena Kothari of Hilliard is a doctor of audiology (Au.D.) who has experience in early hearing screening for newborns and infants. She agrees that using whatever you need to communicate is important.

“Hearing loss affects the life cycle/span and is so vital for communication,” Kothari said. “Humans are pre-wired to communicate.”

She added that one in three babies is born with permanent congenital hearing loss, making it the most common condition existing at birth. She said it is the most common condition in adults after heart disease and arthritis.

Kothari said Ohio has a law that babies must be screened before leaving the hospital. The screening identifies babies at risk for hearing loss. They refer those parents to an audiologist, who can do further testing, diagnose hearing loss and suggest available communication options for the child and family.

Hearing loss can occur at any time in a person’s life. It can be genetic or induced by noise, medication, disease (such as heart disease, diabetes or high blood pressure), side effects, illness or allergies. It can be permanent, fluctuating or progressive, Reena said.

If you suspect hearing loss, it’s important to see a licensed audiologist for diagnostic testing; that person can provide options along with counseling and support and refer you to a physician, if needed.

Hearing aids are improving continually, as is cochlear implant technology. I encourage people to seek hearing aids that are easy to handle. If people see them, they will grasp your needs better.

Hearing loss is invisible, which adds to the dilemma. When I wore hearing aids, often people couldn’t understand my lack of comprehension. Understanding is a two-way street. For a person with hearing loss, word discrimination is difficult. The icing on the cake is when the other (hearing) person displays patience and understanding.

The sign for communicate is forming a letter C with both hands and moving them back and forth at chest level. Two-way street.
Whether you have a newborn, are 98 years old or fall somewhere in between, recognizing hearing loss is the first step to improved communication and staying involved with the world around you.

The spring 2014 edition of Hearing Health Magazine, at hearinghealthmag.com, talks about how to buy, choose and use hearing aids and get the most out of them. This publication is free and full of good information.

Check it out, as well as your hearing. Speak up for your needs and listen to the birds sing.

 

Help available for local seniors

Day by Day

Help available for local seniors
By Liz Thompson
ThisWeekNews

Wednesday April 16, 2014

Like it or not, we are aging, every day. When we find our first gray hair and start noticing how many stairs there are — everywhere — life starts changing.

Most of us, once settled in a home and community, want to stay there and keep our independence. To do that safely takes planning, but it can be done.

Two Ohio legislators, state Reps. Cheryl Grossman (R-Grove City) and Michael Stinziano (D-Columbus), have taken steps to help that happen. They sponsored House Bill 84, the Ohio Home Renovation Tax Credit.

According to the legislation, it “would provide up to a $5,000 non-refundable income tax credit for the costs incurred to modify an existing home.”

The bill states, “The accessibility features promoted in HB 84 represent an evidence-based prevention strategy that has been shown to reduce the incidence of falls among older adults.”

HB 84 says home modification promotes independent living. Getting the legislation passed is still in the works.

Some safety measures homeowners can take include having good lighting and working smoke alarms, clearing walkways inside and out, removing loose rugs, and installing grab bars in the bathroom/shower/tub and sturdy handrails on both sides of stairs.

If falling is an issue, especially when living alone, an optional alert system might be a good call. A person wears a bracelet or pendant with a button to push when he or she falls and needs assistance. Learning to use a cane, walker or scooter can help a person get around safely and is worth thinking about.

When help becomes a necessity, we may not know where to turn. The good news is there are answers.

The Franklin County Office on Aging has a Senior Options program that funds three suburban call centers that offer well-being checks via telephone and other services.

Judy Lewis, activity and outreach leader at the Evans Senior Center in Grove City, said its Senior Call program ( 614-277-1060) began because Jackson Township paramedics saw many seniors or people with disabilities who were alone and had few resources. They contacted her and with her help, the fire and police departments developed the program in 2004.

“We get calls from all over, not just the Grove City area, because we are in the Senior Options brochure,” Lewis said. “I can’t turn them away.”

She meets applicants in their homes to learn about their needs, when they want a phone call and to match them with the right volunteer.

“It’s a rewarding opportunity for the volunteers,” Lewis said.

Grove City offers Smart911 for residents. This free service allows citizens to create a safety profile on smart911.com for their household that includes any information they want 911 to have in the event of an emergency.

Upper Arlington offers Kind Call (614-442-4016), a telephone check-in service that is free for residents. The automated calling system tries each phone number up to three times; if there is no answer, a dispatcher tries. If that fails, a police officer checks the residence.

UA also has the File of Life program. Information pouches were mailed to residents age 60 and older to fill out with medical and contact information to display on their refrigerators. It helps emergency personnel know where to look when responding to a 911 call.

“It’s important to stay engaged physically and socially. Stay strong and have a system in place where someone checks on you. We need to watch out for each other,” said Amy Schossler, director of the Upper Arlington Commission on Aging.

She suggests contacting local senior centers for information and to find ways to stay involved in the community.

Westerville’s Safe Call (614-901-6790) is free to anyone who is homebound, disabled or elderly and lives within city limits or in Blendon Township. If no one answers the automated call at the set time, the call goes to a designated backup person to check on the resident. If that fails, a paramedic and police officer go to the home.

“It has no restrictions of age or need. Anyone who feels the need to receive a check-in call can sign up,” said communication technician Kippy Shurman.

Westerville Chief Fire Marshall Paris Smith-Higbie is in charge of fire inspection, investigation and public education.

“Prevention is important and we offer home fire safety inspections upon request,” he said. “We point out fire and tripping hazards and how to correct them and we make recommendations for things like handrails.”

Call (614-901-6600) to request an inspection.

These towns offer more than I can write here. Check your city offices for what might be available or contact the Franklin County Office on Aging at 614-525-5230 or officeonaging.org for more information about available assistance.

 

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/