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.

Those with MS appreciate help, understanding

Day by day

Those with MS appreciate help, understanding

By LIZ THOMPSON

This Week News
Tuesday March 8, 2016

When people see me walking with a cane, they typically ask if I had knee surgery. Or they might ask why I use a cane.

My answer, “I have MS (multiple sclerosis),” usually elicits, “Oh, I’m sorry.”

How could they know?

Each time I hear this response, I’m reminded that MS is invisible. I guess you could say I look normal, whatever that is.

The 2.3 million other people worldwide living with MS must look “normal,” too.

So every March, during MS Awareness Month, I write about it.

Why should people care about MS if they don’t have it and don’t know anyone who does?

Hopefully, to gain understanding and to think twice before criticizing a stranger who uses a motorized cart in a store (yet looks “normal”), walks into a display (been there, done that), or has trouble navigating a curb or step.

I don’t drink alcohol by choice, but when I walk, I can look like I’ve had “one too many.”

We can use a gentle offer of help and will be grateful for it.

MS is an unpredictable, often-disabling disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body.

MS has what I call the frayed-wire effect. A frayed lamp cord often leads to flickering lights.

The covering of nerves, called the myelin sheath, is damaged by MS when the body attacks it, thinking it’s a foreign substance. So MS nerves have segments that are damaged, and the brain-to-body command is disrupted.

Instead of a flickering light, we have trouble walking or moving our hands and arms. We may have spasms, trouble thinking, numbness, balance issues and vision loss, among other symptoms.

In 1987, I lost most of my vision, had numbness in my limbs and couldn’t walk a straight line. Severe fatigue made putting one foot in front of another difficult.

After eight months of medical observation, an MRI led to a diagnosis of MS.

Doctors suspected I was having a series of strokes or had a brain tumor — though the tumor was ruled out early on — so I was relieved to hear MS. I was only 36. Most people are diagnosed between ages 20 and 50.

Once I knew MS symptoms, I looked back and realized I’d had MS since at least age 22.

Prior to 1980, the average time from a person’s first symptom of MS until a definite diagnosis was seven years. The MRI reduced the time to six months.

Before MRIs, when a doctor suspected MS, patients underwent a standard neurological exam and medical history, then sat in a warm bath for a period of time. If they were weak and had other symptoms, they could be diagnosed with MS. Heat is an enemy of MS, causing pseudo flare-ups.

When I was diagnosed, there were no MS drugs and no Internet to research the disease. There are now 13 disease-modifying drugs to reduce disease activity and progression for people with relapsing/remitting MS, the most common type.

In 2010, the National Multiple Sclerosis Society set out to raise $250 million.

This money launched 818 new research projects, 71 clinical trials, 141 projects testing rehabilitation and wellness approaches, and 137 grants to train promising MS researchers.

When people ask how MS affects me the most, the first thing I usually say is that I can’t just decide, “I think I’ll take a walk,” and step outside to do just that. But I refuse to give up, give in or become a miserable grump. I adapt.

MS is an unpredictable disease that can change in a heartbeat. When we put our feet on the floor each morning, if in fact we can do that, we don’t know for sure if our legs will work, at least well enough to carry us through the day.

A strong arm or helping hand is appreciated.

Knowledge is power, as the MS society says.

After all, we’re all just “normal” people getting through life one step at a time. We’re not alone in having something to deal with, invisible or not.

For more information about MS, go to nationalmssociety. org/chapters/oha.

 

Living with MS requires positive attitude

Day by day

Living with MS requires positive attitude
By
LIZ THOMPSON
March 3, 2015

It’s a good thing I didn’t take up dancing for a living.

My daughter has always been good about documenting our family times with videos and beautiful photographs.

Not long ago, she told me she found a video taken of me “dancing” with two of her children — obviously, my grandchildren — when they were very young. They are now 18, 16 and 14. So this was about 15 years ago.

She told me the children realized they didn’t remember ever seeing me without a cane.

“Want to see the video next time you are here?” she asked. “I don’t want to make you feel bad or anything.”

I told her I’d love to see it.

On our next visit, I watched the video and smiled the entire time. I wasn’t really dancing but bouncing to a VeggieTales video with Jacob, then about 3, and Elizabeth, about 2.

That’s when I said, “Good thing I didn’t take up dancing for a living!” while laughing. We all laughed.

In 2000, I was starting a career as a reporter. I didn’t use a cane and didn’t own one. While attending a meeting in downtown Columbus, I fell in a crosswalk on Spring Street. My papers and purse went sliding ahead of me as I lay face down on the street. My first thought was that I was glad I hadn’t worn a skirt that day.

The people were wonderful and helped me stand, gathered my things and a woman with a young daughter walked with me to the sidewalk. These two stayed with me till I caught my breath and took stock of any injuries, which was only a skinned knee. Later I thought about how that woman’s kindness taught her daughter a life lesson in compassion.

Since 1998, I have written this column, the duration of which includes two years in Arizona. I’m typically inspired by life experiences, and this certainly was one to write about. When I wrote about the fall in downtown Columbus, the editor titled it, “The people of Columbus are still picking me up.” Perfect.

And, yes, I bought a cane — a rather funky, handmade cane.

With my day-to-day advocacy for people with any disability, I find a common thread of need that everyone shares, disabled or not: to be treated with respect.

I’m on Social Security disability. Curious, I called the Social Security information number and asked what happens when I’m of retirement age in a few years. “Then we don’t consider you disabled, only aged,” the woman said.

I asked if that meant my multiple sclerosis would be gone then and she laughed. But aged? Wow.

March is MS Awareness Month and I support this awareness together with understanding.

I let people know what I need to safely get from point A to point B without falling: lend me a strong arm or hand up; remove the items from the floor for a clear path; reach that item up high for me; carry my hot drink. These are examples that give others a chance to do something to help, just like the people who helped me in the street when I fell.

But making sure my attitude stays positive makes life more enjoyable. Then hopefully friends and family won’t run the opposite direction when they see me coming their way. Instead, they will smile and ask how I’m doing. MS simply becomes a part of who I am, not the definition of my life.

I have talked with many people also living with MS who really were dancers and physically active in all aspects. Many are parenting young children, which is an active sport in its own right and just as physically challenging as playing some sports. Most have not given up. Instead we adapt.

My first symptoms appeared 45 years ago, but I am grateful I can still move. My middle name became “adapt,” as my MS became more active than me. Some people with MS literally stop moving.

There are more than 400,000 men, women and children in Ohio living with MS.

According to the National Multiple Sclerosis Society, “More than 2.3 million people are affected by MS worldwide. Because the Centers for Disease Control and Prevention does not require U.S. physicians to report new cases, and because symptoms can be completely invisible, the prevalence of MS in the U.S. can only be estimated.”

For more information, see nmss.org.

By the way, I still dance but only to slow music when I’m being held in my husband’s arms. No cane.

There are more than 400,000 men, women and children in Ohio living with MS.

 

My grandchildren

My grandchildren

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/

People with MS thrive with help, wait for cure

People with MS thrive with help, wait for cure

By                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                     LIZ THOMPSON                                                                                        

ThisWeek Community NewsTuesday 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

MS Awareness Month

Befriend, Support Someone with MS
by Liz Thompson
Published March 15, 2012
Suburban News Publications

We’re not hard to find. You see us in venues from the corporate world to Kindergarten. The list is long.

Most are everyday people doing everyday activities.

Symptoms are invisible to most everyone but those living with multiple sclerosis.

This central nervous system disease causes sensations of numbness and tingling, indescribable fatigue, dizziness, blurred vision and often partial or complete blindness, muscle spasms, cognitive problems and more.

The majority of us have relapsing/remitting MS that comes and goes at will. The smaller percentage has progressive MS that declines rapidly.

We may find ourselves in the middle of a large, empty room unable to move safely because we don’t have anything to balance our bodies. That is one way that MS can be paralyzing because our bodies are rebelling within. The new normal is what our lives become as we adapt daily.

I asked Grove City businesses for donations of sweets to deliver to the Columbus TV stations, along with information about March being MS Awareness Month. Tim Horton’s on Broadway quickly agreed to a donation. The woman I spoke with said her sister has MS.

Jolly Pirate Donuts on Southwest Blvd. generously donated donuts along with Tim Horton’s on Stringtown Road.

While delivering the goodies, I found a woman whose best friend has MS and she joins her friend’s Walk MS team every year.

Another station quickly told me they have a staffer with MS.

Like I said, we’re not hard to find.

The mantra for people with MS is “knowledge is power.” When I was diagnosed in 1987, information about MS was elusive. No Internet to research, few celebrities were talking about having this disease, there were few books and no drugs to treat it.

Today information is plentiful and more than five drugs exist proven to slow progression with more being developed.

MS Awareness Month is important because the face of MS is changing.

For years MS was believed to be a disease affecting those age 20-50. Currently, MS has been diagnosed in children as young as three, with an estimated 8,000-10,000 children under the age of 18 living with MS, and in adults as old as 75.

Demand for services in the MS community continues to increase and change in scope. The Ohio Buckeye Chapter of the National MS Society is a lifeline of information and services for the more than 11,000 people with MS in the counties they serve. There are two other chapters in Ohio that also care for the more than 20,000 people in Ohio with MS.

The National MS Society is investing more than $6.3 million over a three-year period in Ohio institutions for 17 MS-related research projects – one of the highest investments nationwide.

How can you help? Befriend someone with MS, offer your arm for support. Consider sponsoring an MS event like the Walk MS in Columbus on April 21 at the Columbus Zoo & Aquarium to keep research and services possible.

For more information, call 1-800-FIGHT-MS  or visit the Web site at MSohiobuckeye.org.