Suzette Livingston steps down from Farm Bureau following diagnosis with a form of ALS
By Sarah Pridgeon
No regrets, that’s the secret. Suzette Livingston has stepped down as the county’s Farm Bureau agent due to her diagnosis with a form of ALS, but she leaves content with the impact she has made and wearing the same smile that has welcomed friends and clients alike for so many years.
Suzette was diagnosed in August with primary lateral sclerosis (PLS), the rarest form of ALS. Since March, her physical deterioration has been rapid; before then, though the disease had already begun its work, the symptoms were too mild to notice.
“As near as I can tell, it has probably been with me for several years. I noticed in March my vocal chords were starting to get worse and I had several falls,” Suzette says.
“Now, looking back, it has been present in my body for several years unbeknownst to me.”
The first thing Suzette noticed was that she was finding it more difficult to balance. Heading outside to shovel snow with husband Perry, she found herself feeling faint.
This struck Suzette as strange. She has always worked out and watched her nutrition, she says, and shoveling snow was not exactly a new task.
“I told him, you must be spoiling me honey, because I’m getting weaker all the time,” she smiles.
“I didn’t really know what I was seeing – there was no way to know. I thought I was just getting older or not working out enough.”
PLS is a motor neuron disease that, according to the Mayo Clinic, causes muscle nerve cells to break down slowly, leading to weakness. It can happen at any age, but the cause is entirely unknown.
Caregiver Tina Hullinger from Sharon’s Home Health spends most of the day with Suzette, standing by as she showers or dresses and lending a hand as she grows tired.
“Suzette is losing her speech faster than some. Some lose their body movement, the ability to use their arms and legs, and are in a wheelchair,” Tina says.
As the disease progresses, the patient has more and more difficulty moving. We know what is going to happen, says Tina, but it’s impossible to know when.
“It all depends how fast it moves and whether she takes care of herself, which she is. She’s trying to eat healthy and be healthy so as to make it as long as we can,” Tina says.
“It is a very hard disease because she won’t lose her mind, it will be intact all the way along. She will know what’s happening, she will know as her body starts shutting down, which is very hard.”
By the time most people are diagnosed, they have had the disease for a couple of years without realizing it. Once the symptoms have become obvious, says Tina, the decline is usually rapid.
But for Suzette, it’s the pain in other people’s eyes that has proven the worst part to deal with.
“For me, it became a matter of getting control of my mind, my heart and my spirit so I have more positivity for them,” she says.
Suzette is not afraid. There’s nothing to be afraid of, she says; her faith reassures her that the best is yet to come.
“I’ve tried very hard to be positive. Only my hubby and sometimes the kids get to see the worst of me. I don’t want people to feel sorry for me, I don’t want to be the beneficiary of a fundraiser,” she says.
PLS has not stopped Suzette from finding ways to make a difference – quite the opposite, in fact. She’s helping to test a new balance trainer that allows the patient to walk upright and has made a video available at https://youtu.be/XfdymNQEQ6U urging her friends and clients to make sure they have planned their estate and researched their insurance plans.
If Suzette could leave her community with a single piece of advice, it’s to always prepare for the future – no matter your age or situation, get your estate in order. Look at the possibilities and make an informed decision, she says.
“I’m trying very hard to make my situation count for something,” she says. Because she had followed her own advice, she is relieved to know that she remains in charge of what happens to her and still gets to make her own decisions.
“How do we know tomorrow morning we won’t be the victim of a plane crash and it change your life forever? The future is always hard to see,” she says.
“We have to accept what God has in mind for us. We are his instruments to bring about what he needs. If God wants to use me to tell people to get their house in order and that they should have a will or a trust and all their medical documents in order, I will.”
Suzette is also taking part in a trial for ALS sufferers called the Iron Horse Study.
“PLS, on rare occasions, does become ALS and I have the right markers. It doesn’t mean it will be of any benefit to me, but in the future I can make a difference,” she says.
The blind study aims to find out if there is a means to create a marker for diagnosis for patients. Currently, all forms of ALS are diagnosed in the absence of any other disease; finding such a marker could also be a step towards finding a cure.
“ALS is different for every patient and all they can do is treat the symptoms – there’s no cure at all, no medicine of any kind. That’s why it’s important for people like me to be in the studies,” she says.
Meanwhile, Suzette’s day-to-day life has changed considerably. It’s difficult for patients as they lose their independence, says Tina: no longer being able to drive, relying on a balance trainer to walk short distances, even having to avoid a once-cherished glass of wine.
“Sometimes it can be very difficult because, when I wake up in the morning, I never know what may have changed in my life,” Suzette says. “I can’t be alone for too long. My chances of falling are too great. I’ve fallen many times, I’m amazed I haven’t broken something – but I think it’s because of my nutrition, I’ve been protecting my bone structure.”
There’s little else to be done than face the challenges each new day brings – something Suzette faces with grace and acceptance. There are always bright sides, she says.
“I’ve received so many emails from clients and they were so tender and caring, it has been amazing.”
It might not surprise anyone who knows her to see the long list of names in her email inbox, but for Suzette it was deeply touching to realize the difference she has made in lives around her.
“I’m not alone. I have so many friends and a great support system. I can’t imagine my life without my kids or Perry – they have been my major support,” she adds.
The Mayo Clinic has also been invaluable. Suzette spent the first couple of weeks there in December, greeted as usual by her team, covering everything from speech to physical therapy. She has now begun a new treatment that has been shown to slow the progression of symptoms in some patients.
At the clinic’s recommendation and also her daughter’s, Suzette is also greatly enjoying an app that lets her program words and phrases for a pre-recorded voice to read out loud. As well as the names of her loved ones, foods, places and useful words like, “hello” and, “I am thirsty”, the app lets her share her true feelings no matter how tired her vocal chords are that day.
You’ll find one or two choice phrases among her selection. Lately, Suzette’s vocal chords been growing tired by the afternoon, but the app lets her rest her voice while still being understood when, for example, requesting in no uncertain terms that her companion “Stop it!”
The smile is still there, through it all, and Suzette says firmly that she has no regrets. No matter how tired she feels or how difficult the disease makes it to control her emotions, she remains determined to keep making differences as long as she can.
“I’m just who I am and who I’ve always been. I haven’t changed. Why not go out with as big a bang as I can make?” she laughs.