1. By Brian Estadt
Editor
You only have to go three or four spots down the list of things Andy
Nodaros enjoys in life before coming to beautifully made and immacu-
lately kept automobiles. Andy loves his vehicles. Loves to clean them.
Loves to drive them. Loves to have them parked in the driveway on nice
days and tucked away in his garage when it rains.
These days Andy drives a deep forest green Chevy Blazer, which —
like every other automobile he has ever owned — is spotless inside and
out.
And though he has nothing but praise for the truck, for Andy the
Cadillac brand name is the be-all, end-all in luxury. Hang around with
him for even a little while, and you’re bound to hear him invoke its name
in comparison. In his book, it’s the Cadillac of metaphors, just as his
souped up juicer is the Cadillac of juicers.
The man knows what he’s talking about. Andy has owned a couple of
Cadillacs, and every time he climbed into one, he felt like all the years of
hard work had paid off.
“It was a status thing,” he says. “(Owning one) made me feet like I had accomplished something,
that I had succeeded. It felt good to drive one.”
With Amyotrophic Lateral Sclerosis robbing his right leg of its use, Andy was having a rough
time lowering himself to the driver seat and raising back up to exit his luxury car. So last month, after
giving it considerable thought, he sold his beautiful 4-year-old, 20,000-mile Cadillac with the immacu-
late leather interior.
“That,” he says with the distaste for his disease very evident, “was really tough to do. That car
represented so much to me.”
ALS has robbed him of an instantly recognizable symbol of success. And that’s not all it’s taken.
As for the Blazer — it’s nice. But Andy will be the first to tell you it’s no Cadillac.
* * *
Amyotrophic Lateral Sclerosis. ALS. Lou Gehrig’s Disease. Those who are familiar with the dis-
ease know it by these three names. Most people, however, aren’t aware of how it affects the body.
Imagine a captain of one of those beautiful, tall ships that annually parade into Baltimore’s
Inner Harbor. The captain of this ship barks out orders to the crew but to no avail. Some of the orders
are intercepted along the way. Some have had the words jumbled. Others have been converted into a
code that the crew cannot decipher.
Soon the decks are no longer swabbed; or if they are, they’re swabbed with tar. The masts are as
bare as Oak trees in November, or maybe their sails are rigged in a manner that confounds the logic of
navigation. The anchor, dropped mistakenly early in the journey, rakes across the ocean floor, nullifying
what little power the sails generate.
Becalmed, the ship drifts out of control until its neglected hull gives way to the cold, dark em-
brace of the ocean.
That is what ALS does to the body. While the feet, hands, arms, legs, throat and lungs await or-
ders that never make it through paths of the nervous system, the brain remains whole and hearty and
ROUTINE CHANGES
Andy struggles to learn how to live with Lou Gehrig’s Disease
“Routine Changes” — the second
installment of “Living Without a
Cure” — was published May 1,
2002, in The South Hills Record.
Copyright 2002 Trib Total Media.
2. as capable of rational thought as ever.
Though the brain issues commands that were so routinely followed earlier in life, the motor
neurons no longer convey the electrical impulses that tell a leg to take a step, a hand to grasp a fork, the
lungs to take another breath.
* * *
While there are notable exceptions, it usually takes two to five years after diagnosis for ALS to
claim the lives of its victims. From the onset, the paralyzing disease drastically changes their lives and
those of their caregivers.
The disease strikes people in different ways. Early symptoms usually include tripping, dropping
things, uncommon fatigue in the arms or legs, muscle cramps and twitches, slurred speech and uncon-
trollable periods of laughing or crying.
As was the case with Andy, the hands and feet commonly are affected first. Before a diagnosis,
people with ALS can find themselves having trouble walking or using their hands for daily activities
like washing clothes or buttoning a shirt.
The paralysis eventually spreads to the trunk of the body and affects swallowing, chewing and
breathing.
Based in Station Square, the western Pennsylvania chapter of the Amyotrophic Lateral Sclerosis
Association (ALSA) works to make life easier for ALS patients in western Pennsylvania and West Vir-
ginia.
Serving 180 ALS patients, the nonprofit organization offers financial assistance for equipment
purchases and respite care, home visits for patients, a monthly ALS clinic at the University of Pitts-
burgh Medical Center and support for care givers.
Valerie Frick, ALSA director of patient services, says a progressive inability to communicate is
the biggest frustration for most patients. For patients who are unable to speak because of the disease,
ALSA has 45 laptop computers that it loans out to make it easier to communicate.
The emotions associated with the disease are frustrating as well, Frick says. In addition to the
psychological process of dealing with the disease — stages of denial, anger, acceptance and hope mani-
fest in no specific order — ALS has a pathophisiological effect that can cause mood swings and depres-
sion. It’s not uncommon for patients to find themselves laughing or crying uncontrollably with little
provocation.
Andy’s way of dealing with the disease is to focus on helping others. As a follow-up specialist
with a mental health employment agency, he is in many ways an advocate for his mentally disabled
adult clients.
He fights for them to be scheduled for more hours. He shares their joys and sorrows. And when
a problem arises in the work force, he goes to bat for them with their managers.
“That’s my way of coping,” he says. “By focusing on them, I don’t think about this disease. That’s
what keeps me going.”
Acceptance of his reduced abilities hasn’t set in yet.
“I don’t think I’ve have come to terms with that,” he says. “I keep pushing myself to do all that I
did before this.
“I’m not going to give up. It seems to me that a lot of ALS people — I don’t want to say ‘give up’
because I guess they always have hope — but it’s almost like they become afraid to live their life.
“I’m not going to let this disease control my life. I’m not. I’m not.”
* * *
Though he refuses to let ALS control his life, Andy has made concessions to the disease.
His workouts have changed dramatically. A guy who used to work on building up his muscle size
3. and tone, Andy has revamped his weight room to focus on maintaining strength and flexibility.
It’s not easy, particularly with his joints. When he rises after extended periods of sitting — even a
half-hour lunch is enough — he often has to work out the stiffness that has settled into his legs. And to
his morning routine he has added time for a leg massager that loosens his muscles.
Also, you won’t see Andy using his back porch anytime these days. The three little steps leading
into his back yard are off limits since they don’t have a handrail. And since he can’t step into the back
yard, he can’t toss the Frisbee around for his big yellow dog, Doogie.
“That’s my man right there,” he says pointing at Doogie on the back porch. “It pisses me off. I
can’t even play with my dog in the back yard.”
Though the steps to his cellar do have a handrail, even his clothes-washing routine has changed.
Since his wife, Carol, works later hours than he does, Andy always has handled many of the
household chores. These days he doesn’t dare carry a clothes basket to the basement for fear that it
might tip him off balance and cause a fall. Instead, he drags the basket behind him.
Though he loved his Cadillac dearly, Andy values his independence at home and at work far
more. And what scares him most about the disease is becoming dependent on others.
“I ask myself, ‘Who am I going to be a burden to? Is that going to be me in a wheelchair seven
years from now? I don’t know if I can handle this if that happens to me.”
Then he reconsiders.
“Well, there are people worse off than me. I just keep saying that to myself.”
* * *
Andy pulls his Blazer into a handicapped parking space at the West Mifflin WalMart, reaches
past the radio and grabs the blue-and-white handicapped parking plaque that’s jammed into a seam of
his dashboard. Yanking it from its snug home with mild disgust, he clips it onto the rearview mirror
and climbs out of the truck.
Handicapped parking spots help make his day easier, but Andy is reluctant to use the spaces at
many of his stops. He says the reason for that is simple — he doesn’t need them.
Many of the businesses that employ his clients are fastfood restaurants that have small parking
lots. Why take up a handicap spot, he reasons, when he can park in the open spot next to it?
But the WalMart lot is too large for him. A few feet away from his truck he grabs an errant shop-
ping cart. Andy jokes that it’s his walker. But even as the words come out of his mouth, he leans for-
ward and puts his weight on the buggy, his gait growing a little more relaxed with each step.
Next week: We take a look into the medical options for ALS patients and Andy’s health regimen.