My wife, Sharon, has ALS. ALS stands for Amyotrophic lateral sclerosis, which is too hard to remember or say, so everyone just calls it ALS. It’s also known as Lou Gehrig’s disease after the baseball player who was the first famous person to have ALS.
If you had to pick a disease to get, ALS would be the last one you’d choose. The general symptom is that your brain loses communication with your muscles, just as if your nerves have been cut. You gradually lose control over various parts of your body: your feet, your legs, your arms, your hands, your tongue, your mouth. Eventually you lose control over your chest muscles, and you’re unable to breathe without a ventilator.
ALS is like being trapped in a tomb with no way to get out. Your mind remains sharp, and in your head everything seems perfectly normal. But when your brain tries to tell various parts of your body to do something, it’s as if no one is listening. It’s a cry in the dark.
There are different types of ALS, and even within a type, it affects different people in different ways. With Sharon it started with a “foot drop” problem on her left foot — she stopped being able to raise her left toes when she took a step. Then she started having speech problems: slurring and difficulty in enunciation.
When Sharon developed these first symptoms, we started visiting neurologists to diagnose the problem. We initially suspected a stroke or even a brain tumor, but CT scans and MRIs came back clean, and through process of elimination we gradually discovered Sharon has ALS. That’s the way ALS is usually diagnosed — not by a specific test that rules in favor of the disease, but by eliminating the possibility of everything else.
Sharon’s foot drop symptom started in the fall of 2008. We first noticed slurred speech in the spring of 2009; that’s when we started visiting neurologists. We got a specific diagnosis of bulbar ALS on August 28, 2009. And we’ve been living with ALS ever since.
My name is Harwell. I’m Sharon’s husband and caregiver. And I’ll be telling you about Sharon’s story and the journey that Sharon and I are taking together.
Why Am I Writing This?
I feel the need to write down how I feel about my situation with Sharon. If you have ALS and you’re reading this, or if you are caring for someone with ALS, then maybe you’ll get some ideas about how to better prepare for what lies ahead. If you’re lucky enough not to know anyone with ALS, then maybe you’ll get a better idea about what it’s like to live with what I believe is one of the worst diseases on the planet.
In any case, it makes an interesting story. There’s a heroine (Sharon), an antagonist (the disease), a trusty side-kick (me), and the day-to-day battles that make life a constant surprise and challenge. It’s a love story, a story of perseverence, and a glimpse at how we cope with our situation. It may be dark some days and light on other days — but hey, that’s what real life is like.
