My wife, Sharon, had ALS. She started showing symptoms at the end of 2008, she was officially diagnosed on August 28th, 2009, and she died from ALS on July 31st, 2011. 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.
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 took together. This blog contains thoughts, reactions and learnings. I hope you find it useful. Click here to read about the beginning of our journey.
In the Interest of Full Disclosure
I am a member of Amazon Associates, use Amazon Associate links from this web site to products on Amazon.com, and receive a small commission on each item sold as the result of those links. This doesn’t affect your price for those products, but that small commission helps pay for this web site and for Sharon’s care.
