Hi there! My name is Lisa Wittenberg, I’m 46 years old and I’ve recently been diagnosed with ALS. Yup, Lou Gehrig’s Disease. Never heard of it? Well, I hadn’t either. I mean, I have heard of it (who DIDN’T do the Ice Bucket Challenge a few summers ago?), but I didn’t really know anything about it. Before we go into that, why don’t I tell you a few things about me and my family.
I’ve been married to my wonderful husband for over 18 years. Joel and I met when we were just 18 but didn’t marry until June of 1999. He’s a history teach at a local high school who also enjoys coaching varies sports. He’s been the boys head golf coach for over 14 years and is also coaching basketball right now. We have two teenage boys; Tommy is 16 and Andrew is 13. I am also surrounded by the most wonderful extended family and friends who brighten my world on a daily basis.
Over a year ago, I started going to physical therapy for a sore back (which was actually a pars fracture in my lower lumbar) but was getting very little relief. I was trying to avoid surgery but in January 2017, my physical therapist noticed a drop in my right foot. She insisted I see my doctor immediately, which I did. My doctor ordered a nerve conduction study as well as an EMG. Those test showed damage to my perineal nerve and my doctor suggested I see a neurosurgeon. In late April 2017, I had spinal fusion surgery, which was a success. No more back pain and I was recovering nicely…except for my foot drop. It was still there. That nerve was taking it’s sweet time regenerating. I was also noticing weakening in my right hand. Simple things like closing a ziplock back were difficult. My neurosurgeon referred me to a neurologist for another nerve conduction study and EMG…on my right leg and hand. Well, before I could see the neurologist, I fell down and broke my right leg. In August of 2017, just 8 months after my foot dropped, I was diagnosed with ALS.
My world changed that very moment. My husband and I cried for what seemed like hours. How would we tell our boys, one of whom is on the Autism Spectrum? What about the rest of our family? It was shocking, to say the least. I’ve always been such a strong, independent woman. I took my boys everywhere! We did everything together. Beach, Disneyland, road trips to Los Angeles to explore the city, camping…I did it all with my boys. Summer of 2017 was the first summer I didn’t take my boys camping. Devastating.
ALS, or amyotrophic lateral sclerosis, is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to their demise. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, people may lose the ability to speak, eat, move and breathe. The motor nerves that are affected when you have ALS are the motor neurons that provide voluntary movements and muscle control. And there is no cure. So no more building tents, digging for sand crabs on the beach, long drives to LA, standing in line at Disneyland for our favorite ride…all gone.
Today, just a few months after my diagnosis, my world has completely changed. I can no longer climb stairs so I haven’t been in my bedroom in almost 3 months. I sleep in the spare bedroom downstairs. I mostly get around using a motorized scooter. I can use a walker, but only to walk a few feet. Getting from a sitting to standing position is almost impossible and I can’t shut the door of the bathroom because the scooter takes up most of the room. Tasks such as showering and getting dressed leave me completely exhausted. I’m trying to become a “lefty” because my right hand can no longer grip a pen or use scissors. Gift wrapping this holiday season will bring on another challenge.
With all that I am faced with, I still have hope! I have an amazing “village” of friends and family that are there for me every step of the way. I have a very blessed life and I never lose sight of that. I was recently accepted into a ground breaking clinical trial that was shown to slow down progression of this horrible disease! Science is catching up and I firmly believe that I will see either a treatment of ALS or a cure in my lifetime! My family and I are counting on it!