My Mom, Cheryl, was diagnosed with ALS (Lou Gehrig’s Disease) in September of ‘06. We knew it was ALS before the Doctors did.
Moms early symptoms weren’t ones we even connected to the disease until much later. She thought it was allergies or asthma. Just some relatively minor breathing/wheezing issues that cropped up in the Springtime of 2005. Mom was at my house everyday during that time as she was helping care for my kiddos. During the Summer months we noticed a slight droop on the left side of Mom’s face. It affected her smile more than anything. Her speech took on a slight lisp. It was an annoyance, but nothing terrible. The Doctor ruled out a stroke and thought she had Bells Palsy, which usually heals itself within 18 months. Well, she didn’t get better and continued to get worse. The choking started… at first, it was only when drinking, especially carbonated beverages. Overtime, we had to be careful that she only ate soft foods. Her speech continued to get worse, but I could still understand her. The first Neurologist we saw ran some more tests, all Mom’s motor skills were good. She ordered an MRI… looked me in the eyes and said “if her MRI comes back clear, I’m not going to worry about her”. Her MRI was clear, of course it was. ALS doesn’t show up on an MRI. Six months later, we were back in that same Neurologists office and she wanted to know why I hadn’t taken Mom to the emergency room (she was writing all the time now as we couldn’t understand her speech at all). I was angry, she was the Doctor who told me she wasn’t worried. And what, I might ask, would an emergency do for someone who couldn’t talk? We already had all the emergency situations ruled out. When we left the office that day, she told me that she was referring us to a Neuro in Portland. I was given the name but NO other information. I don’t take these things lightly and had a STRONG dislike for this Doctor, as did my Mom. We let it drop because we didn’t want anyone saying we had an issue because of her race (I am the most NON-Racist persone that exists, I do not tolerate mistreatment or idiodicy from anyone). Once home, I quickly did some research on the specialist we were going to see. Of course, our suspicions panned out. The new Doctor headed up a center for ALS research. We were going to be diagnosed. With a couple of weeks the official diagnosis had been made. Even though we knew this was coming, it was like a sledge-hammer landed when the words were spoken. Two years ago, my Mother could do all the normal things we expect to do at not quite 50 years old. She was caring for her grandchildren, walking, reading, playing with her dog and cat, driving a car, eating and drinking REAL food… Today she is in a wheelchair fulltime. She cannot speak at all. She has use of her hands, although they are also starting to lose function. Even her neck is starting to become weak, requiring a brace to hold her head upright. She has a PEG tube for nutrition, someone must take her to the bathroom and even help her roll over in bed. My Mom turned 50 in June. This is a devastating disease that has robbed her of all the things she should be able to enjoy. It has forced TeenGirl to be raised by her sister and stolen my children’s Grandma. It isn’t fair, it is reality. We can scream about the unfairness of it, or we can accept that this is one thing we cannot change and we can do everything possible to make it easier for Mom. That’s the only choice we have.