I'm not sure how familiar people are with ALS. ALS is a horrible disease that leaves the brain completely intact but shuts down the body. Kind of like burying a person alive. It usually is a very aggressive disease but my mom had the even more aggressive form that starts by affecting the bulbar or mouth/facial muscles.
My mom had stuttered all of her life but this disease actually took the stutter away. It also affected her tongue. She had a lot of difficulty chewing and her speech was mumbled because her tongue just wasn't working properly.
After hearing about the diagnosis, I planned a trip back to Ontario. I wanted to see my mom while she was in better health. Well, that sure was an eye opening experience. I think it had only been five short months since I had last seen her and it seemed like she had aged. She had to thicken all of her drinks. It is easier for someone to swallow thickened fluids over thin fluids.
She was also having extreme difficulty walking. Now, it is really important for you to understand that my mother took the bus everywhere. One of our neighbors would comment that she would see my mom everywhere in the city. So this foot drop definitely would effect her ability to get around.
When I was in Ontario, we decided to go out for dinner. Did I ever regret that. She ordered herself a burger but it was so difficult for her to chew her food and swallow. She was choking.
Then on the way home from the restaurant we took the bus. As she grew even more tired, walking was becoming extremely difficult. Just imagine yourself being with your mom and she is walking so painfully slow that you cannot even walk slow enough to stay beside her. We still had fifteen minutes more to get home. I desperately wanted to call a taxi but I didn't have a cell phone on me and we were no where near a phone booth. I have never been so grateful to get home.
My mom and I talked about what her future plans would be. She was really wanting to come out to Calgary to be with me because I am a nurse. But she was pretty insistent when things got too difficult to care for her, she wanted to go into a nursing home. She was an extremely independent woman. The doctor encouraged her to come to live with me when it was time as well.
A month after my visit and only two months after diagnosis, she had a feeding tube inserted. The tube went right through her abdominal wall into the stomach. She no longer ate anything or drank anything by mouth.
More to come next time....