Months before my husband Tomy and I got married in 2006, my mother, Patricia, started to ever-so-slightly slur her speech at random times. At first, she thought it was due to stress, which at the time seemed pretty understandable as there was a lot going on with the family. Honestly, we weren’t too concerned about her at that point. As her slurring progressed, she would laugh it off and say it was due to “just getting older” or blame “ the one mimosa (or two) at brunch.” However she was only 55 years old and soon realized she couldn’t use the age or mimosa excuse anymore because it didn’t hold up and I’m happy to report she never drank mimosas everyday anyway. She then decided to see a speech therapist on a regular basis and although she wasn’t improving much, she was determined to get better because in her heart she believed that she could conquer whatever it was that was keeping her from doing what she loved most…talking and being social!
By 2008, her speech had declined so much that not even her close friends and family could fully understand what she was saying. The typical conversation went something along the lines of, “OK Mom, (Patricia) can you try to tell me one more time?” and she would patiently repeat what she was trying to say, in her drawn-out speech which seemed to take her naturally high and feminine voice into a now lower voice. Eventually she would get her point across but it was exhausting. She could barely chew food but still able to still type, write, drive, walk and exercise! She used paper notepads to communicate what she needed. For example if we were in the car and I was driving, her note would read, “stop and let’s grab Dr. Peppers,” her favorite drink. Or “Take a right then left.” Or at times maybe there was the angry “Lacy, you’re being ridiculous!” which was sadly a common thing for her to say to her loud and stubborn daughter haha…By then everyone (including my mother) were convinced she had had a small stroke but the doctors confirmed it wasn’t a stroke after taking all the necessary tests.
So what the heck was causing her speech to slur so badly we asked? It was so frustrating for her because this woman was a talker and no one had any answers! She had tons of friends and she was known in her circle as the great Gilda Radner’s character “Baba Wawa” (or Barbara Walters of course) because she was the friend who was always asking how are you doing? or how are you feeling? Can I help? What size shoe do you wear?…you get the picture. She was a loyal friend and she loved being there for others. We called eachother everyday (I live in Los Angeles) and talked over an hour discussing the day’s events. So this not-being-able-to-talk-thing was just not gonna work for her. Or me for that matter.
2009 was the beginning of the worst. We had gone to over 30 different doctors at the medical center in her home of Houston, Texas. STILL no explanation. God bless her determination in finding an answer though. She had even asked her neurologist many times if it could be ALS and he insisted it wasn’t. I was fed up so I made an appointment at Mayo Clinic in Rochester, Minnesota and met my parents there. It was there that the doctors suspected she had Frontotemporal Dementia or FTD, which is characterized by the breakdown (degeneration) of nerve cells in the frontal and temporal lobes of the brain, the areas generally associated with personality, behavior and language. Sadly this kind of made sense to me, except the dementia and behavior part. My mother was scribbling at this point on paper, so when the doctor mentioned the word “dementia” as a likely diagnosis, you can imagine how much she wanted to get down on paper right away. She grabbed the doctor’s pen from his pocket and the closest piece of paper in his office. I thought it would be a question for the doctor, but it in fact was intended for my Dad and I. It read, “Don’t tell anyone.”
She later scribbled down that it “wasn’t FTD and that it had to be ALS.” This took her a good five minutes to get down on paper (she was about to lose her whole ability to write or type.) I agreed with her it was ALS. She had previously read all about the symptoms of ALS but it seemed the medical sites at that time suggested ALS mostly starts with tripping or falling and that the speech was affected mostly later with the disease. Well, after going to Mayo Clinic with my parents a couple times that year, she started to do just that. Her gait started to diminish. There were countless trips to the ER because she was adamant on walking without assistance which led to tripping and falling to the floor and getting stiches to the head and black eyes, etc. It was time to make a major change. With the help of Tomy and I, my grandmother Joyce (her mother) and the family, we hired full time care.
I think the hardest part for me as a daughter was witnessing my mother decline on a daily basis and not being able to communicate the last year of her life. It was brutal. We all pitched in and bathed and washed her hair during these times. We all learned how to feed her through the feeding tube. She wasn’t able to dress herself or put her makeup on so we helped with that too because after all, a good southern woman’s gotta look good! Sadly, the feeding tube kept her from taking baths, which was her favorite nightly ritual since I can remember. All the things she loved to do were taken away from her. All the degrading things that go with this disease are just not worth mentioning for sake of dignity.
In May of 2010 my mother was finally (and properly) diagnosed with Bulbar ALS, which yes, affects the speech first. The saddest part of this is that my mother knew her life was ending soon but she couldn’t express to me or anyone her feelings about it. She couldn’t write or speak or move anymore at this point. All I could do was assure her that my brother and I were “going to be OK and we are strong because of you.” The real truth was I was scared out of my mind. We never sat down and talked with eachother about the future without her and what advice she had for me, her wishes, etc. because she was so busy being positive which is kind of amazing. One thing I am sure she felt when she heard the doctor blurt out the words “Bulbar ALS” is that she felt robbed of her life. She lived for her friends and family. Her time was not done here.
I got involved with Project ALS shortly after my mother’s diagnosis. I searched for (and found) a research foundation that was really was making progress in terms of ALS research and I wanted to be a part of it. My mother always stressed to me to help others, get involved in something you believe in and she happened to be a big believer in stem cell research. Project ALS was exactly what I was looking for and I told my mother about it. Since 2010, I have vowed to always donate a portion of my paintings and t-shirt sales to Project ALS because I believe in their mission and hope that in the future no one will go through what my mother went through. My dream is that ALS will be a thing of the past or at least curable. And it will be.
My loving husband Tomy was so caring and understanding during the time when my mother was sick and I deeply appreciate him for that. I traveled to Houston about two times a month those first five years of our marriage. He saw first hand what ALS can do and he too is committed to Project ALS. A seasoned professional race car driver who usually has upcoming movies (movie studios) sponsoring his car, Tomy got the idea to instead put the Project ALS logo on his race car for the annual Formula One race weekend in Austin, Texas this year. It was perfect because I’m from Texas, my family and friends were there at the track along with 150,000 fans a day seeing the cool “Project ALS” Porsche compete in two races! The race was televised internationally, his fan website posted an article about the Project ALS and we tweeted and posted on Facebook and Instagram showing the coolest car ever! We are proud to say we are a part of the Project ALS family and we are committed to getting others on board and donating and moving ahead.