If you don't mind me asking, how long have you had difficulty with your speech? Is it limited to speech or is swallowing impacted too. At this point, my mom has not complained about choking and can still eat. However, over the past year I have noticed that her food went down the wrong way about 3 times.
Hi, Sral ... I can give an exact date that my slurring started: March 16, 2006, when I woke from major heart surgery.
For the first 9 months or so, the slurring was noticeable to others (not to me), and I also had to gasp for air after every couple of syllables. Eating problems started around Sept. 2006, when I had trouble chewing solids. In January 2007, chewing became easier, but I began to have trouble swallowing liquids.
In June, 2007, I had minor surgery on my ear, and when I woke up from the anesthesia, my speech was much, much worse than it had been. (It had been improving with therapy.) At my next appointment with my speech therapist, she said, "What the heck happened to you?" It's been downhill ever since.
So, in my case, slurred speech started March, 2006 Chewing problems, Sept. 2006. Problems swallowing liquids started almost a year after the speech problems began, February or March 2007. I also have breathing and eyesight issues, which are ongoing.
Your mom is lucky to have you supporting and helping her. I think ALS must be at least as hard on caretakers as it is for PALS. Hang in there!
Judith: I like the light/writer, but, as you know, I find it too heavy to carry around with me. And it is difficult to use outside the house, as I have to set my purse down, put it on a flat surface and start typing. The best part is that the person you are talking to can read from the other side as you write, so they don't have to wait till you've pushed the speak button. When I'm away from home, I just spell out words that people can't understand ... like "Quark" or "Korea" ... those K's just kill me. Or, write out what I'm trying to say.
Also, with the light/writer (but this may be true of all augmentation devices,) it can't pronounce a lot of words correctly. Mine can't even say "Elizabeth." So you have to spell things phonetically. For my own name, I have to type: E [space] LIZ [space] UH [space] BETH. Then it will pronounce it correctly. But it takes me a while to figure out the phonetics on new words ... and I'm never sure what it is and is not able to say.
I use it mainly for pre-programmed phrases, especially on the phone. I use, "I need an appointment with Dr. Whoever" when I call medical offices. When someone answers the phone, I hold my phone to the light/writer, press "speak" and it works. Or, I use "I have difficulty with my speech, so please bear with me," then I start talking.
I see a new speech pathologist next week, and she will be getting me going on a more elaborate device, such as the ones you mentioned. I'm really eager to get something faster and more flexible. I'm going to print out your comments, and take them with me for reference. A light, hand-help device would be marvelous.