Living with ALS

I am the daughter of a beautiful woman who has been stricken with Bulbar ALS She was diagnosed 9 months ago, in July ‘07, and has declined rapidly.

I’ll try and start at the beginning…about 3 years ago, mom began to be more fatigued, started to withdraw, and seemed to be in some pain. She complained of feeling as though she couldn’t breath when she laid down. Next it was her speech. She began to slur and had a hard time projecting her voice. Then she began to fall down. After countless trips to different types of doctors in Nevada, it was finally suggested, by a home health care NURSE, that she try Mayo Clinic, within a month, we knew what we were batteling. It is not the prognosis we wanted, (we were told that she was suffering from ‘trauma due to back surgery’, that she had reflux and it burned her vocal chords’, along with many other mis-diagnosis) but at least we finally knew and we could begin our fight.

Her diagnosis was on July 17, 2007. At the time, she was still eating mashed potatoes, mac and cheese, and chili rellanos, and drinking Pepsi with Thick It 2, in it. Within 2 weeks of diagnosis, (we still hadn’t even comprehended what she was going through), she was hospitalized with pneuomia, and had to have a feeding tube placed, as she was malnourished. By this time, her speech was almost completely gone, a few sounds that you could make out a word once in a while, (What I wouldn’t give for those sounds to come back, now!)and she was still reeling from the news that she was batteling for her life. After coming home and getting her nourishment worked out, she bounced back. The disease was still working in her, that was evident, but it seemed to slow down and rest.

Around November, she began to weaken rapidly, again. She slept all the time, and rarely went out for any functions. Christmas brought her a Bi-Pap machine to assist her and make her more comfortable. In February, we began having to assist her to the restroom, as she could no longer walk that far behind her walker. On her 40th wedding anniversary, she had to go to the Emergency Room due to respritory distress. I don’t know where the month of March went, as we were in 4 different hospitals because of respritory failure and pneumonia They wanted to place a tracheostomy, however, she is afraid to be put to sleep, and refuses.

In the last week, she has lost almost all movement in her legs, hands, and has no facial expressions at all. It is so hard to look into her beautiful brown eyes and know that she is screaming inside her head, but can’t get it out. She has now lost about 35 pounds, and is skelatel underneath her clothing.

I know the time is coming and it will be soon. I pray that the Lord doesn’t make her suffer and takes her quietly. She has been an amazing mother and my best friend. I am so angry that she has to go through this and that this has to happen to her. But, as angry as I am, this has been the most precious time I’ve ever had with her and wouldn’t trade one second of it for the world.
I’m going to loose my mom, I know that and I understand that. I’m NOT OK with it, but I know that she will soon be able to walk, talk, eat, and smile again, and for that, I am greatful!

I love her so much and if I could take one ounce of what she is going through, I would. If I could give her voice back to her for a day, I would. There isn’t anything I wouldn’t do for her or my dad… I’m just angry that there is nothing I can do!!!