thanks for replying............i posted this in the general information forum but i'll repost here.
a brief background about myself and my family. my mother in law was diagnosed with als around August.
She apparently began having symptoms maybe around March from the best that we can tell. My husband and I lived about 5 hours away from his parents, so we didn't know anything was going on until right before she was diagnosed.
we saw them in April for a wedding, and at the time, she or my father in law didn't mention anything was going on. She had no real noticeable symptoms at that time, except that now that i think back, she spent alot of time sitting down. We saw them again in July--at that time, she could still walk unassisted, but she had a limp that she explained away as what she thought was a hip problem. i helped her get an appt for an mri, etc, and got her in to see a neurologist who first brought up ALS at that time--this was the beginning of august.
She and my father in law now live with my Husband, son and I in our home. She can walk very short distances, (from the bedroom to the bathroom) with a walker, and it is a snails pace, and with much effort. she now has alot of weakness in her arms, and most of the time has to use a cup with a lid that is spillproof because of the weakness.
we had an appointment at the Baylor Neuromuscular Disease Center two weeks ago that did not go well. There were several patients there who were at more advanced stages of the disease than she was, and frankly, it was terrifying for her. She had a meltdown when a Bi-Pap was suggested and we utimately left the center that day without doing half of what we had came to do. She is very adamant that she NEVER wants any assistance with breathing, etc. My husband uses a C-Pap at night and she still won't consider using the Bi-Pap.
All we have been told by the doctor is that she seems to be progressing "fast" but we still really have no idea what that means as far as time goes. what does fast mean? does the fact that she doesn't want breathing assistance ever mean that progression will be even faster?
I don't think until my husband and I were at the Neuromuscular Disease Center that it really hit home with us what lies ahead........I mean, we knew what ALS meant, and what it does, but until we saw people more advance than her, we just didn't "get it".
i'm not sure she's really gotton her head around it yet. She sent off for a hair analysis to see if she was deficient, etc in any areas vitamin and mineral wise. She's always been a big anti-doctor, pro-vitamin health nut kind of person (aside from the fact that she smokes like a chimney). Of course with this diagnosis, she is really down on doctors and said that no one can help her, etc, and i think holds some hope she can find the perfect vitamin to heal her.
my husband already suffers from depression, so this is really taken a toll on him, and this is just the beginning. I already see the symptoms of depression in myself, and I'm to see a doctor about that today. Some days are good, and I think I can handle it and be there for her, and then there are some days i spend 4 hours in my closet crying. How can i take care of her when i can't take care of myself some days?
i live in the Houston area, so i know i need to find a support group, but i know that she won't go, i don't think my father in law will go, and my husband is questionable at best.
I don't know where to go or what to do or to expect and I'm terrified this is going to tear my family apart. I have a 14 year old son who "seems" to be ok so far, but i know what lies ahead isn't going to be easy.