nora
New member
- Joined
- Jul 14, 2009
- Messages
- 5
- Reason
- Loved one DX
- Country
- US
- State
- CA
- City
- Palo Alto, CA
It took me a long time to join this forum. I used to come and read some of the posts when I was feeling sad or confused, but I never wanted to join because I didn't want to have to come to terms with the fact that my mom has ALS. Somehow, joining seemed like giving up on the hope that maybe what she had wasn't really so devastating, so terrible, so sad.
She has been having symptoms of bulbar ALS for about a year - difficulty talking, swallowing, emotional highs and lows, etc. Her speech has gotten progressively worse. She can't eat certain foods and sometimes has choking fits like she's choking on air. Those are scary. As far as I know, that's the extent of her symptoms, but she doesn't really like to talk about it - I think she is trying to protect us (her kids). Last week, she went to the doctor again. She didn't tell us she got diagnosed, but I'm pretty sure that's what happened. I feel like it's almost to the point in our family where we're all scared to talk about it because we don't want to come to terms with this reality. And we don't know where to go from here.
I feel like I've been punched in the stomach. The way I had envisioned my life - my mom at my wedding, my mom as a grandma to my kids, my mom as a fit old lady (she takes such good care of her health.. she even ran a 10K a few months ago) - it all seemed to be taken from me so fast.
And her? I can't even imagine what she's going through. She has always been the rock in our family and stayed strong through everything. She must be scared, she must be sad, she must feel somehow cheated. I don't think anyone can be prepared for something like this, no matter how strong or resilient.
Anyway, I don't really know the point of my post. More than anything, I am grateful that there is a community of support out there for people who are affected by this. I'm glad there's somewhere I can go when I need to talk or vent and that there are people who can relate to what my family is going through. So, thanks in advance. I look forward to hearing from any of you.
She has been having symptoms of bulbar ALS for about a year - difficulty talking, swallowing, emotional highs and lows, etc. Her speech has gotten progressively worse. She can't eat certain foods and sometimes has choking fits like she's choking on air. Those are scary. As far as I know, that's the extent of her symptoms, but she doesn't really like to talk about it - I think she is trying to protect us (her kids). Last week, she went to the doctor again. She didn't tell us she got diagnosed, but I'm pretty sure that's what happened. I feel like it's almost to the point in our family where we're all scared to talk about it because we don't want to come to terms with this reality. And we don't know where to go from here.
I feel like I've been punched in the stomach. The way I had envisioned my life - my mom at my wedding, my mom as a grandma to my kids, my mom as a fit old lady (she takes such good care of her health.. she even ran a 10K a few months ago) - it all seemed to be taken from me so fast.
And her? I can't even imagine what she's going through. She has always been the rock in our family and stayed strong through everything. She must be scared, she must be sad, she must feel somehow cheated. I don't think anyone can be prepared for something like this, no matter how strong or resilient.
Anyway, I don't really know the point of my post. More than anything, I am grateful that there is a community of support out there for people who are affected by this. I'm glad there's somewhere I can go when I need to talk or vent and that there are people who can relate to what my family is going through. So, thanks in advance. I look forward to hearing from any of you.