1fanatic
Member
- Joined
- Jan 31, 2012
- Messages
- 13
- Reason
- Loved one DX
- Country
- US
- State
- CA
- City
- Orange
I am just sitting here crying reading all these posts and don't even know where to begin. I thank you all for what you share; deep, personal and informational; your stories are all tragic yet I know that they are helpful to all that read, including myself. My reason for writing (and I am sure there will be more), is that I am looking for some kind of clue/guidance as to what to do. My mom was diagnosed in January (after seeking answers for about 1 year now); and we are officially waiting for the 2nd opinion with the ALS expert on March 8th although all fingers and tests point to ALS. Anyway, I know the progression of this horrible disease is different for everyone but my question/problem is... my mom is one of those internet readers who develops every symptom that she reads but with this disease, I can't tell if she is really experiencing what she says or not. Currently her only "real" symptom is left leg weakness with a drag and lots of tingling and "body shocks." She has experienced shortness of breath or what she says is difficulty breathing although the doctors have all said that her lungs and breathing are FINE. Today she told me that she is having trouble swallowing and gagging. I told her has to take her anti-anxiety medication - that it will help her with her panic attacks. I don't want to diminish what she's feeling, and I know a part of me doesn't want to believe that any of this is real, am I just in denial. What should I do. How do I do this. Maybe I need some Xanax too, I don't know. I can't talk to my friends, I can't talk to my husband. No one knows what it feels like to know that I will be losing my mom a lot sooner than I had expected.
And can I just say that some stupid stranger-hag overheard my daughter talking to her boss about our situation and that stranger said "I hope your family knows or finds Jesus because the next couple of months are going to be helll."
I am sad and didn't know who else to turn to. This seemed like a good idea at the time. Sorry all.
And can I just say that some stupid stranger-hag overheard my daughter talking to her boss about our situation and that stranger said "I hope your family knows or finds Jesus because the next couple of months are going to be helll."
I am sad and didn't know who else to turn to. This seemed like a good idea at the time. Sorry all.