Amyotrophic Lateral Sclerosis Support Group

I have not posted in this forum yet, but thought I would visit and just say Hi and tell a glimpse of my story.

7 years ago this week, my mother passed away due to ALS. It is a terrible illness, and I feel for all of you who are suffering with it or who have family members with it.

My mother was mis-diagnosed for a year. They told her she had a stroke. What was devestating about that was that she kept trying physical therapy and had continuous frustration when she would only see more disability and pain and no improvement. When they finally diagnosed that it was ALS, she only lived for one more month after that.

For family members out there: Talk to your loved ones now. Tell them how you feel. Tell them thank you for all they've done for you and how much they mean to you.

My mom was truly my best friend and cheerleader. I miss her every day.

Best wishes,

Anna

Your story breaks my heart because it is so close to what I am going to be dealing with soon. My mom was diagnosed about 2 years ago and it is hard to watch her go downhill so fast. She started with not being able to pronounce certain words. Then she started losing her balance and strength. She is now confined to a wheelchair and can't speak at all. She has a eye recognition screen, but it is getting harder for her to use it. She can't even nod her head to tell us yes. My father is bearing the brunt of the care for her and I feel so guilty not being there all the time, but I just can't take it. I know that she needs to be put first, but she has told me that I have a life and I need to live it. Ok, I have to stop because I am about to break down. If you have any advice for me as to what to do with the feelings of guilt about not being there all the time, I would love to hear them!