I UNDERSTAND. I WAS TOLD TODAY I HAVE ALS WITH BULBAR. I HAVE TWO CHILDREN AND NOW I AM MAKING MY FINAL WISHES. I WAS TOLD I MAY HAVE TWO YEARS BUT I DONT NO IF THAT MEANS WITHOUY HELP OR NOT. I HAVE LOSS MUSCLE ON MY ARMS AND MY VOICE IS BAD. I FULL UNDERSTAND. I AM HERE

Thanks. We are adjusting. My partner is extremely positive and its helped a lot. We live in denial most of the time. I'm more depressed than he is...

We buried my mom October, 2013. Then in May my sister told the rest of the family she has ALS. I'must in shock. The disease seems to be progressing fast. I don't know what to do. That's going to leave me the only girl left in family, to take of my dad. I'm lost and confused.

My dad is told he has something that they're going to call ALS because they have no other ideas. It's been over a year since it started, and today they officially decided to call it ALS, regardless. Do you just stop living and start planning your death, or do you continue on... it's really a weird situation. I too am just looking to connect with others who get it.

We received the diagnosis of ALS for my husband on February 25. I am still reeling from the news. I am probably doing too much internet searching to try to understand the disease. However, knowledge is important to me to help me cope. I get angry with the doctor for not getting back to me quicker with answers to my multiple questions. I try to focus on the other positive events in my life. I feel guilty for trying to find pleasure in my life. I am not sure if my husband understands the full extent of his illness. We are trying to schedule a second option out of state. I live in Alaska and making out of state travel arrangements are challenging. I have my own health issues (CFS) which are exacerbated by the added energy expenditures and the emotional stress. Thanks for letting me vent.

I am sorry to hear all your stories, I fully understand, my father has AlS and he has schizophrenia, i am so lost and don't know what do. For what I have asked and researched, the disease is diagnosed by discarding other diseases, doctors don't know the main reason of the disease ... it just arrives... in some cases (but few) it's inherited by other family members. Majority of the cases have 2-3 years of life (ive known ofncasesnthat have lived 8 to 10 years but without any motor skill, just immobile but 100% conscient, the best case to explain it is to look fot Stephen Hawkins) after diagnosed but this does not mean having a good life, people lose motor skills and strength until they are almost immobile. My father has lost arms control and barely speaks, he is just a few days away of using a wheel chair and never walk again. The part I am most concerned is the mental part, doctors say mental health is not compromised, but I need help knowing, how do deal with this? When the person has lost full speaking abilities what do you do ? You just can't just be like "hey dad what's up?" What do you talk about? What do you do when they start crying... this week my father signed what is called in Mexico "early will", this means he does not want to depend on a machine or worst... if he is suffering a family member can decide to euthanize him... and finding out felt like hell, just a huge weight in my chest. Can anyone please tell me how do you just live through this?