My husband was 37 years old when he was diagnosed with ALS in 2001. We too were devastated, and I can understand where your hearts are. We too have 3 children. It's a TERRIFYING time, I know that and I will keep you in my prayers. My husband is now in a power chair full time and on a ventilator. He basically can't do anything for himself anymore, however, he can still speak and swallow. The things I know now that I wish I knew then were:
1. Don't look at ALS like it is a death sentence. When my husband was diagnosed I woke up every morning terrified that it was going to be a horrible day - my head would be spinning - dear God what is going to happen today - I can't handle this - it isn't fair - ok, he just said something about his leg hurting - is it in his legs already? It was insanity. Someone finally told us something that stuck in my head: No one knows the future. No one can predict when anyone will or will not die. I've known perfectly healthy people who woke up one morning and were dead by the end of the day - not from ALS or illness, but accidents, cerebreal hemorrhages, heart attacks, etc. Young people and old people, no one is exempt from something horrible happening to them and ending their life before they're ready. No one can predict your future or anyone elses. No one will be able to tell you how fast or slow you will progress. I guess what I'm trying to say is that No One Is Guaranteed Tomorrow, whether they have ALS or not. One thing that I have learned is that EVERYDAY should be lived, not just existed through, but LIVED. If you have been waiting to take that great holiday, don't put it off, TAKE IT NOW. And when you're done with that holiday, start planning a future one. Be sensible, but don't let ALS rule your life. Keep control as long as possible.
2. Knowledge is power. Attend support groups and develop friendships with people who are positively living with ALS. My husband had a hard time in the beginning accepting his diagnosis, didn't want to attend support groups (he didn't want to see people on ventilators or in wheelchairs) and only recently in the past year or so began reaching out to others. He now has a whole community of friends that not only have helped him, but that he has helped as well.
3. Don't live your life in absolutes. My husband always said that when the time came he absolutely would not go on a ventilator and would not get a feeding tube. Well guess what? He has both. When the time came, he decided that he wasn't ready to leave us, so he adapted. He got his feeding tube and earlier this year decided to get a trache and vent before his breathing became too compromised (thus not having to be trached and vented in an emergency situation). And as his disease progressed, we learned to handle one thing at a time. When you lose an ability, you grieve it, adapt to the new situation and keep moving on. Don't concentrate on what you have lost, concentrate on what you STILL HAVE and be grateful for it. I hope I'm not sounding harsh, I don't mean to. I just want others to know now what I wish we had known then.
4. Get adaptive equipment before you need it.
I hope this helps. God bless all of us - the caregivers and most importantly those who have received such a tough diagnosis like ALS.
