Hi maryann, I don't think the site will let me PM you since you are a new member. If I can edit/delete this after posting ill give you my email here then delete after you've read it for privacy reasons. This will be a test message first!
Welcome to the forum. I am so sorry you find yourself here. You've posted on your member profile page. I encourage you to post again on the forum proper where more eyes will see your story and provide you a warm welcome.
My husband was diagnosed with ALS Jan 2018, onset symptoms started Feb 2017. He first had cramping in right calf muscle then foot drop. His right leg started wasting away shortly after and he lost 40-50lbs within months. He began to have trouble breathing in Aug 2017 just 7 months after onset symptoms. At first he used the bipap machine only at night but now he's using it almost all day. He also uses a cough assist machine as needed. My husband can still talk and eat alone, thankfully. But he does need a lot of assistance with his basic needs. He has been using a walker for months but his knees buckle and he has fallen quite a bit. We're waiting on a wheelchair. I believe he has limb onset but his respitory issues seem to have started earlier than others. My husband is 35 years old and we have a one year old daughter and almost 3 year old son. I'm still currently working and would like to know when caregivers typically stop working to focus on their PALS?