Your not sett up for pm's. I want to send you my email and phone. My speech is bad but i can text. Mad Beach is my old stomping grounds. I'm not sure how you set up contact info but it should be easy. would love to meet
Welcome to the forums. I'm so sorry about your husband's diagnosis. Do you go to an ALSClinic?
You'll find a wealth of info here on the forums. Try the search engine to find older discussions on topics that you're interested in.
To start a thread you need to go to the forum that you want to post in (ie. newcomers or CALS support group) and click on the "new Thread" button at the top of the page on the left hand side. The only people who will see what you posted in visitor messages are those who actually"visit" your page.
Good luck, Deb
FVC stands for Forced Vital Capacity. It's a measurement obtained by the respiratory therapist or Pulmonary Doc and used to determine the need for non-invasive ventilation.
Hi Everyone. It has been a rough month since my husband was diagnosed. After months of testing and saying NOTHING - the neuro diagnosed him with ALS. It started in his arm and now it is almost completely useless. (Although the limbs don't seem to be as affected as the bulbar symptoms) In the last month - the bulbar symptoms have come on with a vengeance. Choking, spitting, drooling but worse - breathing issues. In the hospital now because of breathing difficulties. (thought he was having another heart attack - it is very very painful).
The ALS seems to be moving to his feet and ankles. He says it hurts him. I thought after reading everything that it would progress - like one day he would just wake up and the limb wouldn't work any more - but it really doesn't happen that way. (He says he feels his muscles kind of "draw up" at night). If you all could help me to understand how it really works - and what to expect - I would be very thankful.