Recent content by CtWayne

Mary was a serious nose blower and now weak cough , using machine -no longer can blow nose.

Our thoughts and prayers are with you

Wow I love you all for this forum. Mary is at our 3 yr " anniversary" I husband and cals feed clean dress etc , you know. Kay's post hit a heart string as we talk about the end. The line has moved as we approach and ativan and morphine are a blessing. But so is a day like yesterday on the deck...

D we are in the same boat. Mary decided to quit Radicava after 19 months when she progressed to basically quadriplegic and cough assist and Bi-pap. getting in the car to infusions 1 hr away here was more difficult than assumed benefit.

Hi Lauri thanks. So yeah we have Hospice lined up and the will and advanced directive done and she is OK with that.

V weirdly no not familial it was her husband and not a blood relative, I think, they may still marry their cousins in RI tho ! :) She is a sporadic case and his was too but National ALS as well as all the Drs & Rns find it a bad coincidence. Thanks for the welcome. Getting BiPap soon.

First post after I signed Mary my (pals) up and have been reading your posts, I may cry, really for the first time, Wow people who are living the same nightmare and actually understand. We are almost 3 years till we knew something was wrong and then a month of Dr"s and finally emg and nerve...