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My PALS was just formally diagnoses with Bulbar ALS back in mid summer, but it was suspected for almost a year now. Still fully ambulatory but with a PEG tube (unable to swallow anything), very difficult speech issues, and deteriorating respiratory system but with only NIV respirator. She still can walk level over 2 miles, quilts and reads voraciously. Best of all, she wakes up each morning with a smile on her face, an “I Love You”, a steady stream of email, snapchats, etc, and it continues throughout the day. She is a person of faith and has many emotionally close (but physically distant) family who support her by phone and social media.
In spite of knowing of the challenges and the fate she faces, we are determined to face them together and are more in love than any time in our 52 year marriage. She is literally an “angel in waiting”.
So in short, love conquers stress (so far).
My wife’s diagnosing neurologist prescribed rilozole immediately after diagnosis, 1 Tab 2X per day. On her first dose there was immediate dizziness, fatigue and facial numbness which required laying down. All those effects wore off about an hour later but repeated after each dose. Over the next several days, mucous seemed to increase and to become more ropey which aggravated swallowing and coughing and subsequent reduced oral nutrition and hydrating liquid intake. At the initial ALS Clinic consult about a week later, the attending neurologist there discontinued the rilozole and put her on atropine sulfate drops to counter the ropey mucous. This was successful and we are now awaiting suction/cough assist/APAP equipment.