A quiet Wednesday from the post count, so I'll offer an update. Still here, progression is moderately slow, three years from official confirmed ALS diagnosis this month.
I can stand with balance support and use my rolling walkers in the house, and transfer to the manual wheelchair for trips. I also started using an ALSA loaner go-go electric scooter for outside (tested successfully at the Tennis Masters in Indian Wells in February, and recommended). Weak leg strength has my knees locking, and I am managing with hand support, but no more free hand walking. Finger dexterity & finger/wrist strength is near zero, with only slow two-handed printing and signature. The good news is I have received some physical and occupational therapy visits that provided some good exercises and have regained some balance and finger range of motion, and strength (therapy I have asked for but not delivered over the past two years, and I recommend others to get started with asap). I can also still pedal my stationary recumbent bicycle to improve blood flow and reduce foot & leg swelling from sitting, with a new regime of multiple short 2-4 minute easy pedal events each day. I can still talk, drink, and eat (with assorted hand & wrist splints to help manage utensils). I did have a bad chest cold drop my FVC numbers nearly 20 points in a test in March, but post antibiotics & recovery they came back up.
I am still taking tirasemtiv, provided for free as a benefit of participating in the clinical trial. The drug is one of many that failed to meet the desired FDA trial endpoints, although my breathing SVC & FVC is within five points of the numbers before the clinical trial over two years ago. My numbers are currently better than when the trial ended, and since I began receiving the higher dosage (as opposed to the unknown double blind trial dosage). My ALS Clinic Doctors think the trial failed because of the washout rate (trial population mortality & combined progression side effect dropouts), and inconclusive results at the low dosages. The Doc's have hopes for the new Fortitude-ALS trial, with higher active dosage and expected lower washout rates due to less side effects. I am past the 24 month from diagnosis window, so no more clinical trial opportunities for me (even with good numbers and over two years of collected data to assist an analysis).
Take it easy, but don't give up easily.
