Base

My husband, David, was dx w/ ALS March 27, 2022 & I am his sole caregiver, except for his sister who comes down on Fri pm., spends the night & leaves Sat pm. We thought he had carpel tunnel in both hands from 24 yrs as a Railroad Engineer & possibly a pinched nerve in his neck. This started Summer 2020. Skip through seeing GP, who sent us to Neurologist, went to Mayo Clinic in Rochester, MN for definitive dx, & due to closer proximity, we’re a part of Duke Medical Center’s ALS Clinic & couldn’t be happier. They’re phenomenal & highly recommended. At this point, my husband has a lift chair, Hoyer Lift, transporter, regular wheelchair, waiting on Powered Wheelchair designed specifically for him, external vent, suction machine, waiting on cough assist, & among the daily grind, we find “God things” multiple times a day that keep us going. We built our forever home in early 2020. Completely open concept, huge Master shower w/ bench, separate water closet, one level, gated lake community w/ great neighbors & friends, etc etc. We were just waiting for David to retire at age 56 w/ 30 years in w/ CSX Railroad. We were continuing to check off items on the Bucket List & looking forward to the future. Obviously, God knew the “real” future. Our lives came to a screeching halt, but He still provided.  David’s upper body has been affected mostly at this point. Does have diminished  strength in lower body, but can walk w/ assistance. Has drop foot on right side, so he basically shuffles. No issues w/ swallowing or talking, but can’t feed himself, no use of either arm or hands. Drinks using bending straws. Holding his neck up is close to impossible w/out assistance. We use a travel pillow instead of the very uncomfortable neck brace. I bathe, shave, brush his teeth, clothe, feed, clean him after bowel movements, help him w/ urination. I can get him up from his lift chair & he can shuffle to the restroom on a good day & urinate. Otherwise, we have a urinal. We have a toilet lift & on good days, we use the same process of getting him to, on & off the toilet for bowel movements. Some days, we have to use lift chair to get him to a wheelchair, then assisted to toilet. We live day to day, sometimes hour by hour, but we’re financially blessed to obtain great medical care. David is on Relyvrio. Duke gets all the accolades for the quick response & Rx for this drug once it was approved by the FDA. Since Nov 2022, we seem to be on a downward spiral, but we’re praying for a plateau soon. We have Home Health: OT, PT, RT, Nursing care. Private pay care for me to get to my own Dr appts & such. Nourishment has been a big issue for us. David’s never been a big eater. He is to have 2400 calories/daily. This never happens. If we get in 1600-1750, we’ve done well. We have a consult w/a surgeon this week to discuss the supplemental feeding tube. This all depends on his breathing. Even though David doesn’t feel diminished in his breathing, it is happening. We have to be at 50 before the surgery can be done. We were at 49 in late Feb, so that’s the reason we have the ext vent right now. Our last qtly visit to Clinic was late Feb. prognosis: 9-12 months. Yes. I knew we were headed in the wrong direction even though we claw & fight w/ all our might & faith. Since David’s dx, he won’t leave the home unless it’s for a Dr appt or our qtly visit to Duke. He will sit on the back porch, but that is it. This has been extremely difficult for me. We were very social pre dx. There’s something going on in the n’hood weekly, there’s family get togethers & he won’t go. He won’t admit he’s embarrassed, but I believe to a point he is, but I think he was such a strapping, strong, independent man pre dx, he can’t completely let go in public like he will at home. Thank God, we have a n’hood where they come visit us. We eat, drink & fellowship. Making the most of a horrific disease. We must make the most of everyday we have left. So much love and admiration for all those fighting this battle, those with ALS & the caregivers.