Greetings Dear Freinds!
Friday the 17th was a long day…9am to 3pm doing the doctor thing.
Overall they say my decline is still slower than most.
Breathing capacity has declined from 74% last visit to 64% today. We knew this was a topic for discussion, after meeting with the pulmanary specialist last week and going through the sleep study. I will be using a BiPap and will be getting a hospital bed to keep me elevated more during the night.
Because my diaphram is weakening they suggested I get a feeding tube now. Placing me under anesthesia becomes more risky the lower my breathing capacity goes. My swallowing and talking have been affected very little. So, I don’t really need to use it all the time but will sometimes, to get more calories and conserve energy for things other than eating.
I will be getting a brace for my left foot, so I can walk easier without the risk of tripping. I have a portable wheelchair now for outings to conserve my energy, but I will be going to get fitted and begin the process for an electric chair next month.
We discussed resources for a ramp and bathroom remodel. Also talked about implementing Share the Care and Leslie will be working with a mentor from the ALS Association. Looking forward to talking and seeing those of you who visit soon.
Sorry about the frankness of this post but between having blessed times living and spending time with family and friends, the realities that ALS brings deserves to be shared too – Thanks for all your support.