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Originally Posted by hobie1dog

8 Years ago I was out mowing the yard for my son, in the summer because he could not be out in the heat, as he has MS. So I was mowing as usual and went past his mailbox where there was a mound of fire ants and within just a couple of steps my legs were covered with them and suffered many bites so within 15 minutes I was having trouble breathing, and lost my hearing in my left ear,so I called my wife and she said get to the Urgent care as quick as possible. Within two months I had already had 10 falls and was having trouble opening the top of a bottle of water, couldn't unlock the doors on my car, couldn't turn the ignition key. I physically went from a 57-year-old down to a 95 year old within 2 to 3 months. We found out that I had a gene duplication in the DNA for the protein that keeps the myelin sheath on my nerves intact. Within six months I had lost 95% of the nerves from my elbows down and from my knees down. The nerves tell the muscles what to do so losing the amount of nerves, all of the muscles in my arms and my legs basically died off and everything got very thin as you can flop the muscles around on my legs instead of it being firm. They started me out doing my weekly IV infusions which left me very fatigued so I was spending 22 hours a day in bed. After doing those for two years I finally went over to Duke medical Center in Raleigh North Carolina where the guy found out with one blood test that I had the gene duplication, and we came to the agreement that the IV infusions were doing me absolutely no good, so I got to quit doing those which was a good thing, the bad part was that I was going to be like this the rest of my life. Now I am up to 39 falls and pretty much live my life in a power chair as I can just barely walk so I have to use a walker when I try to walk.
We thought it had stayed in my arms and legs until Jan 2020 when I started having trouble running out of breath at the end of sentences so I went to the doctor and they sent me to the hospital to do a MRI which showed that I had a large blood clot in my right lung so they sent me directly upstairs and put me on IV of blood thinners to save me, as they said most the time people die with a large PE if left undetected. That's when they found out with a lung test that the Charcot-Marie-Tooth disease which I have, has gone into the core of my body and is destroying nerves and muscles, so my right diaphragm muscle under my right lung is completely gone. I'm going down 8% every six months and I'm down to only 30% efficiency of my lungs now that the muscles in between my rib bones are weakening and being destroyed. For now my blood oxygen levels are up in the 98-99% level which is great, basically operating on my left lung, but we're monitoring it so that when it gets down in the low 90s then I will have to go on oxygen and then once it gets down into the 85% that's when Hospice will take over.
This is the abbreviated version for the forum

Marty, what a tragedy...
But we're very happy to have you here.

I'm an organ fan also.
Wonderful pics you posted!