Hi. This journey began about in 2012 when I started noticing my husband doing things in a different way. Picking up coins or paper was no longer done with his fingertips but instead by pulling it to an edge. He could no longer grip things or keep them in his grip and dropped things like plates, cups, and glasses. HIs fingers did not curl around what he had in his hand. He could not make a fist. He could no longer shoot his compound bow and eventually could not pull the trigger on a gun or use a fishing pole. Being a hunter and fisherman since a young boy, this was very difficult for him. Hunting was his hobby, his pleasure, his peace, his connection with nature and God. He loved being in the woods or on a bank or lake a fishing. After seeing a handful of doctors and some tests that showed nothing, we were sent to KC Medical Center. A very expensive blood test was done along with a EMG test for neuromuscular abnormalities. The diagnosis was Inclusion Body Myositis, a rare adult onset Muscular Dystrophy. IBM is an inflammatory muscle wasting disease that is progressive and since 2012, we have seen it's progression and evidence of destruction in the inability to do many daily tasks. There have been many falls, due to weak quads, knee buckling, weak ankles, foot drop, uneven ground, or stepping on anything that causes loss of balance. We have adapted some things in the house and will probably change even more as needs change. We installed a bidet with a pedestal base and handles around it while he can still keep his independence. He uses a shower chair and I assist his showers, washing his hair, drying him and getting him dressed. I help put his socks on and he wears AFOs in his shoes for foot drop and ankle support. I change them to gripper socks so he can walk around the house as the AFOs make his feet and legs sore after a while. We purchased a power lift recliner a few years ago when the quad muscles became too weak to allow him to stand. He no longer can do any steps or stairs and uses a rollator to walk with. We recently purchased an adjustable bed so that it will sit him upright making it easier to get out of bed. As his caregiver, I see the things he struggles with, the things he can not do and I am aware of the things he would love to still be able to do. I don't see a lot of the emotional or mental struggles he goes through as he keeps them to himself, expressing very little, mostly frustration over me having to do something he feels he should be doing. IBM is a horrible disease that robs a person of many things, too many to list, but also robs the spouse, partner, and loved ones. Life is too short to begin with and the stealing away of the mid to senior years is very ironic. The things we planned and dreamed of doing in these years of retirement have been greatly changed. My husband gave many healthy years to a well paid job that supported our family but took a lot of his time and life as he worked swing shifts, week-ends, holidays, and 12 hour shifts, on concrete floors in a hot mill making roofing shingles. This is a time in our life that we wanted to be free to travel. He dreamed of hunting on the 50 acres of land we built a home on 12 years ago. Now he can't walk the land or use a gun. He has very limited use of his hands, legs, feet or arms. This disease is progressive. There is no medication or drug for it. There is no treatment. There is no cure. There is some  research dedicated to it recently. Thank you for a place to talk.