hello all!

Hello all.

I am new here but not new to mito. My momma has had this disease for years- now her doctors say. I am momma's 'designated daughter'. I hold her coat, purse, bag keep track of walker, cane or wheelchair depending on how she is doing, etc. It was on one of her appts. with her MDA neuro dr. that I was flabbergasted to be diagnosed myself. I have faught it for far too long and have hidden symptoms that I've seen in momma. Now must resign myself to, as I have read many say, "listening to my body speak" to me. My daddy has krohn's disease but he takes wonderful care of momma, we kinda "share" her.

Momma is pretty much bedridden now. On a good day,she'll get up for a couple hours. She has had many "strokes", some were minis & a few were so big that she had to re-learn to swallow. She has alot of memory loss, is very child-like, gastro problems, breathing, severe pain about every day and falls alot if I don't watch her close. She thinks she's gonna make it to the bathroom and will fall. I don't want to list any more because we are so blessed that we still have her with us and I cherish every day and don't want it to seem I'm complaining when I do feel so fortunate.

I'm the oldest of 6, 5 gals, and 1 boy. We are trying to encourage my other siblings to become more involved and to be tested but are meeting alot of resistance. Unfortunately, it is "uncomfortable" to be around and most of my siblings choose to stay away, which really hurts momma. Daddy and I probably overcompensate so as a result momma is pretty spoiled, but that is OK. Anyway I'm really glad to be here and I can't wait to dig in and glean as much info as my 'pea-brain' can hold.

I am living with momma and daddy now, but had been living on & taking care of a 5 acre farm, which completely sapped my energy. I'm learnin to take one day at a time and on bad days take one task at a time. I feel so fortunate that I do have more good days than bad and that there is much more info out there. I have been looking for a support group for a long time and am so glad to have found this one.

a designated daughter