John, I'm a 42-year-old symptomatic carrier female, with 2 sons, 1 without ALD, and 1 with. My ALD boy, Andy, is 10 and has been in the Lorenzo's Oil study with Kennedy Krieger Institute since he was 19 months old. He's had 8 perfect MRIs in a row, so he's doing quite well. I wish I was. I walk with a cane, mainly for balance. I drag my feet, and noticed a few weeks ago that the right front corner of my left shoe is worn all the way through the rubber. (I wear low-top hiking shoes, for traction and foot support.) I've wanted to get a walker for a long time. In September, I had a pump implanted that puts Baclofen (a muscle relaxant) directly into my spinal column. I take Tizanadine, another muscle relaxant, orally until we can get the pump tweaked just right. I take Tramadol and Methadone for pain. My fingers are numb often. I'm definitely the worst of my family members. Why? I have not the slightest idea. I started noticing symptoms in my mid-20's, like feeling like ants were crawling on my calves, and balance issues.
I've had more bladder and bowel accidents than I care to admit to. I take Vesicare and it helps a lot, but, when I gotta go, get outta my way! I wear leak guards when I go out, but not at home. I'm on Soc Sec Disability. I just take care of my boys, by myself.
Well, take care,