Dear Rhonda & Snowdog: I'm in a much better mood now. I fell down the last few stairs at my house that day and hit my head on the wall (headache was compounded by this man's crunching ... whoever heard of eating hard candy in a library!), the neuro sent the wrong report, etc ... all in all, a day I don't want to repeat. I had my occupational therapy appt which went great (by the way Bed, Bath, & Beyond has a lot of great gadgets to make housework easier). Today I had my first physical therapy appt.
I know what I'm looking at now and how to at least start putting my life back together. I still have only 5 MS lesions on the brain, but neuro now thinks it's more, but the one solid diagnosis is periventricular leukomalacia. It mimics MS symptoms, but will never go into remission. It usually always affects infants and there is very little info out there, except for the same thing that is listed for infants is what my life is now about
. There is permanent damage to the white area of the brain resulting in dead tissue damage. I will always have the weakness, fatigue, imbalance, and cognitive thinking problems. I just have to learn to compensate using the right side and using learning techniques to help with the thought process. I knew the evaluation wasn't going to be good, but I guess the physical therapist didn't know much until he finished. I came in the bottom 10% of use on the left. I guess I can fool a lot of people. I practiced my walk until you can't really tell. My BIG problem is balance. Let's just say that if it wasn't for my cane, I would be arrested for "drunk walking".
Starting Monday, PT is working one-on-one with me 3 days a week. By the holidays, I will the person looking sober without a cane!
He wants to give me a cc of the report to send to SS Disability. Thanks for ya'lls input. I try not to worry my hubby if at all possible. He has a lot to deal with since the hurricane, my problems, and our only g'child was diagnosed with ALL (leukemia) the end of May. She is doing great, could care less if she has no hair, and is responding well. She has an excellent chance of full recovery.
I have always been the "rock" of the family and I guess it's a little scarry for my hubby to see the "rock" chip a little. I'll still shout my independence until my last breath even if it means loosing balance, getting lost, etc. Life just wouldn't be fun without adventure! Thanks again!