Hi KathyM. I'm sorry you are struggling and aren't gaining much support IRL. I was wondering how you were diagnosed since you have had the full workup. Generally I trust opthalmologists with their cautions from changes in the eye that they see. However, there are no documented cases of this type of amyloidosis-related dementia passing from mother to offspring. That should be good news for you...and maybe give you hope that you don't have exactly the same thing.

I suspect that depression is causing you to feel so hopeless, along with the normal reaction if such a thing is true. Of course, if you have such a disease, generally denial won't help... but it might in this case? I mean, surely set your "affairs" in order, organize your life as best you can, write notes for those who will care for you should you need that total assistance (such as your favorite foods, things you are allergic to... etc, you know? Make a nice book about YOU!)

What have you tried to offset the symptoms..... there are herbs that can help stave off similar ones ( Kelp, Butcher's Broom, Ginkgo Biloba )

Get yourself as healthy as you can, exercise, eat right, go to positive places to draw on spiritually, educate yourself about your symptoms, research free studies and pursue obtaining approval for those tests! Create a support team of doctors, nutrititionists, physical therapists, psychologists and counselors. Let each one treat what symptom they know to treat and maybe together you will have a better outcome than your mom. Please don't assume things... it isn't in your own best interest.

Keep pushing your son to contact the VA and get into PTSD counseling asap. The sooner he's debriefed and begins, the less time it generally takes to find a decent life.

You husband also sounds burned out and may be depressed also... and right now with this Mexican flu going about, he may feel even worse. Find positive affirmations and print them off or write them down and post them around your home...read them...believe them. He may also benefit from counseling; most people do.


AND THEN? Find a life to live NOW while you're still you! WHY NOT?