Fair Warning: (This is long and rambling, so I apologize in advance and warn you in advance if you don’t have time to read a long rambling note.) LOL. ~L
As you all know, my Mom didn’t like the diagnoses of two different neurologists who said “CBDG”… one who wrote a book on the subject even. She chose to get another opinion by going to several other doctors and then finally was able to get into “Shands” in Gainsville, FL. In her opinion, they are the only ones who would know better. They said that they “doubt” the CBD diagnosis and that’s all she needed to believe that she will be healed completely.
I’ve now lost count how many scans of all sorts that she’s had and each time she goes there, they give her a completely different “diagnosis” . Each diagnosis seems more and more “positive”, even though she steadily is going downhill. The only diagnosis that lines up perfectly, in MY opinion is the CBDG or PSP. That’s the only answer that makes total sense. Anything else is “… it COULD be related to something like… except THIS part…” or “…it’s sort of a little like this and a little like that…”
I’m hearing “…similar to Parkinson’s, but not…”, “… sort of like mini-strokes, but nothing showing on the scans…”, “…. sort of like Alzheimer’s, but not…”
Today’s latest (that she sounds almost excited about… in comparison…) is that there’s a mention on the DATscan report of “Essential Tremors from Parkinson syndrome”. She’s like, “See? That’s all it is. It won’t get worse.”
Of course I can’t see or read any of these reports or get to talk to any of the doctors that she’s seeing, so I’m totally in the dark except from her perception and her interpretation of what was said or what the report said.
I’m wondering if anyone else out there is going through or has gone through anything like this with their loved one? I mean, I know most of you have direct contact and close working/relationship with the person you care for, but I wonder if your loved one is still dealing with so much denial? I wonder now if it’s just ME… maybe I’m too pessimistic and it’s not all that bad like she thinks. I’m starting to feel like completely giving up as far as supporting her… mentally anyway… I mean, why bother doing all my focus, research, an care about CBD if she doesn’t have “anything”. Why do I even care, at this point? 😦 Afterall, it’s nothing.
I’ve been calling anyone I can think of there in Orlando trying to get her services and help…I told her that I’d like her to consider getting one of those “Hover round” things, but she said that she doesn’t want to “take that next step”. I guess that would be admitting something. She doesn’t seem to really want help, even though it sounds like she really, really needs help. My sister got her one of those emergency buttons for when she falls, but one of the last big fall was in the shower when she had taken off the button, fell backward into the shower and laid there for more than an hour before she was able to finagle her way out of the tub and up.
She’s by herself, she keeps falling backward and taking really hard hits, she can barely dress herself because her left hand no longer works (Alien hand), she can’t walk her dog (throws her delicate balance off) and my sister took away her car because she was getting too dangerous on the road, so she can only get places by walking or taking the bus. She can barely get groceries for herself and has been eating a lot of stuff like crackers… light to carry and no prep or heat needed. 😦 She’s lost a LOT of weight.
Am I just driving myself crazy?? I can’t do anything, change anything, or fix anything, so should I just stop worrying about it and let the chips fall where they may? I’m making myself sick with worry and can’t do anything about it.
If you’ve read all this… bless you. And, thank you. ~L