Diagnosis confusion, continued

So, to continue -- because Mom was so unresponsive to the various drugs her doctor tried, she now thinks she may have PSD. At least, that's what I'm getting via my Dad. I can't manage to actually talk to the doctor, so I don't completely understand this potential diagnosis.

Either way, the existing neurologist is shifting my mom's case -- without giving us a referral other than "find a Mayo Clinic or metro-area doc who sees these kinds of things" so we were left scrambling to find a new doc. With the help of Lord Google and a neurologist friend, I located a specialist in PSP who is only about an hour or so of a drive from me. So Mom will come back with me in February, and then see this doctor, and then have whatever else test may come along, and stay with me for a while, to give my dad a break.

How I will cope with her and my two primary-school-age kids, I do not know. I certainly can't leave her alone. I'm concerned about her going up or down stairs to sleep and bathe. Plus according to my dad, she is deteriorating further mentally -- he found her standing in the shower, just waiting there, not knowing quite what to do.

What if it's not FLD?

This just in: My mom's doctor now thinks she may have PSP - progressive supranuclear palsy. She simply hasn't responded well to any of the drugs she has been on, particularly Namenda and Exelon. In fact, they made her far more befuddled. I wonder, particularly as so many of the other symptoms, like aphasia and incontinence, are very much FLD.

At first, we were thrilled, thinking that, perhaps, here was a diagnosis far more bearable, treatable and easier than FLD. But no...PSP actually may result in a total loss of speech and mobility far earlier, though she will never have a total dementia, which is good. On the other hand, if she's immobile, wouldn't that be, to her, far worse? To completely realize the situation?

The upshot is her doctor wants someone more familiar with PSP to look at her, and that means somebody at a place like the Mayo Clinic or at least in a major metropolitan area. And guess who lives in a metro area? Me. So mom may be moving in with me for a while.

Details to come as I digest them. Meanwhile, has anyone else come to FLD after a misdiagnosis? Something I'm beginning to understand is that there may not be a black-and-white diagnosis -- it may in fact be a little of this, a little of that.

Another dietary factor study

Same conclusion. HMMMMM.

Dietary patterns and Alzheimer's

I'm still researching the possible link between consuming animal products and dementia. I did find this recent study about Alzheimer's. It supports other info I have come across suggesting that consuming large amounts of protein could contribute to dementia. I don't know how rigorous these studies are, however -- I haven't gone over the methods and numbers carefully. I'm definitely going to keep pursuing; there's enough here to give me pause.

To dream, perchance to live

I just woke up from a dream in which Mom was the old Mom, the pre-FLD Mom who was the most capable person on the planet. In the dream, I was moving into a home that I had pre-inherited from my parents -- or maybe they were moving lots of their stuff after downsizing into my home, which has already happened -- and the rooms were crowded and cluttered.

Typically ridiculously hard-working, Mom helped me clean them all out, then swiped on a coat of paint for good measure.

To say that it was hard to wake up is an understatement. Not that I need the cleaning help, because as everyone knows, I just keep my house basically empty so I don't have to clean much. It's just that I was complaining about the mess, and she was rolling her eyes, and then she jumped to make me feel better. My Dad does that often, and my husband sometimes, too (unless the demand is completely unreasonable, and it often is, I'll admit) -- but nobody to such a degree as Mom.

One episode comes to mind. Mood rings were cool in my fifth-grade class. One day, everyone had them -- except for me. Mom took me to the drugstore after a minimum of whining on my part -- no rings. She went one further and took me to the mall, where we successfully purchased the meaningful piece of junk. She was also famous for buying, at the last minute, something I was coveting on a shopping trip. Or I couldn't decide between two things, and she'd buy me both. "Your mom is a sucker," she'd say. Or, "It's a treat from your mommy. I love you, sweetheart."

I can see this legacy in the way I spoil my own kids, and I'm not altogether sure it's a bad thing.

Coping, continued

I'm sorry my posts have been so sporadic. I have literally been physically sick since September 11 (I remember the date exactly, for many obvious reasons) with bronchitis, a soupcon of flu, a sprinkling of gastroenteritis, and now a bad sinus infection. I think the emotional issues that I wrote about last week are feuling the fire, so to speak, as feeling generally run-down makes me weepy, which makes me feel sicker, and so on. I am trying with all my might to finish up a huge work project, and help my kids cope with the changes in their lives.

Not to mention that I still shamefully feel a good deal of self-pity; as my mom once said, no matter how old you are, when you're sick you want your mother. And that's not an option; I'm completely on my own. My dad couldn't help right now, either.

Anyway, at my most recent doctor's visit for yet another course of antiobiotics, I mentioned all this to her, and then burst into tears for the second time that week (the first was at a parent-teacher conference). Scary things happened; I couldn't breathe, and my focus went in and out, if you know what I mean.

The doctor was properly alarmed, and I said I had been thinking about taking an SSRI for the short-term. She suggested Lexapro. Oh, the irony -- my mother is the one who needs and somehow hasn't been prescribed SSRIs, and here I am, getting a free sample.

I do think I'll try it when I'm feeling better overall, because I need to get over this hump and find a way to cope with the rigors of daily life, because the months ahead will only get tougher. And I will seek out that local caregivers support group. Thanks to all of you who have e-mailed and commented. I feel like I already have a support group. Plus my friends call; the neighbor brought chicken soup; three women have offered to pick up my kids from school, if needed. These nice things make all the difference, don't they?

If anyone has had any positive or negative experiences with SSRIs for yourself, as you go through this, I'd love to hear more.