Hi everyone!

Well, no throwing up for 2 days now - woohoo! I worked out I need to eat something substantial about 30mins to 1 hr prior, then take it with milk, more food.. and try to keep something small, but often going into my tummy for the next few hrs... lol, will get fat at this rate! FINALLY back to the gym this week, so far managed everyday! I am still so incredibly weak and painful in the legs, but just doing even less than usual, and coping. Still freezing here, hate it, hate it, hate it!

Hope you are all doing well, and wishing you all the good stuff in life!!!!!!

hugs xox

Melissa...just keep doing what youre doing...this side effect usually goes away!
I see my new DR this Friday...hoping for the best, but still distressed to have to go through the whole getting to you process, as well as the upcoming testing.
One funny note to add to the group for a good laugh...if you have sick sense of humor. My last round of blood work came back NEGATIVE...all of it...crp, sed rate, and ana. I guess this means I'm cured, and can hop right back into my former life huh? My body doesn't agree with the results, in fact...been feeling like crap the last week. I just pray my new DR will redo all of them again in addition to the lymphoma work up. I found out an interesting fact though...this round of tests were sent to Utah for processing as my clinic had lost it's local lab funding. We shall see as the saga progresses. Onward...

Good morning, folks,

Back in Los Angeles at last! Oh, man, that trip to New York was really hell, I don't know how I got through that, afraid to post about it on the Parkinsons board, it will really scare them. The headline is: The part of her brain where courage was? It's gone. And I don't always have enough courage for two people. A few years ago, I could cry if she cried... now I do not dare.

MT-- what's happening to your house sounds very psychedelic, so the date of 1982 sounds very appropriate, at that time having walls move around might not have seemed strange to me. Oddly, my experience during those years does help me understand my mom's hallucinations much better, and be patient with them-- though Lewy Body dementia is different from Alzheimer's, as I just learned this trip. (And it is also different from what I experienced in the 70s and 80s, though there are some distinct parallels.) What you say about remembering the past but not the present-- yes, that's Alzheimer's. Lewy Body dementia is characterized by malevolent hallucinations, and that's what happens to some Parkinson's patients. I don't think that happens to us... I think we have to watch for Vasculitis, and our memory and spatial orientation can degrade a bit faster than in other folks our age... when someone tells me something I don't remember, I ask for more details until I DO remember. For some reason, recovering that memory seems important, like it helps exercise some ability to keep it from atrophying, I have no idea if this is actually true.

Another observation: Multitasking makes the spatial orientation problem worse. Driving in L.A. is actually harder than riding the bike through the Rambles in Central Park, because I have to focus on traffic, pedestrians, etc. I couldn't believe I got out of the rambles without a single wrong turn... but I screwed up again on the way to the post office today. (Sigh)

But oh, I am so glad we all have excellent expressive language capability! I have not seen anyone on this board experience a decline in that... and I have a pretty good sense of what that looks like.

Dallas, I am sorry the breakthrough meds are not working. I'm sure you've already tried the usual stuff-- dosing on an empty stomach, removing every possible source of stress, etc. I am just glad you have access to some decent medical care! Hope that fever is declining...

Help, I am not actually a moderator here, just semi-elected as a pseudomoderator. However, your idea is a good one, and tomorrow, when I have a bit more energy, I will e-mail Doug and see if he has any info on Josee. This is really starting to worry me as well.

Matyanka, Mom and I did agree on a few things in her rare moments of lucidity. Fear is the enemy-- and the present is what protects us from the past and the future. I worry a lot, too... what is the procedure tomorrow? Sorry I may have missed it, or forgotten it (FOGBRAIN!) in my frantic reviews of posts on my crap NYC internet connection.

Work, U-Haul has had terrible problems with their trailers and numerous lawsuits because of them... they have probably over-reacted by not renting you the trailer, but on the other hand... those things are not really all that safe. Maybe you can rent a van later or something, but that's a rough break on the move, I'm sure!

Oddman, it is very interesting that your observations about memory seem to check out with mine-- it feels worse to you than it does to other people. Having said that, sometimes it feels pretty bad! My mind is usually racing all the time, but I also have the "file cabinet" problem occasionally. The spatial orientation thing may be worse for me than for you... and again, it's just so spotty. Whatever the neuro says, promise you will not freak out... and we all have to be careful not to start a "feedback loop" where we obsess about symptoms and make them seem worse than they are. I do not, seriously, think this is a real problem at the moment for any of us, just noting it in case it ever becomes an issue. Self-reporting symptoms is not very scientific. It is, however, extremely useful. And the scientists I met in Virginia were certainly drawing all kinds of conclusions from extremely sketchy data! They do, however, take it with a grain of salt... thus, if some test result is off, particularly on the neuro side, the actual impact of it may not be clear cut, etc.

I may wait to draft a formal survey of symptoms until I have started school and know some statistics. But I do have this nagging feeling we should start documenting some of these numbers-- Anti RNP test results, neuro test results, ANA results, body temperature results, etc... before I... er... forget!

Melissa, glad the puking is easing off. Got back to swimming today, and it felt like crap! Zero endorphin rush, just like crawling through mud. I have had some weird gastro symptoms recently, this strange kind of snot choking thing in the middle of the night with an acid reflux kicker... but usually just happens once.

SnapCrack, I know the weird mental backflip when you actually sort of WANT test results to be bad so you think you're not having somatic symptoms and driving yourself insane. I wish some tests-- like the anti-RNP-- weren't so expensive and bizarre. You may find that you actually do feel better in a while, but it lags behind the test result, let us know if that happens... but the results do not always track the symptoms, that's for sure!

Doing okay today... very achy in the afternoon, but nothing I haven't experienced before.

Wishing everyone a great day tomorrow, and apologies for the long post,

--Catalyzt