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Dear Susan, I just read your posting in the Nov. 6 PD Digest, about your Mom. I truly hope that things improve; at least, as you say, the neurologist said he's reducing the Artane and increasing the Sinemet, and hopefully that will help your Mom. Sounds like a decent plan of action. I know that this is hard on you, and my thoughts are with you. Perhaps the neuro whom you mentioned, and your Mom's doctor, are indeed doing all the right things. But may I add, as one who has "been there", please do NOT accept any apparently vague and unsatisfactory (in my opinion, based on what you wrote) responses to the effect that there are no other neurologists or Movement Disorder Specialists available, or that the neuro won't be visiting your Mom but you can phone him, and so on;.in my opinion, this is NOT satisfactory. Do NOT let yourself -- or your Mom's absolutely critical medical needs -- be brushed off or not conscientiously attended to. Your Mom NEEDS intense and conscientious care now more than ever. I know that this situation is hard on you, and that you're no doubt doing a great job against hard odds. But please try to boost your courage and strength even more, if you can, and become -- politely if possible, but impolitely, if necessary -- an even more powerful and relentlessly vigorous advocate for your self AND, at the same time, for your Mom! Do you remember the Star Trek episode "Mirror, Mirror"? I see something of a parallel here: In that episode, Captain Kirk and company were accidentally transported into a parallel universe and onto an Enterprise on which the normal method of taking power was to use brute force. The "parallel universe's" Spock was next in line to take over the ship, and then he was to follow the Federation's imperative to enslave or wipe out the Hulkan civilization on the planet below. In the course of the episode, this Spock eventually discovers that the "real" Kirk was not the "bad" (but transported to the "real" Enterprise) Kirk of this other universe -- and this Spock gains a respect for the high prionciples of the "real" Kirk. ... Well, I've told a long story here to get to a short but important point: When the "real" Kirk & crew are about to be safely transported home by this Spock -- in whom the "real" Kirk has confidence -- the "real" Kirk urges this Spock to take charge of this Enterprise but for purposes of peace. Spock replies that this will be difficult. Kirk replies that "In every revolution there is one man" who can change the world; "Be that man, Spock. ... Push! Push until it gives!". So may I say to you too: You can do it! Push! Push until it gives! The obstacles may seem tough -- maybe more so because they're also involve intangibles and emotional interactions, as you're dealing with people who have authority, power, specialized knowledge, and egos, to deal with -- not to mention that they may also have other priorities in mind. But do NOT let any of that put you off. Push until it gives! Be an activist-advocate: Press these people for specific clear answers! You DO have the authority to demand that your doctor bring in a Movement Disorders Specialist, even as a consultant. Is your Mom being seen by an Infectious Diseases Specialist? If not, you DO have the right to push for one to be brought in. If your Mom's doctor or neuro are so puzzled about your Mom's deterioration and he/they suspect an infection, WHY are they then not RUNNING to get an Infectious Diseases Specialist to take action to find out what's happening? You DO have the power to request that one be brought in. As you yourself know, this is a critical time -- and it is NO time to take a back seat and allow anything that seems unsatisfactory to you to go unchecked. I was challenged so terribly by my own Mom's situation in the hospital -- and, on top of that, by the same sort of thing that it seems you are coming up against, including the ARROGANCE and/or "nonchalantness" of SOME doctors & medical personnel -- that I doubt that I'll ever be able to forgive myself for sometimes being so pressured by all this that I decided, on some occasions, "Well, after all, they are the doctors, maybe they DO know what they're doing better than I." I do not profess to "know-it-all". However, what a mistake it was for me to have thus allowed myself, on various of those occasions, to be cowed by the "authority" and attitude of some of these people. Biggest mistake I have ever made in my life. Or my Mom's. Fortunately, you are yet in a position to push for actions that hopefully will improve your Mom's situation as much can be done -- even if it's just to press your Mom's doctors for, at the very least, a good and specific plan of action. As my brother-in-law, who heads a large company and knows how to lead, would ask some of the docs in my Mom's case, "What's your strategy?". A good, direct, specific, simple question that demanded clear & sensible answers. Why not try it? Having said all this, may I add that I would assume that the hospital, if it's a good one, is likely running loads of tests all the time and tracking everything they can. And maybe they are indeed doing everything right. But may I still urge you to press the docs & the personnel there to make your Mom's care a top priority, and be sure that no stone is left unturned. I still also urge you to bring in a good holistic nutritionist. There could be many reasons, of course, for your Mom's condition, as you've described. But one possible reason for some of this -- or a factor possibly contributing to these problems -- could well involve the issue of whether she (a) is being given proper nutrition and (b) whether her digestive system, under current conditions, is able to fully absorb whatever nutrition (and meds) that she'd being given. A good nutritionist, I suspect, may be able to help determine these things. Well, in any case, I'm sure that I and many other PD Digest subscribers are with you and praying for the best, and you have our support. -- Best, and hoping all works out well, SJS 11/7/98 ******************************************* (COPYING:) Date: Fri, 6 Nov 1998 15:21:16 -0800 From: Susan Tomlin <[log in to unmask]> Subject: hi Hi, Just got back from seeing mom at the hospital. She's gone down considerably just since the last time I had seen her. I almost didn't recognise her. She looks like she has lost weight. She looks so gaunt, so pale, her expression on her face, her eyes looked so different. Her voice is so soft and her speech has changed. When she spoke she could only manage three words then there would be a long pause then three more words, but she'd never finish what she was going to say. She can't remember what she is trying to say. She reminds me of those pictures of those people in those concentration camps during the second world war. I fed her some lunch. She ate the soup, the broccoli, lime sherbert, and a carrot cake cupcake that I made for her. When I feed her she looks at me with an expression of a small baby like curiosity. I FINALLY got a hold of Dr. Tessler ( mom's neurologist and he just phoned). So I told him about how mom had gone down, everything that had happened ie, freezing, feet sticking to the floor, slowing down more,etc...so he phoned Dr.Swift and he wants mom to go back on sinemet and reduce the artane and maybe try some other drugs. He said artane can cause confusion. He said there are no other neurologists (in this area? ) and he can tell by what I have told him what the problem is and all they can do is try the different meds and wait. He said it was a little unusual for someone to go down that fast, but it could happen ( he did mention infections ). I could phone him if there were any problems, but he couldn't come to see my mom. STUPID hospital priviliges ( sp ) again!! I will be going in to see mom tomorrow and help her eat something. When I came in today mom had given up opening some sherbert from her lunch tray and was struggling to put it back on the lunch tray. No one was helping her to eat at all!!!!!! The homemaker is supposed to arrive soon and i am going to send her out to see if she can get me a couple of Rubbermade juice box holders with built in straw. The hospital doesn't have much orange juice so I though I could make some here and take her in some to drink and then take the container home to wash it. Take care Bye for now Susan =========================