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 Telling the neurologist how it really is..... 
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Joined: Thu Aug 24, 2006 12:03 pm
Posts: 79
Post Telling the neurologist how it really is.....
I hope I'm in the right place for a problem which is coming up end June. PE is having his yearly visit with the neurologist who, I'm sure, will be giving him the usual spacial, cognitive, etc. tests, to which I am not invited to witness. These days at home have been very difficult-the aides have a hard time getting him up, dressed and walking.( He says he has terrible back pains when they come.) Today I had to do everything, change the bed, feed him, and could see he just couldn't function at all, not even talking so I couldn't communicate to see what was bothering him. I had to feed him, change him, all the rest. And right now, in the evening, he is upstairs in the bathroom with his male aide, laughing and joking together while he gets his shower, . He "came to" this afternoon and said he couldn't remember what happened this AM.

So how can I explain this to the Dr. when all the criteria she bases the diagnosis on are those tests and not knowing what goes on at home?Do you think she has a clue to the difficulty? Up to now, I haven't really bothered to ask her about this behavior. I know it's part of the disease, and I have been able to cope with it at home, thanks to all the advice from this forum.

One time at the very beginning, 4 years ago, when the Dr. took him on, I had written a very comprehensive letter about everything. She didn't pay much attention to it, and I was miffed. I hesitate calling as she has no secretary and you always get the impression that you're bothering, and besides I can't discuss anything with PE listening.

So would anyone have any advice for me when I take him for his appointment and have to sit 20 minutes in a tiny windowless "room" with no magazines while he is doing these tests? Shall I write down the situation giving the "gory details?" Does anyone have such a problem? Any advice is so welcome. Thanks, Dinny Wolff

Mon Mar 29, 2010 12:46 pm

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)

My #1 piece of advice would be: get a different neurologist, with whom you can have a conversation.

#2 is to write a letter again with the gory details, faxing it in advance to the MD and hand-delivering a copy at the time you check in for the appt as well.

#3 is to take some magazines of your own to read in the little room.

Good luck,

Mon Mar 29, 2010 1:39 pm

Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Dinny, I have always gone in with Frank on visits with the Neuro. If I were you, I would ask if I could stay with him. I think it's like letting one of your kids see the Dr. while you wait outside. We no longer go to the Neuro, I couldn't see that he accomplished anything except billing the insurance co. We do see a geriatric psy. who prescribles all the LBD meds that Frank is on. He does talk with Frank alone and then he comes out and I go in. Frank seems to know what the Dr wants to hear, so that's what he tells him and when we get out, he tells me how he really feels. Most of the time he can't organize his thoughts to say anything that makes since, but with others he pulls it all together. :x With this Dr. I email the morning of our appointment and let him know what's been going on, so he has some back ground before he sees Frank.
Good Luck,

Mon Mar 29, 2010 1:54 pm

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Last Christmas I bought an inexpensive fax/printer/copier/scanner combo and have been using it more often than I would have imagined to 'call' my husband's physicians. I fax about problems, responses to medications, questions, etc. before an upcoming appointment. I have a copy of the text and the physician has a copy in the chart. My husband's neurologist loves it and tells me it gives him a chance to consider the problems/issues before he sees my husband in the exam room and, if it's something that needs more immediate attention, he can refer to, and be familiar with, the issue before phoning me. I am concise with my messages.

In the beginning, I did it because of the difficulty of getting a physician on the phone and then playing phone tag. But, as it turns out, it's an efficient way to communicate information.

Mon Mar 29, 2010 2:16 pm

Joined: Sat Oct 06, 2007 4:28 pm
Posts: 781
Location: LA
Post Fax
I also used the fax. At first I was hesitant, not wanting to "bother" the busy doctors but when it became increasingly harder to take Mr B. to appointments, reach a doctor via the "front office", etc. I resorted to a monthly report. Each entry I began at the top of the page listing all the medications he was taking, then I noted the changes of dosage or frequency. I tried to keep it brief on one page. I would tell routine changes and if there was room at the end I would list an amusing or personal event such the death of a brother or our anniversary or note his birthday. The doctors were notified each visit by Home Health so this was just an addition to their professional report. I always asked if they saw anything I was doing wrong and if so please notify Home Health. Once in a while I would get a call from Home Health and/or the druggest letting me know a change had been ordered. I always [in different ways] let them know I appreciated that they allowed me to be a part of the "team" who cared for my dear one. The identical fax was sent to both doctors so they always had the same up-to-date information.

Mr B. was in the hospital the last week of his life and when the Geriatric Psychiatrist dropped in, he and I seemed like "old friends" even though our visits to him had been only a few early on. Our local primary care physician commented on how much the faxes had meant in caring for Mr B. They were both in-the-loop, so to speak, as Robin guided me with arrangements for Post Mortem Brain donation and I made sure that they received a complete report of the results. When the time came for me to let everyone know DNR, no one questioned my decision, they knew I had done everything humanly possible to give my husband a comfortable end of life.

As a result, I have the written reports as part of our history about the waning days of his life... do I need to say what a treasure that has become, neatly copied and placed in a the binder with other journal reports.


"See this lady she's 85 but she's nice", This is the way my husband, Mr B., introduced me in 2006 to the people only he knew. Death due to pneumonia. Lewy Body Dementia diagnosed post mortem at Mayo Clinic in Jacksonville Florida.

Mon Mar 29, 2010 5:43 pm

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Excellent, dorthea! And what a good idea to list the meds/dosages at the top so they physician will know that at a glance. :)

As a home health RN, I used faxes all the time to communicate with doctors, get orders signed, etc., but only recently thought about using it for US!

Mon Mar 29, 2010 6:46 pm

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Hi Dinny sorry for your problems with the dr. I don't know if you live in a place where you can switch neuro's, but if you can that might be a good idea.
Last year before I had any diagnosis for the "small" symptoms my dad was having, I wrote a list and gave it to his dr. I went into his appts. with him and that way the dr. knew a lot that was going on without my embarassing my dad by saying all the stuff in front of him. My dad was very good at "show time" (there are lots of posts on this in the forum) so if I hadn't written it ahead of time I don't think the dr. would have had much of a clue about how bad things were.
Giving a dr. a heads up before you arrive is probably a very wise thing. There are only 2 neuro's where my dad is and he is supposedly seeing "the best one". I don't think much of him, so who knows how bad the other one is. Switching drs. just isn't possible if you live in a place with no med school or large urban area where there are lots of drs. It really puts my dad in a bad place, literally.
Good luck, Lynn

Mon Mar 29, 2010 8:36 pm

Joined: Thu Aug 24, 2006 12:03 pm
Posts: 79
Thank you, everyone, for replying so quickly and what good advice you all have given. Now I know others have experienced the same problem. In our city, there are only a very few neurologists, and PE has already "been through" the ones at the local hospital. Our GP had recommended our present one, who is charming, kind to PE, and I believe competent for LBD, but the family is just not considered in this particular culture (France.). I will definitely take your advice and send a letter beforehand with the "gory details", being as concise as possible. The GP "does" all his regular meds and sees him every three months or so, but naturally really all he sees is show time. The only time he gets to hear the real stuff is when I have to see him for my own arthritis! I will treat myself to some new magazines to help me through the airless and cheerless waiting room! And perhaps we'll just not bother to see her anymore. Dinny Wolff

Tue Mar 30, 2010 2:38 am
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