Joined: 02 Aug 2008
Posts: 3

Posted: Mon Aug 04, 2008 11:47 pm Post subject:

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I would love to find a neurologist who had good knowledge of dementia. We live in a small town and there are only two nearby. The one we are taking my mother to now is pretty good with PD, but seems not to know what to do with the LBD. I asked her to prescribe Exelon a couple of years ago and my mother did great on the lower introductory dose, but became very confused with the higher therapeutic dose. The doctor took her off of it altogether after that. I asked her if we could not keep her on the lower dose and she just said she preferred not to give it to her. I am going to address it again when we go to see her tomorrow. If she refuses to give her anything to help the dementia, then I think it is time to look for someone else. I just don't know how to find that someone else. Any suggestions?

It would seem you only have two choices of MDs.

I'd suggest you try to educate the first MD. If she isn't not interested in the education, then move on to the second MD.

Give the MD the Boeve "Continuum" paper, and read it yourself. It's a good standard for treatment in LBD. See:
http://www.lewybodydementia.org/docs/DL ... nuum04.pdf

There are other good articles on the LBDA.org website and here on the Forum that are appropriate to give to MDs.

I'd also suggest going through the first page or so of posts in each of the sub-forums as many topics will be of interest.

And this recent post by Many Moons seems to be right in line with your question:
http://www.lewybodydementia.org/forum/v ... .php?t=918

Where is the nearest university hospital to you? One with a neurology department that either specializes in movement disorders or aging and memory.

We found my sister a local neurologist that was willing to work with the specialty neurologist at the University of California, San Francisco, Aging and Memory Clinic. Many times the local neurologists are overwhelmed with their general practice and just can't stay up with what's current in LBD. The specialist sees her every six months and the local neurologist or his staff every three months or whenever we need them. The specialist sends a report home with us which I FAX to her local doc. That way everyone is on the same page with regards to her care and there's no big gap in waiting for written reports.

I think CA meant to post this reply here:

From CA:
Thank you. We do have The University of South AL medical school here. The doctor who heads up the PD Assoc. told me to avoid it, though. He didn't say why. I am thinking I will see if our family practice physician will prescribe for her if I tell him my dilemma. He is a very nice guy and easy to talk to. I am sure he would accept Dr.Boeve's paper and would read it. If he doesn't feel adequate to treat it, I guess I could call the hospitals over in Mobile and see if they could suggest someone.

Oh, dear. Where did that reply end up?

CA -
It's in MM's topic:
http://www.lewybodydementia.org/forum/v ... .php?t=918
Robin

I am wondering if others have had this situation. My LO sees a neurologist and a GP. The GP flat out told me that because of the DLB my LO no longer needs lab tests done. Like cholesterol screening or blood sugar screening or any lab values.
My husband really likes the GP because he doesn't ask "silly questions". Should he be having lab values
Mary

Your GP sounds sensible to me. A lot of these tests are simply 'CYA' for the doctor. We all need to eliminate needless medical interventions for the comfort of our LOs as well as to help control costs.

Mary,
I suggest you ask the neurologist about it to get another MD's view.
Robin

If your LO is diabetic, then Hgb A1C would make sense. It partly depends on age. My stepson is a surgeon and his wife is a neurosurgeon and they do not believe in routine cholesterol screening and statin drugs in patients over 80. For my husband [who does take Lovastatin] it makes sense to do a basic blood chemistry with renal & hepatic function due to his medical history and medications. At his age, continuing to do an annual PSA does not. The keyword is 'routine'. A particular patient, due to his/her medical history may need specific labs.

Often, a physician will continue to order 'routine' labs unless otherwise directed by the patient or his family. When I asked my husband's GP whether annual PSA & triglyceride testing were still necessary, he agreed that they were not and discontinued them.

I might add that I have asked my physician to no longer test my cholesterol, as mine has always been good and I would not opt to take statin drugs, at any rate. Most people are reluctant to question medical interventions and tests. In my opinion, they need to start.

My dad is not having any more routine tests like PSA, cholesterol, etc. He has refused to have any more MRIs, CT scans, etc. which might tell us more about what is wrong with him. He doesn't want them and there is absolutely nothing we'd do, like have surgery, add more meds, or anything if the drs. did discover something like a tumor. He is 88, has no quality of life, and what is the point of spending hundreds, thousands of dollars? For what end? So, for us, no, we will not do any more of that.
Once I reach a certain age and/or level of ill health (haven't decided what that is yet) I will have no more mammagrams, colonoscopies, pap tests, etc. I am no longer scared of dying of heart disease or many other things. I am terrified of developing dementia and macular degeneration, so I hope I don't live long enough that those are issues.

That's the way I feel, too, Lynn. Give me a good, quick and fatal MI over cancer, dementia, emphysema, or other lingering deaths. A stroke might be fatal but more often than not, it's just disabling and I don't want to burden anyone else with my illness.

My LO is 72 and other than LBD is in fairly good health. No diabetes. When he had his yearly exam this month the GP marveled at how well my LO was doing. (Of course LO is good at show and tell and was able to stay alert during his exam). In one breath the GP said how great LO was doing and next breath said he no longer had to be checked for chloresterol or any other blood tests. I can see why no more PSA tests because LO has an enlarged prostate but a prostate bx a couple years ago indicated no Ca there.
The GP stated he had never seen anyone with this dx have such a dramatic improvement. I guess I feel like they have given up on him and I want to keep him a long, long time. We still enjoy each others company and I would rather have him like this than not at all.
Mary

I don't think it means they have 'given up' on them when they don't run all the tests they would on a younger patient. It just means that there are some physical issues for which intervention, even if the diagnosis is made, would not be prudent.