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 New member - NH 
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Joined: Mon May 10, 2010 2:37 pm
Posts: 8
Location: West Ossipee, NH
Post New member - NH
Hi to all, new to the forum. My wife Karen has recently been diagnosed with LBD after initially being diagnosed with PD. Karen's history, to the best of my memory, and this is a very brief synopsis..

Karen has a history of RA (>25 years) which is now being treated with Orencia infusions. RA is finally stable for what that is worth.
She first had indications of memory loss (names, locations, etc) starting about 2-3 years previous. This has gotten progressively worse

Karen was having problems with shortness of breath and weakness which were investigated and no prognosis other than it must be RA causing the symptoms.

This progressed to a diagnosis of "essential tremors" with her first visit to a Neurologist. A year later this was updated to Parkinson's (09/09). She was started on Sinemet (hallucinations really bad, motor skills greatly improved), switched to Requip (motor skills declined, hallucinations continued). Back to Sinemet with Seroquil (motor skills improved, no impact on hallucinations).

Admitted to hospital for severe delusions/hallucinations. meds adjusted to low dose of Sinemet with Zyprexa. She stabilized on this with continued bouts of delusions and
hallucinations.
After being released I took her to FL for 2 weeks and when returning we stopped in Baltimore to visit her son. At this point she was readmitted to the hospital there for an irregular heartbeat. She was finally stabilized but her delusions/hallucinations went "out of control". Diagnosis by a Neurologist at GBMC (Greater Baltimore Med Center) was for LBD. She was immediately taken off all Sinement and Zyprexa.
After being released and returning home she was seen by the local psychiatrist who doesn't agree with the LBD diagnosis.
She has been put on a low dose of Seroquil and has been stable. Motor skills bad, cognitive skills low and needs lots of assistance.

Now waiting for the next visit with her local Neurologist to see what is going to happen. Amazing the Catch22 one can get into with doctors and diagnosis over LBD and PD.
At this point I have to be with her constantly. I do have a person visiting twice a week to assist. POAs have been addressed which saved the day in Baltimore as they were starting to argue with me until I pulled out the paperwork (I fortunately had access to a copy).

The next steps are unknown. This is unknown territory for me.


Wed May 12, 2010 12:49 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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Hi Merle,

Sorry to hear about your wife. A key medication you haven't mentioned is an AChEI such as Aricept, Exelon (the patch may be a good option), or Razadyne.

Read Dr. Boeve's "Continuum" paper on lbda.org. It provides a treatment regimen for the various symptoms of LBD.

Do all the MDs either agree that it's PD or LBD? If so, it doesn't matter what you call it as you are treating the symptoms. In your wife's case, it sounds like the most important symptoms are: psychosis (hallucinations and delusions) and movement problems. I think the only way to address the movement problems are with Sinemet.

Also read "Mind, Mood & Memory," available for free from NPF's website (parkinson.org). It has a great discussion of the balance between psychosis and movement problems.

Good luck,
Robin


Wed May 12, 2010 2:00 pm
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Joined: Mon May 10, 2010 2:37 pm
Posts: 8
Location: West Ossipee, NH
Post 
Robin

Quote:
A key medication you haven't mentioned is an AChEI such as Aricept, Exelon (the patch may be a good option), or Razadyne.

They are not mentioned since those have not been used.

I tried looking for the "continuum" paper but no luck. Where is it located?

The Neurologists all agree, the head doc doesn't agree.

Merle


Wed May 12, 2010 4:40 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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Re: finding the paper
Go to lbda.org. Search for "Continuum Boeve." His 2004 paper is the first one that comes up in the search results.


Wed May 12, 2010 4:44 pm
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Joined: Mon May 10, 2010 2:37 pm
Posts: 8
Location: West Ossipee, NH
Post Boeve paper
found the document, thanks Robin


Wed May 12, 2010 7:58 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3436
Location: Vermont
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Hi Merle - welcome and sorry you've had to join us here. Don't know if you've taken your wife to the memory clinic at Dartmouth Hitchcock, but that might be worth a try if you haven't. I've spoken with people there several times and they seem like they have their act together so I'd recommend checking them out. If I could figure out how to get my dad from MD to VT, where I live, I'd love to get him to the Dartmouth memory clinic.
You are among well-seasoned friends here, so don't hesitate to ask questions, vent, provide info., whatever helps. There are a lot of wondeful people here, and I am so thankful for this forum and the chat. Lynn


Wed May 12, 2010 9:29 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
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Someone gave me a "very high" recommendation for an LBD-savvy MD in Dover, about an hour from you:

Gary Usher, MD
Dover, NH
(603) 749-0913

Robin


Thu May 13, 2010 4:27 pm
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Joined: Mon May 10, 2010 2:37 pm
Posts: 8
Location: West Ossipee, NH
Post Info
Robin,
Thanks for the Doctor reference. Funny thing - Dr Usher is Karen's Neurologist. The last time we saw him (just before leaving for FL) he suspected LBD. The doctor in MD (Baltimore) confirmed his suspicions. Karen has an appointment Monday with him.

Lynn, thanks for the lead on Dartmouth-Hitchcock. BTW, if your dad is near Baltimore you might want to look up a Dr Howard Moses. He diagnosed Karen at GBMC (Greater Baltimore Medical Center). He is chief of Neurology. An old crotchedy guy who is brilliant. He came in and talked to Karen for about an hour. his comment "yep, I know what is wrong with her, she has LBD. Take her off all the meds she is on now" He sent all his findings up to Dr Usher. His comments about Dr Usher - "He misdiagnosed her, but I will give him credit, looking thru his notes he finally correctly diagnosed her with LBD" Of course we were not back in NH.....


Thu May 13, 2010 5:09 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3436
Location: Vermont
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Unfortunately my dad is over an hour away from Balt. and the transportation to get him there to see someone is thousands of dollars. Since he is so debilitated at this point the diagnosis is almost a moot point, although it would be kind of nice to know (as much as they can actually KNOW).
Best of luck with your LO. Is there an LBD support group where you are in NH? I don't know of one in VT. Lynn


Thu May 13, 2010 5:59 pm
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Joined: Mon May 10, 2010 2:37 pm
Posts: 8
Location: West Ossipee, NH
Post Karen's status
Well, Dr Usher confirmed LBD and started her on Aricept, small dosage initially since she is so sensitive to the drugs. She is also on a small dose of Seroquil.

She is still having the "long list" of symptoms although they haven't progressed to major issues as when she was on the Sinemet and Zyprexa.

Still needs constant care and assistance. Started researching Nursing homes in the area for the future.

Mentioned Dr Boeve's articles and Dr Usher stated he knew of him and some of his patients have gone to Dr Boeve. He noted the Dr Boeve is very hard to see as he is so busy. He thought that the notes he received from Dr Boeve were some of the best he has seen.

I think Karen will get good care although there just isn't a lot that can be done.


Wed May 19, 2010 6:26 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
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I know how you must feel. My husband has seen three neurologists and none of them has told him what he wants to hear. :(
----------------------------------------
Pat [64] married to Derek [80] for 34 years; husband dx PDD/LBD 2005, probably began 2002-2003; Stage 3 or 4, depending. I am his caregiver at home.
----------------------------------------


Wed May 19, 2010 7:01 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
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Certainly prescribing the Aricept makes sense. Fingers crossed that it helps some.

You might be interested in reading this statement by Dr. Boeve as to the idea that quality of life for someone with LBD can be quite high if they receive comprehensive treatment:
http://www.lbda.org/feature/2126/lbd-re ... proach.htm


Wed May 19, 2010 7:16 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3436
Location: Vermont
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Hi Merle - is Dr. Usher at Dartmouth Hitchcock? Someone at my support group this morning is taking her husband to see a neuro at DH next week because she is really unhappy with the neuros and the memory center here at Fletcher Allen. I'm trying to help her with anything I can.
I wish you a lot of luck with a diagnosis. I think we are at 12 possibilities at this point for my dad. Do you have a support group where you live? There are some good ones here in the Burlington area. Lynn


Wed May 19, 2010 9:24 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
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Lynn -
Dr. Usher's contact info is above. He's not at Dartmouth Hitchcock.
Robin


Thu May 20, 2010 1:05 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
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Merle,
Welcome to the site, sorry for your need but seems as you have been given good advice here so far.Sorry for the delayed in the welcome,I have been away on vacation.
If the correct meds are found it can really make a difference and I am a believer in the comfort of the patient.

_________________
Irene Selak


Thu May 20, 2010 9:50 am
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