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 Use of Neurologist(s) 
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Use of Neurologist(s)
I realize there is no cookbook answer to this question and everyone is different, but I am wondering how often is typical for LBD patients to see their neurologists.

My mother was diagnosed just over a year ago by a neurology team in a large teaching hospital about two hours away. There was no suggestion of any follow-up. Since then, she has been in the care of her PCP, who sees her at least every two months.

Very recently, my mother has developed severe anxieties. After a long time in denial, she has been forced by some obvious episodes of forgetfulness and confusion to become aware of her cognitive and memory losses, and she is extremely upset about them.

Despite the reassurances of my sister and me, she literally stays up half the night, worrying over what "mistakes" she has made in the past and what ones she will commit in the future. She says she hates it in the SNF and gets very agitated over minor problems.

My sister says they remind her of the panic attacks that a relative used to have. We are both concerned about seeing our mother suffer like this. She has a prescription for Ativan PRN but the DON at the SNF refuses to have it administered--says it creates a risk of being too drowsy and falling. My niece who's a nurse practitioner is about to go on the warpath about that, and I would like to head that off in the interests of maintaining a decent relationship with the SNF, and she has agreed that a neurology consult might bring about a change in meds for the better.

My mother is on Aricept and Namenda. We are starting to wonder if these medications are contributing to her awareness of her condition and hence to her misery. I feel that a neurology consult would be appropriate if for no other reason than to re-evaluate her meds. If the PCP does not want to refer her, should I take her myself? Is a year long enough between visits?

Also, I noticed somed discussion of a good LBD neurologist who has office hours in a satellite clinic only about a half hour away. Now that I know more about LBD, I don't think the attending neurologist who saw my mother was very knowledgeable. Would it be appropriate to switch her to this other neurologist even though he did not participate in the initial diagnosis?

We have been paying privately for a single room for my mother for a year now and we are going to have to give it up. She will be on medical assistance and therefore be required to move to a semi-private room in the next couple of months. She has been a hermit for a long time. I think that the move is really going to put her into orbit, and that is one reason why I think her anxiety needs to be addressed ASAP. I can't imagine putting her through the move in her current mental state.

Sorry for the long post. Any thoughts will be appreciated. I am feeling very much at the end of my rope--again.

Thanks,

Julianne


Tue Mar 08, 2011 4:38 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Use of Neurologist(s)
I think every 4-6 months is appropriate. We would stagger neurologist visits with PCP visits such that every 3 months Dad was seeing some MD where we could discuss all of his meds.


Tue Mar 08, 2011 4:51 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Use of Neurologist(s)
Frank's neurologist would see him every 2-4 months, he put him through the same drill every time. The original dx was eccential tremor, then PD, and finally LBD. Frank's neurologist was hesitant to prescribe the meds needed to control all his symptoms and suggested we see a psychiatrist, who also, was not comfortable prescribing so we got a referral to see a geriatric psychiatrist who watches Franks progression and prescribes the meds. We no longer see the neuro.

Julianne, Ativan made Frank's symptoms 10xworse, watch closely.

_________________
Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Tue Mar 08, 2011 5:40 pm
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 728
Location: LA
Post Re: Use of Neurologist(s)
Julianne, Mr Bobby also used the services of a Geriatric Psychiatrist. Very pleased with him. Instead of using Kleenex for the nose and drooling, I resorted to a soft, soft paper towel. Sorry I cannot remember the brand but it felt like cloth. The nose ran streams both before and after Exelon Patch and Namenda. Meds did not seem to make a difference. I'm sorry to hear about the anxiety and also the pending move.

Dorthea


Tue Mar 08, 2011 6:02 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Use of Neurologist(s)
Julianne,
Also...I think it's fine to switch neurologists (or any MD) any time you want. Certainly if you've found someone more knowledgeable, go for it!
Robin


Tue Mar 08, 2011 6:06 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: Use of Neurologist(s)
Thanks for all the comments. We don't have any geriatric psychiatrists in the area but I think I will look into the new neurologist.

Gerry, when you say Ativan made him 10x worse, could you please explain worse how? It is a PRN order and the DON won't allow her to have it even when she is extremely agitated.

Thanks again,

Julianne


Tue Mar 08, 2011 6:34 pm
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: Use of Neurologist(s)
not much help here, as we are still reading and learning..... but i think the soft paper towel might be viva... sooooo soft!!

good luck and take care!!
cindi

_________________
sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Tue Mar 08, 2011 8:06 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Use of Neurologist(s)
We use Viva. I buy them by the case and take rolls in to the SNF.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Tue Mar 08, 2011 8:08 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3345
Location: Vermont
Post Re: Use of Neurologist(s)
Julianne - I'll chime in as well and say - if the current MD, whatever their speciality, doesn't seem to be appropriate for any reason, and you have a choice, go for it! Make the change. It'll be better for your LO and you.

I'm sorry she'll have to share a room. I remember being very upset when told that moving my dad to a NH was being discussed, and I just couldn't imagine what that would be like for him because he would have had to share a room. "Semi-private" is such a misnomer, especially if you've lived in your own house alone for 13 years, then had a private room in a nice ALF like he had. I had visions of a roommate either worse off than he was or someone that he just didn't like. Hopefully it will work out for you.

I can't imagine the director having the authorithy to withhold medicine a dr. has prescribed. Is that something you can look into? That just does not seem right to me.

Wishing you all the best in this difficult time, Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Tue Mar 08, 2011 8:29 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Use of Neurologist(s)
I'm dreading when Derek will probably have to go on Medicaid some time next year and will have to move into a double room. He has a huge room right now. I can't even imagine visiting him every day with someone a few feet away. And if they keep their TV on, as a lot of them seem to do, it will drive him crazy [well, not that he's sane, but it will irritate him terribly]. Maybe I'll just reverse-mortgage the house, instead!

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Tue Mar 08, 2011 9:05 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Use of Neurologist(s)
Julianne, Frank was in the emergency room and another time in the psyc ward to get meds adjusted. His wrist band said "NO ATIVAN" but they gave it anyway. He was off the wall, it was toward the beginning of the dx before they tried many meds. He hallucinated, was paranoid and delusional. He crawled around the hall floors banging on walls because he said they were not straight. Kept entering other patients rooms and talked nonsense. There are others on the forum taking Ativan and can tolerate it.

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Tue Mar 08, 2011 9:14 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: Use of Neurologist(s)
My mother has lived alone in her home since I left for college at age 16, and she is about to turn 87! It has been hard enough for her to cope with a single room (which she describes as "tiny" though it is the largest single room in the place), and even at that she keeps her door shut. I cannot imagine her in a double room. (Lynn, you are right, semi-private is a misnomer.)

From what the neurologist said a year ago when she was diagnosed, it sounded as if by now likely she would not be as aware of things so that a double room would be tolerable. So I planned accordingly but that's not how it went.

And no, I do not believe that the DON does have the authority to withhold medication ordered by a doctor, but this is the best facility in the area and I am concerned about crossing her unless it is absolutely necessary. My plan is to have the meds reviewed by a neurologist and then perhaps that doctor can enforce his orders. The current PCP doesn't seem able to do so.

Gerry, thanks for the information. Poor Frank, how awful. I will keep that in mind. My mother did have one dose of Ativan (I am not sure how that one slipped through) and seemed to tolerate it, but of course it was only one small dose.

Julianne


Tue Mar 08, 2011 9:20 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3345
Location: Vermont
Post Re: Use of Neurologist(s)
Pat - I hope you have or will see a financial advisor before reverse-mortgaging your home. You are a young, healthy woman and need to think about you, your lifestyle and your own financial security. Reverse mortgages are rarely recommended by financial experts in my experience. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Wed Mar 09, 2011 12:07 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Use of Neurologist(s)
Lynn, either the state or the bank would take the house after I'm gone so what difference does it make? It's currently paid for so I should be able to get a fair amount. They let you live in it until you're dead. Then you have to move. :lol:

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Wed Mar 09, 2011 12:20 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Use of Neurologist(s)
Julianne, Coy saw the behavioral neurologist who diagnosed him twice the first year and once a year since then. He sees the sleep-disorder psychiatrist who recognized the symptoms over the phone and referred us to the neurologist once a year. Although practicing in different cities these two doctors collaborate on research and consult each other about Coy. I can email either of them anytime, which I did frequently while his drug plan was being worked out and fine-tuned.

We also see a geriatrician quarterly. She does not treat the lbd but is familiar with it and especially with its implications for others meds. Both the neurologist and the psychiatrist send her a detailed report each time Coy visits them.

Geography is an important influence on who is available. You are where you are, and you need to make the most from the choices available to you there. It sounds like that is exactly what you are planning to do. Good luck to you and your mother.

Jeanne

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Wed Mar 09, 2011 2:48 am
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