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 Obsession with ailments 
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Joined: Wed May 08, 2013 9:16 pm
Posts: 15
Post Obsession with ailments
Has anyone else had any experience of this , please. We seem to go round in a circle with Mum - one day she's convinced she has a serious bowel disorder, then her teeth are all wrong, then her eyes, and the last three nights she has been very agitated saying her private parts are all wrong. I've had everything checked out - several times!! - and I'm really at the end of my tether and don't know how to deal with it anymore.
Docs say distract her but it's impossible in the middle of the night when she's telling me for the tenth time that I'm killing her by not getting a doctor out!
Please help! Really just need to now if it's a common thing in this vile condition.


Thu Jun 27, 2013 3:01 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3377
Location: Vermont
Post Re: Obsession with ailments
It sounds pretty typical of people who are highly aggitated and delusional. Many folks on here have experienced this with their LBD LOs. Is your mother on any anti-anxiety meds? If not, you might ask the dr. to prescribe something and start out with a small dose. Good luck, Lynn

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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.


Thu Jun 27, 2013 10:06 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Obsession with ailments
Yes, we experienced the same issues. Interestingly, my husband was a man who, prior to Lewy, would refuse to see a doctor [unless something affected his golf game]. The problem was that, when we went to the doctor for the complaint, he would be unable to describe it. His body has been extensively scanned and no problems were ever seen. I would humor your mother as much as possible. At least tell her she has an appointment scheduled, etc. Maybe you'll have to tell her it was rescheduled to a later date and hope that she has forgotten about it by then. I fully understand your consternation!

As Lynn has suggested, perhaps a medication would help. My husband is much better on Seroquel.

_________________
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.


Thu Jun 27, 2013 10:08 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Obsession with ailments
I have to echo the other replies here prior to LBD my husband was never sick a day in our marriage then Lewy hit, he was convinced that he had every ailment on this earth, he went from Doctor to Doctor and my opinion on this is he knew he was sick but didn't know how he was sick and tried his hardest to prove it wasn't his mind which in fact it was.. So sad !!

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Irene Selak


Thu Jun 27, 2013 10:16 am
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Joined: Wed May 08, 2013 9:16 pm
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Post Re: Obsession with ailments
Thankyou very much for your comments and suggestions - at least I know she is not alone in this situation. I feel sure that you are right about the anxiety and I did ask the doc for Seroquel but he said he would not give it!!! - and prescribed Mirtazapine. She is now on that plus exelon and memantine, but to be frank nothing seems to be helping.
I will follow your suggestions (and yes, I too have had everything thoroughly checked and scanned) - my main problem being at night when she gets almost manic over one thing or another and I just don't seem to be able to calm her. Trouble is that her short term memory is so bad that in five minutes she has forgotten that I told her that the doc has been called etc etc and she starts all over again!
Will let you know how we get on - and thanks again
Best of luck to you all


Thu Jun 27, 2013 1:09 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Obsession with ailments
Nothing worked for my husband's PM anxiety until his neurologist prescribed Seroquel. Hope something will work for your mom. :cry: At least Mirtazapine [Remerol] does not have the harmful anticholinergic properties that some neuroleptics do. OTOH, if it isn't working, maybe the doctor will increase it or try something else.

_________________
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.


Thu Jun 27, 2013 2:16 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: Obsession with ailments
My mother was like this in the earlier stages of her illness. At first I tried following up on everything but after a few trips to the doctor (nothing wrong), dentist (nothing wrong) and optometrist (nothing wrong), I realized what was going on. Since then, she sees her doctor monthly at the SNF and has annual dental checkups (she can't participate well enough to do eye checkups anymore) so we don't miss anything, but if she complains of a new symptom (not often now), I keep telling her we are checking into it and that seems to satisfy her. Ditto when she asks for things she cannot have, like sewing scissors and needles. She forgets and asks again, but that's okay, I just tell her again.

Others' suggestions about anxiety are good, too. It's unfortunately the doctor will not consider Seroquel. My mother was put on it when her agitation and anxiety increased in the last several months. She has been on it for a short time and the reduction in her anxiety level is significant.

Julianne


Thu Jun 27, 2013 2:30 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3377
Location: Vermont
Post Re: Obsession with ailments
Do you know the dr.'s reasoning for not prescribing Seroquel? That seems to be the one med that many of our LBD LOs have been able to tolerate and it has lessened the anxiety symptoms. Some drs. can be a pain in the butt, especially when they don't know much about LBD and family members give them suggestions after having done extensive research. BTDT. You need to be the advocate for your LO if you feel she isn't getting some care that she needs and sometimes changing drs. is called for. Hang in there, 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.


Thu Jun 27, 2013 5:41 pm
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Joined: Wed May 08, 2013 9:16 pm
Posts: 15
Post Re: Obsession with ailments
Yes Lynn - I do know the reason - he said that there is a lot of 'hype' about Seroquel in the States, but in England it is not rated that highly!!!!!
The reason I asked for it in the first place was that I had seen such positive results on your forum. I'll badger some more, Thanks


Fri Jun 28, 2013 4:17 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3377
Location: Vermont
Post Re: Obsession with ailments
Maybe you can print out some postings and show them to him. It helped my dad some, but it's also hard to know if it's the meds or just Lewy changes. I hope you get some help. 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.


Fri Jun 28, 2013 7:02 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Obsession with ailments
If it were me I would keep up with trying for the seroquel, yes many people successfully us it and it helps , whey would it work in US and not help people in another country. Dr sounds a bit closed minded. I hope you can change that !

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Irene Selak


Sun Jul 07, 2013 11:07 am
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Joined: Thu Apr 21, 2011 9:07 pm
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Post Re: Obsession with ailments
I agree on the seroquel (quetiapine). If your physician will respond better to the medical literature, you might show him this abstract (and he could probably access the full reference online):

Note that the "psychotic symptoms" would include anxiety and delusions and hallucinations, all of which can threaten the patient's well-being, and the caregiver's ability to cope. And, as people here have reported (including me), many patients have in fact responded well to quetiapine with minimal side effects. GIven its very low risk profile, and that many patients respond to quite a low dose, it seems worth it to me to do a trial starting with a low dose and increasing gradually.

Laurel

Curr Treat Options Neurol. 2011 Jun;13(3):242-54. doi: 10.1007/s11940-011-0121-1.
Dementia in Parkinson's disease.
Kurtz AL, Kaufer DI.
Source
Department of Neurology, CB 7025, The University of North Carolina at Chapel Hill, 3129 Physician Office Building, Chapel Hill, NC, 27599, USA, kurtza@neurology.unc.edu.
Abstract
OPINION STATEMENT: Dementia in Parkinson's disease encompasses a spectrum relating to motor, psychiatric, and cognitive symptoms that are classified as either Dementia with Lewy Bodies (DLB) (initial cognitive symptoms) or Parkinson's Disease Dementia (PDD) (initial motor signs preceding cognitive symptoms by at least a year). Anticholinergic and antipsychotic drugs have a high risk of adverse cognitive and/or motor effects, so their use should be minimized or avoided. Neuroleptic sensitivity is a severe psychomotor adverse reaction that is particularly associated with potent dopamine-blocking agents such as haloperidol. It occurs in up to 50% of individuals with PDD or DLB. Mild psychotic symptoms should first be addressed by reducing anticholinergic and/or dopaminergic agents, if possible. Patients with psychotic symptoms that threaten the safety of the patient or caregiver may benefit from treatment with quetiapine or, in refractory cases, clozapine. Cholinesterase inhibitors as a drug class have been shown to have beneficial effects on cognition in DLB and PDD, and may help to alleviate some psychiatric symptoms, such as apathy, anxiety, hallucinations, and delusions. Memantine may help to moderate cognitive symptoms in DLB and PDD, although current data suggest a more variable response, particularly in PDD. Parkinsonian motor signs that are accompanied by clinically significant cognitive impairment should be treated with carbidopa/levodopa only, as dopamine agonists and other antiparkinsonian medications generally carry a higher risk of provoking or exacerbating psychotic symptoms. Excessive daytime sleepiness and REM sleep behavior disorder are common associated features of PDD and DLB. Minimizing sedating medications during the day and promoting nocturnal sleep may help the daytime sleepiness; melatonin, clonazepam, gabapentin, and possibly memantine may be useful in treating REM sleep behavior disorder. Orthostatic hypotension can be managed with various nonpharmacologic interventions, and if needed, fludrocortisone and pyridostigmine. Midodrine should be used cautiously, if at all.
PMID: 21461668 [PubMed]

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Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.


Mon Jul 08, 2013 1:25 pm
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