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 Hello from Strathroy 
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Joined: Sun May 13, 2012 4:31 pm
Posts: 11
Post Hello from Strathroy
My father has been diagnosed with Lewy Body Dementia. In December he broke his hip and had a partial hip replacement. Spent 10 weeks in hospital getting rehabilitation.
Came home for 2 1/2 days and we had to call 911 because he became violent. He felt my mom had given all his belongings to strangers. He has been in hospital since February 16 and every week we see significant decline in cognitive functioning. He is being taken in and out of bed by a lift, needs assistance with all personal care needs and is only occassionaly coherent. He has to be given Haldol before personal care or he will hit, kick or bite the nurses. He has been denied at 3 long term care facilities and the remaining 2 on our list want more information.

My mother, sister and I are a great support system for each other but frankly are getting tired. Its to the point now where mom is afraid to go see him by herself anymore because his condition just breaks her heart.


Tue May 15, 2012 3:19 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3316
Location: Vermont
Post Re: Hello from Strathroy
So sorry for what you are all going through. It is a very, very tough road you are on and we CGs here know it all too well. You are among friends here! 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.


Tue May 15, 2012 4:54 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Hello from Strathroy
Welcome to the LBDA forums and I am sorry for your need to be here and for all that your family is going through, sadly it is times like your Dad's hip replacement that can really cause such drastic issues. I do hope they are able to get him a bit more in control with something other than the Haldol, that in itself can be horrible for some of them.

http://www.lbda.org/content/treatment-options

Neuroleptic Sensitivity
Severe sensitivity to neuroleptics is common in LBD. Neuroleptics, also known as antipsychotics, are medications used to treat hallucinations or other serious mental disorders. While traditional antipsychotic medications (e.g. haloperidol) are commonly prescribed for individuals with Alzheimer’s with disruptive behavior, these medications can affect the brain of an individual with LBD differently, sometimes causing severe side effects (see below). For this reason, traditional antipsychotic medications like haloperidol should be avoided. Some newer ‘atypical’ antipsychotic medications like risperidone may also be problematic for someone with LBD. Quetiapine is preferred by some LBD experts. If quetiapine is not tolerated or is not helpful, clozapine should be considered, but requires ongoing blood tests to assure a rare but serious blood condition does not develop. Hallucinations must be treated very conservatively, using the lowest doses possible under careful observation for side effects.

WARNING:
Up to 50% of patients with LBD who are treated with any antipsychotic medication may experience severe neuroleptic sensitivity, such as worsening cognition, heavy sedation, increased or possibly irreversible parkinsonism, or symptoms resembling neuroleptic malignant syndrome (NMS), which can be fatal. (NMS causes severe fever, muscle rigidity and breakdown that can lead to kidney failure.)


Good Luck !

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Irene Selak


Tue May 15, 2012 8:32 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Hello from Strathroy
Sorry to hear about this.

Would it be possible to try Depakote or some other medication in place of Haldol? What other medication is he being given?

Would it be possible to place your father in a psychiatric wing of a hospital where they can figure out his meds?


Tue May 15, 2012 9:44 pm
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Joined: Sun May 13, 2012 4:31 pm
Posts: 11
Post Re: Hello from Strathroy
Thanks for your supportive comments.
The only other drugs dad is currently receiving is the patch alternative to Aricept, and a baby aspirin.
I will speak to his doctors about alternatives to using Haldol. We have tired seroquel and that puts him out for 3 days.


Wed May 16, 2012 8:24 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Hello from Strathroy
Does the Exelon patch help with cognition or psychosis?


Wed May 16, 2012 10:30 am
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 343
Post Re: Hello from Strathroy
Is there an LBD specialist available near you? Can you get that specialist involved asap?
It sounds like some of this could be caused by the haldol, which is the medicine most of us as caregivers avoid at all costs. The trigger event was likely the surgery (anesthesia). It happens with a lot of LBD patients. No one knows for sure, but more anecdotal evidence presents itself daily.
The good news is that it is possible for significant improvement if your dad gets treated by someone who is familiar with LBD. Sadly, many physicians are not yet informed about LBD...it is "too new."
I am sorry that I am not at my home computer, so I cannot insert here an excerpt from my book that might be helpful to you. There is a foreword by an excellent LBD specialist and a section with medicines to beware of if you have LBD that you might find empowering to you as you have discussions with your dad's medical team.
Your family is in my prayers.
Pat

_________________
Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url]http://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228/ref=sr_1_1?ie=UTF8&qid=1334092686&sr=8-1[/url]


Wed May 16, 2012 11:20 am
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Joined: Sun May 13, 2012 4:31 pm
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Post Re: Hello from Strathroy
The Haldol is a recent addition and is to be used as a prn before caregiving. Not quite sure how often he is getting it but this week he seems to be calmer and more alert. Not sure if it is because my mom has been able to visit daily again (was not able to go for a full week because she fell in the tub and broke 2 ribs). Today we took him in a wheel chair to the hospital lobby where there were some plants and a water feature. He commented on how nice it was to see the sunshine again.

His doctor is a geriatric specialist and seems to know a little about LBD. She says she is striving to find the balance of mediation for dad.


Wed May 16, 2012 2:57 pm
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 343
Post Re: Hello from Strathroy
When a doctor knows "a little about LBD" that would be a red flag for me.

_________________
Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url]http://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228/ref=sr_1_1?ie=UTF8&qid=1334092686&sr=8-1[/url]


Wed May 16, 2012 3:41 pm
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Joined: Fri Dec 31, 2010 3:07 pm
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Location: Minnesota
Post Re: Hello from Strathroy
That a doctor who know anything at all about LDB would be using haldol makes me shudder.

Welcome to our forums!

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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 May 16, 2012 11:41 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Hello from Strathroy
I am in agreement with the otheres here, Doctors using Haldol if they know a little something about LBD, makes me wonder if they never heard of it what would their treatment be.



LBD Requires a Comprehensive Treatment Approach
01/01/2006

A Comprehensive Approach to Treatment can Significantly Improve the Quality of Life of Patients with the Lewy Body Dementias
by Bradley F. Boeve, M.D.

Lewy body dementia, like Alzheimer's Disease, is not preventable or curable, but by focusing on what we CAN do, rather than what we cannot do, there is much that can be done to allow your patients to enjoy a higher quality of life. In fact, LBD patients tend to have greater cholinergic deficits but less neuronal loss than AD patients, so there is more potential for improvement and/or stabilization using the cholinesterase inhibitors. Additionally, there are good medications for many of the behavioral features of LBD.

In our experience, many LBD patients enjoy significant improvement with a comprehensive approach to therapy addressing cognitive, neuropsychiatric, motor, sleep, autonomic, and other medical issues, and many have remarkably little change from year to year. Clearly, not all patients experience this improvement and slowly progressive course, but for many LBD patients (especially those with little atrophy on MRI), the neurotransmitter deficit appears to drive the illness more than neuronal death. Such patients can improve with therapy, sometimes markedly, and do quite well, all things considered, for many, many years. Perhaps it is the lack of a comprehensive approach that many have not seemed to benefit. Perhaps there are biologic differences between different patient populations that lead to differences in the clinical course, etc. We in the LBDA firmly believe an aggressive and comprehensive approach is necessary with LBD patients, especially early in the illness, and some clinicians may not take that approach.

It pains us greatly to think of the LBD patients who see physicians who have the all-too-frequent view that "this patient has dementia, none of the drugs work so there is little to do, so get your finances in order and plan for a painful next few years when you won't recognize your family, will need to live in a nursing home....." This is the view of so many MDs, including neurologists and psychiatrists, and it is our (LBD specialists) obligation to educate the public and the medical community that LBD is very different than AD, and it is absolutely unacceptable to do nothing or take a nihilistic approach. We must also maintain realistic optimism, since there is almost always
something we MDs can do to affect quality of life - through medications, education, counseling, behavioral modification, etc.

Encourage your patients' caregivers to become good detectives, by carefully studying and identifying medications and other interventions or environmental factors that influence the LBD patient's function/fluctuations.

We are seeking to promote knowledge and understanding that LBD:

•is a relatively common form of dementia;
•is recognizable to the educated eyes;
•can respond to cholinesterase inhibitor +/-psychostimulant therapy, sometimes
•dramatically;
•should not be exposed to conventionalneuroleptics;
•quality of life for patients and families can bereasonably good for many years.
Bradley F. Boeve, M.D. is an Associate Professor of Neurology, Division of Behavioral Neurology and Sleep Disorders Center Department of Neurology, Mayo Clinic College of Medicine, Rochester, MN.


--------------------------------------------------------------------------------

A Note from LBDA:
One example of how a comprehensive approach to therapy can yield very positive results can be seen in a recent video clip produced by the Mayo Clinic, featuring Dr. Brad Boeve, one of our Scientific Advisory Council members. Dr. Boeve and his colleagues at Mayo Clinic interviewed a patient and his wife http://www.medicaledge.org/2005march-1.html), who is representative of the sometimes dramatic improvement one can see when a team of clinicians take a comprehensive approach toward therapy, and a patient and caregiver address several important non-medication issues.

Mr. R was confused, paranoid, delusional, hallucinatory, and his wife was very frustrated by the dramatic changes in her previously high-functioning husband. The patient's neurologist, psychiatrist, and internist worked toward establishing the diagnosis, and he improved significantly with Aricept, but his hypersomnolence, sleep attacks, and delusions and hallucinations persisted to some degree. He was then commenced on Provigil, and the next day his hypersomnolence improved and his sleep attacks, delusions and hallucinations stopped, and have been almost nonexistent now for well over a year.

He is also receiving treatment for his parkinsonism (carbidopa/levodopa), a sleep disorder known as REM sleep behavior disorder (clonazepam), and depression (bupropione). His internist is optimizing management of his diabetes, atrial fibrillation, and chronic need for anticoagulation. He and his wife also remain physically and mentally active, do water aerobics, spend quality time with friends and family, and maintain an excellent sense of "realistic optimism." He is not neurologically normal, but he and his wife have an active lifestyle, enjoyed a cruise a few months ago (which would not have been possible prior to these therapies), and this clinical improvement and stabilization and desire to educate the public were their motivations to do this video.

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Irene Selak


Thu May 17, 2012 9:51 am
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