I've been away from the forum for awhile. I've been having trouble with depression.

I went to see a new MDS neuro last Thursday. He changed my dx from PD to Lewy Body Dementia. He says the PD symptoms are just part of the package.

Karl

I am so sorry to hear that, Karl. I hope you do get some treatment for the depression. The bad diagnosis and the weather this time of year don't help much either.

I'll keep you in my prayers.

John

I might have put what your MDS neuro said differently; that dementia is part of the PD package. The effects on executive function that all of us are dealing with is on the spectrum of mental progression to be expected with Parkinson's disease.

I have seen where some folks have apparently experienced improvement with Strattera. You might ask your primary care doc about it.

Also, don't I remember that you earlier posted that you had unsuccesfully applied for disability with your insurance company? With the diagnosis that you now have, I find it difficult to believe that you would not be awarded disability.

Press for it! Keep soldiering; we are rooting for you!

Robert

Hello Karl -
This Lewy Body must not keep you away from us in the Forum. Hang on to your life and be active if you can , the dx. is only a part of it.

Welcome back !
Annelise

Dear Karl,

On what basis did the Neurologist change your diagnosis? I though that lewy bodies could not be detected by current tests? If sinemet helps, I thought that was proof of Parkinson's disease. If it is just the physician's opinion, and you choose to believe it, then trust him. It doesn't seem to mean much which diagnosis you receive, as so many neurological diseases are so similiar.

Karl, keep working through that depression. I hope your antidepressent is working and you are sleeping at night. I also hope your family is understanding and supportive.

Peace to you,
Vicky

Largely through the advice of members of this forum, I finally was able to convince my PCP to refer me to a movement disorders specialist. I had seen two neurologists before, and neither was very helpful.

This MDS neurologist said that the memory and cognitive problems I've been having aren't part of PD. It sounds reasonable, because PD does mostly have to do with movement, at least as far as I understand it. He has me using an Exelon Patch, which seems to be helping some. I've only been using if for four days, so it's still pretty early to make a serious conclusion.

I have a lot of PD symptoms and the Sinemet has made a huge difference. That much has been established for some time now. This is the first neurologist that has been interested in the cognitive part. I told him about when I was in a meeting in early 2007 when I really knew that there was a problem. I could see people talking and hear the words, but I couldn't understand any part of what they were saying. There was fatigue, sweating, and vision problems at the same time. This seemed to convince him that the cognitive part was real. All of the doctors to this point have been telling me that I'm depressed and that the depression is causing my cognitive symptoms. One doctor even went so far as to say that the depression was causing the PD symptoms--even though he could see that Sinemet was helping me.

So, for about the last six weeks, my local PCP and psychologist have had me taking Wellbutrin (bupropion), which is a dopaminergic antidepressant. At first, I took the XL 150 and didn't have much problem with it for the first few weeks. Prior to that, all of the seretonergic antidepressants had not helped and usually made me feel worse. But then my insurance company refused to pay for the Wellbutrin XL 150 (no generic version), and we tried bupropion SR 100 twice a day. Then I got really depressed. I started to do research on how to commit suicide and was trying to get my wife to leave me so she could go out and find some one better. I was at a real low point.

They stopped the bupropion SR but have me back on the Wellbutrin XL 150. It's expensive, but we're trying to get the VA to provide it. I'd rather not take it at all. It gives me tremors, bruxism, headaches and I still have episodes of depression. I don't know how they can think that making a person more depressed is helping with depression. For some reason, depression seems to be a favorite diagnosis for doctors. It's enough to make a person feel really depressed.

And, yes, the new diagnosis should help with my insurance claim. Of course, the neurologist ordered more tests. I'll have to wait a few weeks for the tests. The insurance company gave me 180 days to file a request for review of my claim, and that period is almost up. It's going to be close. In the meantime, I'm losing a lot of money from loss of income. I have trouble with this: Under doctor's orders, I'm not supposed to work more than four hours per day (and I'm not worth much during those four hours). I've paid the premiums for income replacement insurance since I started working at the university almost thirteen years ago. Still, the insurance company won't pay. It seems to me if the doctor says don't work, then the insurance company should pay. Evidently, that's not enough. A person can't simply be sick--they have to be sick in the right way.

It's also true, to my knowledge, that there is no definite test for Lewy Body Dementia. It's a diagnosis of exclusion, like idiopathic PD. The neurologist ordered a test to exclude ALS.

This was a long response and now I'm fatigued.

Thanks for the support.

My father had cognition problems along with PD.
Perhaps the type of problems you have are different.

This article says with people with DLB have severe neuroleptic sensitivity reactions, so use neuroleptic drugs with caution.


2006
Guidelines for the clinical and; pathologic diagnosis of dementia with Lewy bodies (DLB):

book excerpt:

http://books.google.com/books?hl=en&...sYZXNgo4juV_KI

click on the arrow to read more pages, and click on the plus sign to make the font larger.

**********

This article talks about Lewy body Parkinson’s disease, so there is a syndrome that includes both, so Sinemet should help:

Improved accuracy of clinical diagnosis of Lewy body Parkinson’s disease
Andrew J. Hughes, MD FRACP;
2000

The authors studied the accuracy of clinical diagnosis of idiopathic PD (IPD) in 100 consecutive clinically diagnosed cases that came to neuropathological examination. Ninety fulfilled pathologic criteria for IPD. Ten were misdiagnosed: multiple system atrophy (six), progressive supranuclear palsy (two), post-encephalitic parkinsonism (one), and vascular parkinsonism (one). Assessment of the clinical features suggests that an accuracy of 90% may be the highest that can be expected using current diagnostic criteria.

http://www.neurology.org/cgi/content/abstract/57/8/1497

Journal of Geriatric Psychiatry and Neurology, Vol. 17, No. 3, 137-145 (2004)
DOI: 10.1177/0891988704267470
© 2004 SAGE Publications
Are Parkinson’s Disease with dementia and Dementia with lewy Bodies the Same Entity?


The diagnosis of Parkinson’s disease with dementia (PDD) or dementia with Lewy bodies (DLB) is based on an arbitary distinction between the time of onset of motor and cognitive symptoms. These syndromes share many neurobiological similarities, but there are also differences.

Deposition of beta-amyloid protein is more marked and more closely related to cognitive impairment in DLB than PDD, possibly contributing to dementia at onset.

The relatively more severe executive impairment in DLB than PDD may relate to the loss of frontohippocampal projections in DLB. Visual hallucinations and delusions associate with more abundant Lewy body pathology in temporal cortex in DLB.

The differential involvement of pathology in the striatum may account for the differences in parkinsonism. Longitudinal studies with neuropathological and neurochemical evaluations will be essential to enable more robust comparisons and determine pathological substrates contributing to the differences in cognitive, motor, and psychiatric symptoms. (J Geriatr Psychiatry Neurol 2004; 17:137-145)

Neurology 2002;59:1714-1720
© 2002 American Academy of Neurology
Fluctuations in attention
PD dementia vs DLB with parkinsonism

Background: Marked impairments in and fluctuation of attention are characteristic of dementia with Lewy bodies (DLB). The comparative impairment of these cognitive domains in PD and PD dementia (PD dementia) has not been studied, and is important to the conceptual understanding of parkinsonian dementias.

Method: Detailed evaluations of attention and fluctuating attention (Cognitive Drug Research computerized battery) were undertaken in 278 subjects (50 DLB, 48 PD dementia, 50 PD, 80 AD, 50 elderly controls) from the Newcastle dementia register and the Stavanger PD register (controls, PD, and PD dementia patients were recruited from both centers). DLB, AD, PD, and PD dementia were diagnosed using operationalized criteria.

Results: Impairments in reaction time, vigilance, and fluctuating attention were comparable in patients with DLB and PD dementia, but were less substantially impaired in patients with DLB without parkinsonism.

Patients with PD had significantly greater impairment of cognitive reaction time than elderly controls, and comparable impairments of cognitive reaction time to patients with AD. Patients with PD, however, did not exhibit fluctuation of attention.

Conclusion: The profile of attentional impairments and fluctuating attention is similar in PD dementia and DLB with parkinsonism. The current findings do not support the current arbitrary distinctions between these patient groups. Importantly, patients with PD do not experience fluctuating attention.

http://www.neurology.org/cgi/content...act/59/11/1714

Vol. 16, No. 1, 2008

Paper

Cognitive Impairment in Parkinson's Disease and Dementia with Lewy Bodies: A Spectrum of Disease
Rachel Goldmann Gross, Andrew Siderowf, Howard I. Hurtig

Neurosignals 2008;16:24-34 (DOI: 10.1159/000109756

Abstract

Parkinson's disease (PD) is classically thought of as a movement disorder characterized by tremor, rigidity and postural instability. Nevertheless, there is growing recognition of prominent cognitive impairment in PD and related disorders, which is responsible for substantial disability in these patients. This review will focus on cognitive impairment associated with Lewy body pathology, including PD with dementia (PDD) and dementia with Lewy bodies (DLB). We will review the epidemiology, clinical evaluation, underlying mechanisms and treatment of cognitive impairment in these patients. Despite differences between PDD and DLB, there is clinical, neuropathological and radiological overlap between these disorders, supporting the view that they represent a spectrum of disease. These observations suggest that common targets for diagnosis and treatment of these disorders can be identified.