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 LBD or not?? 
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Joined: Sat Apr 07, 2007 1:56 pm
Posts: 54
Location: Florida
Post LBD or not??
Hello......I'm new to this forum and, frankly, quite distressed about my dear husband's condition. I need to know if I'm in the right forum. I will say right off the bat that he's 81 years old, but his vital functions (heart, lungs, etc.) and overall strength are in very good shape for a man his age. I am 68, in good health (so far), and am his sole caregiver. I feel so deeply for others here who are dealing with a loved one much younger than my husband, and I am grateful that the illness that now besets him came later in life. However, no matter what the age of our loved one, witnessing the physical and mental deterioration of a once vital person is heartbreaking. I apologize in advance for the long narrative that follows, but I needed to get this all out and abbreviating the facts tends to leave out important info, so I'm erring on the side of too much rather than too little. I promise that future posts will be much shorter!

Six or seven years ago he was diagnosed with benign essential tremor in his left hand. No medication or further intervention was needed or suggested at that time. We moved to FL in 2003 and he showed no changes beyond the tremor in his left hand. Early in 2004, during a routine exam by our internist, I told the doctor my husband was having terribly vivid dreams, thrashing and screaming out, sometimes beating on me so hard I had to jump out of bed. He started my husband on Zoloft. He also noticed something about my husband's gait and "masked" expression during the exam and referred him to a neurologist. After some testing, the neuro concluded my husband had "early" Parkinson's, recommended no additional meds at that time, and told us that because he was diagnosed with PD later in life, the progression of the disease would be very slow. By the end of 2005, his symptoms had worsened....a new tremor in his leg, a very wobbly gait and postural difficulties. The neuro started him on Sinemet with gradual dosage increases.

Early in 2006, my husband was showing his age, but he was still ok. In fact, he was volunteering at one of the area hospitals, transporting patients in wheelchairs. He was still able to drive through the first couple of months of the year. After his b'day in March, I no longer allowed him to drive because he didn't seem to be thinking as quickly as he always had, and he was getting somewhat wobbly on his feet, but still able to do his volunteer work because the wheelchairs gave him stability. In June I noticed even more changes in cognitive function....he seemed fuzzy, especially in the mornings, repeating questions, and he was getting confused easily about some things, but still perfectly fine about others. The neuro briefly tested his memory/cognitive functions and started him on Aricept which he takes daily (10 mg after breakfast rather than at bedtime so it doesn't contribute to vivid dreams at night). We were not thrilled with this neuro, mostly because of his somewhat disinterested attitude, and were referred to another neuro in July. After an initial meeting, we changed over to him and we are in love with him. Not only does he have a wonderful demeanor, but diagnostically he leaves no stone unturned. He was amazed that my husband had not been started on Aricept much earlier. He and my husband's cardiologist determined he has orthostatic hypotension which accounted for a couple of fainting spells. That is now controlled with medication.

The neuro began to suspect right away that my husband had something more going on than just PD. My husband's wobbliness and short shuffling steps were so bad, that he began to fall and we've had to employ safety measures for him. His volunteering has also ended. His cognitive function has changed enough so that even my untrained mind can recognize dementia setting in. These rapid declines led the neuro to a diagnosis of Parkinsonism rather than PD, something the doctor suspected all along. He sent my husband to the Memory and Wellness Center in Boca Raton for testing and we just had our conference last week with the neuropsychologist and nurse practitioner. Here is an excerpt from their report which concludes as follows:

"Your laboratory studies revealed no significant contribution to your current presentation. Neuroimaging studies revealed age associated atrophy and vascular changes. The neuropsychological testing revealed significant difficulties with memory and other cognitive skills - beyond what is expected for your age group. Therefore, criteria were met for a diagnosis of mild to moderate dementia syndrome, probably of the Alzheimer's type. The additional symptoms of labile hypertension, incontinence, gait disturbance and Parkinsonian like features may be indicative of a diffuse Lewy body contribution. The diagnosis of probable Alzheimer's disease is often distressing because it is progressive in nature. However, it is usually a very slowly progressive form of dementia. Therefore, early diagnosis and intervention are the keys to maintaining optimal functioning."

So, that's where we're at right now. We haven't seen the neuro yet and probably won't for another couple of months. The complete, technical report is being sent to the neurologist, as well as to our internist, so perhaps we'll hear from the doctors at that time. In the meantime, my husband started physical therapy as prescribed by the neuro to help with his balance, and on Monday he's having swallow testing and speech testing. He chokes a lot and I understand that is a symptom of PD. My husband seems to exhibit every symptom of LBD, Alz and PD except for hallucinations. His cognitive abilities change from day to day.....one day he can seem quite lucid, and the next he's fuzzy and detached. Today, as I type this, he's having an "off" day.

Thank you for hearing me out. I know we're dealing with an inexact science here and that diagnoses of LBD, Alz, PD and similar neurological disorders are replete with terms like "may", "appears to be", "probable", etc. But, what the heck does the excerpt from the above report mean? Is it LBD or not?

_________________
Marilyn


Thu Apr 12, 2007 3:36 pm
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Joined: Mon Feb 05, 2007 3:43 am
Posts: 215
Location: Seattle, WA
Post 
Welcome to the nebulous world of LBD diagnosis; many of us have struggled with "mystery symptoms" in loved ones.

Let's back up a bit - the idea that the cognitive problems started after the motor/movement symptoms of PD speak to Parkinson's Disease Dementia. But hairs are being split here - if it's cognitive problems related to Lewy body pathology, it is, by definition, a Lewy body dementia no matter which of the clinical labels it gets - PDD, LBD, PSP...they're all caused by a similar process, and can be treated with the same agents. This topic gets almost as much play as "Tastes Great vs. Less Filling", by people with vast sums of research money, and there's still controversy.

So, your husband has REM sleep behaviors, cognitive slowing and a non-normal neuropsych exam. He's got a history of Parkinsonian symptoms, and he's got the critical piece - cognitive fluctuation. It's very rare to see dramatic difference in AD patients; certainly not all the way to full-on-lucid (they can worsen from metabolic problems and urinary tract infections).

Refer to:

http://www.lewybodydementia.org/symptoms.php

This isn't the *MOST* current version of this information; PET and SPECT with dopamine-specific ligands is now commercially available.

Skipping down to the "Probable" vs "Possible"...do a quick mental inventory. I'm no doctor, but if it walks like a duck, quacks like a duck...

So, the question is, what do you do now. First off, don't worry that an indeterminate diagnosis is a Big Deal. The drugs that are most successful in treating LBD are the same ones that work (modestly) in AD. Virtually no treatment for AD, aside from the use of neuroleptic antipsychotics (things that have a brand name ending in -ol or -il would be the big offenders, except for Clozaril), will harm LBD patients. So you're not doing anything *wrong*.

The labwork not being abnormal is good. Some cognitive problems can come from B6 or B12 deficiency or electrolyte imbalances.

The neuropsych exam may have included some specific tests; people with LBD do markedly worse on four or five common neuropsych assays. It might be worth asking if the tests administered included any of the ones mentioned in this abstract, and if the results were substantially different than might be expected:

http://www.ncbi.nlm.nih.gov/entrez/quer ... s=16980250


The sleep disturbances can be treated; if he's still having problems, the neurologist may be willing to try a low dose of Klonopin at bedtime. This is pretty common in people with LBD, it's well-tolerated, relatively inexpensive, and you can see the difference in a few nights.

It sounds like the neurologist is on top of things - suspecting it might be something other than PD or AD, ordering neuropsych testing, starting him on an acetylcholinesterase inhibitor (Aricept).

The Sinemet could improve the motor symptoms, but could worsen the cognitive issues, possibly including the sleep. Balancing the two is one of the real challenges in treating the movement disorder.

You don't mention if your husband takes anything for overactive bladder or allergy - medications with an anticholinergic action are particularly bad in LBD, and can dramatically worsen symptoms.

The neuroimaging studies that have been done may be able to be evaluated in light of some new publications about LBD-related changes in brain structure - atrophy looks "different" in people with LBD. There's more information about that at:

http://www.ncbi.nlm.nih.gov/entrez/quer ... med_docsum


Finally, it's not impossible that there could be simultaneous LBD and AD.

So, you're doing all the right things and then some. Your husband is well ahead of the curve in getting hooked up to appropriate resources.

If you're thinking you'd like a more aggressive approach or more LBD-specific expertise, I think you may find that the Mayo Clinic at Jacksonville is a hotbed of LBD knowledge. There are lots of Floridians here that might have some other ideas, but the quality of both the research and clinical care coming out of Mayo is *exceptionally* impressive.

Lots to chew on here.

One thing we've done with Cal, to a great extent, is optimize his supplementation regimen - his psychiatrist is a big (BIG) fan of complementary approaches. The big one with a direct impact may be CoQ10 - it has been shown, in small trials, to slow the functional decline in PD-esque syndromes. It's safe, well-tolerated and available without an Rx. Search here for some more information on the state of the CoQ10 research.

Sorry that you're here, but glad that you've found us. There's a lot of information here, ranging from mouse-brain-and-test-tube science developments to the *exceptionally* practical (how do I deal with symptom <X>).

Regards,

Eric

(edited to replace "benefit" with "harm" - AD treatments generally benefit LBD patients)

_________________
Cal is not the real name of a real 84 year old with DLB. I don't speak for LBDA, nor do I have clever initials behind my name, so information is provided without warranty. Caveat everybody. I blog at http://PragmaticCaregiver.blogspot.com


Last edited by EricSEA on Fri Apr 13, 2007 2:27 pm, edited 1 time in total.



Thu Apr 12, 2007 5:06 pm
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Joined: Sat Apr 07, 2007 1:56 pm
Posts: 54
Location: Florida
Post 
Eric......

Thank you so very much for your very warm and informative reply. It's 11:30pm and I just got back to the computer after a very busy day. I will respond to you tomorrow when we get back from my husband's physical therapy session. I do have some more info.

_________________
Marilyn


Thu Apr 12, 2007 11:36 pm
Profile
Post Re: LBD or not??
Hi Marilyn,
Welcome to the Lewy Body forums and yes you are in the right place, So often we hear how people with LBD are DX'ed with something else first many times more than 1 DX, It amazes me due to the fact there is a certain criteria that it takes to get a LBD DX and often they are in good health otherwise, no need to promise shorter posts here, say what you want to say, thats why we are all here, as we all need a forum to vent so to speak.
So do you think 6 or 7 yrs ago this was the actual illness? Looking back knowing what you know now.I will say that Zoloft is a first choice drug in treating anxiety so thats a good thing. Drugs in this illness is very tricky because so many have such a bad reactions to them.
Eric is very correct with saying it doesn't matter what it actually is, the general rule is mild cognitive and within 1 yrs the motor problems and perhaps as you think back you may find this the case, it is a very slow progression until the motor problems show themselves and thats when we KNOW something is wrong.
Orthostatic hypotension is very common in LBD and many suffer from it .The one thing I did pick up on in your post is the fact that there are fluctuations and that is a major hint of what it is, Alzheimers does not have this Trait at all, I do think the PT is very helpful but not to the point of exhaustion and Hopefully the therapist that is working with him can understand this. I am sure you know that a True DX of LBD can not be made until after one's death.
Again I welcome you and I do hope you find the information here helpful.
--------------------------------------------------------------------------------







Marilyn wrote:
Hello......I'm new to this forum and, frankly, quite distressed about my dear husband's condition. I need to know if I'm in the right forum. I will say right off the bat that he's 81 years old, but his vital functions (heart, lungs, etc.) and overall strength are in very good shape for a man his age. I am 68, in good health (so far), and am his sole caregiver. I feel so deeply for others here who are dealing with a loved one much younger than my husband, and I am grateful that the illness that now besets him came later in life. However, no matter what the age of our loved one, witnessing the physical and mental deterioration of a once vital person is heartbreaking. I apologize in advance for the long narrative that follows, but I needed to get this all out and abbreviating the facts tends to leave out important info, so I'm erring on the side of too much rather than too little. I promise that future posts will be much shorter!

Six or seven years ago he was diagnosed with benign essential tremor in his left hand. No medication or further intervention was needed or suggested at that time. We moved to FL in 2003 and he showed no changes beyond the tremor in his left hand. Early in 2004, during a routine exam by our internist, I told the doctor my husband was having terribly vivid dreams, thrashing and screaming out, sometimes beating on me so hard I had to jump out of bed. He started my husband on Zoloft. He also noticed something about my husband's gait and "masked" expression during the exam and referred him to a neurologist. After some testing, the neuro concluded my husband had "early" Parkinson's, recommended no additional meds at that time, and told us that because he was diagnosed with PD later in life, the progression of the disease would be very slow. By the end of 2005, his symptoms had worsened....a new tremor in his leg, a very wobbly gait and postural difficulties. The neuro started him on Sinemet with gradual dosage increases.

Early in 2006, my husband was showing his age, but he was still ok. In fact, he was volunteering at one of the area hospitals, transporting patients in wheelchairs. He was still able to drive through the first couple of months of the year. After his b'day in March, I no longer allowed him to drive because he didn't seem to be thinking as quickly as he always had, and he was getting somewhat wobbly on his feet, but still able to do his volunteer work because the wheelchairs gave him stability. In June I noticed even more changes in cognitive function....he seemed fuzzy, especially in the mornings, repeating questions, and he was getting confused easily about some things, but still perfectly fine about others. The neuro briefly tested his memory/cognitive functions and started him on Aricept which he takes daily (10 mg after breakfast rather than at bedtime so it doesn't contribute to vivid dreams at night). We were not thrilled with this neuro, mostly because of his somewhat disinterested attitude, and were referred to another neuro in July. After an initial meeting, we changed over to him and we are in love with him. Not only does he have a wonderful demeanor, but diagnostically he leaves no stone unturned. He was amazed that my husband had not been started on Aricept much earlier. He and my husband's cardiologist determined he has orthostatic hypotension which accounted for a couple of fainting spells. That is now controlled with medication.

The neuro began to suspect right away that my husband had something more going on than just PD. My husband's wobbliness and short shuffling steps were so bad, that he began to fall and we've had to employ safety measures for him. His volunteering has also ended. His cognitive function has changed enough so that even my untrained mind can recognize dementia setting in. These rapid declines led the neuro to a diagnosis of Parkinsonism rather than PD, something the doctor suspected all along. He sent my husband to the Memory and Wellness Center in Boca Raton for testing and we just had our conference last week with the neuropsychologist and nurse practitioner. Here is an excerpt from their report which concludes as follows:

"Your laboratory studies revealed no significant contribution to your current presentation. Neuroimaging studies revealed age associated atrophy and vascular changes. The neuropsychological testing revealed significant difficulties with memory and other cognitive skills - beyond what is expected for your age group. Therefore, criteria were met for a diagnosis of mild to moderate dementia syndrome, probably of the Alzheimer's type. The additional symptoms of labile hypertension, incontinence, gait disturbance and Parkinsonian like features may be indicative of a diffuse Lewy body contribution. The diagnosis of probable Alzheimer's disease is often distressing because it is progressive in nature. However, it is usually a very slowly progressive form of dementia. Therefore, early diagnosis and intervention are the keys to maintaining optimal functioning."

So, that's where we're at right now. We haven't seen the neuro yet and probably won't for another couple of months. The complete, technical report is being sent to the neurologist, as well as to our internist, so perhaps we'll hear from the doctors at that time. In the meantime, my husband started physical therapy as prescribed by the neuro to help with his balance, and on Monday he's having swallow testing and speech testing. He chokes a lot and I understand that is a symptom of PD. My husband seems to exhibit every symptom of LBD, Alz and PD except for hallucinations. His cognitive abilities change from day to day.....one day he can seem quite lucid, and the next he's fuzzy and detached. Today, as I type this, he's having an "off" day.

Thank you for hearing me out. I know we're dealing with an inexact science here and that diagnoses of LBD, Alz, PD and similar neurological disorders are replete with terms like "may", "appears to be", "probable", etc. But, what the heck does the excerpt from the above report mean? Is it LBD or not?


Fri Apr 13, 2007 10:27 am
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