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By MarthaJ On 2014.11.08 13:51
The coroner's report was just released. Robin Williams had been diagnosed with Parkinson's Disease about a year ago after having signs since 2011.

The brain slides showed he had Diffuse Lewy Body dementia. I thought the report might indicate it because they reported his wife slept in another room due to his restlessness and talking in his sleep, however I was surprised that it showed up so quickly since he'd apparently only had signs of PD for 3 or 4 years.

By JulieB On 2014.11.17 13:05
Thank you Martha...

I'm hoping that the disclosure that Robin Williams' suffered from Lewy Body Dementia along with his Parkinson's will help make more people aware of this common but underdiagnosed disease. PD and Lewy Body often go together.

When Michael J. Fox revealed his PD, it seemed like public awareness of the disease came to the forefront, and his foundation has done more for research, and someday hopefully could even usher in prevention or a cure.

For those who aren't sure if their PWP has LBD too, here are a few quick facts about it:

Some of the prominent features of Lewy Body Dementia that often go with Parkinson's are:

1. Fluctuating cognition with pronounced variations in attention and alertness.

Michael has this and some folks would see him and say "He seems so great!" and yet our family knew that at times he seemed almost semi-conscious and not great at all. The fluctuations perplexed me until he was finally diagnosed with LBD. Then the pieces started falling into place.

2. Recurrent complex visual hallucinations, typically well-formed and detailed.

Yesterday Michael saw our two Schnauzers at his feet and wanted to feed them, but Edith and Mildred really weren't there. :( He also pointed out that he saw several large letter T's on the ceiling, which of course I didn't see. (This made me think of the bear in the tree playing a banjo, Carman!)

3. Spontaneous features of Parkinsonism.

Also some of the articles about Robin Williams alluded to his possible REM sleep behavior disorder, which can appear years before the onset of dementia and/or Parkinson's.

Michael has acted out his dreams since he was a young man, and we thought he was experiencing nightmares from his time in Vietnam. Now with his LBD diagnosis those dreams decades ago seem like they were probably something else -- a portent of what was to come.

Apparently the normal brain chemicals that somewhat paralyze us in our sleep so we don't literally run and jump, etc. while dreaming, begin to run out in a person's brain long before they're diagnosed with Lewy Body Dementia.

Some of the "supportive features" of LBD are frequent falls, transient, unexplained loss of consciousness, autonomic dysfunction (low blood pressure, incontinence, etc.), visuo-spatial abnormalities and delusional thinking and hallucinations. The hallucinations can be auditory and tactile too. Michael has all of this. Do any of your PWPs have these features, even though there hasn't been a Lewy Body diagnosis?

Why does any of this matter? Because the treatment, the very few medications that are safe, and the possible eventual care needed would be different than for a person with only Parkinson's or someone with Alzheimer's.

I mention this again (not trying to be a broken record, but there could always be new folks here) so that if any of your PWPs are experiencing some of these symptoms, you might want to see your neurologist. We have seen two doctors, and even with these vivid symptoms, one did not diagnose Michael with LBD, the other said on the first visit: "He is a classic case."

Have a good week everyone -- it was zero degrees on our front deck this morning and snow is again in our forecast.

xoxo Julie

By dans316 On 2014.11.17 15:26

Thanks for this info, my wife June, was diagnosed with LBD after a fall in August of this year. She was taken to the ER and they made a diagnosis of LBD. I wasn't sure what they based it on since they only saw her a few minutes. Although she has been incontinent for over a year, I thought that was mostly the result of her immobility/PD. Lately though she has been having more and more visual hallucinations, although they seem to be more like someone is in the room/house.
For about a year, she keeps thinking there is something in her hands and asks for a wastebasket. She then goes through the motion of "emptying" her hands even though there is nothing there.

I never noticed any acting out of dreams as in her getting out of bed, but she does "talk" a lot in her sleep and move her arms.

Anyway, today she was very unresponsive after we got home from a dental appointment, so I did make an appointment with her Neurologist. I'll certainly bring up the possibility of LBD.

Me Ke Aloha

By JulieB On 2014.11.17 17:00

My husband Michael does the same thing with his hands that your June does, about 20-30 times a day. He is always emptying his hands on a table or over to the side of his wheelchair as if he's brushing something off to the floor.

I've read that Lewy Body patients often hallucinate about seeing other people, and commonly children and animals. At the facility where my husband is, there's another man in his residence who has LBD, and he occasionally sees a group of beings in silver helmets and red capes. Very detailed and odd.

God bless you as you care for June!


By daisy On 2014.11.17 17:14
One thing that has puzzled me for some time regarding DLB and PDD. Why is DLB considered a "Parkinsons Plus" disease when Parkinsons Disease Dementia is not, when it seems the only thing that differentiates them is the timing of symptoms. ie; if dementia symptoms appear within a year of motor symptoms then it is considered DLB; if more than a year then it's PDD.

Maybe I'm missing something here. In some reports they say 30% of PD patients develop dementia, others say say as much as 80%. Or is it that so many elderly patients that have PDD are not diagnosed as having DLB, or even dementia, simply because they have had PD for so long. They are simply written off as being senile.

By carman96 On 2014.11.21 00:13
My husband's diagnosis is Parkinson's with Dementia. His MDS thinks he has a Parkinson's Plus but not Lewy Body. He has most of the symptoms of LBD but he responds well to Parkinson's meds.
Julie, how is the treatment different for LBD?
All of these diseases overlap so much, and it ticks me off that they know so little about the differences between them. Seems so much of it is a guessing game.
So many of the research reports seem contradictory.

By Mary556 On 2014.11.21 22:19
Julie, thank you for all the helpful info you have given about Lewy Body Dementia. Although my PWP has not received that dx from a doctor, she seems to have many of the same symptoms. I am also wondering how treatment differs for persons with LBD?

Thank you for link to Lewy Body Dementia Association given in another thread. The section about medication gives this important 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.)"

My Mom feels a sharp object that is not there. She often tells me there is a pin in her clothes that is jabbing into her. I ask her to show me where it is and she points to her buttonhole. She had shingles last Christmas and odd sensations in one arm. I wasn't sure what to think about her sensation of the pin, but now wonder if that could be another form of tactile hallucination.

Yes, it is all very confusing.

God bless all of our PWPs and caregivers.

By JulieB On 2014.11.22 09:01
Carman and Mary,

You're right -- it is confusing. And I probably don't know much more than any of you who have read the Lewy Body Dementia site and/or spoken to your neurologists about LBD. But what little I've gathered has to do with a couple of things.

As the link Mary included and quoted said, giving antipsychotic medication to a person with Lewy Body can be devastating and risky. Not always of course, but sometimes even one dose of say, Seroquel (which can be a miracle drug for many people) can do damage that never allows the person to return to baseline. And there are fewer "safe" meds that can be tolerated by a person with Lewy Body Dementia. So once LBD is strongly suspected or diagnosed, any meds to help with the dementia and/or hallucinations have to be started slowly and the person watched diligently, and even then there's the chance that the med could do more damage that's irreversible.

I have also read that the end stages of LBD can be much harder to manage than that of other dementias. The person's hallucinations often become so dramatic and unfortunately, threatening, they can be in states of great agitation bordering on violence for long periods of time, very difficult to comfort or redirect. I read the blog of a woman who cared for her husband with LBD for years, and at the end he was in nursing care, and would be hallucinating horribly and very active physically (yelling, running, hiding, striking out at what he saw, etc.) for days at a time without sleeping, and then he would sleep for three days. As you can imagine, even though this case might not be the way everyone with LBD is, any kind of care with these symptoms would be a mammoth challenge. I've read that skilled nursing care for LBD often costs more than skilled nursing care for Alzheimers and other dementias.

Another difficult thing to consider is that sometimes the meds a PWP needs can cause hallucinations, so if there is dementia involved (and most often this dementia is LBD for a PD patient). Carbidopa/Levadopa (Sinemet) can cause hallucinations after years of use. One Parkinson's site says "PD drugs play a prominent role in the provocation of hallucinations and delusions." Michael's neurologist just prescribed a change in his Sinemet, discontinuing his evening dose (since he's tired by then, in a wheelchair and movement needs have decreased) to see if this will help at all with the evening hallucinations he's having.

It's so tricky. Prolonged use of Sinemet can cause hallucinations (just google Sinemet and hallucinations and you will find many reputable sites that cite the link between the two), Lewy Body Dementia can cause hallucinations, and we can see how challenging it would be to do anything medically to relieve a person with PD and LBD.

I have known a couple of people with advanced Alzheimer's and their dementia didn't present in the same way Michael's does. His memory is often pretty good, but dementia is still present. He is often lucid and seems to fully understand what's going on. But then in minutes he can be seeing things and believing things that aren't there or true. And then the switch is flipped and he's more himself. It seems almost like the way a camera lens is turned and adjusted, bringing a scene into sharp focus, and then making it blurry again, over and over. I see Michael's behavior like this, slowly going in and out of sharpness and blurriness, multiple times a day.

Maybe this didn't shed much light, but the discussion could be important, I think, when many of our loved ones may have Lewy Body Dementia and haven't been formally diagnosed yet.

One last thought -- most Parkinson's sites on the internet now state that between 50-80% of PWPs end up with dementia. The medical consensus seems to be that the number is higher than originally reported.

Such sobering news to end on. So I'll refocus on some things to be grateful for! 1. I'm thankful for kind, brave people here who understand. 2. I'm grateful for Michael's presence alone. Even though so much of his personality and abilities have faded, his very essence is a treasure to me and his smile lifts my heart each time. 3. It's above 30 degrees today where we live. 4. Our little Schnauzers Edith and Mildred make us laugh and increase our joy.

How about you?

God bless all of you this weekend! xoxo

By dans316 On 2014.11.22 11:57

June visited the Neurologist on Wed. Main reason for the visit was the state she was in on Monday, mostly sleeping, not very responsive, didn't want to eat, etc.
When I got her dressed that morning, I found an Amantadine pill on the bed which I thought she had taken before going to bed. I usually put the pill on her tongue and give her some soda and ask if she has swallowed it. Apparently the pill fell out of her mouth and she thought she had swallowed it. Anyway, after talking to the doctor, he seemed to think it may have been the cause of her state on Monday. Tuesday she was her usual self, and has been the rest of the week.

I brought up the subject of LBD, since they diagnosed that when she went to the ER after a fall in August. He said there is no test to tell, but since she was dx'ed with PD in 2006 and didn't show any dementia until about 2012, he feels sure it is Parkinson's dementia. He also confirmed my reluctance to medicate the dementia as now she isn't threatened by anything and the risks are too great. Her hallucinations are usually there is someone in another room and didn't I want to talk to them. Although I assure her there's no one there, I'm not sure she believes it. I often wonder if she is just seeing some object, like a coat on the back of a chair, and her mind just cannot decipher the information??

Well, tomorrow will be 51 years with her and we still start the day with an "I Love You" and lots of hugs and kisses, kind of still gives us something to be Thankful for not only on Thanksgiving but the other 364 days of the year also.

Me Ke Aloha

By LOHENGR1N On 2014.11.22 17:01
Yes this subject can get very confusing. The percentage of dementia varies from site to site. Before many didn't take into consideration delusion from medication and just wrote it off to dementia and aging. Lewy Bodies are present in Parkinson's Disease in fact the only way to be sure of true Parkinson's at this time is to upon autopsy dissect our brain and if LB's are there then for certain it is Parkinson's Disease. However PD lewy bodies are found in different parts of the brain than those found in LBD. Although LBD somewhat parallels PD it does present different symptoms which are very hard to sort out. The whole situation is a big confusing mess. Many doctors say they want informed patients but bring up LBD and you're likely to get raised eyebrows and a change in demeanor of the doctor as they tend to take questions like this personal regarding their capabilities and schooling as they were taught the facts and some have difficulty explaining the difference between the two. Well now I've added to the confusion I suppose I better end for now. Take care, best of luck and hang in there

By carman96 On 2014.11.22 21:55
Dan, glad June is doing better. You are a sweet man, so loving to your wife. 51 years is awesome! So inspiring.

By Mary556 On 2014.11.23 07:46
Happy Anniversary, Dan and June! (in your honor I'm listening to Iz sing "In This Life" :)) So happy to hear that your bride is feeling better now. It is very good to pause and give thanks every day.

My Mom does not take Amantadine, but sometimes experiences episodes of severe lethargy /grogginess similar to what you describe, Dan. In her case, it seems to be related to overheating or dehydration. This time of year we need to keep adjusting our thermostat to be warm enough at night but not too parched during the day. I keep humidifiers running constantly while we are awake and try to increase our intake of fluids... easier said than done.

In the last couple of years my mother has experienced delusions and confusions, occaionally a hallucination. I do see a connection bewteen these symptoms and her meds. It is such a delicate balance. Mom's first hallucination was a couple years ago. We were sitting in the living room talking lucidly when suddenly she told me that a man had just walked in our door at the lower level and was now in our kitchen. Believing her, I froze (thinking it could be a home invasion). Mom kept pointing at the kitchen insisting that I investigate immediately. "Go! Go now!" I'm not sure if she wanted me to shoo him away or give him a cup of tea.

Thank you again, JulieB and Al and everyone who spoke about LBD and PD+. It is still confusing but not as much as before.

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