I need some help. This whole situation is like reading tea leaves without a guide. It seems to me like there has been a major shift.
Since my husband was diagnosed with LBD, I have noticed a change in the doctors' approach. The neurologist is now becoming more active (set next appointment in 4 weeks instead of setting the next appointment for 6 months). In contrast, the psychiatrist who has been seeing my husband every month scheduled the next visit for 8 weeks from now.
A little more context is probably needed. My husband's resting blood pressure and pulse dropped significantly 4 weeks ago. He has started retaining fluids more than usual, partly because he's not emptying his bladder and partly because he's not drinking enough (he forgets to drink) - odd that it makes him hold more fluids. Also, his liver tests were high (2 times as high as normal).
The nuclear stress test and echocardiogram both show that his heart is the same as it was 2 years ago so the changes are not due to his heart. It is, of course, the LBD. The cardiologist took my husband off of his blood pressure medicine.
Today, the neurologist took my husband off of Vytorin and almost all of the supplements that I have been giving him, including the Fish Oil, Garlique, Move Free (stuff to help his bones), Vitamin D, and Vitamin E.
The person from UTSW said my husband is on the "moderate severe" border.
He is having 19-23 hypopneas an hour with a VPAP. His oxygen levels on the VPAP without the oxygen machine falls to 78%.
My mind just keeps analyzing the situation and trying to figure out where we are in the process. Can you help me? I see so many things happening with my husband on a daily basis. Little things and big things. He's now starting to forget the date even after he was told a couple of minutes before ... not all the time, but it is becoming noticeable. Now, he often forgets to flush the toilet. He's misunderstanding my questions and reading road signs and telling me about the traffic situations more (for example, reading the "left turn only" sign or telling me people are stopping ahead in 5 o'clock traffic - duh!).
My husband is early in LBD, still able to travel alone. Mostly doctors seem to not get why he was diagnosed, since he doesn't have hallucinations yet. I don't think it much matters whether a neurologist or psychiatrist is the primary doctor, though it might depend on whether physical symptoms or hallucinations and paranoia are the worse problem.
I don't get his doctor taking him off all the supplements, because some (vitamin D, maybe fish oil) might help him function better. One approach would be to divide up medicine/treatments into those that help him function better and those that are supposed to extend his life. CPAP, vitamin D, sinemet, and Aricept/Exelon will help him function better. If his blood pressure is fluctuating wildly it is probably better for him to be off blood pressure medicine because the risk of a fall from low blood pressure is greater than the risk of a stroke from high blood pressure. The doctors may be thinking that there is no point in him taking supplements to try to prevent a heart attack (such as garlic) because he is getting to the point that it would be more merciful if he died of a heart attack. You have the right to agree or disagree with that.
Sharan, i think its time to sit with the dr and get a prognosis for DH. ask why hes being taken off all meds and supplements and get a clear picture of why its happening. with impaired liver symptoms some meds cause that too. they may be trying to start from scratch and add back in accordingly. dehydration can cause a varied mirage of complications, very serious i might add. drops in BP are some of them. urinary output another. you must get him drinking fluids. my DH suffers dehydration asap without 2liters of water/day. also i will add if they tend to chew pills that are time released it can give them a higher dose on intake and can cause issues as well. my DH just had an episode of drop in BP and its casue he chewed his bladder med again instead of swallowing whole. then again the diseased part of the brain may be affecting the part that controls metabolics. i would get some input from the drs on how they plan to proceed with his care. divvi
Lewy body dementia (LBD) is a progressive brain disease and the second leading cause of degenerative dementia in the elderly. The clinical name, “dementia with Lewy bodies” (DLB), accounts for up to 20% of all dementia cases, or 800,000 patients in the US. Over 50% of Parkinson’s disease patients develop “Parkinson’s disease dementia” (PDD), which accounts for at least 750,000 patients. (PDD is also a Lewy body dementia.)
My husband was diagnosed first with Parkinson's, but when we went to the Movement Disorder Specialist he said Lewy Body Dementia. The Parkinson's symptoms are moving slowly, swinging only one arm when walking, balance difficulties and tremor (but that may not develop until later). Lewy Body Dementia tends to involve more hallucinations and difficulty with executive function and less dramatic early memory loss than Alzheimer's, but people can fall anywhere on the spectrum (not least because it is possible to have both).
Thank you all for your comments. My DH's diagnosis came after a long series of doctors visits (like so many others). The doctors were teetering between LBD and FTD (frontotemporal dementia). LBD looks a lot like FTD because it affects the executive functions, visual spatial, and memory. The memory impairment from both FTD and LBD is more a function of accessing the memories than the memories themselves. The frontal and temporal parts of the brain sort information, but the mid-brain also sorts information. The difference, as I understand it, is that the mid-brain translates signals from the body (including sight and sound) and some of those signals go to the frontal and temporal lobes of the brain for processing. This is why the two forms look so much alike. Each have their own "hallmarks." FTD has the hallmark of atrophy. The MRIs did not show any atrophy so my DH likely does not have FTD. The hallmark symptoms of LBD include REM sleep disorder (my DH moves a ton during his sleep, acts out his dreams), the autonomic system (I think of them as the "automatics" because the autonomic system controls the aspects of the body that do not require conscious thought ... at least not primarily), and significant fluctuations in his cognitive functions from day to day and from hour to hour. My DH is definitely experiencing autonomic dysfunction. Central Sleep Apnea involves aspects of the autonomic system (I don't understand the details, but the sleep specialist confirmed the connection). My DH also has had the drop in blood pressure and pulse and has problems with his urinary functioning (he has an enlarged prostrate, but is also having issues despite being on Uraxotral). In addition, his cognitive functions vary greatly. At times, he can be comparatively "normal" - the clarity of his thinking is striking and on point. At other times, he is like a lost child without understanding where he is or what is going on around him. I realize the AD and other dementias have variability, but the variability with LBD is supposed to be more significant. I think that is because the problem is with signaling and not with the information storage or processing center itself.
As far as the hallucinations go, my DH had a psychotic break in December of 2007 and both saw things and heard voices. After they adjusted his medicine, the visual hallucinations stopped, but the voices continued. The voices dramatically declined when they took my husband off of Requip. I didn't know this, but Requip can cause some people to have hallucinations. What was interesting was the voices didn't start until more than 6 months after being on Requip. The neurologist said that LBD patients' reaction to medications can change over time.
LBD, like FTD and often EOAD, tends to move quicker than AD. Like AD, it can plateau, but the likelihood of a plateau later is not very high. Movement disorders are also involved in both FTD and LBD, but LBD movement problems are more Parkinson-like. My DH's first symptoms - the ones we noticed first - were the movement disorder. On reflection and after a lot of discussion, we believe the symptoms of LBD date back to late 2002 or early 2003.
What I understand is that it is very possible that my DH could lose his cognitive and motor functions and continue to live (physically) for an indeterminate period of time OR he could die from the autonomic dysfunction. From my research, some people with LBD get so bad that they are put on hospice and then "recover" for a period of time only to go back on hospice. It almost sounds like being on a roller coaster on steroids.
I am struggling because I believe I understand what is happening and it all seems so overwhelming and so fast. The neurologist already told me that we were looking at Multi-System Atrophy if the heart was not the source of my DH's drop in blood pressure and pulse. He said that, based on my DH's condition and having followed him since January 2006, that we are looking at an average of 18 months (with the range being 12 to 24 months and the shortest time being 6 months). The expert at UTSW said my DH would likely be much worse a year from now.
I don't like knowing what is happening, but I want to know more. I feel like a push me - pull you.
As far as his blood pressure, I am trying to make sure he drinks more and it seems to be helping some. So, our new symptom is that he forgets to drink to the extent that he is becoming dehydrated.
I hope some of the information has been useful for someone. If I've got something wrong, please tell me.
Sharan - we all are tht way wanting to know as much as possible but at the same time not. Education gives us some power in we can be prepared as much as possible. If we did not want to know, we wouldn't be here reading and learning. Thank you
My husband was diagnosed much earlier, around the time he realized he could no longer continue to work as a community college professor. But it is now a year later and he has progressed very slowly. The first six months or so I was in a panic and expecting things to get worse very fast. That was good because I got a lot of financial and legal issues into order. Now I'm more relaxed and accepting and he doesn't seem as bad, though I'm realizing he has lost some ground in the last year.
Very interesting. My DH was diagnosed with AD 3 years ago. His neuro put him on Razadyne and last year added Amenda. He was great for the past year and then last month took a nose dive. The neuro did an eeg. Yesterday we went back for the results. The eeg showed very bad signs in the right frontal lobe. The neuro said he might also have FTD. He said we had to be very very careful about what medications he takes because they can have an adverse affect on him. He also said we had to be very very cAreful about him getting any type of infection. The neuro said all these conditions are difficult to diagnose. But have most of the same results.
We usually saw the neuro every 4 to 6 months. Now he wants to see him in 6 weeks. I told him the VA wanted him to have and MRI and another long test for his memory. He said forget it. Don't put him through it...it will serve no purpose. We know from the MRI that his right lobe was shrinking a 2 years ago.
The neuro said to me "You know there is no cure for this" I said "I knew, but how long does it last" (I didn't want to ask him how long my DH would last so I worded it like that). He said probably 3 to 5 years at the most.
Any comments from you all would be appreciated. If you have had this experience. I was not shocked because I know his condition is getting worse.
Judith...I remember very well what the neurologist said to us after looking at all the test results...he reached across his desk took one of my hands, one of my husband's hands and put them together and he told us to go and have the best life we could have....very telling.....I, of course, knew exactly what he meant. And that is what we did.....my husband lasted for eleven years after that moment.
Vicki, the man was very perceptive.....and, I am doing very well, thanks for asking. In fact I am leaving in the morning for a week in Branson, MO with my daughter and two of my grandsons. We do a lot of traveling together and I am looking forward to lots of laughs and fun with the boys.....
Oh divvi! Thanks so much. I am one of those people that functions much better when I have as much information as possible. I prefer to know what might happen. I know if you've seen one case of AD you've seen one case of AD, but I would not have made it this far without this site. You ladies (and men) are amazing.