I had a long talk with Dado's doctor in residence yesterday, a very fine man. I told him how Dado seemed so "different" from the rest of the dementia patients. Though most of them are in wheelchairs, they can still move themselves around with their hands, and they speak, gibberish yes, but they speak. Of course almost all of them are older, Dado is now 65.
I always knew he had Parkinson symptoms and of course his disease progressed very rapidly over a course of 3 years. He now is totally incapable of walking, talking, and any taking care of himself. Basically he is put in his chair each morning, and spends most of the day with his eyes closed. No sounds. Thank God he can still eat, with assistance.
I had suspicions that maybe the Lewy Body was not what he had, as it is said most of them have hallucinations. Now I have found out not ALL of them do. Of course I think that may be the case now, I see him staring at things that look like there is nothing to look at. I have done more extensive research on this disease, and yes, it certainly seems to be what he has. There is much more PHYSICAL symptoms than AD. In the beginning when he was forgetting, sundowning etc., it really seem more to be AD.
The other day he reached out for me, and looked right at me, and made this sound, kind of like a plaintive wail. I held his hand and said it's ok. He got quiet for a moment, then grabbed my hand again and looked right at me, making that little scared sound. As weird as it is, I was happy for any kind of communication, though it was very sad and painful to see him so fearful.
Knowing what he has, for sure, for some strange reason has me feeling somewhat better, I know what to deal with, kind of...and life moves on. I found a great site to read case histories of Lewy Body dementia, I will go find it and post the link here.
The only thing that I still get from him in communication, is, if his eyes are open, I can manage to get him to pucker up for a kiss. The words are gone now, the "hi Honey" that I could coax out of him a month ago.
Off now to address some of your posts, with caring, and concern.
I admire your determination, resilience and commitment so much.
In the context of things, I "look forward" to going to the site you linked. "Picks", "Lewy Body" and Parkinson's were discussed regarding my husband as well. When the professionals settled on FTD I settled on it too. Plus, it could be demonstrated on the MRI's, especially one maybe called Spect(?)
But, I will always remember something his hospice doctor said, that he had never seen such a young man with symptoms of so many illnesses. Why, after all this time, is something I can't put behind me- I don't know. Perhaps because as Nikki once said to me, I may have resigned myself to what happened but I never accepted it.
I guess I am still looking for resolution and peace.
Coco, your love for Dado shines through every post...I admire your strength and commitment.
It's strange, I too found it better when I was able to know what type of dementia DH had...I could research it, learn more and perhaps I could use that knowledge to temporarily stave off the inevitable. I felt we were both less "victimized" by the disease and whatever I could learn would help me be a better caregiver, a better partner and stronger. I felt more "in control".
Abby* my dear friend, I wish I could hug you and make it better...you deserve peace and resolution. Unlike many of us, you had only a relatively short time from diagnosis to death, complicated by so many, many things. I believe since you and your husband were so young and his illness progressed so quickly you never had enough time to get to the acceptance phase.
Coco, I also suspected Lewy Body Dementia with Claude and research more I did more believed that he had it rather AD with Parkinson.
I glad Dado has good caring and doctor. I tried to Claude's talk to doctor. I did some extensive research LBD and tried to discuss it the doctor and and he blew me off. He told me he had the medical degree and I didn't know what I was talking with about! the Sinemet he prescribed worsed his motor problems and the hallucinations. I took him off the the Sinemet and he he couldn't to it. I was I was with him 24/7 and how it affected him and it he (the doctor wanted be stay him 24/7 he could stay on it!
thank you LFL, Abby, and redbud! How awful that a doctor would "blow off" someone that does research. It seems that sometimes even when you tell them< "I am not trying to override you but my research says...", they still get their egos in the way.
I had actually mentioned to this doctor when Dado was admitted, that they suspected Lewy Bodies and he confirmed that to me the other day.
I think the main thing that has me feeling "better" knowing the diagnosis, is knowing what to watch for, and why he is so different from other dementia patients. This is not to play down on anyones suffering, my God no. I do not think I would rather see him like one of the other guys, jabbering constantly, yelling, and trying to escape even though he cannot walk. He sits by the entrance in his chair, his old blanket and his veteran hat, and asks you to hold the door open when you enter. Um, don't think so. (the are all so precious)
abby extra aloha to you today. You are a shining star.
For a long time we thought my husband was in the early stages of Lewy body dementia, but when he declined physically faster than he declined cognitively the doctor changed the diagnosis to Multiple System Atrophy. There is a lot of overlap between the atypical parkinson's diseases, they diagnose depending on which symptoms are predominate.
It seems that it went hand in hand pamsc. ( I was hoping you would chime in...) I noticed his legs shaking first, and right after that his cognition. Then they both seemed to run neck in neck. Very quickly over a 3 year span. I realize there is no 100% diagnosis unless they do a biopsy, yet somehow I feel Lewy bodies is the main one. The Parkinsons shaking seems to kind of stay the same, shaky hands and the occasional spasm in his legs. His right hand is totally curved and "stuck", we put that thing on his hand to try to stretch it out.
I had one of the better visits on my trek to see him yesterday, what a relief. He had his eyes open for almost an hour, first time in a long time. I fed him crispy organic grapes and blueberries, he loved that. The last thing I do after my half day visit is the grooming in his room, shaving, teeth, haircut or trim, nails cut, and rub coconut oil over his dry skin. He just totally relaxes with his eyes closed when I do it, I can tell he knows it is me ...his silly devoted wife.
We had his annual care plan meeting yesterday. The head nurse said, "HOW did you take care of him at home for those two years??" I told the story yet again, it is a tough one like so many.
Lewy body disease is a kind of dementia. Dementia is a general decline in cognitive abilities (thinking, memory, language, etc.) usually due to degeneration of the brain. There are many kinds of dementia. The most common and best known kind is Alzheimer's disease. Lewy body disease is thought to be the second most common kind of dementia. It causes cognitive problems similar to those seen in Alzheimer's disease and motor problems like those in Parkinson's. Like Alzheimer's disease, Lewy body disease is currently incurable and it gets worse with time. It should be noted that there are some kinds of dementia (for example, those caused by a thyroid problem or a deficiency in vitamin B-12) that can be reversed. That's why it's important to have a full work-up done when dementia is suspected.
Lewy body disease is also referred to as dementia with Lewy bodies, Lewy body dementia, diffuse Lewy body disease, senile dementia of Lewy body type, and Lewy body variant of Alzheimer's disease.
Despite its prevalence, Lewy body disease is not well known. Every year, it seems that Newsweek and other popular magazines run a feature article on the progress made against Alzheimer's disease, and any new information about Alzheimer's is big news. In these articles there's never a mention of Lewy body disease. In our experience many health professionals (physical therapists, nurses, and even some doctors) aren't well informed about Lewy body disease.
What are Lewy bodies?
In 1912, while Frederick Lewy was examining the brains of people with Parkinson's disease, he discovered irregularities in the cells in the mid-brain region. These abnormal structures (microscopic protein deposits found in deteriorating nerve cells) became known as Lewy bodies. Since that time, the presence of Lewy bodies in the mid-brain has been recognized as a hallmark of Parkinson's disease. In the 1960s, researchers found Lewy bodies in the cortex (the outer layer of gray matter) of the brains of some people who had dementia. Lewy bodies in the cortex are known as cortical Lewy bodies or diffuse Lewy bodies. (That's why Lewy body disease is sometimes called cortical Lewy body disease or diffuse Lewy body disease.) Cortical Lewy bodies were thought to be rare, until the 1980s when improved methodologies showed that Lewy body disease was more common than previously realized.
People with Lewy body disease have Lewy bodies in the mid-brain region (like those with Parkinson's disease) and in the cortex of the brain. It's believed that they usually also have the "plaques and tangles" of the brain that characterize Alzheimer's disease. Conversely, it's believed that many people with Alzheimer's disease also have cortical Lewy bodies. Because of the overlap, it's likely that many people with Lewy body disease are misdiagnosed (at least initially) as having either Parkinson's disease or Alzheimer's disease. A big factor in the misdiagnosis might be that Lewy body disease is relatively unknown.
Symptoms of Lewy body disease
People with Lewy body disease have cognitive problems (problems with thinking, memory, language, etc.) similar to those that occur in Alzheimer's disease. Therefore, it can be hard to distinguish the two. Some doctors think there are three distinguishing features and the presence of two of them makes the diagnosis of Lewy body disease probable:
Motor problems typical of Parkinson's disease but usually not so severe as to warrant a diagnosis of Parkinson's. Of these problems, an impairment in walking (a shuffling gait) might be the most common one. Also common would be muscle stiffness and a tendency to fall. Tremor would be less common. Fluctuations in cognitive function with varying levels of alertness and attention. Periods of being alert and coherent alternate with periods of being confused and unresponsive to questions. Visual hallucinations, usually occurring early on. Delusions may be common too. It's possible that people with Lewy body disease are better able to form new memories than those with Alzheimer's disease. Compared with Alzheimer's, Lewy body disease may affect speed of thinking, attention and concentration, and visual-spatial abilities more severely than memory and language. Depression may be a typical symptom too.
Treatment
Right now, doctors prescribe drugs to treat four major features found in Lewy body disease (also see the medication section of our Information page):
Cognitive problems. Usually, a drug like Aricept is prescribed. This is the same drug that is commonly prescribed for Alzheimer's disease. In some people, it seems to slow the progression of the disease. Motor problems. Levodopa/carbidopa (Sinemet) is frequently prescribed to deal with the motor problems. This medication can worsen hallucinations, though. Hallucinations. An antipsychotic medication, such as Zyprexa, might be prescribed. This kind of medication can worsen motor problems, though. Also note the FDA warning. Depression. In cases of depression, an antidepressant, such as Zoloft or Prozac, might be prescribed. Why do some people get Lewy body disease?