edited out by matha.

Martha,

You can read many stories that have already been posted to the LBDA Forum. In particular, you might scroll through the various posts in the Introductions area and the Symptoms and Diagnosis area.

It's very important to find a good neurologist or psychiatrist who can treat the LBD symptoms.

Robin

Welcome, Martha. I'm sorry you have to join this forum but it's the place to be if your loved one has LBD. You will learn a lot and will feel greatly encouraged in your daily battle.

My husband was originally diagnosed with Parkinson's Disease in 2005 and it was noted that he also had some early dementia. Looking back, of course, I can see that he had both PD symptoms as well as many dementia features well before 2005.

I had always suspected that his symptoms were more like LBD than PD and he was just recently diagnosed with LBD, although his treatment has remained the same. He takes Stalevo for his PD symptoms and Exelon patch for his dementia.

It's hard to read all the posts, of course. Find the categories that concern you most and read as many as you can. Robin will help you by directing you to threads or articles that will help you specifically. --Pat

Martha -
You posted elsewhere that your husband threatened to kill you last night. Has the Ativan been stopped? Please let hospice know of the reaction it caused. Has your husband threatened to kill you prior to the Ativan? Is there an in-patient hospice facility near you? For your safety, you may need to move your husband there.
Robin

'I will end this on a lighter note,

my husband tht treaten to kill me if he could get out of bed,
He could kill or hurt me only in his mind and imagination

Since he hasnt been able to cut his own meat , or open a medicine bottle,since his first stroke, due to numbness, lack of co ordination and lack of strength in his fingers..... so only in his mind, no danger to me or anyone.
I do have to watch out for those kicking feet if he gets wild again.LOL
.

Martha, I'm glad to hear you are in no real physical danger. [Only your sanity is at stake. LOL]

It occurs to me ask if your husband's lung cancer could have metastasized to his brain? It is one site where lung cancer often does spread. This could also account for these issues.

Like you, I have worked as a health care worker [I am an RN] and have plenty of experience in caring for patients but it's a far cry from 24/7 care of my own husband. The physical issues are easy enough but dealing with the other stuff is a real challenge. The past few years have been a nightmare. You certainly have my prayers and moral support! --Pat

Welcome Martha - I am sorry you are having to deal with this too. In answer to your questions, I think a lot of us didn't just clearly get a diagnosis of LBD when our LO started having obvious signs that something was going wrong.
In my case, I took my dad to his GP in late June last year because I noticed things like: taking off his clothes and walking through the house, especially in the middle of the night, lack of empathy, inability to problem solve and be rational, memory issues. His GP told me "your dad has had some dementia for 3 years and has been able to hide it well. I also think he has Parkinson's, but he doesn't have the tremors so I don't know what he has. He is unable to hide it anymore."
After he was hospitalized when he had a huge decline, I met a PhD level nurse whose job is diagnosing what type of dementia her patients have. When I described his symptoms and his rapid decline, she said "It sounds like he has LBD. You should get him to a memory center where they can diagnose this." I was absolutely clueless about LBD - had never heard of it but started researching it.
At that point he had been moved to a nursing home for rehab for his standing/walking. I tried to get them to help me with a diagnosis. They only were concerned with his physical problems and saw no connection between his brain problems and his physical problems. They treated me like I had 3 heads and not an ounce of sense. They treated him like he was a batch of muscles that needed toning. When I mentioned LBD they actually got kinda nasty and the head nurse said "you can only diagnose that after someone is dead and has an autopsy." Well, they diagnose Alz. all the time before people are dead, and technically, that is the only way to really tell if it was Alz. These were not people who knew much about LBD, hated any questions or suggestions from family members and even the doctor there pretty much had the same attitude. He said "Your dad is here to learn how to walk again. He'll have to see another doctor for that." Then they wouldn't let me take him out of rehab to see another doctor because he was "under a dr. care in rehab." We were between a rock and a hard place. He couldn't leave the nursing home, they wouldn't figure out what was wrong.
So, once he got into assisted living he got a new nurse practioner, a neurologist and a psychiatrist. In their letters they sent me they have mentioned the "possibility of LBD." After all the reading I've done, there is no question in my mind he has LBD so I just go with that.
Sorry this is so long, but it's taken a long time to get a health care pro. to even say that much. Can you tell how frustrated I've been trying to get a diagnosis? And, he is now unable to travel to a memory center to get a more solid diagnosis. If I could get him to New England I'd take him to Dartmouth or Univ. of Vermont Med. School's memory center. I just don't know how to get him moved 500 mi. and place him in a facility here. I'm working on that one......
You may continue to be frustrated with not getting a diagnosis, but just do your best with what you have. I got copies of the LBDA pamphlets, which I am going to distribute to the nursing home where he was and the ALF where he is now, and his doctors. This, along with a letter of all his symptoms for the past year. Maybe this will make a difference.
Good luck, Lynn

I will note that far fewer than half of those diagnosed with LBD actually have LBD upon brain autopsy. It's a very difficult disorder to diagnose, especially when vascular dementia (from a stroke) or Alzheimer's pathology is involved.

As I ended the post above he had woke and got up, got hisself into the wheel chair came to the room and thought it was 4 am and breakfast time,

leaving the forum

Martha,
One of the smartest laypeople I've ever met was also 100% sure his LO had LBD (and multiple MDs were convinced as well) but, alas, the LO did not. I encourage you to make arrangements for brain donation now for your husband. This can never be done too soon.
Robin

Robin - what was the result of the person who didn't have LBD? Is there some diagnosis that is common when it appears that a person has LBD but their autopsy doesn't show LBD? I am very curious about this. Thanks. Lynn

Martha,

The facts are:
(a) this disorder can ONLY be diagnosed upon brain autopsy,
(b) MDs are WRONG more often than they are right in making this diagnosis.

Robin

PS. No need to quote preceding posts in your replies.

A diagnosis of LBD can be made, and is made before death. It can be confirmed or refuted on autopsy. We are all here because our LO is presumed to have LBD and we must all reach out to support one another. I may be wrong here, but for me, this forum is all about support and encouragement and only secondarily for information. Martha, I hope you will stay on the forum. We all need each other.

I don't think anyone should have to quit this forum because they think they are not being respected. We are here to support one another and I think we need to all read our posts before we hit "send" to see how our posting might look to others. Being a little more polite will go a long way towards everyone feeling respected and valued.
Re: diagnosis - if the medical profession only relied on autopsies for absolute diagnoses, there would be millions of people who wouldn't be treated for a lot of diseases. It is really not very helpful when people tell us things like you can't be SURE it's LBD. Family members and medical pro. are doing the best we can given the lack of an absolute diagnosis. We have lots of Alzheimer's facilities in this country, right? And Alz. cannot be absolutely diagnosed until autopsy, as I have also been told by med. professionals. But we don't stop trying to house and treat supposed Alz. patients, do we? We still treat MS, ALS and many other diseases BASED ON SYMPTOMS, TESTS AND BEST GUESSES. So, if it looks like a dog, barks like a dog, acts like a dog, etc. we're going to go forward and assume it's a dog and behave accordingly.
I think it is not only unhelpful, it just adds to everyone's stress and frustration who is dealing with this when we are told "you can't really diagnosis LBD till autopsy". How is that helpful to any of us unless we get new data which might change a best guess at a diagnosis?
I hope everyone hangs in there and doesn't quit. There are a ton of supportive people here. And get on the chat - it's a great place to vent!
Lynn

Martha - thanks for asking this question again. I haven't gotten a response yet and it would be helpful to know what it was. I wonder if anyone has studied what people had, when it looked like LBD, but wasn't? Is there any one disease that is most commonly mis-diagnosed as LBD? Anyone out there know about this? Thanks. Lynn