I am a new member and all the post have been so much help to me.
My spouse was originally diagnosed with MSA, changed to LBD in Dec..
One of his major problems is blood pressure. When he is laying down it will be 180 to 200 and immediately upon standing it drops dramatically to 90 or so. Also has major drops during the day just upon standing, yesterday 69/54. I haven't read any post regarding this issue. Wondering if anyone else is experiencing this problem. He cannot be out in the sun at all because it causes a major drop in bp.
Thank you,
Linda

Something like 40% of those with LBD experience OH (orthostatic hypotension). Treatment for OH in LBD is the same as treatment for OH in MSA.

The sun issue may be related to different elements of autonomic dysfunction: lack of sweating and lack of the body's ability to regulate its own temperature.

Thanks Robin for your reply. He has been on flourinef for several years for this problem.
His speech is almost a whisper - - does your LO experience this as well?

Florinef can be very effective in many for OH.

Hypophonia (low voice volume) is very common in PD, LBD, and MSA.

This is very common. My husband went from hypertension to hypotension since having Lewy and we had him taken off the BP meds he had been on for 30 years. He also has problems with his thermoregulatory system which is also common in LBD. Sometimes his face is hot and his hands are ice cold. Other times, the reverse is true. He is unable to tolerate either heat or cold very well.

Diminished voice volume is another feature common to LBD and PD. My husband's strong, resonant voice has deteriorated over the years. He is not yet down to a whisper but is sometimes almost inaudible and I have to lean my ear very close to hear. And the fact that he's always bent over makes it even worse.

Sadly, I just took my husband to the ER this morning. Symptoms were increasing confusion and decrease in mobility. He had been independently mobile until yesterday am.
ANyway, working DX is orthostatic hypotension. He already has CHF, so he is on BP meds eventhough he has never had high BP. They expect him to be there for 2-3 days.
This is our first hospital visit related to Lewy Body
I am very scared about leaving him tonight. But I do know that if I don't get sleep I can't help him during the day
Very overwhelmed right now.
And my husbands voice is also very very low and has been getting worse for about 5 years

I know it's hard but you should take advantage of his hospital stay to get some sleep. How well I remember a couple of years ago when my husband was hospitalized I got six whole, uninterrupted hours of sleep for the first time in months. What a relief! And I was able to visit him in a more refreshed state and with a somewhat clearer mind. Take care! I'll be praying for you both!

My dad's voice, for about 2 years, has often been a whisper. Then he can actually scream when he gets out-of-control frustrated and angry. Between his garbled thoughts, garbled words and the whisper it is extremely difficult to understand what he is trying to say.
This happened to me yesterday, and every exchange turned him into a rage because I couldn't understand him and asked him to repeat what he'd said, or I answered what I thought he was asking. He spent most of my visit (which was thankfully short yesterday) with his fists balled up, shaking them at me, with a look of rage on his face because I was having a hard time guessing what he was saying. I know it's his various diseases, but I was so thankful I hadn't planned a long visit - I just couldn't take it.
Sandi - sorry you're having to do the ER/hospital stay thing. It is exhausting for everyone. Lynn

Sandi,

I'm sorry for the increasing problems and hospitalization, but as the others have said, much of this sounds familiar.

Lynn,

That goes for your recent visit. I know those balled hands. My mother seldom says anything intelligible. We just talk at each other, not really conversing. Sometimes when she'll lean in and raise her voice with a bunch of nonsense sounds, I'll just repeat it with the same body language right back -- and she'll start laughing. Go figure.

Garnet

Maybe the mimicking will work and I can get him to laugh. I'll try it ONCE tomorrow and see how it goes. He will probably get more angry, but who knows, maybe it will just break the cycle of the enraged face and balled fists. Thanks for the idea! Lynn

Couple days ago I found a site that had information from doctors that had a live webcast in June 2009, very intersting - now I can't locate. There was some information I wanted to share with my husbands doctor. Can anyone help?
Thanks,
Linda

Sounds VERY familiar, the passing out when he was standing, just stood up or in the sun became common place. The doctors at the ER couldn't find a thing wrong, however a doctor did once decide he was dehydrated. When we got him hydrated again, he got better for a while. As always though, the downhill slide began again and we became more and more frustrated over the lack of a diagnosis. Most doctors are in such a rush because they have hundreds of patients to get through that day, that you have about 15 minutes max to get the urgency across. In our case, Dad hid it and Mom wouldn't "tell" on him until it was so undeniable something was wrong.

Now, three year post diagnosis, he has ALL the symptoms and is unable to feed himself, walk, or carry on a normal conversation. The quiet voice plus the "word salad" makes it hard so what we do is respond like we know what he said with a positive response. People always ask if I understand him and I shake my head no, I am just trying to converse however I can. He usually doesn't get angry but we also never argue with what he says, we distract. A good source of help is a support group, it give you people to bounce your ideas off of and they usually learn from you. Since LBD progressed rapidly with my Dad, we gave other people ideas that we had figured trial and error.

Good Luck!

OMG, that was us a year ago. Deydrated and she got better. Took her back to ER in May and no diagnosis. She's supposedely fine. That's when I went to primary and asked for neuropsychological exam. I'm so worried about so many things, but particularly the blood pressure thing. Mom is still medicated for hypertension and her blood pressure still is a bit higher or normal with all the meds, but how do I know when it's going to turn? She "fell" off the toilet a month ago. Fortunately our bathroom is so tiny that she "fell" into the wall so she didn't actually fall, but she also gets these faint spells. I can't protect her all the time 100%. Again, our house is small, so whenever she has these spells, she's not in a big open area, but I just know that one day not too far out she's going to have one and there will be nothing to grab onto.

My dad came out of respite last week following a three week stay. Mum took him home and that night he became very agitated trying to get out of the house and into her room. Eventually she got him to bed after much convincing and he cursed her out in a very loud voice that she was sure the neighbours would have heard. She was in such a state she had him admitted to hospital the next day in fear of what would happen that night. As you all no this manifests at night. He was just as bad that night in hospital and they were not prepared for his behaviour so mum gets a call early in the morning that there has been an official complaint and she will have to come and get him. His GP arranged to have him admitted to a pshyc ward at another hospital hoping it would get him higher on the list to be admitted to high care or a dementia nursing home. We have been calling on all the nursing homes reminding them of our urgency and it looks like he will be placed this week. A good friend of mine actually works in a managerial position at this facility and mum and I are soo grateful to have him finally get the care he deserves. Visiting him in hospital was heartbreaking and his speech is a whisper and he imagins there are things in his hands. I had not seen dad for 2 months prior to this all happening so have been struggling with how much he has declined. I have been getting sooo much info from this forum and have printed out most of the discussions and given them to mum to read as she does not get online. She had drawn much comfort that others are having the same struggles that she has been having. As many have said they are fine in the day and you wonder if people believe you about what goes on at night as they don't see that side of the disease. MY love goes to all the caregivers and their lo's.

Kelli - it's amazing how many people don't see the changes we see in our LOs, whether it's behavior changes at night or during the day. You just have to be very vigilant in being an advocate for your LOs care and treatment. Glad you are able to get placement for your LO. Best, Lynn