I've visited this forum many times, but just joined today. Briefly, here is my situation:
My husband was diagnosed by a neurologist in 2005 with probable PD/PDD. We were told at the time that it could be LBD, but the fact that he initially responded well to the PD med [Stalevo] led him to believe the PD diagnosis. Just yesterday, however, we saw a new neurologist, as we have moved, and he stated that my husband most probably has LBD [which I have long suspected, as he never exhibited a resting tremor and the dementia, esp. hallucinations and delusions/illusions, coincided with, or even preceded, the PD symptoms he has.] He is 80 years old. I am 64.

My husband has been hospitalized three times in the past year for other issues, and in and out of a SNF and two ALFs. He has been home for three months now and I am his sole caregiver. As a licensed RN, I can manage his catheter, etc. easily, but have a lot of difficulty managing his behavior and my own responses to it. Thank you for your forum. I really need it.

mockturtle,

Sorry you've had to join us here but welcome.

I found what you had to say about being an RN and having no problem with some aspects of care but big problems with other aspects to be fascinating. Thank you for sharing that. So many wives feel guilty about placing their LBD husbands in facilities because doing the 7x24 medical care is exhausting on top of dealing with the dementia and behavioral issues.

PDD is also a Lewy Body Dementia so I'm not sure I understand the difference between a PDD diagnosis and an LBD diagnosis. It's a rather arbitrary breakpoint: If someone's had PD symptoms for more than a year, and then they get dementia, they are diagnosed with PDD but if someone has dementia symptoms first or dementia symptoms within a year of parkinsonism symptoms, then they are diagnosed with DLB.

Robin

As I understand the classic distinction, in PDD, the dementia follows the PD by several years, whereas in LBD they are more or less simultaneous.

One year is the rule (according to the published diagnostic criteria). And note that in DLB there's no requirement for parkinsonism.

Lewy Body Dementia is a term that includes PDD and DLB.

My LO has DLB with no tremors, but she does have that 'feet stuck to the floor' problem seen in PD.

If I hadn't read that PD/PDD/DLB were all synucleinopathies I would never have made any association with PD in my mother's condition whatsoever!

Now I worry about a couple of PD patients I have met, because dementia is so devastating.

As stated earlier, my husband has never had the resting tremor, although he does exhibit a slight intention tremor, has the stooped, shuffling PD gait, mask-like face and drooling, as well as several other less obvious symptoms. But the dementia is by far the most disabling facet of his disease. While in the hospital, he required a round-the-clock sitter when I was not present. The SNF would not accept him back [after another hospitalization] due to 'behavioral issues'.

Scientist -
Tremors are not required for a PD diagnosis. Something like 40% of those with PD don't have tremor.
Robin

I had no idea that there was PD diagnosis without tremor.

MockTurtle,
Welcome and sorry for your need to seek out the LBDA forums, behavior is a real issue and I found when I came to terms with the fact that my husband really was not in control of his behavior, that it was in fact the illness, things became calmer , the behavior continued but I guess I just better excepted it knowing it was his sickness not the man I married!