Hi,

It's my first time posting here. My mother started having visual hallucinations recently in addition to short-term memory problems she's already been having. She also can hardly walk or raise her arms. I found the LBD website just doing my own research and am pretty sure that's what she has. This Thursday, I'm taking her to a neurologist for the first time. This person was recommended by mom's PCP and speaks mom's language, but I don't know if he's knowledgeable in LBD. Are there any particular questions I should ask him? Mom gets very upset by her hallucinations. Her latest is that she thinks that the people who she's been seeing repainted her apartment. She has an aide during the day, but is usually along at night. Yesterday evening she called me in tears threatening to go to the police to complain about people who repainted her apartment. I immediately went to her and was able to calm her down after awhile. So my main concern is whether anything can be done to reduce the hallucinations.

Thank you for reading,

Marina

I would suggest taking the diagnostic criteria for LBD (on lbda.org) and writing down how your mother meets this criteria. Then ask the neurologist what he thinks. And ask if there's an LBD specialist in the area you live.

What you are describing are delusions, not hallucinations. Delusions are very hard to treat with medication, but certainly worth a try. You can find a suggested treatment regimen from an LBD expert on the LBDA website (Dr. Brad Boeve's "Continuum" paper - do a search for it).

Robin, thank you for your reply. I will print out the DX criteria and check off the symptoms mom has. I see what you mean by "delusions" in regards to someone painting her apartment. But the way it all started is that she often sees people (sometimes lying on top of her wardrobe and looking at her, sometimes on the wall somehow, usually dressed in white). Last night and this morning she pointed out the areas which were newly painted and wet according to her by these "people". She also says that the "people' sometimes show pictures of dogs and cats. I don't much about all this yet, but I think those are hallucinations.

I agree with Robin's advice. An LBD specialist is important for proper management of this disease.
I wish you the best with your mom.Take care,
Pat

Marina,
Welcome to the LBDA forums and I was wondering how your Mom's appointment went?

Thank you so much for asking, Irene! This was mom's first neurologist appointment, so it was very educational, but also emotional.

First, the PA looked over the symptoms form that I filled out and asked more questions about mom's symptoms. Then the PA gave mom a short memory test. She scored 21, which the PA explained was in the mild to medium memory loss range. I knew that mom is forgetting things, but watching her not be able to remember what season it is was painful for me. Both the PA and later the Dr. asked mom to walk for them. Both of them commented on mom's wide stance and hesitancy in walking, but told me that it's not a Parkinson walk. The Dr. was very impressed that I asked about LBD, but didn't feel like he has enough information to DX mom with it as symptoms for other dementias are similar. I brought them mom's brain MRI report as well as carotid sonogram and blood work copies. There was something in the MRI report about an enlargement that could be caused by NPH. The Dr. requested images of the MRI to look at for more information and they did another test in the office. I forget what it's called, but it was sort of like and EKG for the head. I'm going to call in for results of that on Monday. We left the Dr.'s office after many hours with a prescription for some memory med, sorry I don't remember the name, and a referral to a PT who comes to patient's home. The Dr. explained that if he still thinks mom has NPH after seeing the MRI images, he'll do the procedure that gets the liquid out and mom's symptoms might improve.

I have so many things to take care of that I don't know where to begin! I'm sure you've all been there. In the meantime, mom is still very stubborn. She doesn't let her aides stay anywhere close to the full 12 hrs they're supposed to be with her and she won't consider getting a wheel chair even though she can hardly walk. She also doesn't want me to get a night aide despite 'seeing her people' at night. Of course, that means that I'm always on call for sleeping at her place. But as you know, it is day by day. Today was very good! Somehow her weekend aide talked mom into taking a bus to the ocean and mom sat outside for awhile. I think it's the first time in many months that mom went out not to go to a Dr. or food shopping and probably the first time in years that she got on a bus.

rusalka, It sounds like this doctor is doing a thorough job and not jumping to conclusions. That is encouraging.

And the bus ride to the ocean is very encouraging indeed! What all the diagnostic work and the treatment plans are about is improving quality of life. And being able to enjoy simple passtimes certainly contributes to our quality of life! Looking at the ocean for an afternoon sure beats looking at the people on the top of the wardrobe, right?

You are at the beginning of a long journey, and the road is bumpy. But you are off to a good start.

Welcome to our forums.