My mother was diagnosed 2 weeks ago. After several years of shuffling and recent memory problems and a surgery for spinal stenosis during which she was given phenergan and didn't wake up for 5 days, we were given the diagnosis by a local neurologist. I felt like I had to scream to get anyone to believe me that she was falling all the time and that she wasn't the mom I grew up with. Her symptoms came and went so quickly that I would pray for a "bad day" on her doctor appointment days. I feel very let down by her primary care doctor who 2 years ago said her shuffling was do to her being overweight (mind you my mom is by no means "a large woman").
I am going though the "maybe the neurologist is wrong" stage.
I feel very overwhelmed. My mom can get around the house ok but can't make it down the isle at church without stumbling and a walk in the grocery store is nearly impossible. Her primary care doctor doesn't want to get her one of the "scooters" because she doesn't want to to stop walking. What do I do?

Dear Maureen,
Good Morning, I am glad you are looking for support for this subject and I am sorry that your Mom has to endure all of this,I would like to send you a couple of sites, you really didn't say how much you know about LBD.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

NEUROLEPTICS AND OPIATES ARE LIFE THREATENING.



DO NOT GIVE:
Haldol, Clozapine, Morphine, Demerol, or any other neuroleptics

or opiates. All medications ending in “azine” may cause neuroleptic

malignant syndrome.


Seroquel, appearing to be the least likely neuroleptic to cause problems,

has made some LBD patients worse, causing extreme

stiffness, dizziness, drowsiness, lightheadedness, vision

changes, and marked increase in confusion. Use with extreme

caution.

AVOID:

Zyprexa

Ativan

Mirapex

Selegeline

Ambien

Provigil

Benedryl



USE CAUTION
Dilantin....extremely careful monitoring of levels is needed

Sinemet....may cause increased dementia, stiffness, and hallucinations

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Here is another good infomation sheet I think to get a feel for this disease.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ http://www.caregiver.org/caregiver/jsp/ ... nodeid=570




I wish you well and if you need anymore information Please write again,your Mother is lucky to have you ars a Health advocate, she needs that, as far as the motorized scooter, it just depends how well she functions, for us byt the time I even thought of it my Husband could no longer use one.

I am so grateful to be able to spill my guts on this sight and I am so glad to be able to read this stuff and learn more. I have been "spinning" ever since I heard the words lewy body 2 weeks ago. I am ashamed to say I am a Physican Assistant who, after 15 years of emergency medicine, am now settling into primary care. I had never heard of LBD. I have never come across someone with the variable symptoms that my mom has either
My mother lives with me and moved in with me 5 years ago primarily for financial reasons. Except for the cats and dogs it is just her and I. My siblings live out of state and want her to visit. Is is common for behavioral stuff to become worse with either the anticipation or actual visitations? She really seems to "loose it" and get much more irritable, forgetful etc.

It is odd but my mom is taking this oh so much better than I am. Maybe she is just relieved to have someone tell her it isn't a matter of self control. There is really something wrong that is not in her control.

Dear Maureen,
I suspect your mom has known for sometime that she was not the same and just perhaps getting a DX is somewhat comforting to her.
You mention that being in the health care world you are ashamed you never heard of LBD, well you are not alone, there are many DR's who have never heard of this, with my Husband we had Hospice and they didn't even know about it, after he went into Hospice house I had to go home and copy research from the internet!
I would like to suggest keeping a daily journal on your Mom, LBD has many ups and downs and one day when needed you will be able to look through the journal and get the answer's you need when asked.
Anxiety is major problem with LBD, the anticipation is great for them, so another suggestion I would offer is to try and keep things very routined and you will see alot of the confusion gone.
I am glad you found the forums also, we all need a place to spout off!