Hi, I'm new here...

[Guest guest]

I just want to introduce myself and my husband. I'm , and my husband,

67, has been diagnosed with LBD. We have been married for 41 years. For the

past three years or so, I've noticed a social withdrawal, where he seemed

depressed. The one thing he kept doing on schedule was to go to choir practice

on Thursday evenings and he sang in the choir on Sunday mornings. In the past,

he would always shower and shave beforehand. He gradually quit showering, and

became bowel incontinent and lost 50 lbs. about two years ago. I think it was at

that time when his sense of taste became altered. He stopped baking (his

favorite hobby) two years ago. What bothered me most about the bowel

incontinence was that he didn't seemed to think it unusual, and I had to force

him to shower--then he want to put on the soiled clothes. For three years he

has been on antidepressants, all unsuccessful. Although I took him to a

geriatric psychiatrist, this doctor continued to treat him for depression. Last

June he had a stroke, and while in the hospital, I insisted on an MRI, which

showed multiple infarcts, two fairly sizable, which means he has had several

small strokes, and two not so small. His frontal lobe has atrophied somewhat.

So for several months we have been focusing on the stroke diagnosis. A new

neurologist recently told us he has LBD.

Believe it or not, I AM trying to condense this! I must mention that we have

three children, two normal, but one daughter, 35, has Rett syndrome. This is a

severe neurological disorder that affects girls almost exclusively. They appear

normal at birth, but begin to lose speech and hand use between six and eighteen

months. It is caused by a random mutation in the baby's X chromosome, which is

why it is nearly always fatal to a male fetus. Girls, having two X's, survive.

A random mutation means it does not usually appear in past generations, although

in Rett syndrome there are a very few familial cases.

What pique's my interest here is that early on, in the '80's, when we had very

little information available about Rett syndrome, some physicians called it

Infantile Parkinson's. AND on autopsy, there is a finding of depigmentation of

the substantia nigra, (a part of the brain) as also happens in Parkinson

patients. (Is this also true of LBD patients?) Yet, the drugs for PD do not

help at all the RS patient. The mutation in RS is at the MECP2 site and the

protein involved is MeCP2. (I may have these inverted...I'm going from memory

here.) I wonder if there is a connection. I plan to call the LBD specialist at

the U of W here in Seattle and ask him what he thinks, and also e-mail a

researcher or two I've known through my work with the RS association over the

past 20 years.

This is " deja vu all over again " , to be connected with yet another rare disorder

at the very early stages of understanding it. My heart, as you can well

imagine, is heavy, and my caregiving level doubled. Our daughter requires

24-hour care and a few years ago we moved her into a small home we bought near

us, where we have a team of caregivers, including myself. I could no longer

deal with the sleepless nights, and I needed to distance myself from the 24-hour

thing, so I could more clearly seek help and manage her care. I have three

wonderful caregivers who are willing to help with my husband, too. As I may

require back surgery soon, I either have to find someone to replace me, or find

a good adult family home for him. He is heavy and losing physical skills faster

than I'd hoped, and is becoming verbally abusive. We'll try a drug intervention

first, then decide about placement.

Sorry for the length of this. I hope to learn more from all of you in the

future. I'm so glad I found your website.