Re: Medical mystery? LBD?

[Guest guest]

,

Both you and your husband have been through quite an ordeal.

If you are in Northern California, you are welcome to join our LBD support

group. Please email me directly. We have support group meetings in San Mateo,

and a local email list. If you are looking for a chance to support others, you

can let me know what city you live in and I can make some suggestions as to

other LBD caregivers you might speak with via phone.

Has your husband ever had hallucinations? Although hallucinations aren't a

required symptom of DLB, I haven't seen anyone yet with autopsy-confirmed DLB

who didn't have hallucinations. If there are no hallucinations, the confirmed

pathologic diagnosis is either mixed dementia (Alzheimer's and vascular) or

another dementing illness with a movement disorder component (such as PSP or

FTLD).

I understand all of UCSF's caveats. They probably also mentioned that the

diagnostic accuracy of DLB is very low. You can flip a coin and do just as good

with the diagnosis.

Also, did UCSF discuss brain donation with you and your husband? If so, that

would be a terrific place to donate your husband's brain. UCSF's MAC isn't

interested in *everyone's* brain these days...just some. Another good choice

for a brain bank to donate your husband's brain to is the Mayo Clinic. Their

neuropathologist co-wrote the neuropathologic diagnostic criteria for DLB.

Robin

>

> Hello,

> My name is Wild and my husband, age 69, was diagnosed on June 3, 2011,

at UCSF (one of California's top teaching hospitals) with Lewy Body. Although

there were many caveats given before the actual statement(e.g. " We can never

really know until after death with a brain biopsy... " ), the MD felt 's

symptoms could best be described as such. But it is a long and confusing story,

which I will try to make short!

>... 

> Finally we brought him home the end of April, barely functional. Back on

Namenda and with constant caregivers, he gradually improved. By June 3 he was

well enough to travel to San Francisco for the UCSF second opinion. Since that

time, has " held his own " , although at a much lower functional level. He can

walk using a walker, but he is very slumped  He uses a wheel chair when we go

out.  He is occasionally incontinent for urine and needs assistance with all

ADLs. He can be reasonably conversational, but can become confused about time

and place. Probably doesn't follow a story well, but he does a little reading

and definitely knows what is going on politically.  Sometime he seems much

better than other times. He does NOT have hallucinations, sometimes(rarely)

makes noise at night, and doesn't have tremors. ....

>