EXCELLENT doctors!

[Guest guest]

We had our visit with the neurologist from Beth Israel today and I can NOT

recommend he and his fellow highly enough. I have NEVER been treated with

so much respect and spoken to so openly and honestly without condescension

by any doctor in my LIFE. More importantly, they both spoke directly to Mom

instead of talking about her like she wasn't in the room. My sister and I

and Mom couldn't stop raving about them all the way home. It took three

hours to get there (rush hour) and two hours to get home and spending time

with these two doctors was worth every minute!

We told them we learned about them from a referral from a member of this

group (THANK YOU, NORMA AND VICTORIA!!!) and they asked about the group.

One of the doctors asked me to email her the link to the group and the

information about it so she can refer other patients and their families here

They were extremely knowledgeable about LBD and confirmed all you have all

taught me and were amazed at how much I knew. I told them I learned it all

from you.

Basically, they confirmed that they believe Mom has LBD but, that they

couldn't state it 100% without post mortem test results. I learned so much

today. I finally understand what makes LBD different from Alzheimer's (not

symptoms but the way the Lewy Body's act and are disbursed). They have

recommended getting rid of the Lunesta and the Benedryl and introducing

Seroquel, but they want to wait until the doctor gets Mom off her BP meds

first because her BP was low (105/55) and they don't want to risk the

Seroquel dropping it too low. They also warned us that, at first, the

Seroquel might make things worse so we should do it over a weekend when we

don't have to go to work.

Also, they explained the cause of the " Post Nasal Drip " issue. It has to do

with the slowed swallowing of our LBD loved ones. Apparently, along with

the cognitive processes slowing, other things like blinking and swallowing

also slow down dramatically. As the swallow less and less often the saliva

and other stuff builds up in the back of the throat causing the build up of

the mucus. The were unsure what to do about it since we have already tried

what they recommended and it didn't help, but they are willing to refer Mom

to a great ENT there are Beth Israel who might have some ideas.

We came home feeling satisfied and " sad " isfied. I know you all know what I

mean. I told the doctor that my goal is to keep Mom home until the end and

he was very honest and told me that would be very hard to do. (That was

before I told him I also have a disabled child.)

I'm not sure what the future will bring, but I'm placing it all in God's

hands and just praying He will give me the strength I need to care for both

my Mom and my daughter.

I can't thank you all enough for all you have taught me and continue to

teach me. I pray that I'll be able to do the same for others one day.

(Oh, one of the things I forgot to mention is that they videotaped Mom for

their Wednesday morning " video rounds " . They present patients they have

seen to the entire department staff and chair on Wednesday mornings for

input and confirmation of diagnosis. Among those who will be viewing Mom's

video is the department chair who is a member of the Board of Directors of

the Fox Foundation. I feel she is really in the best of medical

hands now.)

Thank you all again!

Gladys