Re: Not new to this group, but 1st posting

[Guest guest]

Hi, Dino, welcome to the group! You'll find it very helpful and understanding.

Even though every patient is different, there are no symptoms of LBD that

haven't been described by somebody on this group. And every little bit of

knowledge helps a lot.

My husband couldn't take Aricept in the higher dose either. He was then put on

Namenda, which worked wonders on him for about 2 years. Maybe you just have to

mention it to her doctor, or maybe he would have a better idea, like the Exelon

patch which has worked very well for some of our friends LO.

May God bless you,

Raquel

[Guest guest]

>

> Hello,

>

> I thought I'd finally post to this group, I'd been reading for a few

> months now. My mom is 75 and was dx with LBD on March 28, 2008.

> Previous to that, she was dx w/PD around 2006. I am 38 and we live

> together in a house we bought in 2003 in Vallejo, CA.

>

> Things are tough. My mom " officially " retired last July but a few

> months earlier finally decided to have total knee replacement.

Sounds

> great but now she has been caught up in the Federal personnel

> bureaucracy as they paid for her surgery...because she got the

injury

> while on the job for them (USPS). So briefly, her retirement $ that

> she has been depositing into during her whole 25yr career with them

is

> on hold as the red tape continues...and now she has LBD. She also

got

> gout for the first time on June 20, 2008, her 75th birthday.

> Additionally, I have not had a permanent job position since October

of

> 2007, our mortgage was just refinanced about 2 years ago!

>

> My mom hallucinates in 3 of her senses; visual, smell & sound.

These

> are in the order of occurrence/severity. She also has cognitive

> impairments which translate into her adamantly believing some of the

> hallucinations are actually occurring. There are about 5 or so sets

> of hallucinations which I am referring to...it doesn't look like

these

> will be leaving our life together any time soon.

>

> My mom takes whole pills or Sinemet & Aricept in the morning and a

> whole pill (25mg) of Seroquel in the late afternoon/early evening.

> She was only taking 1/2 Aricept until we saw her Neurologist on

12/15,

> this is his current try at dealing with her hallucinations. Her

> doctor is quite young, perhaps even younger than I and it seems

Kaiser

> Vallejo doesn't have a strong Neurology department. The only other

> doctor we've seen is Kaiser's regional specialist (=CA) in movement

> disorders (Hayward) but this was essentially too late as my interest

> in seeing this doctor was to question the dx of PD, in case the

> tremors were being caused by something simpler.

>

> So that's a long posting for my first, I'll leave off here & come

back

> later....I really do try to keep a " chipper " state but all of this

> really has affected me as well. Thanks for reading, happy belated

> Christmas & Happy New Year!

>

> Thank you,

> Dino

Dino,

I am new to the group but wanted to tell you that you are not alone.

The out pour of support from this group is amazing. Of course this

has affected you....how could it not. It's hard not to look at the

big picture, but try to focus on one day at a time.

I will keep you and your Mother in my prayers.

Diane

>