Re: 3rd Time's a Charm?/

[Guest guest]

Hi ,

It sure sounds like you have come to the right place.

Most of your mother's symptoms sound very familiar

along with the rapid progression of them. I wonder if

at any time your mother was given Haldol or Ativan in

the hospital or nursing home. Your observation of your

mother sure sounds like neuroleptic malignant

syndrome. My husband was given Haldol in a hospital,

because he got combative with a nurse. I have it in

his charts not to be given to him, since our Loved

Ones are very sensitive to these medications. During a

shift change, I guess the doctor did not read the

charts or get the message. Ever since the Haldol my

husband has been having seizures, about 1 or 2 a

month. He was nonresponsive in the hospital for about

an hour before coming out of his stupor. Make sure

that these medications are not given to your mother. I

now have a medic alert bracelet on my husband stating

NO Haldol or Ativan. I ordered it from online.

It is essential that you know if your mom has LBD, so

you can make sure that she has the right medications.

AD medications don't all work for LBD, because of the

sensitivities to medications. Seroquel is one of the

best for cutting down on the hallucinations. It

doesn't totally get rid of them, but they are not as

nightmarish and scary to the Loved One as without

Seroquel. My husband is on Sinemet also for the

Parkinsons. Seroquel and Sinemet work against each

other, because Sinemet causes hallucinations, but in

my opinion, for my husband it has helped him be less

rigid and is helpful for him. Others here have taken

their LO (Loved One) off of Sinemet. Also for the mind

many here are on Aricept or Exelon or Namenda or a

combination of two such as; Exelon and Namenda or

Aricept and Namenda.

You will find a lot of information on medications in

the links and files at the Yahoo Health Group Site.

Welcome to this support group, you will find the

latest updates on LBD. Be sure to go to:

http://www.lewybodydementia.org and read the

" Newsletter " of Fall 2005 for all the latest updates.

Jan Colello

--- Ruff wrote:

> OK - going to try this again.. Emailed before and

> the message somehow got lost... (note to self: SAVE

> EM)

>

> My name is . My mother, Maureen, has been

> diagnosed with Vascular Dementia caused by

> mini-strokes (but she was diagnosed with other

> things too - so I wasn't satisfied, did some

> googling and now I'm almost certain that it's LBD)

> Good timing too - she has an appt. w/ her

> neurologist on Monday - so intend to discuss this

> option with him...

>

> Some History:

> I noticed changes going back to about 2001. My

> mother fell and broke her wrist - since then she was

> very cautious about her walking, but it got

> progressively worse. We thought it was due to her

> fall and she being overly cautious. But now looking

> back, when did the caution end and the shuffling due

> to LBD (or whatever) begin? She progressed to

> shuffling w/ the help of a cane by May 2005...

>

> The other change noticed for some years now was

> the personality change. My mother went from a

> dynamic, outgoing individual to a more reclusive,

> fearful one. She has tons of friends, but stopped

> calling/meeting them. Was uncomfortable in large

> crowds - stopped going to the annual family parties

> b/c the crowds were too big.

>

> And of course the " senior moments " that led to

> constant calls asking me questions about upcoming

> doctor appt., etc. No sense of time. " Good days and

> bad days " .

>

> January 2005 - mom & I went to our annual trip to

> Dom. Rep. (tradition since my father passed away in

> 1996) We were together 24/7 and then I really

> noticed the little changes. Figity - can't sit

> still. Fearful - scared to go alone to the

> restaurant to get her coffee. Crying spells in the

> AM - my mother was not the crier in the family, that

> position was held for me. Extremely fragile.

> Stopped wearing deoderant. She had a panic attack on

> the plane. She had hallucinations on the plane -

> looking out the window she envisioned a town - a

> cloud town.

>

> When we returned from the trip we started to visit

> with doctors. She kept passing the Alzheimers test.

> Her MRI showed more white matter... but not an MRI

> similar to those w/ AD. We eventually moved her to

> Mass. General Hospital's dementia unit team - b/c we

> were not happy with the other doctors and they were

> not specialists.

>

> * May 2005 - Mom was living on her own in her

> condo. We got meals on wheels, home health aide to

> help with cleaning, and a life line. Her brother

> passed away and it was very traumatic for her - she

> became extremely depressed.

> * June 2005 - We got companions to be with her

> during the day - to walk with her to church and

> stores so she didn't fall. My sister did her food

> shopping. I started to take care of her finances.

> The doctor tried her on Aricept - which made her

> conditions worse. She was calling me constantly and

> asking me the same questions over and over.

> * July 2005 - After her falling asleep and living

> prunes on the stove and the fire dept. visiting her

> condo we knew she could no longer live alone. We

> moved her to an assisted liv. facility in the

> neighborhood - not dementia unit - more independant.

> She enjoyed that place for 3 months.

> * October 2005 - She was in near hysterics. Crying

> constantly. See my deceased father. Threatening to

> run away - she packed her bags. She wanted to die.

> We got scared and called her Psychiatrist and he

> suggested her going to a hospital to be observed

> (BAD MOVE - we SHOULD have just moved her into

> another ALF w/ a Dementia unit).

> * November 16, 2005 - After 3 weeks in the

> hospital for observation and to receive a number of

> tests and was given 3 different new meds (she was

> taken off some others, others were kept on) The 3

> new ones were Risperadone, Remiron, and Razadyne.

> Mom left the hospital to move into a ALF w/ dementia

> unit. She WALKED into this hospital but had to leave

> in a WHEELCHAIR. We were told it was temporary. She

> hasn't walked since...

> * November 24, 2005 - After a week at the ALF I

> arrived to p/u my mother for Thanksgiving Dinner.

> Found her in the wheelchair - slumped over,

> drooling, limbs all rigid. The nurses never called

> me to tell me this change. She was like this for

> over 24 hours. We immediately brought her to the

> hospital (I thought she had a stroke). They took her

> off all the drugs. The discharge notes were not very

> conclusive. But now I'm thinking she may have been

> victim to neuroleptic malignant syndrome...

> * November 30, 2005 - Moved into a NH for rehab.

> We were hoping she'd get better to move to the ALF -

> no luck. She will now stay at the NH for good. She's

> still in a wheelchair, unable to walk. She is

> constantly moving her right side. Leg up, down, up,

> down. She knows who we are. She can't have a

> conversation. Only yes, no answers.

>

> Monday we're meeting with her neurologist. He

> hasn't seen her since November. I'd like to discuss

> the possibility of LBD. It's the only disease that

> my mother has ALL the symptoms...

>

> I'm glad I found this site. I thought about LBD

> after reading the www.lewybodyjournal.org site, and

> then reading the symptoms of www.lewybodydisease.org

> site. Some relatives feel 'what's the point?' -

> either way it's progressive and no cure. But mom is

> only on Seraquil - maybe other meds would help

> some... It's worth a shot!

>

> Any suggestions? Any observations of my EM? All

> welcome - and thank you in advance for your

> responses!

>

>

>

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