Re: new member

[Guest guest]

Hi Kathy..Welcome!,this is a great group of people who care and are

understanding,We all suffer with chronic pain and in that we know we arnt

alone,God Bless

fran

[Guest guest]

Hi Kathy..Welcome!,this is a great group of people who care and are

understanding,We all suffer with chronic pain and in that we know we arnt

alone,God Bless

fran

[Guest guest]

Hi Kat, Welcome to the group of big hearts. I'm relatively new myself here

and have learned a great deal in the short time.

pearl

New Member

To: LBDcaregivers

Date: Tuesday, August 26, 2008, 5:47 AM

Hi All,

I have kinda been observing how things work. Here is my intro:

My Mom has been seeing a Neurologist since her hemmoraghic brain stem

stroke in Feb '06. Zolpidem was given during her stay in rehab for a

week after the stroke. She was misdiagnosed with side effects from

medicines and low vision (which causes hallucinations) . She is also

dealing with double vision and balance issues from the stroke. 20

months after the stroke, she had learned to walk and do the stairs

both with assistance. At 86 years young, she told her

Neurologist, " I'm an old lady now. I'm 86 you know. " Clonazepam was

considered the wonder drug that helped control her anxiety and

uncontrollable movements of her left leg allowing her to walk with

little assistance. She has had care 24/7 since her stroke and thinks

I hold her back by not allowing her to walk by herself, " And when are

you going to let these girls (caregivers) go and leave me alone? "

In 10/07 her complaint was a man singing in her head. He didn't have

a bad voice. He just sang the same songs over and over. Neurologist

started with Seroquel then switched to Zyprexa. Mom had problems

walking on these meds and was trying to perform in rehab for her

stroke in order to qualify for more rehab. I chose rehab over the

singing in the head. At this time we could explain away the

hallucinations. She had several bouts with pneumonia all cured at

home with antibiotics. Levaquin was ruled a contributor to her drug

induced hallucinations. A neuropsych eval in 2/08 showed lewy body

disorder without dementia. Neurologist put her on Namenda in 4/08.

She suggested a Geriatric Psychiatrist, who took her off Namenda and

put her on Abilify and Exelon. No mention of the Clonazepam by the

Psychiatrist. I worked to get the dosage up on the Clonazepam to

help with the tremors in her left shoulder and uncontrollable kicking

of her left leg which seemed to be getting stiffer and she complained

that her foot was stuck on the floor (both stroke or so I thought).

I then started the Abilify. I received a call at work that an

ambulance had been called by daycare because my Mother was

unresponsive. The Psychiatrist told me no way the Abilify would

affect her walking. ER said she was over medicated. Hmmmm

Stop Abilify; lower Clonazepam; call Psychiatrist. He pats me on the

back. Now he says Clonazepam is not good for someone hallucinating.

Thanks. Neurologist confirms I should follow the Psychiatrist now

that she is diagnosed. Note to self: time to accept clinical

diagnosis of LBD any more proof will come in symptoms...until death.

Today she is on her second week without Clonazepam. I always hated

that drug. It's not covered by any insurance. Look forward.

Prozac, Abilify, Exelon are the mix of the moment.

Kat

Caregiver for Jane, Mother, 86, diagnosed 3/08 LBD