Re: Big day for Mom/Rob

March 13, 2008

Hi Rob,

As with all medications and LBD, they seem to work differently and not the same

for all. My husband started the Exelon Patch in November 2007. He is still on

4.6 mg. I am afraid to have him move to the next dosage, because he is in a nh

and they contract in new nurses so often that do not pay attention and do not

remove one patch before they put on another, so that he has two patches on. I

have to reapeat myself several times a month not to overdose him with Exelon.

Anyway, overdosing him with two 4.6 mg patches should not effect him, since it

is less than the next dosage up, but if he was on the next dosage then

overdosing him could have an effect on him. I am leaving well enough alone and

letting him stay at 4.6 mg.

I saw a difference in my husband within 2 weeks, I think it was. It was like he

woke up and noticed the CNAs that have always worked with him and he was

wondering who they were and what their names were. He is not everyday showing

brilliant memory or recognition, but he seems to be more aware of his

surroundings....................Jan

Big day for Mom.........

Hello everyone,

Always enjoy reading the posts, so much useful information. Watched

the video and it was inspiring.

Mom has been on Exelon patch (4.6mg) for 3 1/2 weeks. She is not

exhibiting any of the common sympthoms but is more confused and

delusional. Body seems stiffer and unable to 'sit down.' I think I

read that the patch can take 12 weeks to work correctly, wonder if

we have given the medicine adaquate time. Can not get an appt. until

March 27 with neuro (who took her off Aricept and prescribed patch)

unless a cancelation.

Anyone else experienced with patch??

Good News. Mom signed contract on retirement community today. She

will move in the 31st of March. She was almost her olde' self with

the attention she received today. We have been researching these

possibilities for a year, so hopefully we have picked the faciltiy

that will suit her needs for now. \

This is LPCF staffed with resident dr. and nurses. My mother needs

constant assistance. Being her daughter, I have spolied her these

last few months, so maybe with new caregivers,she may become more

independent. She will be with 8 other residents who are 'memory

impaired' from breakfast to after dinner. They do 'everything'

together. Her face lit up today, which I have only seen when she is

with 'others' besides her family. My Mom has always been a social

creature so today has been a GREAT day.

Of course, she is anxious about the move........so much to do.

Hope to get her 'meds' corrected and simplify her life.

Need patience with Sis..........she just doesn't get it!

My prayers go out to everyone who is dealing with DLB.

Your friend, Rob

Welcome to LBDcaregivers.

March 13, 2008

Dear Rob,

So good to hear from you. It's wonderful your mom has you to care and advocate

for her. Many of our relatives don't, can't or won't " get " LBD. Hopefully your

sister is on the benign end of the scale. My brother holds POA-Property for mom,

meaning pursestrings. He despises her, has no tolerance for the disease and

would prefer, as he so delicately " phrases it, to " put her in a drool ward and

keep the money " for imself. Thankfully, I have POA-Healthcare, which, should a

dispute ever lead to court, trumps Property. I wrote about problem sibs

(certainly most not like my bro) a few days ago, so won't repeat myself. I

simply have no patience for childish issues in the face of the devastation of

LBD.

My mom had a not uncommon experience with Exelon. We thought the Razadyne

she'd been on for 4 years was " wearing off, " and the MD suggested a switch to

Ex. The protocol for starting it and titrating up requires a long while. By the

time we were halfway through, mom's muscles started tightening up, she got more

rigid, and her hands started to claw. We tried lower and higher doses over a

lengthy period. This physical response showed up at all levels. She also became

much more confused and emotionally unstable - also at various doses. When I

learned that the physical responses sometimes aren't reversible, we stopped the

Aricept and went back to Razadyne. Not all folks with LBD can handle all of the

" magic three " LBD meds - Aricept, Raz and Ex. But the clinical literature says

most can handle at least one. Finding the right one is the issue. The MD should

know if your mom's response to Ex is due to not enough time on it, or if the

dose is too high or too low, or if it's

contraindicated in conjunction with other meds or other health issues. While

they are very similar in chemical structure, these meds are not interchangeable.

Could I ask how long your mom had been on Ari and why the MD wanted to change

to Ex? Was she stable on Ari, or was it causing problems? Were there any other

medication changes at the time you switched to Ex? Has your mom been checked

for infection, especially UTI or respiratory? Changes in other meds could be

implicated in the physical and cognitive responses you're describing, and

infections affect our LOs in intense and unusual ways. If all else is the same

- and there's no infection - I'd suggest following up on the Ex matter soonest.

I'm in admin . . . am not a doc or nurse. But, while I appreciate how wonderful

meds can be - they make a decent quality of life possible for my mom - I also

know they are powerful and can harm some people.

Even though your MD's scheduler says no appointment is available now, you have

every right to call him and insist he talk with you/see your mom immediately. It

is his legal and ethical duty to care for her, and these are troubling symptoms.

Be as direct as you have been here and express your concern. Let him know you're

aware of potential risks with Ex and you don't want your mom's status

compromised.

I hope this isn't too " pushy. " I'll keep your mom - and you - in my thoughts

and pray the move will work well for her. It's wonderful she is pleased about it

- the possibilities for socializing in a safe and caring place sound great!

Lin

Janet Colello wrote: