RE: Is being in pain related to LBD?

[Guest guest]

Pain is definitely a significant problem with LBD. My MIL has LBD with

parkinson's. On her neurologist's advice I give her a gram of tylenol

every 6 hours to help manage it. Sometimes she needs more than this - and

this is where you'll need to work with the doctor more to find out what kind

of pain and what he can tolerate without making things worse. For my mil

what is working for her currently is 1 noreco at night and mirapex .125 mg

for the restless leg pain.

Definitely find out what you can do to help manage his pain better. Pain can

lead to other problems such as agitation, anger, crabbiness, fatigue,

depression - all the sort of things people that suffer with chronic

unrelenting pain might expect to have.

The Exelon patch works great for my mil. I put one on each morning and I

don't see any problems from it. What I did notice is she was much more

" present " and sometimes her old animated self and her wit and humor have

come back and remained.

-Dorothy

From: LBDcaregivers [mailto:LBDcaregivers ]

On Behalf Of rackate@...

Sent: Thursday, February 24, 2011 3:17 PM

To: LBDcaregivers

Subject: Is being in pain related to LBD?

My husband was diagnosed with MCI in December 2009. February 1, 2011, we

were told it is LBD. At that appointment, the doctor told him to start

wearing each Excelon patch for 48 hours. Every 24 hours he takes one off and

replaces it with a new one, so he always has two patches on.

Prior to that his body hurt sometimes, but since that time he is constantly

in pain. Massage, chiropractor visits and the heating pad provide a little

temporary relief.

Does anyone else have experience with this? I was wondering if the pain is

typical with LBD or if it could be from the increase in the Excelon. We are

seeing the doctor again on Wednesday but I thought I'd see what others can

tell me.

[Guest guest]

It would be great if LBD experts/doctors could provide caregivers with a chart

of pain meds that starts from weakest to strongest so that we can give our LO

some much needed pain relief. I feel certain that our LO’s pain is going

untreated and this needs to be addressed.

Courage

From: dsinouye

Sent: Thursday, February 24, 2011 7:04 PM

To: LBDcaregivers

Subject: RE: Is being in pain related to LBD?

Pain is definitely a significant problem with LBD. My MIL has LBD with

parkinson's. On her neurologist's advice I give her a gram of tylenol

every 6 hours to help manage it. Sometimes she needs more than this - and

this is where you'll need to work with the doctor more to find out what kind

of pain and what he can tolerate without making things worse. For my mil

what is working for her currently is 1 noreco at night and mirapex .125 mg

for the restless leg pain.

Definitely find out what you can do to help manage his pain better. Pain can

lead to other problems such as agitation, anger, crabbiness, fatigue,

depression - all the sort of things people that suffer with chronic

unrelenting pain might expect to have.

The Exelon patch works great for my mil. I put one on each morning and I

don't see any problems from it. What I did notice is she was much more

" present " and sometimes her old animated self and her wit and humor have

come back and remained.

-Dorothy

From: mailto:LBDcaregivers%40yahoogroups.com

[mailto:mailto:LBDcaregivers%40yahoogroups.com]

On Behalf Of mailto:rackate%40sbcglobal.net

Sent: Thursday, February 24, 2011 3:17 PM

To: mailto:LBDcaregivers%40yahoogroups.com

Subject: Is being in pain related to LBD?

My husband was diagnosed with MCI in December 2009. February 1, 2011, we

were told it is LBD. At that appointment, the doctor told him to start

wearing each Excelon patch for 48 hours. Every 24 hours he takes one off and

replaces it with a new one, so he always has two patches on.

Prior to that his body hurt sometimes, but since that time he is constantly

in pain. Massage, chiropractor visits and the heating pad provide a little

temporary relief.

Does anyone else have experience with this? I was wondering if the pain is

typical with LBD or if it could be from the increase in the Excelon. We are

seeing the doctor again on Wednesday but I thought I'd see what others can

tell me.

[Guest guest]

Hi,

My husband was on the Exelon Patch and did very well on it. I never let it go up

to the 9.5mg dosage, it seemed to be too much for him and made him confused and

in pain. I requested the doctor to keep the dosage at 4.6mg, since he did best

on that dosage. I could tell if they put an extra patch on my

husband without removing the patch from the day before at the nursing home.

Since they did not put it on at the same time each morning, he was over dosed

with two 4.6 mg. patches overlapping hours and I could really see

the difference

when the dosage was at 9.2 mg just a little below the 9.5 mg dosage, that is

typically given after a month of 4.6mg. I kept him on 4.6 mg., the starting

dosage. He was on 4.6 mg for over 4 years. So, if your husband is on two patches

of 9.5 mg or two of 4.6 mg. It could be causing a reaction and maybe should be

kept at 4.6mg. I found that dosage to be perfect for my husband and he showed a

lot of positive memory with that little of dosage.

________________________________

 

My husband was diagnosed with MCI in December 2009. February 1, 2011, we were

told it is LBD. At that appointment, the doctor told him to start wearing each

Excelon patch for 48 hours. Every 24 hours he takes one off and replaces it with

a new one, so he always has two patches on.

Prior to that his body hurt sometimes, but since that time he is constantly in

pain. Massage, chiropractor visits and the heating pad provide a little

temporary relief.

Does anyone else have experience with this? I was wondering if the pain is

typical with LBD or if it could be from the increase in the Excelon. We are

seeing the doctor again on Wednesday but I thought I'd see what others can tell

me.