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 First Time New Person 
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Joined: Mon Apr 26, 2010 6:52 am
Posts: 2
Post First Time New Person
Greetings, I am new to your group. My mother is suffering from LBD and I am the main caregiver for her. I appreciate this site where I can come to get some tips and helps. So far I read your forum entries with tears because I can relate to everything said. Right now the Dr. has taken my mother off of her medication and things have gotten worse physicaly with movement, however the mental problems have somewhat ceased. It seems we can't have both at the same time. We either have better mental with worse physical. Or fantastic physical with the mental gone. I have reached a point where my caregiving has caused physical problems for myself and have had to back off from some of the hands on care. Thank you for being here.


Thu May 06, 2010 8:59 am

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Welcome to the forum, Linda. You will find encouragement, support and information here.

I fully understand about the medications. The meds that improve movement worsen hallucinations and other distortions of reality and those that improve the mental state can worsen the physical state. It is indeed frustrating. My husband is on Stalevo for the Parkinson's symptoms and Exelon patch for the cognitive symptoms. He can't take any of the widely used medications for hallucinations so we just live with them, as most of them are fairly benign--he sees other people all the time but they are not usually a threat. He is still able to walk with assistance and that is very important to both of us. I know a couple of gentlemen with PD who quit taking their carbidopa/levodopa meds because of side effects and they can't even walk any more. My husband's neurologist explained this dilemma to us several years ago--the balancing act between effects and side effects.

Please know that we are all rooting for you! It's an awful disease to have to deal with and those of us facing it need to stick together. God bless you! --Pat
Pat [64] married to Derek [80] for 34 years; husband dx PDD/LBD 2005, probably began 2002-2003; Stage 4. I am his caregiver at home.

Thu May 06, 2010 9:22 am

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Welcome Linda. This is a very caring community of people who are going through or have been through what you are experiencing. Try to take care of yourself through this extremely difficult time. Lynn

Thu May 06, 2010 9:50 am
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