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 My Introduction to the Forum 
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Joined: Sat Oct 27, 2012 11:12 am
Posts: 10
Post My Introduction to the Forum
Hi, I am Sandra. My husband Charles is 78 and was tentatively diagnosed with LBD in July. He has had 3 cases of pneumonia, a couple of light strokes, and fell once in the past 15 months - all hospitalizations for a week to 10 days, with one rehab where he broke his leg and ended up staying longer. He is a cancer survivor from 2002, having had stage 3-4 colon cancer. The chemo and radiation took a great toll on his body. His pc doc was out of town in July when he went to the hospital and the on call doc called in a neurologist who evaluated him saying it was either parkinsons or LBD, and leaning toward the LBD. I got very little info from the neurologist and did not really care for her bedside manner. She does not have office hours so we never went to the office to see her PA - just are following with the pc doc who has a very long history with my husband. Charles is on seroquel and namenda and is doing fairly well, but he just cannot seem to recover. His white cell count stays around 1 or below due to RA and treatment for that for so many years (called Felty's Syndrome). The strokes came in September. It has been a very scary process. At the time he was diagnosed he had been having hallucinations, and dreams where he acted out in detail with all the sound effects. Since being on the medicine he has not had anymore hallucinations, but still has dreams but not nearly as bad nor as active. I get up with him everytime he has to go to the bathroom, as he is very shaky on his feet. In fact, I have to be very cautious with him walking with his walker even in the daytime. I can look back over the last few years and recognize definite LBD symptoms, some parkinson traits, etc. I just would like to know about progression and what to expect, others experience with long term use of these meds and any other info you can share. I had never heard about this until he was diagnosed.
We live 15 miles out of town, so this adds more complications when I need to leave him to go shopping, etc. My hair is turning solid white very quickly.

Wed Oct 31, 2012 10:05 pm

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: My Introduction to the Forum
Welcome, Sandra! Probably the best place to start would be the LBDA web site which has a lot of answers to your questions. Then perhaps you could read some of the past posts on this forum. Others will surely step in to respond to your question, as well. I'm sorry you have to be here but glad you found us. God bless!

Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.

Thu Nov 01, 2012 1:22 am

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Post Re: My Introduction to the Forum
Hi Sandra - I'm glad you found us and so sorry for your need to be here. I'd suggest, like Pat, that you read as much as you can, perhaps finding topics on this forum that are most important to you and your LO at this moment. Read as much as you can - there's the forum and there are many good books out there now about LBD. You'll see that you are definitely not alone in your journey as a CG of an LBD LO. Come back often! Lynn

Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.

Thu Nov 01, 2012 7:38 pm

Joined: Sun Jun 24, 2007 5:35 pm
Posts: 349
Post Re: My Introduction to the Forum
Wow, Sandra.
It sounds like you and Charles have really been through a lot.
There is much support here on the forum and much information that will help you. It may feel a bit overwhelming at first, but take it in small steps if you can and you will begin to find your feet as you learn more about LBD. It is different for each family, but many here can offer good practical advice to help you with specific questions.
I am glad you found this site.
Take care,

Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url][/url]

Fri Nov 02, 2012 9:41 pm

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: My Introduction to the Forum
Dear Sandra,
Welcome to the LBDA forums and I know I am bit late with my welcome but I have been away . I do want to mention that whenn you go to the web site often if you put in the search area in the top right corner of the welcome page it will bring up things related to your question.

Good Luck !

Irene Selak

Sun Nov 25, 2012 4:48 pm
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