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 New Member From South Carolina 
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Joined: Wed Apr 11, 2012 9:32 pm
Posts: 61
Post New Member From South Carolina
I am so pleased to find a resource like this, to share, and to learn more about this "experience" of life we are going through.

My husband was diagnosed with Parkinsons 14 years ago when he was 64. It was a very slow progression, slow movements, and many other symptoms but very little tremor. We retired and moved to Pawleys Island, South Carolina, 5 years ago. Things began to change, his mobility worsened. Then all of a sudden 2 years ago --- hallucinations, decreased cognition, forgetting words and processes. After a second psychological/cognition test we got the diagnosis of Parkinsons with Lewy Body Dementia last December.

I had never heard of this, none of his Movement Specialists over the years had ever said anything, yet we knew there was a chance of dementia with Parkinsons. Over the past 6 months I have learned alot! And he has declined alot! I have learned that there are no two patients that go through it the same, like no two go through Parkinsons the same. It is a journey, we know where it will end but the path is not clear. We still are able to enjoy going out for walks and we are still able to laugh about alot of the situations you experience with LBD. We refer to his hallucinations as his "Parkinsons people". He will often ask if they are going to eat with us. To which I reply "they didn't help clean house or cook, so no they don't get fed", then he laughs. My new fear is what happens when the laughing stops?

It helps so much to "chat" with others who are experiencing the care giving.


Carol (67) caring for husband Norris (78) diagnosed PD in 1998, dx cognitive changes 2009, dx PDD/LewyBody variant 2011, still at home.

Wed Apr 11, 2012 10:08 pm

Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: New Member From South Carolina
Welcome, Carol! You are so right. Even though we know the destination, the path is far from clear. It is good that your husband is able to laugh with you. Let us hope that cotinues for a long, long time. If his disease has been progressing very slowly it is likely to continue to progress at that pace, at least according to my husband's specialist.

Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012

Wed Apr 11, 2012 10:20 pm

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: New Member From South Carolina
Hi Carol,
Welcome to the LBDA forums and it seems you have been doing your homework, lets hope the laughing never stops, I too joked with my husband a lot and made light of many tough situations and it really did help !
Join us often, I am not sure I know where you are short of looking at a map but I will assume on the east coast of SC, I am way west almost at the NC border. I just checked for Live support groups but I think the closest one is Mt Pleasant but there are a few online spousal support groups if you are interested.

Irene Selak

Wed Apr 11, 2012 10:29 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: New Member From South Carolina
Welcome to the club that no one wants to have to join, Carol! 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.

Wed Apr 11, 2012 10:38 pm

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Post Re: New Member From South Carolina
Welcome Carol! I wrote a whole paragraph that got lost in cyberspace! Anyway, I encourage you to read topics of current interest to you on this forum, in books, etc. As you may have seen already with LBD "expect the unexpected". Some of us have had LOs who have had enormous, overnight declines. Hopefully that will not happen in your case, but it can and does to some of the people with this disease. Cherish all the laughter and good times you are having now. They will help you through the difficult parts of the journey ahead. Sorry you have to be here, but glad you found us! 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.

Wed Apr 11, 2012 10:43 pm

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: New Member From South Carolina
I love the sense of humor you and your husband have about PD/LBD! That will serve you well in the journey.

Wed Apr 11, 2012 11:46 pm
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